My Family's Experience with Autism

Potty Training Boot Camp, The Final Day

2012-02-20T20:41:00.003-05:00

Well, today was it. The final day of Potty Boot Camp. Would Music Man prevail? Or would Mommy? That was the question.

Today started similarly to yesterday, so my guard was up. I only had one more day of having him home and having control of what happened. I had to see success. So, after an early accident, I decided we were going to avoid any other morning accidents and after breakfast we would give him extra milk and he was going to urinate in the toilet. So, after breakfast, we went downstairs to play. Big Brother started playing on the Wii. Ballerina took over the iPhone. And Music Man came with me to sit on the toilet. This was 7:39am.

I'm still sore from sitting on the ceramic tile yesterday for over 2 hours. And Music Man doesn't care. He sat down quietly and was willing. I decided that he probably wasn't going to do anything right away (he had JUST finished breakfast), so I gave him a treat.....I offered him an episode of "Bunnytown" on the iPod. I had it resting on my shoulder so he could clearly see it, and I watched him. I was looking for any signs that he was ready to let a stream come out. But nothing came.

The show ended and the iPod went away. I promised him he could have it back, but he needed go "Go Pee Pee in the Potty" first. He was actually pretty happy sitting there. And he kept sitting. And sitting. And sitting. Finally, the other kids and Dad headed upstairs for lunch. Music Man was still sitting on the potty. They came downstairs and Dad gave me a break so I could have lunch (bringing yet more milk for Music Man). Music Man continued to sit there. I returned from lunch and went back to sitting on that ceramic tile floor. Finally, at 1:54, that stream finally came out of that body. And did it go!!!!!! He peed like he hadn't peed before!!!!! So, when he was done he finally got to have his lunch (and his iPod).

Do the math. Go ahead..... Yup....he sat on that toilet for 6 hours and 15 minutes.

Unfortunately, it didn't last. Shortly after lunch he had a couple of more accidents (in quick succession). So, we knew that we needed to try again. So, when everyone (except for Music Man) went up for snack, we went back to the toilet. Again, he would have to stay there until he eliminated. I had quickly run upstairs to take care of laundry (and a few other things), so when I came down, I brought some milk (yes, more milk) and snack for him. We sat down and tried again. I just hoped it wasn't going to be another 6 hours. And it wasn't!!!! It was only just over an hour! And he STAYED DRY until it was time to get changed into pajamas!!!!!

So, we aren't there. But we have made progress. Tomorrow Music Man returns to school. And I am going to instruct them to keep him in underwear, no matter what. I'm sending 8 pairs of underwear and 5 or 6 pairs of pants with him to school. If it is absolutely necessary, they can put a Pull-Up over his underwear, but ONLY if they feel they have no other choice. And hopefully, eventually, we can get him there.

Potty Training Boot Camp, Day 2

2012-02-19T20:32:00.002-05:00

Well, today started better then yesterday. When Music Man woke up, he knew he needed to go into the bathroom and then he willingly allowed me to put on the underwear. So, we're thinking things are looking up. But before we went downstairs, we already had our first accident of the day. So, what will today REALLY be like?

Well, after I noticed the accident, I brought him into the bathroom and had him sit on the potty for a while. During this stint, I heard some drops make their way into the toilet. HOO-RAY!!!!!! That was immediately followed by HUGE praise from me (and Big Brother who overheard my praise) and Dad called from downstairs (also having heard my praise) and we were ready to get Day 2 going.

After breakfast, we realized Music Man was still the same stubborn boy as he was yesterday. By the time I arrived downstairs about 1.25 hours later, he was on his 3rd pair of underwear/jeans for the day. Dad and Big Brother were heading out to see Start Wars: The Phantom Menace (in 3D) and I was left "holding the fort". We had already reached the point where Music Man was being taken to the bathroom every 15 minutes.

Well, Ballerina was her own queen because she was pretty much ignored. I spent all of my attention on Music Man. I quickly realized that 15 minutes still wasn't frequent enough so I reduced it further to every 10 minutes. And each bathroom trip was lasting between 5-8 minutes (per a stopwatch -- I started timing just out of curiosity). Still, we weren't seeing success. We even saw another accident (and a big one at that). So I made a decision.

I was going to continue as I was doing until after lunch. Then when we came downstairs, Music Man was going to come to the toilet right away and he wasn't going to move until I saw a pretty significant urine stream work its way into the toilet.

We finished lunch and came downstairs at 1:10, so that's when the clock stopped. I brought down a bowl full of goldfish and candy (gummy bears and M&Ms). The timer was set to go off every 2 minutes. Each time it went off, if Music Man sat nicely, he would get 1 piece of candy of his choice (Ballerina got into that game as well). After about 45 minutes, I told them each last piece and put what was left (a few M&Ms) away. Now it was time to get serious. Music Man was still sitting on the toilet, but nothing had happened yet. We tried telling stories. We tried singing songs. Finally, I got MEAN. I pushed (hard) on his bladder. Oh, let me tell you, THAT got a reaction. He CLEARLY needed to pee and this was NOT what he wanted. We kept going until 3:35, when FINALLY, a large and strong stream came pouring out of that boy. And did he get praise!!!!!!

He got HUGE accolades from me. He got "High Fives". He got Hugs and Kisses. He got applause. You name it, he got it. And that includes an ice cream sundae for snack (that NEVER happens).

After snack he got finally got to play with his iPhone. He was too excited about that to have me turn on pbskids.org, so I'll save that until tomorrow.

Unfortunately, it doesn't look like he got the message. He didn't wet himself for the rest of the afternoon, but after Dad took him to the bathroom before I went upstairs to get them ready for bed, he did it again. He really doesn't seem to mind when he's wet as long as he's sitting. But when he starts walking around the room, that's when the discomfort seems to set in. I guess we need to keep him moving all the time....perhaps tomorrow, when we notice he's wet himself we'll have him run a few laps before we change his clothes.....

He DOES like to be praised. And he got it both times he urinated in the toilet. I really think we found a key motivator. Now if he only minded being scolded, maybe we'd find a deterrent as well.....

Tune into tomorrow's chapter. That will mark the end of "Potty Training Boot Camp".

Potty Training Boot Camp, Day 1

2012-02-18T20:52:00.000-05:00

Today was the day. The time has come to get aggressive about potty training Music Man. We have been working passively for months (5 months, to be precise). We would have him sit on the toilet at times when we were changing his diaper. But we kept putting him in diapers. He knew that if he just held off, his safety net was there.

Well, no longer. Music Man was up at 6:30 this morning. I had him try to use the potty (he chose to try this standing up) and then on came the underwear. We had talked about this yesterday and he was excited about it. We even talked about it as he was standing in front of the toilet this morning, passing the time waiting for the diaper to be put on so he could release in his own time and way. I selected 2 pairs of underwear last night and left them in the bathroom and had him choose which one he wanted....the choices were Woody (from Toy Story) and The Incredibles. He immediately chose Woody.

Then he realized I was about to dare to put these on his body. He didn't want his tush covered in underwear -- HE WANTED A DIAPER!!!! And one thing Music Man has always excelled at doing, is letting you know when he experiences displeasure. He is big and strong, and he knows how to use both of these traits. He fought me so hard. He was kicking and screaming. If I would manage to get one leg on, he would wriggle his leg out while I was working on the other. But eventually, I won. And I had the same problem when I was putting on his jeans. You see, I decided to be sure Music Man was wearing jeans today because they are EXTREMELY uncomfortable when they get wet. I was hoping this would help him experience that discomfort and help him to learn what we wanted him to figure out.

But eventually he was dressed and after a few moments, was no longer complaining about wearing the underwear versus a diaper. We all did our normal things for the day, but every 30 minutes, an alarm would go off and it was time to take Music Man to the "potty". He learned to recognize this. Sometimes he went happily, almost skipping into the bathroom. But by the afternoon he was tired of it all. We also had increased the potty trip frequency to every 20 minutes. We never saw him urinate into the toilet, either while standing or sitting. We did, however, witness him urinate in his clothes -- 10 times, to be precise. But that doesn't matter. We laid down the law.

Now....motivation. We are trying all sorts of things. We have promised him free time (with no parental interference) on his favorite website. We have promised him movies on his iPhone/iPod even if the timing for watching a movie was inappropriate. We have promised him books. We have promised him candy. None of these have been working. This evening, Dad said something that I suspect he slightly regrets -- he told Music Man that he couldn't have the iPhone or iPod until he makes "water in the potty". And since he said it, he has to follow through.

So, for tomorrow, in addition to the positive reinforcers that we already introduced, we're adding a couple of negatives. We are keeping Dad's word and not allowing him time on his favorite devices (but computer is still fair game, as long as he follows the rules that have been laid out for him). If he wets his clothes (or soils them), he is going to have to take off the clothes himself and put them in the sink (forcing him to handle them). I will continue to sit with him when I take him at 15-20 minute intervals. I will continue to have the water running (something I introduced around 4pm today). I will also continue to tickle him while he's sitting there attempting to urinate, hoping that it will just force SOMETHING to come out (again, something I introduced around 4pm today). I will also follow a suggestion from a friend and pour warm water on his privates to help him relax.

I KNOW he's ready for this. We just have to figure out how to motivate him to succeed. But the most important thing is I can't allow myself to back down and return to diapers. Then we will NEVER get there!

My Head Is Spinning

2012-02-17T13:40:00.003-05:00

Why does it have to be February? Why can't we just go from January to March? It always happens in February. For the last 3 years, my life has been turned upside down during this short month.

That is true for this week, in particular. This week has shown itself to be a bit much. Things keep happening and are getting added to the mix. And today is no exception.

You see, we have Ballerina's placement meeting coming up and I'm getting the feeling it is NOT going to go the way I want. I received an email from Ballerina's teacher earlier today that told me her behavior is getting worse rather than improving. We have an appointment with the developmental pediatrician at Children's Hospital on Tuesday (after potty training weekend with Music Man). I'm going to print out a copy of this note and bring it with me so we can work on addressing some of the specific issues the teacher describes.

But the representative from our school cluster who will make a recommendation of whether or not Ballerina will do well at the Early Learning Center at our home school will be coming to observe her in just 7 days. If these behaviors show themselves during that visit, I strongly suspect that the recommendation won't favor her placement there. I know.....maybe that means that she would be better off in the second setting, but I truly don't believe that is the case. She won't have any NT peer models to emulate. I don't think the class will challenge her. To put it another way, I didn't get that "warm fuzzy feeling" of knowing it's the right place for her like I did when I visited CAPP (her current school) or the Early Learning Center. I really can't explain it very well......it's an instinct. But I have to be prepared to argue that point to the committee. I don't think they are going to take Mom saying, "I just feel it's right for her" if the cluster rep says "No".

So, on top of everything else, I have to work out a strategy to convince a room full of educators that I know where my daughter belongs for next year. I have to be prepared to make my case so that they are willing to consider what I have to say. It may not be necessary (hopefully I will know on 2/24 after the cluster rep leaves) and the recommendation will be positive, in which case, it's pretty much a "done deal".

Why does it have to be February????????

My Experience At Potty Training Autistic Children

2012-02-16T13:45:00.002-05:00

All right -- this may be a bit shocking, but I'm laying out what we've done and what we are about to do. Are you ready for it all?????

For Ballerina, we had it easy. On Mother's Day, 2009 we were giving all 3 kids "Naked Time". Not long -- just 15 minutes or so before getting into pajamas. We used to do this with Big Brother all the time and he always had so much fun. The twins were 3 years 4 months. Dad saw that Rachel needed to eliminate, so he picked her up and carried her to the toilet and sat her down and stayed with her for a minute, not really expecting anything to happen. BUT IT DID!!!!! She both pee'd and pooped in the toilet!!!!! We praised her for what felt like hours and I wrote a note to her teacher asking whether she felt we should pursue potty training at that point. Her response was that for that time, no. And it was getting close to the end of the school year that they wanted to have more time. Well, 2 days later, she sent me an email saying that she did appear ready and the following Monday, I sent her to school with underwear and lots of clothes and they started. They used a modified version of Foxx and Azrin's technique. By the end of the week, she was completely urine trained. A week or so later, she was wearing underwear to bed. She has never wet the bed at night.

Music Man on the other hand, well, he's still in diapers. Since the school year started, we have been making efforts to train him, but he seems to have no interest in it. But he has demonstrated control. He periodically will stay dry all day long at school and it's happening more and more frequently. We have a 3 day weekend coming up. We are going to try to make significant progress.

Yes, President's Day Weekend, 2012 will be about Potty Training in this house. From the time Music Man gets dressed in the morning until pajama time in the evening, he will be in underwear. We will set a timer to go off every 30 minutes, at which time either Dad or myself will take him to the bathroom. He will sit on the toilet (or stand in position if he prefers) and will stay there for a specified period of time. Then the underwear and pants will go back on and the timer will be restarted. If he successfully eliminates, we will bring him to the computer and restore pbskids.org, a website that he LOVES and has forced us to block because he stims on the videos. For 10 minutes, we will unblock the site and allow him to do WHATEVER HE WANTS!!!!!! If not, we'll try again in 30 minutes.

We know we're going to be inundated with laundry. We know that we likely won't see any success on Saturday. Hopefully we'll get some on Sunday. The stakes are also going up on Sunday -- he will have to help clean himself up -- he will have to go into the bathroom, take off his pants/underwear and put them in the sink for me. When they're wet, that will definitely NOT be a fun activity for him, especially if the pants are jeans. But once we can get 3 successful eliminations in the toilet, I think we will have made the leap. But we won't reprimand. We will just keep trying. We'll talk him through it with a calm voice. But once we go to underwear, we can't turn back.

I'm REALLY hoping that he'll be daytime trained by the end of the weekend. I truly believe at this point that we are dealing with stubbornness rather than a lack of readiness. We just have to make him see that this way is much better for everyone. I know, that's much easier said than done. But hopefully, we'll see some positive results.

Keeping It Going....

2012-02-15T20:32:00.001-05:00

In my week of insanity, today is my easy day. I have no specific obligations. So, I'm spending it thinking through some things, including a new potential project. As you may recall, I wrote a post earlier this month where I mentioned that one of my projects has gone away and now there needs to be a new one to replace it. Well, last week, I think I decided what it is. And the nicest part (at least as far as my wallet is concerned) is that this will be a job!!! Yes, I'll get paid to do what I want to do, assuming I can make it work. It's going to require some planning though. You see, it means starting up a business of sorts. But I need to find premises, and determine what my overhead will be. Then I have to figure out how to advertise so people know this is happening.

But I'm really liking this idea.

You see, I recently asked a question on the Facebook Page that I run.....Would you be willing to join a support group for families living with autism if the "leader" of the group didn't have professional training? My "training" is as an Autism Mom. I know how to do research. I know how to determine what makes sense and what doesn't. And I make informed decisions even though I may question if those decisions are wise after the fact. But I have no background in social work or clinical psychology. Even though I majored in psychology in college, I focused on developmental psychology and cognitive development. I never took any classes in clinical psychology. Overall, people said that they would prefer someone who dealt with it as a Mom daily rather than someone who just had the education behind them.

So, now I'm pursuing this. It's a good way for me to use this new passion in a way that can help others and still satisfy my interests. The commitment for me would be to run and organize the group (or maybe groups if this venture really grows) and to research ideas for discussion. If people have questions that cannot be answered at the time, I can do the research for them and fill them in the next time we meet. And I can keep my self-appointed title of Parent Advocate.

My husband is also supportive of this project, which doesn't always happen (he feels I have a tendency to over-extend myself [and he's right]). He likes the idea that I can take what I do naturally and turn it into something like this. He has offered his services to help advertise (he's gotten quite good at using publishing software) when the time is right. And this is a project that I can control the specific hours that I will be involved so I can continue to meet my existing obligations.

Now I just need to find time to catch my breath so I can figure out how to make this happen.

Happy Valentines Day!!!!!

2012-02-14T18:29:00.002-05:00

Happy Valentines Day!!!!! I got to spend the day with my adorable Music Man. We had a few errands to run and then we got to spend the rest of the day relaxing. You see, he didn't have school today. It was a day for "Professional Development". I don't begrudge the staff for taking the time for this -- they deserve it and it will help my son. I just wish it wasn't happening this month. But we made sure we had a fun day!!!! And it was nice to get to spend the day with just him and have it not be due to him being sick.

First we had errands to run. We needed a few things at Target and I managed to find both him and Big Brother new sneakers. Big Brother is SO HAPPY with the new ones that he wore them for about 3 hours after coming home from school. Music Man on the other hand.....well, let's just say he doesn't like shoes much. I was able to force one of them on his foot and determined that the fit seemed good. Tomorrow morning as he's getting ready to leave for school, we'll get them both on. If they aren't working, I can return them. I made sure of that before making the purchase.

But the main reason we went out was so that he could get a haircut. Music Man is overdue.

So we went to a place specializing in kid's haircuts. They know us there and know of the issues we face with Music Man's haircuts. We gave him some time to get used to being there and eventually got him to the chair and gave him a quick buzz. He kept his ears covered the whole time, asking "Are you sure?", but he let her do it. This goes down as a success.

After coming home, I decided to give him a break. So, he played with the iPhone for a while and I just let him go. Then early this afternoon, we tried our first home-based piano lesson being given by me. It went all right. He isn't used to me teaching him like that but we went back to the "Music And Me" philosophy which I think was more his style. Hopefully he'll get used to it and we can allow him to make some progress until he's ready to return to more formal lessons.

It was a very nice Valentine's Day for me and Music Man.

Another small vindication

2012-02-13T20:31:00.002-05:00

Today was Music Man's visit to the pediatrician for his annual physical. We suspected he was in good health, but it's important to be sure that things aren't missed. Going to the doctor is a bit of a challenge with Music Man. We have found ways to make it work (well, at least make it more tolerable), but it's still something that I'm glad we only have to cope with not much more than annually.

First of all, this time I started at a disadvantage. My social story for going to the doctor has disappeared. I knew when I upgraded "Stories2Learn" on my phone that there was a chance of that happening, but I made sure to back it up so that I could have it, at least on the computer if not in the phone. But I can't find it anywhere. So, for the first time in probably 4 doctor's visits, I didn't have that to help prepare him. I should say that I need to create a new social story anyway -- that one is out of date. Our pediatrician has changed offices since I made it and several pages of the story are now literally inaccurate.

But he knew where we were going when we got off the highway. He started saying her name. I told him we were going to the doctor's office, so between the multitude of cues, he recognized our destination. We parked the car, walked across the parking lot and then walked into the building. Music Man made it very clear he did NOT want a ride on the elevator, so we took the stairs. We found the office, checked in and sat down to wait in the waiting room.

We get to know waiting rooms quite well. You see, Music Man doesn't like going to the doctor. But he doesn't mind the waiting rooms. He finds ways to keep himself occupied. So, we tell the staff to not bring us back to the exam rooms until we know we can be in and out quickly. We would rather wait for her in the waiting room than in the exam room. And they learned this as we did, so they are very willing to give Music Man that option. We even did some of the assessments in the waiting room. The nurse listened to his heart, checked his temperature and even did a vision test while we were waiting. The vision test led to a question of whether we need to see an ophthalmologist (he was very uncooperative and we aren't sure if he was just being stubborn or if he couldn't see the chart from 10 feet).

The consequence of waiting for the doctor in the waiting room rather than in the exam room is that I tend to get frustrated. Our appointment was for 9:30, for which we arrived approximately 5 minutes early. We didn't leave the waiting room until about 11:15. We saw many patients come and go while we continued to wait. Music Man was fine. I was getting antsy, frustrated, and anxious.

But when we did go in, as was promised the doctor was in the exam room waiting for us. Music Man went in with minimal complaints (with his iPhone in hand) and we were able to conduct the exam. He didn't like it when she tried to check his eyes or ears, but otherwise was a reasonably good patient, as long as we didn't try to take the phone away. He even allowed me to have a short conversation with her without insisting we leave. THIS is new. She was so pleased to see the progress that he has made since she saw him in September when we were there for his immunizations.

So, everyone who sees our Music Man sees the progress!!!!! It's so nice to know that I'm not the only one noticing the positive changes that are happening and it points out to me just how far he has come. Whatever piece was missing seems to have found its way into that oh-so-smart brain of his. It feels so nice to be vindicated in this way. And it's the type of thing that I truly hope will continue.

Too much going on.....Time to get my head around it all....

2012-02-12T18:33:00.002-05:00

I'm posting here because I need to put it down on "paper", so to speak. I really need to stop and take a breath right now. Tomorrow Music Man is home from school because he has his annual physical in the morning and on Monday's his program ends at noon. He'll also be home on Tuesday because his program has no school that day (professional development, I suppose). We are preparing for placement meetings for kindergarten (x2) at the end of the month and beginning of March (I think). Ballerina has her annual physical on Thursday morning, but assuming she's happy, I'm taking her to school once it's done so I can get some things done. She also has an appointment with the specialist next week which will be an all day affair. And we're planning on potty-training Music Man next weekend (since it's a 3-day weekend and he has NO plans). These things are on top of my other obligations. My stress level is through the roof. My head feels like it's going to EXPLODE!!!!!!!

This is a modified post of what I put on a Facebook Group I am in. After typing it all out, I realized I needed to sit down and write a blog post. That always seems to help me get myself more organized and get some perspective.

Everything I said in that first paragraph is true. All of these things are happening this month. We had the two school visits that I wrote about previously. We have heard the recommendation for Music Man, but Ballerina hasn't been seen by the cluster representative so we don't know if she will get the "green light" to enter the Early Learning Center (however, it seems that a negative response doesn't carry the weight of a positive one). And to make things more stressful, Ballerina decides that this is the perfect time to develop Pink Eye so she was home from school on Thursday and Friday and we made a "quick" visit to an urgent care clinic since we couldn't get an appointment at a convenient time with the pediatrician. Seriously.....my head is just POUNDING!!!!!

The truth is, this month really doesn't contain much more than any other. It just seems that way because of these few extras. And this placement meeting is really weighing on me. It seems so important. I know that if we decide the placement isn't correct, we can work to make changes so nothing is completely concrete. But it still feels that way. If we as a team make a decision that turns out to not be in their best interests, we can do something about it. And considering that the Early Learning Center is in our home school (the school they would be attending if they weren't classified as "special needs"), we have told that both our kids "have priority", should we need to transfer in during the year.

I am trying to live in the moment. I can't spend their lives wishing time to pass because we are faced with a deadline. This month is the first time in quite a while that I find myself thinking this way. But I need to stop. We are seeing a HUGE explosion in Music Man right now. And Ballerina continues to amaze us with her pixie-ish ways.

I need to stop worrying and realize that we are all doing the right things. There isn't a single day between now and Music Man's meeting that is completely overwhelming -- it just seems that way when we put it all together. So, I need to stop putting it together and take it one day at a time -- one event at a time. This week we have the 2 physical exams (and we'll squeeze in a haircut at some point) and Music Man will be home from school for a couple of days. There.....doesn't that seem easier?

We'll deal with the next chapter when it comes.....in just 5 days......

Elated

2012-02-08T16:27:00.002-05:00

Today when Music Man got off the bus, something was strange. There was something in his step. Then I noticed it. Tooth #2 was GONE. After checking I saw it came out cleanly (wasn't knocked out as in a collision or a fight). For the second time, I didn't even realize the tooth was loose. But apparently he did because he was happy. But I didn't know the half of it.

10 minutes later, I received a phone call from his school's administrator. She started the phone call by asking me if I "Wanted to be happy". You see, a representative from our cluster (our school-based learning center I wrote about in last night's post) came to determine if Music Man was a good fit for the program. She may have been looking at other kids in his program....I don't know. I knew this assessment was happening today, so I knew what she was going to say. Apparently, it is a bit of a stretch, but given the breakthrough that we are seeing in Music Man right now, the representative feels that he would be a good candidate for this program.

Can I hear a "HALLELUJAH"!!!!!!!

Now, before we get to excited, I have to remember several things. (1) A recommendation is not the same as an official placement. It supports a placement to the school that I desire for him, but his actual placement will be determined in his placement meeting. (2) This is for one twin. Ballerina will be evaluated later this month and, even if the recommendation is favorable, again it is not a guarantee that she will be placed there.

But the realization that someone who had never seen Music Man before today thinks that this program is the best placement for him constitutes a HUGE victory for everyone working with him. And it brings me closer to my goal of them both able to handle being placed in a mainstream classroom environment by the time they leave elementary school.

I'm taking this victory and smiling the rest of the day!!!!!

My Personal Conclusions

2012-02-07T18:54:00.000-05:00

As I've mentioned numerous times, we are preparing for Ballerina and Music Man to leave the preschool world and enter kindergarten in the fall. We are fortunate that we live in an area that offers several programs for young students with autism. And, in order to be prepared for their placements meetings, we have visited 2 such programs.

The first one we visited was a school-based learning center. This is what I had always thought of as "Special Education" growing up. It is a program in a typical school that addresses the special needs of its students. There are opportunities for mainstreaming. Early on, these opportunities are designed to be during specials (gym, art, and music) as well as lunch and recess. As they grow, more time will be incorporated into the day. Additionally, if students can handle the experience, there are opportunities for them to spend additional time in a typical classroom, just without the added supports that they are currently accustomed.

We are fortunate that our "cluster's" learning center is located in our own home school. This means that it's the school that is just down the street from our house and the school that Big Brother has been attending for the last year-and-a-half. I am involved in this school's PTA and volunteer in Big Brother's classroom weekly. I'm recognized by many of the staff, especially in the office, and have gotten to know several other members of the school community. This is all a good thing. Additionally, I have taken the opportunity last year to speak with the kindergarten teacher to learn what is expected of her students when they enter this program.

Both Dad and I left with the impression that both Ballerina and Music Man would succeed here. We weren't certain at that moment if this was an ideal placement for them, simply because it was the only program we had visited (to date) and just had nothing to compare it to. For Ballerina, there was still one more program to consider. For Music Man, there was at least one more, possibly a third.

Today, we went to visit that second school. This school is also an academic program, but unlike the Learning Center I described a moment ago, that's part of a standard school, in this case the entire school is special needs. This bothers me. How can they learn to interact with typical peers if there are no models and no opportunity for such interaction in a school setting? But we visited anyway, knowing it was a strong possibility for Music Man and a decent possibility for Ballerina.

This school is NOT near our home. It took a good 30 minutes to get there after rush hour had ended. If either child would be attending this program, they would be heading over there during the extended rush hour for this area which means the commute would add upwards of 2 hours to their already long day. But Ballerina has had long bus-rides in the past. So we knew that shouldn't be a deal-breaker.

The tour of this second school was very interesting. Every classroom has a "Promethean Board" to be used as a learning tool. Additionally, in every classroom there is 1 teacher and 2 para-educators and the class sizes are anywhere between 6 and 10 students -- in the other school program, it's 1 teacher and 1 para-educator for upwards of 12 students. There are more opportunities for hands-on work. There is always speech pathologists and occupational therapists on-site.

But something else disturbs me about this school. It is an academic program so they wouldn't fall behind and would meet the minimal criteria to pass each grade level, but academics is not necessarily the emphasis in the classroom. They work on behavior modification and life skills as well. This really isn't the case at the other learning center. At the school-based learning center, there is a far more academic focus.

My children are very intelligent. They prove it to me over and over again. They are manipulative, endearing, challenging, and autistic. They surprise us nearly daily with the many things that they can do. I want to push them to be all they can be. I know that seems strange to say when we're talking about kindergarten programs, but because of the issues they will face as their academic careers advance, they NEED a program that will push them now so that they can face the challenges that lie ahead.

I truly believe, sitting in this chair this evening, that both of my children belong at our home-school's learning center. And Dad agrees with me, not because I told him to but because this is the conclusion that he reached based on visiting these programs. They should be placed there because I believe this program will challenge them but is still restrictive enough to address their many needs. And by being in an academic environment alongside typically developing peers, it will give them the opportunity to learn to successfully interact with them. Because when they leave elementary school after completing 5th grade, if they are going to continue in an academic program, they will need to do so in a mainstream setting, unless things change before then. I also want this to happen for more selfish reasons. If this does occur, all 3 of my children will be in the same school. Ballerina and Music Man will be back together, just as twins SHOULD be (in my opinion).

I hope that the team of teachers and educators agree with us. I welcome discussion because that will most often lead to making the best decision for the kids. But, in this case, I want us to start on the same page. What a success story this would be!

When it gets to be too much

2012-02-06T10:24:00.003-05:00

I have a confession to make. I am the world's biggest push-over. I can't say "No" to a project. I can't turn down an opportunity. And I will bend over backwards to make it work.

There are so many things that I do. First and foremost, I'm a mom and a wife. I take care of our children and this house (well, the house is a bit of question -- I easily and repeatedly surrender to the power of chaos that rules this house [except laundry -- I WIN over the laundry!]). I blog here and for The Germantown Patch regularly. I write guest posts on other blogs periodically (including SPD Blogger Network, Multiples and More, Oxygen Mask Project, etc). I run an autism-based Facebook page. I volunteer in Big Brother's Classroom. I'm the Volunteer Coordinator for the PTA at our home school. Big Brother is a Tiger Scout and I'm the adult partner that attends meetings and (most) activities with him. I work with Music Man and Ballerina on their piano and dance -- helping them practice, making sure they are prepared for their classes, etc. I am now taking over completely for Music Man as we have decided to not continue his structured classes as he didn't seem to be gaining anything from his classes for right now other than him "sticking out" because of his behaviors and other quirks.. Plus, I do all the other activities that are required of an Autism Mom with two different kids on the spectrum -- there are IEP Meetings to plan for and attend, there are schools to visit, there is always more research to be done, etc.

A few months ago, another Autism Mom presented me with a project she was starting. We had a few discussions, and it sounded like a great idea and something that I wanted to get involved with. She was going to do most of the work (as it was her brain-child) and she had the ability to get it done. My commitment to the project was (relatively) minimal. She needed my availability, in the form of about 1 hour of my time once a week so we can have a couple of conversations. Each of those conversations would require a little bit of research, so I would probably be putting in upwards of 2 hours per week. Not bad....especially since I can do the research on my own time and combine it with my normal everyday research and have a set time to sit down that we mutually agreed up to do the actual conversations. Unfortunately, we have been unable to get together to get this done.

So, it has been decided that I'm no longer involved with this project. I'm a bit saddened by it, but not completely. You see, one of the reasons for this is I had reached a breaking point on Friday. With all those things I do, it's not surprising that eventually I hit one of those. And that breaking point was directly related to this project. I'm still not fully over it -- I don't get truly "ANGRY" often, and this time I was way passed angry and well into the "SEETHING" range. Was this breakdown avoidable? Possibly. It depends on whether I would have reached this point if I wasn't already stretched beyond my abilities, and whose interpretation of the facts is actually more reliable. But one project is now off my plate.

So, what will I find to replace it? Because I will find something. That's just the way I am. There is always something else that I can do. Perhaps this time it will be something that I will be paid to do. Or, maybe not. First, I have to find that project. Here new obligation that I have no time for......what and where are you????????

Time to "Be Prepared"

2012-01-31T20:49:00.000-05:00

I thought that was a fun title for this post as Big Brother is a Tiger Scout and one of their den rules is "Be Prepared" (in preparation for becoming a boy scout in several years). But now it's my turn. We are approaching a major change in our child-raising experience when it comes to autism. And, because of the timing of various things, the time has now come to start preparing myself.

I am speaking, of course, about Ballerina's and Music Man's imminent entry into kindergarten. It's coming in September, whether we are ready for it or not. That's 8 months away. And decisions need to be made. We need to figure out what programs are best for them. We need to determine what areas we need to focus on to allow them to be successful as their school careers advance. And that decision-making process begins this week.

Yup.....on Thursday, Dad and I are going to visit the first of the recommended programs. We will visit another next week. This one is the one that I'm hoping will be the best fit for Ballerina. It's a special education program in our home school. The teacher's reputation for working with her students cannot be questioned (although parents often seem to fear her). The students are blended with their typical peers for specials and they share lunch/recess together as well. There are further mainstreaming opportunities if it is appropriate for each student. And this program has been my target, initially for both of my kids (Music Man's ideal placement is not in this program, however, per his teachers).

However, this is a HUGE step for my Ballerina. One of the benefits / detriments to her current program is that the teacher:student ratio is 1:1. She is used to having a teacher or para-educator beside her every moment of the day to help her, even though they have been trying to encourage her to do things independently. This will NOT be true in kindergarten, regardless of which program she is to enter. This is going to be hard for her to take.

I also have been hearing things that are happening in the school that makes me nervous. I have concerns about bullying, in particular. I'm not too concerned about this at the kindergarten level -- everything I hear affects children in the older grades. But I have to figure out how this is handled and how I can be on the look-out for my children to be sure they aren't victimized. I don't want to see all of their progress fade away because I have this dream of them to be just like all of the other children.

I also have to, once again (just as I did 2 years ago), remind myself that Ballerina and Music Man are two very different children. They are both smart and lovable. They are both autistic. They are both my children. And they are twins. That's about it for their similarities. Their needs are very different and what I need to consider for each will have to also be very different. It's still possible that the same program may suit each of them, but I have to be prepared that I will not have all 3 of my children in the same school as I was hoping to see this past September.

Either way, a placement decision for Ballerina is currently scheduled for February 27. This is why we need to consider these programs now. And, since we are considering them for her, we need to consider them for her brother as well. Time will tell what we choose to do. Let's just hope that I can make my own decision, that Dad and I agree, and that their respective teams will also support that decision. But I know to listen to what they have to say and to keep an open mind.

Here we go again!!!!!!

The Oxygen Mask Project

2012-01-25T12:56:00.000-05:00

When we board a plane, we all have to sit through the instructions of what to do in case of emergency. When the oxygen masks drop from the compartments above our heads, we are to secure our own before assisting those around us. However, as parents, we don't always employ this philosophy to our lives. We put our children's needs first. Our family. Our home. And, as special needs families, that philosophy seems to be magnified. Our children need more. Therefore, we give them more. And where does the reserve come from? Ourselves.

Well, there is an ongoing objective to try and change that mindset. I am speaking of The Oxygen Mask Project. Through both their website and their presence on Facebook and Twitter, they are trying to convince parents to take some time for themselves and address personal needs as well as the needs of their children. For some, these can be as big as taking a vacation without their kids. For others, it can be simply visiting a doctor to address medical issues, or the avoidance of such issues.

I have been guilty of neglecting my own needs for a very long time. I have a chronic medical condition that requires regular monitoring that I haven't addressed in far too long. I also haven't addressed my vision in a while, leading to me wearing my back-up pair of glasses for the last 2 years (which Music Man decided to bend the other day). Everything I do has become about my children and about autism.

I need to do something about that. So, I have decided to join with the Oxygen Mask Project. I am going to try to find 30 minutes of every day just to do something for ME. It can be as simple as going to the doctor. Or taking a walk. Or a drive. Watching a program on television that suits MY interests. I need to start trying to remember who I am again. This is something that I have lost over the few years. I've become an "Autism Mom". It's fine for that to be a part of how I define myself. It's a problem when that becomes HOW I define myself.

So, I invite anyone who reads this post to join me. I'm not talking about huge commitments. I'm just saying for a few minutes every day, just something that you do for your own personal benefit. I've already realized that it's not as easy as it sounds. Who here considers themselves up to the challenge?

The Day Has Arrived!!!!!!

2012-01-16T18:19:00.000-05:00

So, I've been talking about planning the twins' birthday party for a while. Well, yesterday (Sunday) was the day.

They woke up excited and looking forward to it. They even took the change in routine and enjoyed their baths so they would be as fresh as possible for the party. Daddy had already finished decorating the cakes (but Music Man had already damaged one of them) but we were still nervous. We were expecting (at that point) 10 kids (including my 3), all but one with special needs attending a party in a gymnasium (that's designed for young children). There would be noise. There would be meltdowns. Would everyone have fun? Would Ballerina and Music Man (in particular) enjoy themselves?

We have an early lunch and arrive at the gym about 5 minutes before the party is scheduled to begin. Ballerina is so excited -- she can't wait to get into the gym and start playing on the climbing wall or swinging on the rings. She's slightly disappointed that the air track isn't already inflated, but accepts what's there readily enough. (Note, the air track is like a bounce house without the house -- just a large mat filled with air that is bounced upon, with a constant stream of air to keep it inflated -- it is typically one of the more popular things that they have at The Little Gym.) Music Man is a little more apprehensive right now. He is allowing himself to get ready for the gym, but he doesn't rush in with gusto like his sister.

The guests began to arrive shortly after. A little boy came in and when he saw all of the equipment, he couldn't explore fast enough. He was chewing on a piece of Chewelry and really having a lot of fun. Then a couple of other kids arrived. Somewhere in this, Music Man also joined us in the gym and was playing on his preferred apparatuses (with Laurie Berkner Band music playing in the background). Before long, the party began. They sung Ballerina's favorite version of "Happy Birthday" and then the fun was on!!!!! They sung and danced. They explored. Sometimes kids stayed with the basic group. Other times, they wandered around to explore new things. They blew bubbles (Big Brother helped with that). They played more and more. And there were no meltdowns. And I mean ZERO meltdowns, not only by my kids but also the other 5 children there who are on the spectrum (there were 2 no-shows). Music Man really didn't want to join in with everyone else, but he did everything -- just on his own.

Then it was time to pull out the air track.

This was what we were most worried about. Like I said above, the air track is like a bounce house which means there is a constant heavy flow of air. In other words, IT'S LOUD!!!!! I warned the parents ahead of time that we were doing it and pointed out some places within the gym that don't seem to be as loud, or invited them to step out into the waiting area. One of the parents decided to take me up on that offer and stepped outside the gym. Music Man couldn't get away fast enough. He went into the waiting area and found things to do there and refused to have ANYTHING to do with the air track. But everyone else sat on the white line across the middle of the track and were ready to ride it up. Ms. Katie, the party leader, threw the switch.

Yup, it was loud all right. But you know what? NO ONE WAS BOTHERED BY IT!!!!! I reached over and opened the door so the two boys who were in the waiting area (including Music Man) could become accustomed to the noise. The other boy came in after a minute or two and kept calling it "Vacuum". And you know what? That's a PERFECT description of what it sounds like -- a loud vacuum. I had never thought of that before.

These kids jumped. These kids bounced. Big Brother, who attends one of the advanced classes at this gym, demonstrated his flips (and he's really good at them). He also showed everyone how to do handstands and forward rolls. And the kids just jumped. And bounced. And laughed. And crashed. And got back up and did it again. THEY WERE HAVING SO MUCH FUN!!!!!! I couldn't take enough pictures. I couldn't believe it!!!! Not in my wildest dreams could I imagine this going so well!!!!!!

The only part of this I wasn't 1000% happy about was that Music Man wouldn't join in. He had decided he wanted NOTHING to do with the air track and no one was going to change his mind. However, after the air track was done, Ms. Katie came out and talked to him and he came back into the gym to help stomp the remaining air out of the track. No one else had been able to convince him to come back. Not me, Dad, or his grandparents. But Ms. Katie did it!!!!!

Then it was time to start quieting things down. We finished the party in the gym and then headed to the party room to enjoy the cake. Even there, the kids were all so good!!!! Everyone was offered some cake and they were allowed to choose which one they preferred (standard yellow cake mix in the shape of a princess or a chocolate GF/CF cake in the shape of a piano keyboard). In some cases, the kids chose for themselves. In others, the parents chose for them (there were 2 kids there on a GF/CF diet).

When all the kids left, Dad, Grandma, Grandpa, and myself were all just standing there in awe. It was done!!!! And, most important, IT WAS A SUCCESS!!!!!!!! There were only 2 meltdowns throughout the party, neither with my kids. And the mother of the child who had those meltdowns had them easily controlled and they were very short-lived and the boy still thoroughly enjoyed the party. In the meantime, all the parents who were there didn't think twice about it making the mom uncomfortable -- we have all been there and were expecting it from our own kids.

But my twins had a birthday party. And they had a birthday party that we can look back on with fond memories without any disappointment.

The Piano Recital

2012-01-14T21:57:00.002-05:00

Today was Music Man's piano recital. It's been over a year since he started at The Academy of Fine Arts and he's performed in front of his own class numerous times, but this is the first time he has performed for a group of strangers. What was going to happen.

Well, the recital was at 5. His class was from 3-3:45. I made the decision to stick around and just wait for the 75 minutes between the end of his class and the start of the recital. I had my iPhone, hooked up to Netflix. Party Day is in our "Instant Queue". That would buy us 38 minutes. And then he would be able to play games on the phone.

Turns out it was a wise decision. He didn't have a particularly good music class. But after taking the time to de-stress, he was ready for the new experience. We practiced on the different piano and I could already tell he was more receptive than he had been for a while. Then the recital started.

He listened to several other students, including a classmate or two. When one of his girl classmates was playing her selections, she made a mistake but didn't realize it. Music Man DID. Uh, Oh!!!! Meltdown forthcoming!!!!! But no. He just stopped rocking to the music and looked at me as if to say, "That's not right!". He listened and when she finished, he applauded with the rest of the audience.

Then it was his turn.....

All right -- his performance was completely done as "hand over hand". But this is how he is normally. He allowed me to guide his hands. There was no fuss. He just wanted to play the "Happy Birthday Song", but was willing instead to play the expected "Hide and Seek". And the bows continued long after the camera was turned off.

He was proud of himself. And I was proud of him!

It was 5 years ago today.....

2012-01-12T20:56:00.001-05:00

This post has nothing to do with autism. It has to do with the change that happened in my family's life 5 years ago today. This is my take of Ballerina's and Music Man's birth story, written about two weeks after they were born. That's where our journey with them began, and I wanted to share it here.

-------------------------

I woke up on Friday morning (January 12) shortly after 4AM, convinced that today was the day. Between then and 5 I noticed about 4-5 contractions but they were really weak. Then the contractions seemed to have stopped. I was exactly 34 weeks pregnant that day.

By the time my husband was getting ready for work (around 6:30), I was 100% convinced that, even if today wasn’t the day, my OB was going to send me to the hospital. I was checking to see if he had to go to the office – did he have any meetings? Was there anything that REQUIRED him to be there? Those kind of questions for him. He seemed to blow me off, but I later realized that he was just doing things in the office that was quick until I told him he needed to leave. He was actually telling his co-workers that he left the “crazy pregnant woman” behind. He later ate his words…..

Well, I was right – the OB sent me to the hospital after the prenatal visit for monitoring. She did mention that she didn’t think that it was going to lead to anything, but they just wanted to be sure. I told Kevin not to come to the hospital yet – I would call him as we learned things throughout the day. Well, my contractions at this point were 2-3 minutes apart, and I was hooked up to the monitors in the hospital. An hour later, they give me fluids to slow things down. An hour after that, they start giving me shots of tributiline (sp?). Contractions are still coming. Because all u/s results have been good and the likelihood of stopping labor was becoming increasingly lower we decided (as a team – my OB, perinatologist and myself) that we should do the section that day. So, I called Kevin to inform him he needed to come to the hospital.

5 hours later they finally bring me into surgery. Because I wasn’t an emergency I was bumped 3 times and then there was an administrative issue that led to further delays. But, I finally walked into the OR preparing myself that I was going to have 2 more babies that were going to be living in the NICU for at least 7 days (hospital policy is no baby born before 35 weeks is to leave the NICU).

The surgery went well. The OB asked me which of the two I wanted to be born first since their positions allowed them to make the choice. Since the girl was always thought of as Baby A, I asked them to deliver her first. At 8:26pm, I hear my Ballerina give a scream indicating she was out. She didn’t stop crying until the section was complete. At 8:27pm, the OB tells me I’ll feel pressure and then immediately I was being told that Music Man had arrived. She was 5lb 2oz and he was 5lb 9oz. Both seemed to be doing really well based on the sounds of their cries. The delivery nurse kept complaining because Music Man peed on her – THREE TIMES!!!!!!! When they brought the babies over for me to see, therefore, I was surprised to see oxygen masks on both of them. I got to see them, but I didn’t get to touch them.

While in recovery, one of the nurses came by to fill me in on their condition. Overall, they were doing well, but they were in respiratory distress. They were checking them for pneumonia, but it was most likely due to prematurity. Either way, they were both doing all right considering. A little while later, Kevin went to see the babies in the NICU and gave me a full report – they were on the CPAP to help them breathe, but they didn’t need to be intubated. She was actually doing better – 30% O2 was all she needed – For him they weren’t as convinced about at that point, but he was fine with 35%. (which we learned soon after Kevin returned from the NICU).

By Thursday, both of them were off of Oxygen (CPAP and nasal canula) and they have discontinued the IV and removed the feeding tube. They were both out of their isolettes and were bedding together. He was removed from his isolette at 8am and she was taken out around 3pm, just before we left for the day. Seeing them in the same crib together was the most beautiful thing I ever saw – this was the picture I had been waiting for since July 6, when we first learned that I was expecting twins.. On Friday, the both passed their car seat test, with flying colors. After a mild setback over the weekend, they were both released from the hospital on Tuesday afternoon.

Here are some pics.

Ballerina being evaluated (just go away – I don’t want my picture taken just now):

Music Man being weighed:

The first time Mommy sees them (Ballerina is the closer one):

Mommy and Ballerina share a moment together:

Daddy's Little Girl:

They’re finally together!!!!!!!! (Music Man is on the left and looks just like Big Brother!)

Heading home:

Big Brother Moment (his reaction to the twins was “BABIES!!!!!!!!!!!”):

And here they are today......

ARE WE CRAZY?????????? (the current story)

2012-01-11T11:20:00.002-05:00

Birthdays. We all have them. And our kids have them. For parents, we love to celebrate these milestones. We see how much our children have grown. We see them continue to blossom into their potential. Even when we have problems with developmental delays and issues, we STILL get to watch and amaze in the wonder of their development.

Ballerina and Music Man are turning 5. A whole hand. Half a decade. And this is happening TOMORROW!!!!! When they were first born, they were each in an isolette. They both required breathing and feeding assistance in the forms of machines and tubes. But they were still two of the most beautiful creatures that Dad and I had ever seen.

Now they run around. They taunt each other, big brother, their parents and teachers, everyone. They laugh and play. Music Man can read. Ballerina loves to dress up in her fancy dresses and shoes. We have so much to celebrate. So, this year we will!!!

Yup.....we're having a birthday party. And we are having it at the kids' gym (The Little Gym of Germantown) on Sunday afternoon. We have invited all of their classmates at both schools (plus two other children in their schools that aren't in their classes but with whom they share other school activities). We also invited the two other girls in Ballerina's dance class. When we sum that up, that totals 20 children, including our 3, all but 1 fall somewhere on the spectrum. Thus far, we are still waiting on several RSVPs (which is really annoying because I have no way of contacting those families that I haven't exhausted already), but given the numbers we know for sure, we will have upwards of 18 kids ages 3 through 6 (actual current count 9 kids, all but Big Brother on the spectrum).

I am very happy that we are doing this party outside of our home. I am already going crazy trying to think everything through and plan for everyone to have a good time with minimal meltdowns. We will have 2 cakes, one for each twin. Ballerina's will be a Princess cake made using a standard mix (or 2). Music Man's cake will be a chocolate GF/CF cake in the shape and design of a piano keyboard. Both of these will be decorated by our resident cake expert, Dad (watch for my post about the party and I'll be sure to include pictures). Whenever I speak with parents about the party, I warn them about the "Air Track" (it's like a bounce house without the house). It's one of Ballerina's FAVORITE things and we can't be without it for the party, because it is HER birthday after all. But it's LOUD. So, we are warning parents so they can be prepared (and we're ready because Music Man isn't too fond of it either). We have also made it clear that for every child there, there must be an adult staying with that child. The staff at The Little Gym is NOT trained to deal with a special needs population. But we have lucked out with the person running the party. The person taking charge of our party will be the teacher who knows both of these kids the best. She also knows Big Brother. She doesn't do many parties anymore so we didn't think it would work out like that. But she managed to get ours and we couldn't be happier about that.

And, at her suggestion, we are bringing in our own music. And when we do that, what do you think that will be? Why, LAURIE BERKNER BAND of course!!!!! We purchased the CD of their latest DVD (Party Day) and between that and several other songs that we have downloaded from amazon and iTunes over the last couple of years, we have a very happy and upbeat mix. I will be burning this compilation onto CD and bringing it to them either this afternoon or tomorrow so that the teacher can listen and work it into the party.

We've done all we can. Now we just have to let it happen. We know that we can't avoid the meltdowns -- not in our kids and not in their friends. But we have tried to fix it so that there will be as few as possible. And the gym has really been helpful at giving us suggestions and helping us make all the necessary decisions. All we can do now is sit back, relax and enjoy the party.

Yeah, relax.....right!!!!!

So Much To Say.....

2012-01-09T10:06:00.004-05:00

......Let's just take this one topic at a time.

I have been needing to "blog" for ages and ages but I haven't had the time. I still don't have the time, but I'm doing it anyway this morning. Expect to see quite a few posts in the next week or so while I catch up....

What has been happening for the last couple of weeks? LOTS!!!!! But I'm going to focus this post on a topic that has been brought up many times before....SLEEP!!!!!

But what's different about this post about sleep as opposed to the many others that I've written over the last 2.5 years? Because this time, I'm going to talk about my kids ACTUALLY SLEEPING!!!!!! Yes, I"m not really sure what's been happening, but all 3 kids are falling asleep and staying asleep. They are even sleeping in (given THEIR definition of "sleeping in") periodically. It's strange. I'm still waiting for the other shoe to drop.

When we were visiting my parents, that's when it started. We traveled to NY and CT to spend the school holiday break with mine and my husband's families. The drive to my parent's house in NY was, well, we'll call it a nightmare in terms of traffic (but the kids did just fine - it was me and my husband that were struggling). What should have taken 5 hours took nearly 8. But since we were late in arriving, everything else got pushed back, including bedtime. They fell asleep VERY quickly (within 15 minutes). And this is in an unfamiliar place on their travel airbeds. We just figured it was because they were so tired (it was nearly an hour after their "normal" bedtime).

That was December 27th. Today is January 9th. They are still falling asleep quickly. And they are still sleeping through the night. They are even sleeping in until 6:45am on occasion!

I will admit, we are dealing with health not quite 100%. There is a mild stomach bug running through our house that has affected the two of them more than anyone else and they can't seem to quite shake it. But they are acting perfectly and 100% "normal" (for them) about 95% of the time, EXCEPT for this. Does this mean that we are about to enter a new chapter in our never-ending sleep sagas????

Or did I just jinx that away....forever?

A Call To Action!

2011-12-24T09:46:00.001-05:00

On December 14, a young boy (9 years old) in Mercer County, KY was forced by his teachers into a duffel bag and the drawstring pulled tight for upwards of 20 minutes before his mother found him, in the bag, in the hallway outside his classroom. This young boy happens to be autistic and this was being used as a form of discipline because he was misbehaving in the classroom.

I know....I'm the parent of 2 autistic children, and my attention is often drawn to stories like this. But I don't care he was autistic -- this is NOT an appropriate way to treat a 9 year old student in a public school, much less when the action is performed by a TEACHER. According to the article on Yahoo! News (http://news.yahoo.com/school-accused-putting-autistic-student-bag-182229844.html), the official statement that was provided by the interim Superintendent of Schools included, "The employees of the Mercer County Public Schools are qualified professionals who treat students with respect and dignity while providing a safe and nurturing learning environment."

Christopher Baker was NOT treated with respect nor dignity. Nor was there a safe and nurturing learning environment present in that classroom if this is how their students are treated.

If you agree with me and feel that this cannot be allowed to continue in an American Public School, please consider signing the online petition on change.org (http://www.change.org/petitions/end-abuse-of-autistic-students-in-mercer-county-kentucky).

Thank you.

Visiting Santa

2011-12-14T15:32:00.001-05:00

This past weekend, Dad and I took these kids on the annual Santa trip. We are never sure what to expect from those moments -- will they be willing to wait on line? Will they try to run away? What will they think when they are face to face with the big guy? But we can't be afraid to do things that everyone else just takes for granted, right?

That's always our question. We know that there are opportunities, but we have to decide whether it's worth the risk every time. Sometimes, because of Big Brother, there really is no question -- he wants to go and he deserves to go. We just try to prepare ourselves for whatever Ballerina and Music Man will do. This is one of those times. Big Brother believes in Santa. And he knows he wants certain specific packages to be waiting for him under the tree. If he doesn't tell Santa himself (or at a minimum one of Santa's authorized helpers/dopplegangers) he has no way to know if Santa will get the message. So, off to Santa we went.

I also should say that visiting Santa is a measure for us as parents. We go to the same location every year. They are set up (about) the same way every year. And every year, we try to ascertain how Ballerina and Music Man are progressing, and how we as parents are growing in our willingness to take chances with our kids to give them these experiences. We always purchase the images (and the copyright protection) so we can track these experiences over time.

So, this year, we went on Sunday. We checked online and learned that the mall was opening at 10 and Santa would be arriving at 11. So, we knew we wanted to arrive at the mall around 10:30. That way we would be near the front of the line, at least hopefully. So, we made an effort to have everything we would possibly need and then headed off to the mall.

We got there a little later than we planned, mainly because we got a slightly later start then we planned. But we were still only the 4th or 5th family on line. As soon as Dad joined the line with the boys, out came his phone. Big Brother took out his iPod. Big Brother started playing his games. And Dad started a movie -- PARTY DAY by Laurie Berkner Band.

These kids were dancing, playing, singing and having a blast. We had to work to keep them from getting in the way of the shoppers walking around the growing line to see Santa, but they just kept working their way to a darkened store window which had a reflective surface. Ballerina enjoyed staring at her reflection, Music Man was dancing and spinning away and even Big Brother joined in!!!!

The video kept them busy until Santa arrived. Then, since we were so close to the beginning of the line, we moved right into the queue when the gate was opened. We still had a couple of songs left in the movie to pull out when we were waiting for our actual turn, but all together, our wait to see Santa was only about 35 minutes, and that was with us arriving approximately 20 minutes before Santa arrived. Big Brother was happy when it was our turn and then when it was our turn, he went straight onto Santa's lap and they discussed his list. Santa asked to keep the list, just to make sure he didn't forget anything. And, for good measure, we even got a couple of pictures for our efforts.

After we left Santa's lap, we had a few problems. Neither Ballerina nor Music Man wanted to stick around and wait while I paid for the picture. Dad was stuck trying to coral them. Music Man DID manage to get out of the space that Dad created and went into a store. But unlike past experiences, once he reached the back of the store, he turned around and came back to me and took my hand to walk right back to Dad. In the past, he would have been kicking or screaming, or I would have had to go into the store and drag him out, carrying him like a stack of potatoes. So, again, using this as a measure of growth, this was a positive.

So, we drove home, tired but triumphant.

But Ballerina's day wasn't done. She was so happy to be dressed up. I couldn't allow her to stay in that dress all day when she was just playing at home, but I allowed her to be in her Halloween costume. So, Ballerina was a princess for the rest of the day, tiara and all....

All in all, it was a good day!!!!

Success!!!!!

2011-12-10T20:28:00.003-05:00

I am feeling so vindicated right now.....Ballerina's dance class started on October 1. We started planning it several weeks before. But I was at a loss where to go to promote it. I knew that the class was meeting an "unmet need". I knew that people would be interested, if only they knew it existed. But I'm not a promoter. I don't know how to spread the word. I just tried to figure that out. Just trying to get the word out in my small circle.

That was until a couple of weeks ago when I wrote my panicked blog post. I was terrified that this class would be cancelled, after all that effort. I was afraid that it would be taken away from my little Ballerina -- her all-time favorite activity. I just couldn't let that happen. I became a woman possessed. It was my MISSION to make sure this program succeeded. I went to day care centers to drop off flyers. I posted on every Facebook page I could think of. I wrote a blog post here. I contacted a couple of local papers, including the Germantown Patch, and wrote my own article there (became one of their regular bloggers for the effort). I also contacted another blogger who happens to run a website listing all things autism in our area.

These efforts paid off. Today's dance class was not only my little Ballerina, but there were 4 little girls, all wanting to dance. All wanting this opportunity but these families had previously been unable to find anything suitable for their daughters. The class went smoothly. They all had such fun! I got to observe the last 1/3 of the class, and it was such a pleasure.

I felt like a hero. I made this happen. I let these families know this program exists. And now they can have the same pleasure I get every week watching Ballerina get ready for her dance class and for the euphoria she enjoys for the rest of every Saturday.

How often does an Autism Mom say that they feel like a hero?

It's Official....I'm a Crazy Person

2011-12-07T13:01:00.002-05:00

The last week has been nothing but insanity. Between my (successful) efforts (thank you very much) at getting word out about this dance class, Ballerina's IEP Meeting (which was a really simple thing of just getting us in the same room at the same time), and our normal craziness, I'm amazed I am able to sit at the computer to write this much less admit to the world that I'm officially crazy.

But it's true.

Ballerina's meeting yesterday was about as simple as can be. It really was just her team and I in the room discussing what evaluations they feel are required in order to present an accurate picture and to aid our decision as to which kindergarten program is best suited for her needs. The last evaluations in her file are from Summer 2009 and the report from CSAAC (the organization who conducted the in-home ABA while we were with MCITP [our school's Early Intervention program]), and they no longer paint an accurate picture of what she is doing. Most of these indicate that she was barely verbal and nearly 100% uncooperative. Anyone who sees her now knows that these phrases do not describe my daughter. So, I agreed for them to start evaluating her again. She will be seen by the school psychologists, her classroom teacher and I will fill out various reports, and she will receive both a Speech and OT screening (the latter will be using non-standardized and more informal assessments as they don't feel that the "formal" testing is appropriate at this time). The school has 90 days to complete these assessments. Then we'll sit down again for what I'm thinking of as "The Big Meeting" -- we'll go over the evaluations and determine kindergarten placement at that time.

So, when I receive (haven't as yet) a request for an IEP Meeting for Music Man to take place in January, this is what I should be expecting (they've already told me that they plan to hold such a meeting to get updated assessments for him as well). I swear, this transition to kindergarten is going to drive me crazy. I'm almost to the point of saying, "JUST TELL ME WHERE THEY ARE GOING ALREADY!!!" Because, as I'm sure you know, I'm just SLIGHTLY on edge about this whole process....

But there is some positive news to report.....more follow-up to the dance class.....not only is that student that I mentioned earlier considering joining the class, but someone else has ACTUALLY REGISTERED!!!!!!!! So, we may have 3 active students in this class within a couple of weeks!!! This was the minimum that the studio owner told me that she wanted to see. I know the class wouldn't have been cancelled (now), but it would be nice to know that it's CLEARLY safe.

So, now I'm trying to get my head back on. I'm trying to figure out exactly what is going on so I can focus. Time to breathe and get ready for the next stage, whatever that may be.....

Overwhelmed

2011-12-05T20:36:00.002-05:00

I know.....I often say that....there are just several days every once in a while where it feels like it's all happening at once, and right now we're at one of those points. Nothing bad. Nothing catastrophic. Nothing life-altering. Just a lot.

Let's start with a follow-up to my last post. Since I wrote that, I have contacted several local newsletters and had stories published in several. Also, our local paper has been contacted and I hope they will consider writing a story about this dance program. I spent Thursday morning driving from one day care center to another, dropping off flyers for this dance class. I started writing as a blogger for The Germantown Patch, mainly to start getting this story out. I posted on every Facebook page I could think of that may help me reach my audience. And to date, it looks like it wasn't all in vain -- it looks like we may have another child signing up for this class. The Mom wants to check it out a bit first (and who can blame her), but I'm hopeful. And I learned over the weekend that the owner will NOT cancel this class, at least during this time that it's offered. The class has started, she has a loyal student who is enjoying and thriving in the class -- it won't be taken away from her. So, my true desperation has been relieved. But, at the same time, I really worked hard to get something like this started and I want to prove that it isn't just me -- I want this to be a success for children in addition to my Ballerina.

But this week is starting with a bang. Back in early October, I took Music Man to the dentist. The visit was reasonably successful (given my expectations), but we decided he needed more exposure than the every 6 months that is typical for kids' dental visits. So, this morning, I took him back there. It had been 2 months and in that time, he had gotten much better about brushing his teeth. He will now at least tolerate the brush and actually seems to enjoy the sensation for brief periods of time. But how would that translate to going to see the dentist? Well, the answer was "reasonably well". Once again, for most parents it would be a failure. He cried and screamed and kicked through the full exam. But he didn't attempt to bite the dentist. He allowed the mirror and the poker to be in his mouth for brief periods of time. And he didn't attempt to run away.

But the amazing thing was, after this, he asked me if he could get a haircut. He actually pulled at his hair and said "Haircut". Well, how can I NOT bring him to get a haircut (which was at least 6 weeks overdue) after he asks for it. This is another one of those "don't do it unless it's necessary" kind of activities. He hates it. And there is nothing I can say or do that will change that. But today, I picked him up from school (after dropping him off late to take him to the dentist) so we could get his haircut. And he did it!!!! Once again, there was a lot of screaming and hands covering his ears, but he allowed her to get the whole thing!!!! And now he looks so grown up!!!!!

So, we got through today. Dentist and Haircut for my Music Man, and he handled it all like a champ!!!!

Tomorrow, Ballerina's IEP Meeting to, I think, begin the kindergarten transition. I THINK we're going to be discussing what evaluations are needed.....what programs they recommend......and what I need to do to make this happen. Stay tuned.....

I'm Just A Bit Panicky Right Now

2011-11-30T16:19:00.008-05:00

I've posted a few times here that we have had a HUGE victory in finding a dance class for Ballerina. It took ages to find it, but we have a great thing going. The only problem we have been having is getting the word out. I'm convinced that, if people knew about it, they would be begging to get their kids into such a class.

But if I'm right, they AREN'T learning about this class. There are only 2 students enrolled. Ballerina and another little girl who just turned 5. Together, they have been coming to The Studio Of Dance every week. And they have been participating in the class. They are working on ballet and tap. They play games. They march around the studio. The model for the mirrors. And they are having a lot of fun (well, at least my Ballerina is -- I really can't speak for the other girl).

Earlier today, I received what I am interpreting as a disturbing email. This little girl's mother has decided to "take a break". They are hoping to return to the dance class later in the year, but for the time being they feel that they are better off eliminating this activity from their schedule. This is their prerogative. I know I can't complain about that. But there are only these 2 kids enrolled in this class right now. With her withdrawal from the class, that means that Ballerina is the only student. I don't know if they can offer such a class for just one student.

I'm really not sure what to do to spread the word. I have told everyone I know about this program. I contacted a local sports organization that runs sports programs for special needs kids to let them know this was going on (it wasn't a program they were running so they weren't in competition), but no one there would get back with me. I told both Ballerina's and Music Man's school programs and they sent home flyers for us. And today (after receiving this email), I wrote an article and submitted it to The Germantown Patch, a local web-based newsletter that contains local events and descriptions of local organizations. Hopefully, they will publish this in the near future and that will lead to more students enrolling.

But we can't lose this. If the class is cancelled, I will try to enroll her with the typical class that they run, just the younger group (don't know if she has the discipline to be with the kids her age). But this was something that I was so proud of -- a class that would teach special needs kids, specifically kids with autism, dance. The environment is more relaxed here. The expectations are more flexible. And Ballerina is simply LOVING it!!!!! I just don't want to see them have to take it away.

If there is anyone reading this who has more suggestions of how to spread the word of this program, I'm all ears. I know my specific reasons for wanting this is specifically for Ballerina, but the special needs community around here deserves it as well.

Where are we headed?

2011-11-28T20:32:00.003-05:00

Time to go back in time. We go to see the developmental pediatrician for the first time. It's March 12, 2009. The twins are exactly 26 months old. I'm struggling with both of them in both the waiting room and then the exam room. No one comes with us. We have no idea where we are. We just know that there's a speech delay. At the end of the (approximately) hour-long appointment, I'm walking out in shock because this doctor told me that both of my twins were "clearly on the spectrum". And then, she followed that statement with, "That means they are autistic."

The next 2 days have vanished from my memory. I can only assume I went through them in a complete and total fog. But on March 14, 2009, we climb into our fully-loaded SUV for the 14 hour drive to Orlando, FL to spend a week in the world of Mickey -- a previously planned vacation from reality where we can just be a family.

When we returned on March 23, our new lives were about to begin. Services began shortly after that. And we were thrown into the "Autism World". Therapies were being described to me and I would allow the information to sink into my brain. Options for programs were discussed. Causes were debated. But it felt like it was happening to someone else.

Now fast forward to present day.

(this picture was uploaded from the Facebook Page "Recovery and Hope")

I'm not really sure how or when it happened, but some time ago, I reached this point. I embraced this reality. I still struggle with the reality of everything. From the beginning I had a personal goal of both Ballerina and Music Man entering a typical kindergarten classroom -- that's what this was all about -- working with them so by the time they were ready to enter kindergarten, they would be like everyone else. Well, that was proof that I didn't understand what we were dealing with. But I did have hope that they would be able to succeed in a typical classroom setting. And I have maintained this goal for both of them.

That is, until about 8 months ago, when I spoke to the kindergarten teacher at "The Learning Center" at our local elementary school. I had been watching a typical kindergarten classroom all school year by volunteering in Big Brother's class. I saw what was expected of them -- the independent nature of their work and how they were expected to, in many ways, teach themselves. I still hoped that, at least Ballerina, would be ready for this setting, just with a little bit of help with speech and OT. But I couldn't see Music Man getting there in just over a school year. So, I spoke with this teacher. That was yet another wake-up call. At the end of this conversation, I quickly realized (even though I wasn't really ready to say it) that this special education class was appropriate for Ballerina, not a typical classroom. And I saw how far Music Man had to go to be ready for even this setting.

Music Man's Annual IEP Meeting was earlier this month. I had discussed with his program that I wanted him to attend this kindergarten classroom next year. And we developed his goals with that objective in mind. But at the end of the meeting, the administrator started laying the seeds for me to recognize that this may not be the ideal placement for him. He has several of the skills that he needs, but not others.

So, once again, I'm needing to remind myself to take that moment and think about what is best for my son. It's the same question that I've been asking for nearly 3 years. I need to remember to see the truth and not my own picture of what's going on. My hopes for my kids cannot be what decides their future. The truth must be the first thing we consider. Once again, I need to remind myself of that picture above....."Dear Destiny, I am ready now."

Happy Thanksgiving!

2011-11-24T19:10:00.006-05:00

This year, we did the family holiday in our own way and on our own. We didn't travel to NY or CT to visit with the family. My parents were unable to come because they were expecting company at their home. Kevin's family will be coming down here (well, many of them) this weekend. But for the actual day, we are on our own. And in many ways, that's a good thing. The insanity that goes with travel in general we don't have to address. And with the holidays, it's even worse because the traffic on the I-95 corridor is, simply put, a nightmare.

But on the my Autism Facebook Page, all month long I've been saying what I've been thankful for in daily posts. Today, I posted a picture I found from another page and said that I was thankful for autism. What I said was, "On this Thanksgiving Day, I'm going to say I'm thankful for autism. There are days, and there are moments that this statement is true and false. If it wasn't for autism, I'd be rushing through everything and not appreciating all of the accomplishments. If it wasn't for autism, I would miss the moments. And, if it wasn't for autism, would we have had Mozart, Gallileo, Van Gogh, Einstein, Edison, Grandin, etc.? And without autism, who would my Little Ballerina and Music Man be? Sometimes you have to take the bad with the good." And I mean this, with all my heart, despite all the things I have said about autism in this blog in the past and will probably continue to say in the future.

I am also very thankful to have such a wonderful husband who takes such good care of us all. Not being with family for Thanksgiving this year was made much easier by him making our little family a semi-traditional Thanksgiving meal (the only reason I say "semi"-traditional is the dessert had a slight twist to it). He spent the last few days working on making a perfect meal for the two of us (because none of the kids were going to have any of this. We had a perfect turkey, stuffing (cooked both within and without of the bird), potatoes, home-made oatmeal bread, gravy, corn and green beans, and of course, cranberry sauce. Then, to finish off the meal, he decided to experiment, and specifically for me, he made pumpkin bread pudding. He knows that I love bread pudding, and lately have found a passion for anything pumpkin flavored. What better dessert could there be???? (and he was right). We learned of the pudding from watching Throwdown With Bobby Flay on The Food Network.

So Happy Thanksgiving to anyone reading this. I hope you had a good year and that you took the time to appreciate all of your blessings.

Making a change....

2011-11-20T13:12:00.003-05:00

......I'm not sure if this will have any real benefit, but I'm going to try to start anonymizing (if that's really a word) my blog. I'm putting it out in more and more places and my kids are starting to get older. They deserve to have their privacy protected.

Therefore, I'm going to change their names. Daniel is now "Big Brother", Rachel is "Ballerina" and Simon is "Music Man". Only the names have changed. The ideas and stories will continue as they always have. I may slip from time to time and use their real names, but I noticed whenever I guest post somewhere I don't use their names. If I'm concerned there, I should be concerned here.

Thanks!
DRS_Are_Best

When is a "Grudge" no longer a "Grudge"?

2011-11-16T12:03:00.004-05:00

When do we switch from acting based on a grudge to seeing the truth? That's something I've been asking myself for the last few Saturday afternoons.

Simon has been attending the music (group piano) class Harmony Road 1 since September. We have missed only one class (but still made up for it in our own way). But going there is getting harder and harder. I still harbor so much anger towards them about how this class began (see my earlier post). I see the behavior of the kids in this class and I become furious. They spend much of the class playing the piano over the teacher talking. Simon doesn't do that. When we are working at the whiteboard, these kids actually LIE so they can get second or third turns before Simon gets a single one. Simon doesn't do that. And Simon is learning what is being taught. Yet Simon was the one who was complained about. I'm STILL angry about this.

But I am finding myself wondering if I have him in the right class. I can tell he doesn't like the work -- he wants to do things his own way. He refuses to answer any of the teacher's questions. He will answer them for me. He refuses to write on the board. But he will acquiesce if the teacher will do "hand-over-hand". I think next time I'm going to have the teacher "help" him to do it wrong, just to see if he (and she can use this for the class) recognizes that it's incorrect.

Ever since his IEP Meeting, I find myself really questioning how much he really understands. How much does he comprehend what's going on around him? Am I falling into my father's trap of thinking that the fact that he's reading is so important (in my father's case it's the toilet training)? Yeah, he knows over 200 sight words. Yes, he knows to sound words out (and is often reasonably successful) if he doesn't know them. But then when he can't tell you who the main character is, does that really matter? Yeah, he knows what a treble clef is, and he can find "do" on the piano (as well as re, me, fa, and sol which is as far as they have progressed), but he can't read them when presented to him. Nor can he tell you where on the staff they belong. Is that a sign that he's not ready for this class?

In the beginning of the semester, there were complaints about Simon's behavior. There were concerns about his ability to handle this class. Now I'm wondering, behavior issues aside, were they right? He comes every week. But what is he really learning?

This is what I hate about autism in Simon. With Rachel, I can figure this out. I can see if she is learning. I can see where she needs the extra work. Simon just baffles me. That "splintered learning" thing really just gets in the way. If he can do this, he SHOULD be able to do that. But that's simply not the way it is. He can do A, C, E, F, G, and I but not B, D, or H. With him, we always seem to walk away from things with more questions than answers. Even in this one place where I thought he would really excel, I'm forced to question whether I'm pushing too hard, just because I got angry.

Dancing and Listening

2011-11-12T09:40:00.003-05:00

I know....Saturday morning and I'm writing a blog post. I'm sitting here, between activities in our ridiculously insane Saturday, but I want to write this while I'm thinking of it. What better way to take advantage of a "quiet" 35 minutes, right?

Our Saturdays typically begin with Rachel's dance class (well, at least that's our first "activity"). I have wanted to experiment with Rachel and her Focalin dose for a while -- I wanted to see if she could handle the dance class without the ADHD medication. One of the benefits of Focalin is that it's so short-acting that you can take days off without any real consequences. And that's a good thing because we haven't had any for the last few days. Yup.....we ran out and even though I called the doctor's office to get a refill, because it's a controlled substance, it cannot be called into the pharmacy, but mailed to us so we have the original prescription. And the doctor's office is far enough away and my week was crazy enough that I decided to ask them to mail them rather than driving into Fairfax, VA to pick it up. I think I now regret that decision as it has been a week and still no prescription (and they can't deliver it through another Children's Hospital Outpatient Clinic -- it has to be where this doctor resides).

So, time to take advantage of the opportunity......can Rachel handle her dance class without her dose of Focalin? The only way we are going to know is to try. So, let's give it a try!

When we arrived , she was far more animated than usual when we arrive at class. She's talking up a storm, surprising her teacher and the mother of the other little girl in the class (she's normally very sedate, thanks to the effects of the Focalin). I let the instructor know that we are without the medicine this morning and that I'm really not too sure what to expect. Everyone took a deep breath and the class began.

I could tell immediately that this class was going to be different for Rachel. First, she didn't seem to want to go into her assigned studio, but to the one across the hall. But that was corrected quickly. Now, normally I don't hear her at all. Today, she was running around and talking quite loudly. I poked my head in and she was having a very hard time sitting in her hoop (her guaranteed space -- the other little girl is supposed to allow her this space). She was fascinated by the mirror and kept running over to it. But they were able to get through warm-up and stretching time. I just stuck around trying to blend into the background (unsuccessfully of course). Onto ballet. Rachel was doing a little better. She liked to point her toes. But she was clearly distracted. After a few minutes, the decision was made to abandon formal teaching and they played through an obstacle course (jumping, balancing, crawling through a tunnel and "log roll" along a mat). This was better for her. It was clearly a "game" which held her interest a little better. As long as she wasn't waiting. When she was waiting, she found a corner in the mirror with the added reflections which she just LOVED!!!!!!

When they switched to taps, once again instruction began. But this was more interesting. She really was trying. I could see the effort. But, again, she was distracted. She would start doing what was expected of her and then would either forget what that was or would switch her attention to something else. But she was still having fun.

I would call this experiment a "fail". However, it wasn't a "colossal FAIL". But she clearly isn't ready right now to be expected to perform in any classroom setting with any focus without the aid of medication. I'm glad that things worked out well and that there were no serious consequences -- she still had fun and she still learned. She didn't cause or create havoc. She didn't run off. But she just wasn't receptive to learning the way she needs to be.

The only way we were going to know if this was a good idea was to try. So, today we tried. And now I know. She still needs this. We'll probably try again in 6 months or so. I'm glad we tried, and I'm satisfied with the answer.

Shameless Self-Promotion and an Apology

2011-11-11T09:11:00.003-05:00

A post I wrote has been made one of the posts on The SPD Blogger Network yesterday afternoon. Please feel free to come and check it out!!!!!

Who's Afraid of the Big Bad Dentist?

Also, my apologies for the rambles that was last night's post. I just wanted to get it all out so I can organize my thoughts. I was so tired and apparently had been really stressing about this meeting because I got my first decent night's sleep in WEEKS last night when this was over! So, thanks for putting up with me!

Annual Meetings

2011-11-10T20:47:00.003-05:00

Well, the second Annual IEP Meeting is behind us now....Simon's is done. So, we're done with these for a while, right? Nope.

As I was packing Rachel's bag this morning, there was a note. "This looks familiar", I thought, and read it. It's an invitation to another IEP Meeting in early December. At the moment I'm not sure what this is about -- is it the start of the placement process or planning the transition? Is there a problem? Is it just to discuss the evaluations that need to be done? I really don't know. I sent an email to her teacher this morning to ask and still have not received a response. I will give her until Monday and then will contact the Autism Office to find out what this is about. But I have to leave it alone for right now, because Simon's meeting was about to happen and I needed to have my head on straight.

Simon has been in this program since he turned 3. But unlike Rachel, the program hasn't really changed around him. It has remained the same and he has been made to acclimate to what they do. Don't get me wrong. He has done really really well there. And, even though I wasn't seeing it for a long time, is truly thriving. But the don't have the same flexibility that Rachel's program does, being in a full elementary school. He isn't eating lunch in the cafeteria with typical children. He isn't playing on the playground with his typical schoolmates. He isn't able to be incorporated into a typical pre-K setting. All of his exposure to the students there has been with kids with special needs, just like him. I have worked to give him some exposure to typical kids so that when he's NOT in school, he can handle himself and succeed. Perhaps even to thrive.

But the program itself really suits him. It's small enough that they are able to address his specific needs and he is happy to go. Since his last meeting he has learned to read and manipulate numbers. He has learned to take turns. He has learned to try new things, both in his activity choices and with his foods. He's even learning to void in the toilet. These are all steps in the right direction. And he is doing well. Prior to his meeting, I reviewed the draft document (minus one page) in pretty thorough detail, even more than I did for Rachel's. It had quite a few aggressive goals. They are really focusing in language development and comprehension for this last year of preschool. And these skills are being applied not only for reading, but for mathematics and even self-help type skills.

Happily we are all on the same page of what we need to work on. We all agree that he has made tremendous progress. We all agree that he is a very special little boy with a lot of issues that he has to learn to overcome. However, we don't seem to agree on where we should go from here.

There are several programs offered by our area's public schools for children on the spectrum. Some are more intense then others and then there are students who, even with an IEP have been fully incorporated into the mainstream educational classrooms. This is what I hope will happen for both Rachel and Simon, and something that I would like to see happen sooner rather than later. But we aren't there yet. And for Simon, we are considerably further away than for Rachel. Simon tends to "wander". I don't mean in a dangerous sense, but when he decides he's done, he will walk over to the book corner and grab a book and read it quietly. There are much worse things he could be doing, but this is something that will not be tolerated in a typical classroom. He also prefers a solitary existence. He doesn't want to interact with his peers. We are starting to notice an improvement in the way he interacts with adults or with his siblings, but in general, he would rather find an activity and be by himself. Again, these are behaviors that we need to work on so that he would "fit in" a more typical classroom setting.

Overall, the meeting did go well. But a few realities were made clear to me that I'm not sure I'm ready to take in. His learning continues to be "splintered" rather than "sequential", which has been true from the beginning. He has skills that make him appear advanced, but he doesn't have the precursors to those same skills that most children seem to have. He doesn't understand greater or less than, but he can add 2 numbers without thinking. He can look at a stack of objects and know how many there are, but he can't tell you that the book he's holding is the shape of a rectangle. When we asked him at dinner tonight to show us the "longer" french fry (there were 2 in front of him), he didn't understand and picked up the (considerably) shorter one. He can read pages of text, but he demonstrates practically zero comprehension of what has been said to him or in what he has just read.

These are the skills we are working on. We will continue to address where he should be placed as the school year continues and I do believe we will make the correct decision. My desire as to what program I would like to see him attend has been made perfectly clear and was put on the record during this meeting. And it is one of the 3 probable options. I just don't know if that's going to be the right decision when the time comes.

And I thought it was difficult making these decisions for preschool. UGH!!!!!!

Anxiety

2011-11-08T13:55:00.002-05:00

I don't think parents of special needs children are more anxious about anything as much as they are about the dreaded "IEP Meeting". And I have to count myself in that group.

Simon's IEP Meeting is on Thursday. I will be going to school to visit and observe tomorrow (Wednesday). I have reviewed his draft IEP document and have a couple of questions, but they are minor. But once again, I'm about to sit in a room that is going to define his next academic year (but I realize this time that we aren't going to be seriously considering kindergarten placement yet) and I find myself wondering if I am making the best decisions.

Is my desire to have him attend this particular program for kindergarten really the best option? Because all of the goals and objectives have that plan in mind. There are many reasons I want him to go to this particular program. Some are for his benefits and others are for mine. And there's always that thought in the back of my mind of putting Rachel and Simon together again, a dream that I (apparently) still haven't fully let go.

I don't know if we are going to take the time during the meeting to discuss the options (even though we won't reach a decision). But, unlike for Rachel, I'm really not sure what the best choice for Simon will be. Either way, I hope that we can discuss it rather than have one of us dictate to the other what should be done.

Halloween

2011-11-06T20:44:00.003-05:00

All right, Halloween was nearly a week ago and we don't live in an area that had to postpone Halloween because of the snow/ice storm, but I hadn't had the time to write about the experience. At least I'm only about 6 days behind.....

But we had been preparing for Halloween for a while. Daniel has wanted to be "Darth Vader" for MONTHS. This desire was so strong, I went and ordered his costume before school started so I could be sure that he got the costume that he wanted. I found one (amazingly) on sale and he was very happy with the results. But he's the easy one. As a typical kid who is really into Star Wars, he likes the idea of playing this character. He will act out all of the light saber scenes when watching the movies and he is now watching Clone Wars on DVD as we are working to get him caught up. To him, it's all fun and a great chance to play dress-up without fear of what it may look like to others.

Rachel was also relatively easy. Over the last few months, she has discovered the game of "dress-up". She has enjoyed putting on her princess dresses and her Tinkerbell costume which she has had for a couple of years. She likes to wear her "Fairy Wings" and more than anything, she wanted a tiara. So, for Halloween this year, I bought her a princess costume, with a tiara. She loves it and just ate it all up.

But Simon......that's the hard one. He doesn't like things that alter his perception of reality. He doesn't like things that are out of the ordinary. He likes things to be predictable. He wants things to stay just the same day in and day out. He's like Knit-Knots from the first season of Imagination Movers on Disney Junior -- boring and predictable. That's how he likes it. Halloween is anything but. Last year, he really showed us how much he despised the holiday. He didn't want to get into his costume (cowboy). Trick-or-treating was not thought of as a fun activity. He was the concern.

This year I selected his costume very carefully. I made sure his costume was one that would easily fit over his clothes so he wouldn't have any problems with the way the costume felt against his skin. I made sure that there was no hat required or no mask. And I found one that really seemed to suit him -- Mater, from the movie Cars. He really doesn't care for the movie, but he does enjoy the shorts "Mater's Tall Tales". Every time he sees Mater, he immediately will shout, "If I'm lyin', I'm cryin'!!!". (it really is very cute) So, I purchased the costume and crossed my fingers.

With Simon, we have learned that sometimes if you prepare him, it will backfire. It seems to tell him that this is something to be afraid of. Sometimes, if you allow something to sneak up on him, it seems to come out better. The hard part is determining which circumstances require the preparation and which should you just allow to happen. This time, we decided to just allow Halloween to come up and see if it went better.

So, on Halloween morning, Simon went to school. The other 2 were home because of a school holiday (since Simon's school is TECHNICALLY outside of the public school system, he has a different schedule than the other two). He went to school with his costume attached to his backpack and we were going to come visit for the party and we'd see how it was going. When we arrived about 1.5 hours later, he had just gotten into his costume and he wasn't quite sure what to make of it all. But he wasn't fighting anyone. When we arrived, Rachel and Daniel were both in costume (Daniel minus the helmet) and I think he liked what he was seeing. All of a sudden he was more willing to participate. We all went on a small Halloween parade around the school and went trick or treating in the various classrooms/office. He was really having some fun. He stayed in his costume until shortly before the 3 of us left and we took the costume home with us.

That night, I hoped to be building on that success. Last year, Simon didn't want to get into the costume and he DEFINITELY didn't want to leave the house to go trick-or-treating. But this year, putting the costume on was reasonably easy. He was fighting a little bit, but in a playful way. We found a small bucket for him, anticipating that he would only visit a few houses, and the 5 of us set out to go Trick-or-Treating.

We went to the first house and rang the doorbell. After the door was answered Daniel immediately said "Trick-or-Treat!!!" (he was going to do a Darth Vader thing, but the excitement of the night took over -- he's only 6 after all). Then it was Rachel's and Simon's turn. Rachel said it and then tried to go into the house (which became her pattern everywhere we went). Simon said, at the top of his lungs, "TRICK-OR-TREAT!!!!". Then he was given candy in his bucket. He SMILED! He UNDERSTOOD! This is FUN!!!!

He stayed out as long as he was permitted. We went to at least 30 houses. Every house, he said his line. Everyone gave him some candy in his bucket (which had to be emptied into Rachel's bucket a couple of times because there was no room since we didn't anticipate success). And he walked home holding Daddy's hand. He had a GREAT time.

What a change in 365 days!!!!!

More and More Things Are Happening

2011-11-03T09:49:00.003-04:00

This post is COMPLETELY about me. I have dropped one activity to pick up another (with a bigger time commitment) and feel absolutely rejuvenated!!!! And then I'm preparing for Simon's IEP Meeting next week. And we are experiencing one breakthrough (and breakdown) after another. My head feels like it's about to explode!!!!

First of all, I made the difficult decision to resign from the Executive Board of my local chapter of MOMS Club International. It is such a good group and they have helped me in so many ways that I felt I needed to repay them, so I joined the board about 18 months ago. But my kids no longer do anything with the group. They are all in school full time and the organization really is designed for Stay-at-Home-Moms with kids who are home with them. Yes, there are parent-only events and yes, there are events (again for parents [usually] in the evenings, but our bedtime routine is so strict that I haven't been taking advantage of these. I am not contributing and was standing in the way of people who could help. So, I decided to step down. I will continue to stay active with them until my membership expires (relatively) early next year at which time I will make the decision of whether I should drop it all together. At this point, I have to say I'm thinking of doing just that.

But almost as soon as I decided to drop the board position, something came along that I had to jump at. A friend whom I met through Facebook is looking to do a regular webcast about parenting individuals with autism. We may have had a hard time getting together to really discuss it, but we have had a couple of brief meetings over the last few days and are really going to make this happen. We are planning on doing a "dry run" this weekend to see if we have the technical side of this under control. Once we do this, these broadcasts will be available on YouTube. Who knows how many will see this and how many people we can potentially help? I'm so happy that she's such a "go-getter" otherwise this would never get off the ground. She had a plan long before she reached out to me and is ready to run with it all. I'm really looking forward to this, even though I know this is going to take a significant amount of time.

Then there's everything else that's been happening. I continue to be active in the PTA for Daniel's school. I enjoy working with them and really think I'm doing some good. It's not too much of a time commitment, but it's definitely there. Thus far, I've been able to dedicate a particular day for "PTA Volunteer Stuff" and been getting it done. I really think that'll be fine, but I just started another part of this job that I need to organize. Again, once I do, I think my 1-day-a-week thing will work just fine, but I have to do just that.

And, to top it all off, Simon's IEP Meeting is coming up on November 10. He is where we have so many questions. I now know that we aren't going to be discussing his placement for next year (now that I've had that discussion with Rachel's team), but I still need to make sure that the goals that we write and develop will help facilitate his placement into the typical elementary school located down the street from our house. I know he isn't going to be ready for a typical classroom. I know he's not even close right now. But I do want him in this building. I do want him working with this particular teacher in kindergarten, just like Rachel. I think they will do better there than in the other programs, based on the little I know of them. And I want them together (yes, this part is selfish). I want to no longer have to deal with the Transportation Office. I want them in their "home school".

So, now that my head is about ready to explode, I'm going to head upstairs and break up about 20 Lego projects in Daniel's room so he can start them all over again and this will allow me to access his closet. Yes, when my head is ready to explode, I feel the need to make other things explode, and Lego projects will suffice today.

The last week (or so).....

2011-10-28T13:26:00.003-04:00

I am finally taking some time to sit at the computer and write this post. So much has been happening these last couple of weeks, it's just hard to keep it all straight. And then, to top it all off, other things have been added on that makes it impossible to spend the time sitting at the computer to tell the stories. But more is happening so, I'm going to share the existing stories now.

First let's start with last Friday. The kids were off from school due to a state-wide education conference and we learned that the characters from the PBS Kids show "Super Why" were going to be paying a visit to meet their fans at our local Whole Foods Market. This is a current favorite around here so I planned to take them to the store. Then life happened. I threw out my back. On Thursday, while reaching into the dryer to pull out my favorite pair of jeans, I felt it just SNAP!!!!!! I dealt with it for the rest of the day, resting it whenever possible and REALLY bribing Simon into the car when it was time to get Daniel and his friend from school, but by Thursday night, I was in A LOT of pain. When I woke up in the morning (slept well, thanks to a very good pain-reliever), Kevin asked if he needed to stay home (he saw how I couldn't move the night before. I was feeling better so I was slow to answer him, but then as I tried to stand up, he didn't even wait for the answer. He just put on a pair of comfortable pants and stayed to help me.

By the afternoon, I was feeling better, and we figured we could find a cart for me to lean on, so we put the kids in the car and headed over to the market. We still hadn't told them of our plans in case we decided not to go through with it and when we got there, we noticed there was a line (but not a very long one). So we (well, Kevin) got the kids out of the car with the leashes on, and we took our place in line. We looked in the window and who did we see?? PRINCESS PRESTO!!!! This is probably Rachel's favorite character from the show (well, of the heroes that is). We wait on line and despite a few attempts to jump ahead several spots, they did quite well. And they got to meet the Princess.

Then we took advantage and did a bit of shopping. We aren't at Whole Foods very often, even though we like many things that we can only find in that store. It's not particularly convenient and it is a little pricey (all right, you get what you pay for, but still it's not always in the budget). After we finish the shopping, the meet-n-greet character has changed and SUPER WHY is meeting with his fans. So, after making our purchase, we got on line and waited again. This time things didn't go quite as smoothy. Rachel and Simon were getting tired and just wanted to get in the store again or leave....one or the other. But eventually, it was our turn....

When it was done my back was hurting again, but it was worth it. They were excited and happily went in the car talking about Princess Presto and Super Why!

The other thing that happened this week involves a slight change to our bedtime routine (and for you loyal readers, you KNOW that is a sacred thing in this house). Simon, lately, has been unhappy with our existing routine. He's only wanted ONE book, and he wants to be the one to read it. So, Kevin let him the other night (this video is about 6.5 minutes long, so your choice how much of it you want to watch)....

He did a really good job with it. Some of it was memorization (he knows this book from school) but much of it was reading. But one thing we did notice by doing this is how much he still "stims" -- it's not the repeating stims that he used to do....we've always seen the flapping but now we're seeing the smacking of the lips and licking his face. It's not a bad thing that we're seeing it, but it's amazing how Kevin's decision to record this reading really showed us about our son's progress.....the good and the bad....

So, I've now filled you in about some of the things that have been happening around here. There's still more to tell as things are, as I said earlier, EXPLODING all around me, but that's another story for another time.

Another chance to shine!!!!

2011-10-28T07:48:00.002-04:00

I have a real post rumbling around in my head that I hope to publish VERY soon, but something came up this morning that I need to share......my blog has been showcased in the Autism Blogs Directory. If you want to read the interview, please click on this link.

Thanks for all of your support and remember to keep on reading.....more interesting things are happening here every day.....I just need to find a moment to write them all down.....

What a week!

2011-10-19T20:42:00.003-04:00

Last week has come to an end. And it took me 3 days to sit down at the computer to type out that sentence. It was full of so many different things.....there was a visit to the developmental pediatrician......there was an IEP meeting.....my birthday......Rachel's immunizations.......spending time with a friend going through a very rough time. And those were just the things outside the "normal" insanity that is my life sometimes.

But it was a good week. In many ways because of those added activities. I learned more about Rachel while spending time at the doctor's office. I learned that everything we have been doing for the last 2.5 years is paying off, despite not always being able to see that -- she is doing SO MUCH BETTER than when our journey began. The IEP meeting was successful -- we found the areas that need more work and shared in Rachel's accomplishments over the last year. The only thing about the meeting that I didn't like was the fact that her placement for kindergarten was not discussed as I was hoping. I know it's early in the year, but I was hoping for a preliminary placement decision, if nothing else to hold a spot for her in our desired classroom. (I took care of THAT on my own, in my own "subtle" way....)

And my 40th birthday did not go passed unnoticed. I may not be where I pictured myself to be when I was 20, or even 30, but I am in a good place. I love my family and I am watching them grow. I learn new things every day and am making something positive for myself out of what I thought just 2.5 years ago was the end of the world. When I took Rachel to our regular pediatrician's office to get her up-to-date on her vaccinations (which went as well as could be expected), I had a very brief conversation with the pediatrician as I handed her copies of my new business cards. She and I had a long conversation shortly after we learned we were an unwilling member of the autism world (in fact, she's the one who first used that phrase in front of me). I told her that if any of her patients were just learning of their entry into the autism world and wanted to talk to someone, she should feel free to use my name. I think I can really help people who are just starting on this road. I'm not sure about the rest of this, but I am living proof that life isn't over when an autism diagnosis is discovered.

And, as horrible as this is to say, I really came to appreciate my family. The friend I visited lost her husband recently and unexpectedly. I can't imagine what she and her family are going through right now and I greatly appreciate that I don't have to. But I can be a good friend to her and be there when-ever and if-ever she needs anything from me. And I hope she knows she can count on me to be right there for her.

Additionally we had our normal activities....dance class, gymnastics and music class for Rachel and Simon. And I got to see my Tiger Scout sell popcorn outside of the local supermarket to raise money for his Pack. It's so hard for passers-by to say "No" to these young kids and he was just having so much fun hanging out with a couple of his friends.

So, I may have been on a quiet stint for the last week or so, but I've definitely been busy. No wonder I'm so tired these days.....

Happy Birthday to Me!!!

2011-10-11T20:30:00.002-04:00

Today is my 40th birthday. And what a day it's been. A day of meetings. A day of activities. And a day of reflection.

It was a year ago today that I first announced I wanted to become a parent advocate. I still don't fully know or understand what that means, other than trying to help other parents find the best solutions for their children and help them achieve placements allowing them to get them into these programs. Well, I don't know how to do that, but I spent the year giving my advice to people who are trying to find solutions. And I hope I did it in such a way to give them the tools to help them find what they need. And MCASA (Montgomery County Autism Society of America) has allowed me to put the phrase "Parent Advocate" on my business cards based on the information I provided them with regards to my activities. So, I would say I have successfully achieved that goal. This is what I thought about when I found a few minutes today.

But that's not what today was about. Today was about being busy doing things for my kids. It was about being a Mom to 2 children with autism and their neurotypical very busy brother. It was about making sure that I was able to give them everything I could.

The day started with spending much of the morning in my Daniel's first grade classroom. I am typically there on Tuesday mornings, giving the teacher an extra pair of hands. The kids are engaged in independent learning and I help answer their questions or help them figure out how to do their assignments. It's quite fun and I look forward to seeing them progress as the year goes on. I spent most of my time today working with one child in the class and hope that he will benefit from that one-on-one work. And doing this had another benefit -- it gave me something to think about before heading over to what was worrying me most about the week. Rachel's IEP Meeting.

Because when I left Daniel's classroom, that's where I headed next. I ran home to let Domino run around the backyard and grabbed a quick lunch at home before heading over to Rachel's school (but of course made a quick stop at Starbucks for a Pumpkin Spice Latte on the way). And I arrived there about 10 minutes early. That's when the nerves really kicked in. I knew 4 areas that we needed to address......(1) OT (Occupational Therapy) -- she really is quite behind here and refuses to do any art projects with me including basic coloring and even when she DOES do this, it's rushed and her grip is more of a grasp rather than the pincher grasp that she needs to have. (2) Her behavior issues at home (specificially, her violent tendencies towards Daniel when Simon gets upset) even if this is difficult because they don't see this at school. (3) Her integration into pre-K. This has (temporarily) been put on hold, but there are 3 children that are doing this and they will be continuing to practice until the pre-K class is ready to resume for these kids. This is expected to resume on November 1. (4) Kindergarten placement.

Overall, I think we had some good answers for these questions. They didn't see as much of a problem as I did with the OT, but that's because Rachel is willing to do these things at school. They gave me some ideas how to get her more willing to do these tasks for me, and they did make sure that the OT goals were comprehensive. They also don't see the behavior issues I described, but they did listen and will try to incorporate some lessons to help her in these areas.

The only one of these 4 that I was disappointed with the results was the question of her kindergarten placement. I was hoping they were going to make a preliminary placement decision for her. I realize it's too early in the year to make a definite placement decision, but I'm concerned about there being space in the program I desire for her if we don't, for lack of a better way of phrasing it, reserve her spot for next year. They however, informed me that they will find room for her in the closest location for the program that she is assigned. I REALLY want to see her in our home school with opportunities for integration with typical classes and I really want her to be with this particular teacher. I need to figure out how to make sure that happens. Right now, I'm not sure how best to do that, or if I'm sitting here worried about nothing.

But I survived her IEP Meeting.

I even survived picking up the boys from their respective schools, even through a pretty significant Simon meltdown.

There's still one more parenting event left today.....taking Daniel to his nature walk with his Tiger Scout Den. He is looking forward to this, even though I'm not. And it went reasonably well....the kids all had fun and the walk was short and sweet (and a bit dark). They discussed what they saw and I just looked forward to getting home and having no more responsibility for the day.

So, tomorrow I can relax. Tomorrow I can sit back and enjoy coffee with a friend. Tomorrow I can celebrate. Today, I was what I always wanted to be....A BUSY Mom!!!!!! What better way to spend my 40th Birthday!!!!!

What IS a diagnosis anyway?!?

2011-10-10T20:41:00.004-04:00

Yeah, that's what I was forced to contemplate today. I took Rachel to a developmental pediatrician for an evaluation. We made the appointment knowing that we had a co-diagnosis of "Autism" and "ADHD". I was resigned to that truth and really just trying to figure out what the best option really is to allow her to succeed. Should we continue the Focalin? Should we change that medication? Should we do something completely different?

We went to a different facility. The doctor we saw recently has retired. And since we're talking medications, I want her to see someone more local than Kennedy Krieger Institute (all right -- KKI isn't far, but it really is quite a haul), and it has been a while since we've been up to Baltimore. So we got a referral from someone we know and trust, and took Rachel to her office at Children's Hospital. This is the first time this doctor would be observing Rachel.

Overall, the appointment went quite well. We didn't give her the Focalin this morning so that she could be observed in her "natural" state. She ran off a few times, but always returned when called (and when she reached her desired destination -- she never wanted to lose sight of me). We had to wait a while, but thanks to the iPhone, we were able to have that time pass with minimal issues. I had that long talk with the doctor while Rachel (again) played on the phone. And then her examination of Rachel took place. The last time we did these, she was COMPLETELY uncooperative. Then again, the last time we did these was just after initiating in-home ABA 2 years ago. This time, she was far more compliant. She answered all of the doctor's questions to the best of her ability. And she was reasonably cooperative for the medical exam as well. Overall, she tested like a young 4-year old in most tasks (but not auditory memory).

And the results.....ADHD, yes. Autism (specifically "Autism Disorder"), NO!!!!!

She told me that she doesn't doubt that Rachel is on the spectrum, but she does not feel that Rachel has "Classic Autism" or "Severe Autism" as we have previously been told. I asked her if this was just because she progressed beyond that as she has learned and as we have learned to address her needs, and she really doesn't doubt that. We really were just starting out at that time and had just discovered things that worked. But Rachel wanted my approval of games she was playing on the phone. Rachel gave this stranger (the doctor we were seeing) eye contact. She wanted to SHARE her experiences with us. You DON'T see this in "Classic Autism".

So, over the next few months, I need to decide if I really want to know what her real diagnosis is. Does it really matter? ADHD is clear and present. That is the condition that requires medical intervention. And we know she is on the spectrum. That's the more important part. The rest really doesn't matter.

She's still just RACHEL!!!!!! (Really Aggravating but Charming and Happy who EVERYONE Loves)

Who's Afraid of the "Big Bad Dentist"?

2011-10-05T12:43:00.003-04:00

Well, I AM for one. You're reading the writings of someone who has had 3 root canals in a single tooth this summer, is about to have more work done on that tooth at the end of the week and will need a crown put on once everything is fully resolved. I HATE going to the dentist. So, I don't expect my children to like it either.

That is especially true for Simon. Simon doesn't like anything new. His fight or flight response is strong and so is he. He doesn't like people to come near him with any instruments, including a toothbrush. But he has started losing his baby teeth. We need to have his remaining 19 teeth checked. And we need to get him used to it, even if it takes a while.

So, last week, Daniel went to see a local pediatric dentist, "Dr. Bob". Dr. Bob (in general) has a great reputation among many local families for all children, including children with special needs. When we were in the office for Daniel's appointment, I took several pictures and made a social story for the twins. I also spoke with Dr. Bob explaining Simon's issues and my concerns. I made sure that HE was prepared, even if I couldn't successfully prepare Simon.

But I worked on preparing Simon. I made that social story using a phone app called "Stories2Learn". And Simon LOVES that story. We read it over and over and over and ..... again. When I picked him up from school yesterday, we went into the school library and read it again. He thinks it's a great story. And it worked. From the moment we pulled into the parking lot, he knew we were there to see "Dr. Bob". Then we got out of the car. That's when reality set in.

He seemed to instinctively know that we were going to have to go to the second floor. He kept screaming "No elevator!!!!", with his hand covering his ears. I kept reassuring him that we didn't have to take the elevator if he didn't want to -- we could walk up the stairs. Unfortunately, the stairs are right near the elevator. But no body drops -- just loud insistence that we not get on the elevator. But we went up the stairs and walked around to the dentist's office. It was still closed for lunch.

We took advantage of the extra time and walked around. We looked down at an exercise room and saw the people on the treadmills, exercise bikes, stair machines, and all sorts of exercise equipment (most of the building is a health club). Then when the office opened, we went into the waiting room and he was face-to-face with the pictures he saw in the book. He saw the books. He saw the fish. He saw Mr. Potato Head. And he got to meet Dr. Bob. Things are going well!

We walk down the hall so Dr. Bob can look at his teeth. This is what I'm afraid of. This is where Simon typically falls apart when we visit the pediatrician. But he seems to be doing well. Until we get to the end of the hall. He drops to the floor and starts to cry (note, I say cry, not scream). He has no intention of getting into the examination chair or letting Dr. Bob come near him with those instruments. But while talking to him, he is willing to come sit on my lap, facing me. We play a short tipping game and before he knows it, his head is in Dr. Bob's lap. Simon is not happy about this, and is squirming as much as he can. But Dr. Bob is able to count his teeth, check the general condition, and confirm that he does have a few more teeth that are starting to get loose. And he confirmed that there are no cavities.

No cleaning. No x-rays. After a VERY brief attempt to scrape the tarter off with a pick (unsuccessfully), that task was done.

This was most definitely a first visit. We are going back in a couple of months and will probably continue to do so for a while so that Simon can become more comfortable with the idea. And hopefully he will allow Dr. Bob to do a little bit more. But given the nightmare I was expecting, this was simply an unpleasant experience. A success.

Baby steps......

Today Was The Day

2011-10-01T20:44:00.002-04:00

For about 2 years, I have been trying to get Rachel in a dance class. I have tried in her gym (which offers dance). I tried in several other private studios. I tried at performing arts centers. But I have had no luck. I tried calling these studios. No one would call me back. I tried to figure out ways to include her in what I was sure would be her favorite activity. But everything I tried didn't work. That is until about a month ago, when I asked my neighbor (who happens to be a dance instructor) for her recommendation.

At the time, I didn't realize that she was just opening a dance studio. And she didn't realize that I had been trying to do this for this long. She didn't intend to do this, but the day or two before that conversation, she had hired a dance teacher who had experience working with special needs children. That afternoon, we hatched a plan. And today, it became a reality.

A Special Needs dance class at The Studio of Dance is now a reality. Currently there are only two students enrolled, and we are all working to spread the word. But today, Rachel got up early this morning and dressed in her leotard with the ballerina skirt and she went to a dance class that was designed with her in mind. This class will teach her ballet and tap. And she may or may not excel. But she will have fun. And she will learn to do things correctly so that she doesn't hurt herself. But she can be the "Ballerina". She can embrace this strong desire she has had for as long as I can remember to DANCE and develop a true appreciation for the art form.

Movement comes naturally to Rachel. She loves gymnastics. She loves to stand on her head. She loves to move her arms. She loves to glide across the floor. She loves to move to the music.

I was so worried about this class. I was worried that after fighting so hard to find something for her she wouldn't like it. That she would be so rebellious that there was nothing they could do to help her. She was perfectly fine going into the studio and playing, running around and just having fun. But when the class started, these fears were sort of realized -- she was crying and really fighting. She opened the door and ran out of the studio. I brought her back into the studio and sat on the floor near the door. I had my camera (that was muted of course) and watched her for 5 minutes. I took a few pictures. I watched her teacher working with the two girls. I saw her start to relax. I saw her posing for the mirror. I saw her starting to have fun. And after a few minutes, I left her to the care of the dance instructor and slyly disappeared from the studio.

When we got home, she continued to dance for the rest of the day. She was moving her arms with grace and beauty. She was watching her skirt flow behind her as she ran around. She proved to me that she is definitely my ballerina.

I did good. And so did The Studio Of Dance. Thanks to them for giving my perfect daughter, who happens to have autism and ADHD, a chance to do what all little girls should have the opportunity to try. A chance to DANCE!!!!!!!!

Sleepless Nights

2011-09-29T13:13:00.005-04:00

Have you ever just been unable to sleep? Not fall asleep -- but sleep through the night? That's been where I've been for quite a while now. I fall asleep quickly but am awake starting around 3 or 3:30 and I'm lucky if I ever fall back to sleep. And it definitely takes a toll. My patience is reduced, my temper rises and I just feel lousy.

Last night I couldn't stop my mind from racing. I was thinking ahead to upcoming IEP meetings. I was thinking about Rachel returning to pre-K soon. I was thinking about a conversation I had before heading upstairs to bed. I was thinking about Daniel needing to finish his homework by the end of the week. I was thinking about Rachel's upcoming dance class. I was thinking about that past moment in Simon's music class. I was thinking about, well, I don't know what else....

There is just so much stuff going on right now. Rachel is heading back to pre-K on Monday. We will see whether the ADHD really was at the core of the problems she was having last year or if that really was not what was causing her failure to succeed. So many things are based on that fact. We are assuming that medicating the ADHD will solve that problem for her. We are counting on it. She will be going to a new developmental pediatrician on October 10 and we plan to go to this appointment armed with some data regarding her school performance. If we can compare where she was before and after the medication was introduced we can make a determination if we are doing the right thing and then work out some of the specifics. But we need that answer soon because her IEP Meeting is on October 11. We will be making a preliminary decision about her kindergarten placement at that time. That is MAJOR! All right -- in the grand scheme of things, it's probably not THAT big, but sitting here right here right now, that's what we've been working towards for 2.5 years.

Then there's Simon's teeth. He lost his tooth last week. I looked over during dinner and saw a space between his teeth. More than a space. A gap.

Yup.....he'll be 5 on January 12 and he has lost his first tooth. It looks like it came out cleanly with no sign of blood which means that it has been loose for some time. I saw something strange with this tooth a few days before, but since I know he grinds his teeth (much to my chagrin), I thought that he had ground his teeth so far that it actually affected the tooth's size. But how could I have NOT noticed this?!?!?! He has his first appointment with the dentist next Tuesday. That is going to be an interesting experience considering he won't even allow me to brush his teeth and he won't open his mouth for anyone. I'm creating a social story for him which will hopefully help to prepare him, and we're going to a dentist who has been trained in working with autistic children and their office has been informed of Simon's issues and sensitivities. But still, I'm TERRIFIED of what is going to happen on Tuesday.

Then we have Simon's IEP Meeting which is still to be scheduled. I have spoken to his teachers about my goals for his kindergarten placement and they are working with him to make it happen, but they warned me before the start of school that I am expecting an awful lot from him. Is it reasonable? But we're trying and I would like to think we are going to make it.

What is most frustrating is that I can fall asleep quickly enough. In fact, it rarely takes me more than 10 minutes to fall asleep once the lights are out and I've had a moment to settle into bed. You would think that these things would prevent me from FALLING asleep. But no....I get that initial sleep and then I wake up to think of all these things.....

I think I need to get more sleep....

Making Dreams Come True

2011-09-27T14:03:00.002-04:00

Yup....we're less than a week away from Rachel starting her Dance Lessons at The Studio of Dance. We are all so excited. I'm excited FOR her. And I'm patting myself on the back asking our neighbor seeking a recommendation for a dance class for her which is where this started. We don't know, like everything else, how this is going to go. But based on her apparent interest, I think she is going to LOVE this. I think that she's going to be entranced with the mirror and the barre. I think she's going to love making noises with her feet wearing the taps on her shoes. I think she's going to give this teacher a run for her money. But I also think she'll learn quite a bit.

Score one victory for Mommy!!!!!

I'm calling this my first success in my role as a Parent Advocate. Yup. I spoke with our local office of the Autism Society (MCASA) and asked if they had a problem with me calling myself a "Parent Advocate" since I really have no academic training -- just on the job experience with regards to my own children. They asked what I had been doing in that role and I described my Facebook page and this blog. I also told this individual about my responses on other Facebook pages, Circle of Moms and other websites. I also told him that if anyone asked me a question, no matter where, I would do my best to help them find an answer or give them an uplifting word. If I didn't have that, I listen and try to help provide a different perspective so that the person I was speaking to could perhaps think of things from that point of view. I don't know how many people that has helped, but I do try.

And he told me that, as long as I made it VERY clear if someone was to ask for my "professional advice" that I have ZERO legal training (which is implied with the term "Advocate"), I could call myself a "Parent Advocate". I do know where to look for information, but I cannot claim to have this knowledge. I am a parent of two autistic individuals. I advocate for them. I learn what I can to be sure to give them the highest likelihood of success in school and beyond. And I do my best. He told me that he would put my name and contact information on the list of parents who are willing to talk to those who just learn of an autism diagnosis reaching out for help and advice. That, alone, is something I consider an honor. He also told me about ways I can get more involved in their organization, things I plan for myself for the next several years. Unfortunately, right now that's not an option because all of the meetings are very inconvenient for our schedules, but they are not likely to change and our schedules will likely change as my children grow and change. By the time they are all school age, I may find myself more available for a more involved position within MCASA.

This summer, Kevin heard me talking to a stranger in a park near my in-laws' house who was coping with a recent autism diagnosis in her son. I was referring this person to a couple of Facebook pages (including my own) to give them a place to go to ask questions or get information. I also mentioned this blog. I don't know if this person ever took me up on my suggestions, but I made it available. He suggested that if I had business cards, it would make the transfer of this information so much easier. So, when we returned visiting family this summer, I went to VistaPrint to learn about creating business cards. I started playing around with the templates that were available for free to cheap cards. And I found a design that I really liked. It has 3 owls (like my 3 kiddos) sitting on a branch. And I added the text but decided I needed a title. That's when I contacted MCASA and got their permission to use this title.

These business cards are due to arrive in the mail today. I am very excited to see them on paper -- I've been seeing the computer image for a few weeks now. So, the career that I began to consider for myself nearly a year ago is starting to come true. I don't know how lucrative it will be, but that's not really the point. It's about helping people get through these first few years (this will expand as I learn more, I'm sure). It's about pushing for changes and education in the general population. It's about making a better world for my children and others who share their diagnosis and their family of diagnosis. It's about making my mark on the world for my children.

I'm feeling pretty good about myself right about now.

Matchmaker Matchmaker Make Me a Match.....

2011-09-20T12:33:00.002-04:00

....that's what I feel like right now. I just came back from volunteering in Daniel's classroom and found it an AMAZING experience. Last year I went with the kids to the computer lab where they played games and learned the basics of using a computer. This year I'm working in the classroom, filling in as needed while the teacher is working with the kids in small groups.

I know a few of the kids from last year. And they're a good group of kids. And now I REALLY get to see what is happening in the classroom. I see the independent and cooperative learning that they are doing and still spending the time with the teacher. There were some minor issues for Daniel with me being there (his need to show off, for example), but those will diminish as he gets used to me being there (he's only in first grade, after all). I really had a lot of fun and I am looking forward to coming back next Tuesday to do it again!

But I saw something specific in the classroom today that made me take notice. There is a little boy in the class who sits near Daniel. He's very sweet and well mannered (his chair accidentally tripped Daniel [who wasn't looking where he was going] and he IMMEDIATLY apologized). I was walking around helping people on whatever they were working on and I noticed this child was talking to me but wouldn't look me in the eye. Other little things throughout our conversation made me think that he was on the spectrum, but I can't ask the teacher, nor can the teacher tell me if this were the case. But I strongly suspect.....

Anyway, this boy was telling me about some of his favorite things. Star Wars and Legos top the list. Now, who does this sound like to you? DANIEL!!!!!!! He is OBSESSED with these things!!!!! These two boys would have a BLAST having a play date together. And, if my suspicion is right and this child IS on the spectrum, I would love for him to have a friend that would understand. Daniel cares very much for two children on the spectrum in his brother and sister, even though I don't think he would admit it to many people other than his family. It would help teach Daniel to be more patient and teach him some of the struggles that those on the spectrum experience every day. And it would give this other child, if nothing else, a friend.

And it would potentially give me a new friend/contact/kindred spirit. Autism Moms are often friends, not necessarily because we are the people who we would naturally seek out, but because we have something very personal in common and we share this bond that we never asked for. We learn from each other. We share knowledge more than most other groups I am aware of, because we don't want others to go thru the struggles that we have already dealt with. We want to see those around us continue to move forward rather than backwards.

I still want Daniel to be friends with this boy, regardless of whether he has ASD or not -- as I said, he's a VERY nice boy with many similar interests to Daniel and I think they would have a great friendship.

Gee, I feel like such a matchmaker.

Part 2

2011-09-17T21:15:00.003-04:00

Well, today was Simon's next music class. I spent most of this week working up a good mad, starting on Monday. Yes, Simon had a meltdown. But it was a mild one. And there was a cause. He had gotten hurt. He was in pain. Any 4.5 year old reacts when they feel pain. Some have learned to express themselves appropriately, others are still working on that skill. Simon is definitely in that latter group. With a lot of effort, we have been able to teach him how to tell us when he's hungry, thirsty, feeling discomfort.....but pain and illness are difficult for him. When we pair this with all the other things that were happening in his music class last week, who could blame him, autism or not, for coming apart?

Apparently, parents in his music class can blame him. Well, at least 2 parents -- as far as I know everyone else was all right with his behavior in class last week. But I spent all week thinking about what I was going to do when I walked into that room this afternoon. How I was going to "show them" how wonderful my very talented and gifted child really is (and I KNOW he is musically gifted -- that's not just "Mom" talking). I knew I had to explain Simon without being too demeaning. I knew I had to recognize that many people in this world are completely ignorant when it comes to dealing with disabilities. Heck, I was just 2.5 years ago before I was finding myself directly coping with this day in and day out. But I was still furious. I WANTED those parents to pay for what they put me through this week. I WANTED to make them feel small and petty. I WANTED them to squirm in their seats when I walked proudly into the class with my beautiful son!

All week I thought about what I was going to say. This morning, I took my mental script and did my checkdown making sure that all the high points were included. I went to the Facebook page that I am the administrator for (We Care About Someone With Autism) and made my question of the day reflect what I was about to face, making sure there were no areas that I had forgotten about. I knew I was only going to have 2-3 minutes at most to make this impression and I wanted to be the best possible advocate for my son.

So, shortly before 3:00, I walk into Simon's music classroom proud and ready to go. I know what I'm going to say. I go to the back of the room to set us up at a piano back there and Simon selects his preferred seat. We pull out the books and I continue to practice the homework assignments, making sure others can see how gifted he really is. We are singing the songs. He is clapping the rhythms. He's laughing his contagious laugh because he is having FUN. And he is proving that THIS is where he belongs. Then the teacher comes in. I stand up and ask her if I can have the floor for a moment, and she allows me to have my say.

Then I revert from a confident Mom defending her child, to a woman begging others for her son's acceptance.

All the facts and stories I had prepared to say.....gone. All I could do was introduce us, and say Simon has autism. Instead of advocating for him, I spend my time defending him. A part of me spent those 2 minutes I was talking just scolding me -- YOU KNOW WHAT YOU NEED TO SAY!!! But I didn't know who had called to complain. I didn't know if that parent was in the room. I didn't want to make things worse for him or for myself. I just chickened out.

Class went on and Simon did well. He did everything that was asked of him and excelled. He listened to the teacher and proved once again his aptitude for music. He was one of the better behaved children in the class. I spoke to his teacher at the end of class and she pointed out that she also recognized the difference between this week and last week. He made me a VERY proud Momma and proved to me that he deserves better than I gave him today.

COWARD!!!!!!!

When the "Big Bad World" Attacks

2011-09-12T20:42:00.004-04:00

I need to vent. I need to get this story out. I need to document a description of a phone call I had earlier today, so when all the dust settles, I can be reminded where it all started. So, if you aren't in the mood for reading a venting post, I understand. Hopefully the next one won't be like that.

This afternoon, I received a phone call from The Academy of Fine Arts. This is the school that Simon takes his music lessons. We started going there in November, 2010 and he has really been VERY successful in their programs. Well, this past Saturday was the start of the new term, and we arrived Saturday afternoon for his Harmony Road 1 class. This is the first in this series and he is now actually learning to play piano. He's learning to read music. He's really on the road to becoming a musician that we as his family know is where he wants to be. We hadn't been at the school since June.

We walk into the classroom. The pianos are different (the silver ones he used all last year [even when he was in this room are no longer there]). There is a different teacher. It's a packed class. There's a different teacher. None of the kids we were with last year are present. There's a new teacher. And the pianos in the back (where we typically sit so if a meltdown occurs, we are slightly more isolated) were taken. And, did I mention it's a different teacher?

The class starts well enough -- he's not behaving perfectly, but nothing out of the ordinary. Then he body drops when the other kids are dancing. I try to pull him up, but accidentally scrape his hand (scratch it hard enough that it's actually bleeding a bit -- he must have caught my ring). That's where it started. He begins to scream. I keep him there for a little while, recognize we have a problem and we go to the bathroom to wash his hands. When we come back, he's still upset and crying emphatically (but no longer really screaming), and we leave the classroom for a few minutes and go for a walk. We walk around the lobby for a few minutes. We walk in the halls for a few minutes. Then we go back into the classroom and Simon does what I feel is fine for the rest of the class. He's doing what's asked of him. He's participating. He does his part at the whiteboard (all right -- he needed a bit of hand-over-hand to draw the circle, but that's not unexpected). When the class was over, I spoke with the teacher and explained that I truly believed that the problems we saw were due to the first class and that this class really is the right one for Simon. And I described his musicality by demonstrating his behavior towards the end of the class showing the power of his ear and being able to mimic the songs that he was hearing on the piano, naming the notes (mi re do on notes other than E, D, C which is how these kids think of these named notes per the earlier classes [note, despite having played piano for YEARS, I have NEVER taught him more than the classes]).

Overall, I didn't think it went pretty bad. In fact, when I came home, I told Kevin (believing this sincerely) that, for a first class, it went quite well!

Well, apparently, I was alone. The office called me today telling me that they received complaints from the other parents. "They couldn't hear the teacher". "A child who can't behave in a classroom shouldn't be in this type of class". Even the teacher had said that she found it difficult to teach with him behaving in this way. The administrator commented that she knows that ALL children have meltdowns from time to time but because of his autism we need to consider pulling him out of this class and going in a different direction. The administrator talked to his teacher from last year (prior to calling me) and the teacher commented that once he had a chance to acclimate last year, he was a wonderful and talented student. This teacher and I discussed his placement for this year as the semester was ending last year and we both agreed that this was the better class for him. And seeing him pick up on everything they were doing, despite his meltdown (which had a distinct cause) tells me that we had made the right decision. The administrator has agreed to give it more time and see if he does better once he "has some time to acclimate to this class".

My instinct -- stand in front of this class on Saturday, tell these parents what they can do with themselves, and walk out, taking my business and money with me. But that won't accomplish ANYTHING. We looked long and hard for a music program for Simon and we found one here. I hate to pull him out just as he's reaching a point where he can make such measurable progress because of the ignorance and impatience of others. So, it's time for me to put on my "Parent Advocate" hat. It's time for me to educate these parents. Before class on Saturday, I plan on explaining to the class that my son is autistic. I plan to remind them that autism is NOT contagious and affects 1 in 70 boys in the United States alone. Simon is more severely affected than many others in many respects, but he is ahead in many other ways. Last week, a specific moment set him off and I will work harder to minimize that happening again. I will seat us in the back of the classroom so that he can be less disruptive and more isolated when and if a meltdown occurs. But he does have meltdowns. He does react to things that go differently than how he is prepared for them to go. And as he understands what is expected, he complies. I plan to mention how he THRIVED in the music classes last year after a week or two and was never the reason that another student or parent couldn't hear the teacher. He always waited his turn (unlike some of his NT classmates) and tried everything that was asked of him. And he made "friends". On Saturday, he walked into a full classroom with no familiar faces other than mine, including the teacher. Over the next couple of weeks, that will change. He loves coming here and this is the class where he belongs.

And I'll keep the comment of "And if you don't like it, you can just )$(@$% it!" to myself.

Simon's not the only one with a long memory....

2011-09-10T20:56:00.003-04:00

Here I am, just shy of 40 years old, and today I think I discovered a new phobia of mine. Firehouses.

Well, not quite firehouses -- just one firehouse. Just the thought of approaching it with my family I can feel my heart rate rise. All I can say is that I'm grateful that it's no longer our local firehouse (we live in an area that is growing at such a huge rate that they recently built a new one closer to our home).

Why did I realize this today? Well, because today they were holding an Open House for the local kids to come and take a look around. They were inviting kids to explore the house and the engines. They would explain to the kids about fire safety. They were performing a HUGE community service, more so than what they do every day. And how did I learn about this? Representatives from Rachel's gym was going to be there helping out, and of course, being Saturday, it was Rachel's gym day. Her class still went on as scheduled....they just had a smaller amount of staff on hand at the gym than usual today. But there were signs.

At some point today, Daniel realized that this was going on. He asked during lunch if we were going to go. You see, he's been there once before and he remembers the experience. He had a great time. He had just turned 4. He got to explore the firehouse. He got to try on parts of the uniform. He even got to climb onto a real-life fire truck. It was really a lot of fun for him. I was there too. So were Rachel and Simon. But it wasn't fun for us. In fact, it was TERRIBLE for us.

(Time tunnel swirlies appear)

You see, that was when our journey into this "Autism World" that we inhabit had just begun. We had just receiving services (probably only a few weeks) and attended a field trip with our local early intervention (EI) program. We didn't know any of the families -- this was probably our first exposure to them. But on a Wednesday morning, I put Daniel, Rachel and Simon into the car and we drove over to the firehouse. We got out of the car and left the stroller behind (you see, I promised myself any time we did anything with the EI team, I wouldn't use the stroller). I had to learn and so did they, how to handle not being so tightly confined. We were there a bit early (we are always either early or late for anything) and we got to look around a bit before the others got there. Daniel immediately jumped right into the experience and was just fine. Rachel and Simon were a bit apprehensive and we were already starting to see the meltdowns. I no longer remember the details but I remember trying to settle Rachel down during one of her worst tantrums ever just in time for Simon to go running off. I remember one of the EI teachers chasing him and trying to keep him contained. I remember trying everything I could think of to engage either of them. We were finally able to settle Rachel down and get her to have a positive experience when she discovered the reflective surface of the fire engine. She had discovered a mirror. And a BIG mirror. And she was able to stare at herself and model to her heart's content. Simon just went from one issue to another. Nothing would grab his attention.

Finally the visit ended. It felt like hours, but in reality, it was probably about 30 minutes. I managed to get them back into their car seats. We had "survived" the experience. Well, the kids survived the experience. I was scarred. I remember turning on a movie for them in the car (something we only do [typically] when they are about to take a long drive) and drove around aimlessly for probably about another hour. You see, driving is one of those things that I do when I need to clear my mind. I can think while I drive. I have explored so many neighborhoods and learned of many hidden treasures in the area through these mind-clearing drives, including where to find the most incredible string of dogwood trees in mid-March. The only other part of that day I can remember was receiving a phone call from EI services while all 3 kids were taking a nap to ask how I was doing (I'm sure they were able to see that I was struggling while at the firehouse -- I'm not exactly adept at hiding emotions [hence why I NEVER play poker]).

(Time tunnel returns to bring us back to present day)

That was nearly 2.5 years ago. Since then we have all learned so much. I'm sure the experience would be completely different if we were to try this again. Yet today when the opportunity had come up, I was grateful to have Rachel's gym class so that I didn't have to go back there. I appreciate everything that our local fire department does. Just like firefighters everywhere, they are willing to risk their lives in order to help protect that of my own and my family's. But if I can possibly avoid it, I don't plan to ever step foot in that particular fire station. Again.

Time is Mine Again

2011-09-07T13:43:00.000-04:00

What happened? I'm sitting at the computer, 1:21 in the afternoon. There are no kids behind me crying that they want to use the computer. No one claiming that it's their turn to play on the Wii. No call for a particular television show. No cry of calling for the bus or for a favorite teacher. No questions of "Where are we going to go today, Mom?" It's just me. Television is playing a Food Network show that has been sitting on our DVR for some time. The washing machine (and dryer) are running. The rain is falling on the deck with some distant thunder rumbling. But there are NO CHILDREN HERE!!!!

Yes, it may have taken a long time, but all 3 of my kids have now started school. Rachel had her first day yesterday. She got off the bus and announced that she had a "Fun Day!". Daniel has already managed to get into trouble with his teacher, breaking a mirror trying to create a self-portrait. Simon has already used a sick day (yup, he had a fever over the weekend and had to stay home from school for a day). Reports from Rachel's and Simon's teacher have been positive telling me that they have adjusted nicely.

I still have a few worries about Rachel and her adjusting to her new classroom. She still talks about "Ms. Suzanne" as her teacher. At this point, I'm not sure if she recognizes the truth and that she has a new teacher this year and "Ms. Suzanne" is what she calls school, or if she is refusing to accept this truth. I'm beginning to think the former. We are still holding off bringing her to Pre-K until the school year establishes itself, so at least 3 weeks. We have her next doctor's appointment on October 10 and we will need to make a decision of whether and (if so) how to change her medication regimen. That will be based on her school schedule. I really would like to see her in that pre-K classroom for the full time (full morning or afternoon) as quickly as possible, so we can ascertain where we need the extra work to prepare her for kindergarten.

This year is going to be a bit crazy. We have set a lofty goal of sending both Rachel and Simon to our home school for kindergarten next year, even though they will likely be going into special needs classrooms. I would also really like to see Rachel (at least) brought into a typical classroom for a portion of the day. Additionally, Daniel really needs to settle in to his new routine. In addition to starting school, he's started soccer and we hope to get him involved in scouts soon. Gymnastics continues for both Daniel and Rachel, Simon begins piano lessons (yes, they are now piano lessons) on Saturday, and we have found a Dance class for Rachel. Daniel also needs to begin his religious education this year. Additionally, I have my own responsibilities. I am a classroom volunteer in Daniel's first grade class. I am on the board of a local MOMS Club International chapter. I also am the Volunteer Coordinator for our home school's PTA. I'm trying to get a career as a Parent Advocate started. I administer a FB page and try to keep myself organized on other fronts. And I still have this house, a dog and other random responsibilities.

I think I've bitten off more than I can chew. This week is about trying to figure out exactly what I need to get done on monthly, weekly and daily basis. I plan to truly organize myself by setting schedules and "To Do" lists. I know there is time for everything -- I just need to figure out when that is.

But with the start of a new school year comes a new set of responsibilities. It's a chance for me to start being ME again.

Apologies and Explanations

2011-08-31T21:00:00.001-04:00

I want to apologize for last night's post. I was, to put it mildly, frustrated and a bit disheartened. Things have been going so well with Rachel (with the exception of the ADHD issues) for such a long time that, when things surface, it always seems to be a slap in the face. And to top it off, I was getting near the end of my stint as a single parent around here (I still have no clue how the many single parents manage). This was my first true "venting" post in a long time.

But I think the problem is that, as I mentioned, it's always been difficult for me to cope with Rachel being "Autistic". I never seemed to have this trouble with Simon. But I refused to see it for a long time -- when the symptoms were present but nothing was being addressed, when we first requested assistance, when people started telling me she was on the spectrum, even when we started seeing the drastic improvements when we started initiating the ABA. That was probably when it started sinking in -- if she wasn't autistic, it wouldn't have been so successful (well, it would be successful, but it wouldn't be the only thing that we were seeing such success). Even now, I often seem to forget about the "Autism" and focus on the ADHD. It's still the "A-word", but perhaps it's easier for me to face.

But she IS autistic. I know this, and have for quite some time now. We have these moments where it just comes and knocks me back to reality. And every time it happens, it really feels like we've taken so many steps back. It's a reminder of how far behind she really is, despite everything we do. It's a reminder that she will probably never be what most people consider "normal". I mean, what "normal" 4.5 year old takes their poop and smears it on themselves, the wall, the bed, the kitchen table, etc.? A "normal" child doesn't do this at this age. An "autistic" child does. And her diagnosis is "Classic Autism, Severe". Even though she has learned to talk; even though she's now saying special things like "I Love You!"; even though she is extremely intelligent and an interesting individual who I love very very much, she still has "autism".

Autism isn't something that is "cured", despite what people like Jenny McCarthy say. Autism isn't something that will ever leave. It's a part of who my younger children are. What I can hope for is that they learn to control these impulses and can learn to live functional lives. Hopefully they'll be able to live on their own. Hopefully, they'll be able to have families of their own. But today, I can't know if that is what the future holds in store for them. And times like this week, it's just a harsh reminder of these truths.

Potty Training Woes

2011-08-30T20:36:00.005-04:00

When I decided to sit down and write a post entitled "Potty Training Woes", I had envisioned it would mean several different things. Constantly laundering Size 6 briefs. Fingers wrinkled beyond recognition from scrubbing articles of clothing. Wet spots all over the floor. Frustration of trying to get this kid to finally put the pieces together. Never in my wildest dreams did I expect to be writing about the content of this post.

First of all, 15 months after considering a child fully potty trained, I never imagined that we'd be struggling with this and Rachel. Yeah, we've been seeing more frequent accidents from her (and urine accidents which were always EXTREMELY rare). But we're seeing something new. Something maddening. Disgusting. Appalling. And, because she's potty trained, I'm really not sure what I can do about it.

We're talking about the "S" word. What could that possibly be? Well, I'll tell you. SMEARING. For the last few days, she's been releasing a small amount of BM and making sure she can get her hands in it. If there's enough there, she will start writing on the walls. She's done this in her room at night. She's done this in the basement where we keep most (if not all) of her toys. She's even done this at the kitchen table when my back is turned for 30 seconds. No place is safe.

The only solution I know of that has seen success is something called a "Wonder Jumper", designed and available through this website (I-Kids Fashion David Cavaliere). However, because she's potty trained, we need to be able to get her undressed to use the toilet as needed, which makes this an inappropriate solution to our current problem. But since she has been finding so much pleasure in her new activity, she is intentionally releasing just enough. When she does this, she also urinates a bit. Today alone, she has been through 5 pairs of underwear due to these "accidents". But she definitely has the control and the will. There is clear and present INTENT at work here. She gets the reaction she seeks in my frustration and anger. So, I try not to show it. But how can I not? So, all I've managed to do is make the problem worse.

Talk about a HUGE regression. And, of course this happens this week....when school is starting and my patience is completely exhausted. While Kevin is out of town for a few days for a business trip. When all I want to do is ball up somewhere and hibernate to recover from this insane and rather unpleasant summer. I hate the fact that I am preparing to start the year with a lengthy note to her new teacher explaining this new behavior, just as we are trying to prove that she can function in a school for typical children as well as those with special needs, rather than sending her to a school where there are no possibilities of integration. I'm just hoping this is a TRUE regression and, once we get back into the routine of school and things have a chance to settle down, we will see all of these behaviors completely disappear.

But the truth is, I'm scared that this may have something to do with the ADHD treatment. May that have caused her to regress like this? She doesn't do anything like this while the drug is in her system, but once it works its way out, these behaviors seem to surface. We are trying to get her impulses under control with as little intervention as possible. Do we need to stop all together? Or do we need to medicate her further? Or is this purely a behavior that we must address?

I really just want run and hide from the world right about now.

(but on the plus side, the boys are both having a great first week of school [based on 2 days])

School is Coming

2011-08-27T12:49:00.000-04:00

This is something that parents look forward to, probably more than most things during the year. This is also something that children look towards, some with anticipation, some with dread as it is a clear milestone for them. Return of routine. Return of strict structure. Return of goals. And return of worry.

School is where we see the most progress in both Rachel and Simon. This is where they learn how to be with their peers and where they assess their ability to cope in various settings. They introduce as many settings as possible to teach them to cope. And they use these experiences to determine placements. This year, at their IEP meetings in the first couple of months of school, we will be targeting their kindergarten placement. It will be too early in the school year to make assignments, but I have goals for each of them and they are both attainable, if everything goes well. But we have to work. I'm gearing myself up for a VERY busy year. It's quite worrisome, but I know everything will work out fine.

Yesterday was open house. Yup, 3 of them. Simon's was at 11, Rachel's at 2 and Daniel's at 4. There were issues at all 3. When we went to Simon, I had both boys (Rachel was at her last day of gymnastics camp at The Little Gym (which she LOVED). We pulled into the parking lot and Simon threw a FIT. He did NOT want to go. He didn't want to get out of his seat, even though I had been telling him that we were going and he was going to see his teacher (Ms. Evelyn) who, although she has never been his teacher for school before (but has been for camp), he is familiar with her since he started the program. But no...."NO SCHOOL!" he kept shouting. Well, I suppose I should be happy that he recognized we were at "school" and that he was expressing his opinions so effectively. But, starting Monday, he'll be back there. I eventually got him inside, promised I wasn't leaving and he did have fun once he started recognizing his friends, teacher, and, most importantly, books. We were there for nearly an hour and he did eventually relax and have fun. The bus will come to pick him up on Monday and we may have some issues there, but I hope his anticipation will outrank his fears and trepidations.

After picking up Rachel from camp, we headed over to HER open house. We got there pretty much right on time, along with the rest of her school. And, unlike Simon's school, this is a full elementary school (Simon's school has a total of 12 students currently) which means that we were facing a lot of kids, parents, teachers, administrators......it would be overwhelming to anyone, much less a 4.5 year old girl with autism. Daniel was excited to be there....another place for him to explore. Simon knew it wasn't HIS school so he too was fine. Rachel was SCARED. She tried to hide behind me. When the principal got down on his knee to say "Hello" to her, she just clung to me even tighter. He recognized the need to back off and addressed her later in her own classroom rather than in the crowded entryway. She has been asking about "Ms. Suzanne" since summer school has ended, even though she will no longer be in her classroom. As we were going down the hallway, she suddenly seemed to understand that her teacher was changing and decided to give "Ms. Suzanne" the cold shoulder (how DARE you switch me to someone else's class). But again, as she recognized where she was and all her favorite things were still there, she seemed to settle into it all.

I had a lengthy conversation with her new teacher about what I was hoping to see about her kindergarten placement and how the Focalin should really help with her attention issues that we were seeing last year. We are still waiting to see whether she will be joining the morning or afternoon pre-K, but once we know that, we will be able to determine if we need to start administering the medication before she leaves for school or during lunchtime. They intend to wait a couple of weeks before making that determination, and I will allow that to happen. But again, since my goals for her are aggressive, I can't allow myself to become complacent.

Then we were waiting for Kevin to come home so I could take Daniel to HIS open house. After all, he had been to the other 2 (and had a blast since their classrooms are full of toys). By the time he came home and we walked down the hill, the Open House at his school was over. We were able to figure out who his teacher was, find the classroom and review the class roster (only 2 kids from his class last year are in his class this year, but fortunately, one of them is someone he considers a friend) and none of the other kids he talked about last year are in his class. But we never got to meet the teacher. So, on Monday, Daniel will get to meet his teacher for the first time. He has actual DESKS this year, which is a change. But what was his impression of the classroom? BORING!!!!! I tried to explain to him that he (in first grade [and a typical first grade classroom]) wasn't going to find a room full of toys like his brother and sister, who were in pre-K. But I think he's a little jealous.

But the boys both go back to school on Monday. Rachel starts on 9/6. Our extracurricular activities are also starting again these next couple of weeks. Our lives are about to go back to being a series of routines. Everything we do will be based on schedules, because that's just the way we are. And I think everyone here will be happy about it!!!!!

Vacation In Connecticut

2011-08-23T20:52:00.003-04:00

Every summer (well, for the last 4 summers, at least), the kids and I make a trip to Connecticut to spend time with family. It's always been a bit strange because Kevin doesn't come with us and we are with his family for most of the trip, but it always seems to work and the kids always have a great time. And, as the kids continue to grow, we are doing more and more things with them.

One of our recent discoveries there is the Children's Museum of Southeastern Connecticut in Niantic, CT (approximately a 5 minute drive from my in-laws' home). We sometimes sign Daniel up for a class that they are hosting and we always go and bring the kids to play. They have their favorite exhibits, including a real submarine for them to explore. They have water tables, sand, trains, magnetic blocks.....a kid's DREAM come true. We had a free pass to use by the Monday we were visiting, so we just decided to show up (in the middle of a HEAVY downpour in a summer beach town). It was SO crowded. I wouldn't be surprised if there were over 200 kids there, and at least that many parents or grandparents. It was so hard to keep track of our kids -- it was not only me and my kids, but my mother-in-law, sister-in-law, and 2 nephews (12 and 3 years old). The 12 year old was chasing after Rachel as she couldn't stay with any activity and overall I just couldn't wait to get out of there. Then, when we got back to my mother-in-law's house, we looked through the brochures and we saw something that changed my views of this museum forever......a monthly AUTISM FAMILY NIGHT!!!!!!!!

My mother-in-law IMMEDIATELY called the museum to see if there was any available space that Friday night (the next scheduled event). They had space so we signed up Rachel and Simon. I was going to go with them and we decided that the 12 year old would come as well. Daniel heard about this and decided he wanted to go as well, so my father-in-law decided to come as well (so that we'd have one "adult" with each of my kids). Friday night came, and we headed out. After our experience on Monday, I was really worried about what was going to happen. How many kids would be there? Would there be adequate supervision? Would the kids all be having simultaneous meltdowns?

It was the most AMAZING museum experience I have ever had. All 3 of my children had a WONDERFUL time. They had at least one paraeducator for every child that was present. They were working to make sure that not only did the children have fun, but they had the opportunity to LEARN from the experience. Most of the kids there were quite young (I would guess 6 and under), with 1 exception. And I didn't see anyone having a bad experience. I spoke with the director and asked if this was an ongoing thing or if it would be ending soon. She told me that they have a grant through July 1, 2012 that allowed them to do this event monthly and they were going to apply for a second grant to have another monthly event to provide respite care for these individuals.

Now we know how best to attend the Children's Museum of Southeastern Connecticut, at least for our family. I hope they continue to have these events -- it is a great experience and it allows these kids to experience a wonderfully designed children's museum without the insanity that would typically be present in such a place.

Rachel was just EVERYWHERE!!!!! She had SO much fun!!!!!!

Simon also had a lot of fun, but he REALLY loved the sand!!!!!!

Daniel had a lot of fun too!!!!!

But everyone loved to play with the spinning pennies!!!!!!

And, one more thing to share from this trip.....Rachel has become a true performer. I've posted at least one other link of her showing off her singing talents. Her love of the Laurie Berkner Band is never ending, and she is LOVING the band's new DVD, Party Day. One of the songs on this DVD is "Good Night". So, she would like to say Goodnight to all of my readers.

Goodnight from Rachel and from her Mom!!!!!

It's Vacation Time

2011-08-18T22:09:00.003-04:00

Well, it's been about a week since we left our home in Maryland. We spent a night with my parents and then headed to my in-laws for a week-long stay. Most of this stay, it's just me and the kids. Well, sorta.....Daniel stayed with my parents for a few days before coming to see his "Other Grandma and Grandpa".

This trip is always "interesting". It's very strange staying with my in-laws without my husband. They are definitely welcoming and don't do anything to make me feel uncomfortable, but it always feels like there is that piece missing. But I have to admit, as this is the 4th time doing this, we keep coming back for more. And I've become closer to my in-laws than I had previously believed possible. But it's still strange.

This year, it seems especially so. We are still working out the details of medicating Rachel. Simon keeps coming up with new behaviors. And Rachel, well, we still don't know quite what's going on with her and her exploration of empathy as we like to think of it. The older cousins are getting older and aren't interested in playing with their baby cousin, Daniel, as much anymore, as much as Daniel really wants to play with them. Daniel is spending more and more time here with his younger cousin (who is about a year younger than Rachel and Simon). He's enjoying the time with him -- in fact, this year he was specifically looking forward to playing with him, but I can still see the disappointment in his face that the big boys aren't interested in the same things as he is, at least in such a way that he can clearly recognize.

But it's also harder seeing my younger nephew who, like I said is a year younger than my twins, and see where he is and what he can do compared with them. Until now, he was behind them in most respects, as one would expect. But you call him and he will come. You ask him to do something, and he does it. You see what you are supposed to see in a typical 3 year old. Then there's Rachel and Simon. I have to call them 3 or 4 times before they acknowledge me. I have to tell them to do the same thing over and over again, and I consider it a success if they simply give me eye contact, not to mention actually DOING the task. I have to watch them in the playground to make sure they don't find the open gate and walk out into the parking lot (which Rachel has now done TWICE). Bribery is my friend.

The twins are only 4 years old. Their cousin is 3. By next year, their little cousin will have surpassed them in almost every social measure if things continue on the paths that they are currently on. He's already more advanced in quite a few ways. And I know this shouldn't bother me. He is a happy neurotypical little boy who has 2 brothers that he IDOLIZES. They are much older than he is (12 and 14) and they are his standard which has led to him maturing, in some respects, faster than one would expect. He is a very sweet little boy. My twins both have autism. I have to think of things that most parents don't bother with because they know their children will respond to someone calling their name. And I've been living with this for nearly 2.5 years now.

But still, seeing him can be hard. He is going to outgrow my children in just a couple of years. My kids should be outgrowing HIM right about now (to come back to him in a few years). I'm being petty, I know.....but part of this trip has been a constant reminder of how much my kids have lost because of their diagnosis and me wondering if they will ever find something that will make up for all that autism has caused them to lose.

Strange Behaviors

2011-08-12T22:20:00.004-04:00

For a while now, we've been watching a strange behavior come over Rachel. She always seems to get upset when Simon is upset. If he's crying, she feels the need to cry as well. Or, when he's angry, again, she will get upset. She will put up with him doing things to her that no one else could do (including hitting, punching, kicking, pulling hair, etc) and she will only rarely complain about it. But until now, it's only been between the two of them.

Now it's spreading out. Simon gets upset. It could be about anything -- a television program comes on that he doesn't feel like watching......his turn at the computer has come to an end.....or we have put our foot down about some behavior that has been driving us crazy. Like I said, it could be anything. And, as expected, Rachel gets upset about it. But now instead of coming to us crying about it, she seeks out Daniel. Most of the time, Daniel is off in a different part of the room and has nothing to do with what has made Simon cry out. But Rachel doesn't care. She will jump on him. She will start pummeling him with her fists. She will kick him and knee him in the chest. She has become like a child possessed. And she won't stop!!!! We have to get up and intervene on Daniel's behalf (because he won't do anything that could possibly hurt her -- this is Rachel, not Simon, after all).

This behavior started prior to starting the Focalin, so the new medication isn't the cause. I'm sure of this part because I actually brought it up to the doctor before the medication was prescribed. She suggested, instead of the modified time-outs that we were doing, to give her something else to hit that wouldn't cause harm to anyone (or anything), such as a pillow or a stuffed animal. And we have initiated that intervention. Every time we start seeing her running towards Daniel, we remind her to hit the pillow. And we have a pillow almost everywhere we go. But it's definitely not her first choice. She WANTS to attack Daniel.

But, if by chance Daniel is not around, she still won't seek out the pillow to hit. It turns more inward. She will start hurting herself. Her preferred means is to bang her head into the floor, the wall, the table, etc. If she's sitting strapped in her booster seat, she will knock the chair to the floor and then start banging her head on the hardwood floor. And the behavior is getting worse.

So, I'm watching this very VERY closely. I am still giving her the Focalin because, as I said, I really don't think that is the cause since the behavior started before the introduction of the medication. But I am holding the dose at it's current level for a while, even though our goals have not yet been met. I just want to see if the medicine is making this worse and contributing in that way. Even if I don't see anything to support that theory, I am definitely bringing this up with the doctor when we talk later this month.

But there are days......

Chemistry Experiment

2011-08-07T20:29:00.003-04:00

Yup.....I'm engaged in a chemistry experiment. And the subject.....my daughter, Rachel. We started pumping her small body with (very very VERY) small amounts of medication to help her master her impulses.

Specifically, we started giving her a drug called Focalin. It is very similar to the more commonly known drug, Ritilin, but it's supposed to have eliminated one of the key side effects (its effect on appetite). Otherwise, the mechanism by which it works is, in theory, the same. On Friday, I met with the developmental pediatrician and we discussed a few medication options. In my opinion, this was the best. It's a short-acting stimulant that, once it's out of her system, it's pretty much gone. If we don't like what we see, just deal with it for about 4 hours and then we're back to where we started. But because it is so short-acting, she will likely need more than one dose to get her through her day at school, or we may have to time things differently.

Before beginning treatment, the doctor, Kevin and I sat down and developed a short list of measurable goals to track for success or for failure. They really are quite simple and reasonable. (1) She needs to be able to sit in her seat for mealtimes (target 15 minutes), (2) She needs to be able to follow the group in her weekly gym class (class lasts for an hour) without aimless wandering, (3) She needs to be able to listen to books before bedtime, and (4) We would really like to see some growth in the joint attention skills (more eye contact, in particular). We are watching each of these 4 things and rating them with each dose. This way, when I talk to the doctor in a couple of weeks, we'll have a reasonable measure of how successful this medication has been and when we will have a better understanding of when we have reached our target dose.

So, that being said, we gave her the first dose yesterday morning. We cut it to the appropriate size, hid it in a blueberry muffin, made sure she ingested it and watched. We knew it would take approximately 30 minutes to take effect and that the effects would last about 4 hours. Well, we didn't have to remind her as often to keep her chair still. We didn't need to remind her to keep her hands clear of herself as we normally do. But we really weren't seeing much else. I took her to gym class and there really was no improvement there, but the class was shortly before the medication would wear off, so we don't know if that was what was really going on. Today, the results are similar. Tomorrow we increase the dose.

So yes, my daughter has become a chemistry experiment. But it's a controlled one and it will hopefully help her in ways that we can barely imagine. We've seen so much improvement in her ability to function over the last 2 years. We just need to make sure that we give her all the tools possible to keep that growth active without causing other forms of harm.

Hopefully, we have found our answer, once we hone in the details a bit more. Time will tell.

The strangeness continues....

2011-08-04T20:18:00.003-04:00

.....I've mentioned before that Rachel is sensitive to Simon. If Simon gets upset, so does she. She will cry. She will come over and bury her head in our necks. And we know this behavior holds true for some other children to whom she has a "sensitivity" for. However, this has been changing. And in a very odd way. And a very unpleasant way as well....

At home, whenever Simon gets upset, she no longer starts to cry and comes to me or Kevin for comfort. She will run over to Big Brother Daniel and ATTACK him, like it's his fault. She will hit him. She will try to pull him down. She will knee him in the chest if he is lying down. She will climb onto his bed and wake him up if it's early enough in the morning. She'll even try to strangle him. It's like she becomes a child possessed.

And today, things got even stranger. Hurting Daniel wasn't solving the problem, so now she's taken to hurting herself. She will bang her head into the table or onto the floor, then come over to us crying because "Rachel bonk". Well, DUH!!!! When you bang your head into the table or the floor repeatedly, it's GOING to hurt!!!!! She seems to recognize that she's not getting the comfort she needs from us when she's just coming to us. We keep telling her that she shouldn't be upset just because Simon is upset. So, now she seems to be legitimately making herself upset and crying. I think she's hoping this way she will truly get the sympathy that she craves. And also by hurting the way Simon appears to be hurting, perhaps she can take away some of his frustration.

Tomorrow I'm following up with our existing developmental pediatrician to go over the ADHD issues. The appointment will have several goals including her informing us what she believes we need to do to address the ADHD, but also to help us find someone who will continue to follow our cases once she retires in a few weeks. You can trust I'll be bringing this stuff up (as well as other issues).

There are always more questions.....

Interim Reports

2011-07-27T12:10:00.001-04:00

When I was in high school, I used to dread the receipt of report cards. Sometimes it was because I was embarrassed or ashamed of my grades. Other times I just didn't want anyone else to know what was happening at school. Perhaps I was nervous about meeting expectations. It was long long ago. But now I'm the parent who watches and listens to see how HER kids are doing in school. But they still make me nervous.

Yesterday, I had previously arranged for a phone conference with Rachel's teacher to discuss her progress during Extended School Year (ESY). The last few notes from her teacher have been worrisome so I was a bit concerned going into the meeting. What was going on with her? We haven't be able to do anything about her new ADHD diagnosis as we are still waiting on meeting with the doctor again. She's been "sad". Huh?

And then there's Simon. I received a note last week that his teacher would be calling me to discuss his progress during the summer. There has been minimal communication during ESY between me and his teacher -- when I pick them both up at camp, I ask how his day went and I get a 1-or-2-word answer.

Well, the phone rings yesterday morning at 8:45. I'm not expecting Rachel's teacher to call until 10:15. When I look at the phone, it's MPAC (Simon's school). No time to prepare.....what has he been up to? Has it been a good summer? Or is he just getting by? Deep breath, and pick up the phone....."Hello?" And then we get started.

His teacher is telling me about his ESY goals and how he has progressed positively on all of them. He's not only maintained, but has continued to make significant improvements, including being able to sit and perform tasks for upwards of 10 minutes with minimal prompting. So, time for me to ask my 2 big questions.

Easy one first.....do you think he's getting close to ready for "potty training"? I've been seeing some signs lately, but because of the many changes that were pending (school ending, ESY, travel in August), I haven't wanted to touch on this yet. She felt that he is definitely ready to begin potty training. So, once he gets settled into the next school year, we'll start working on that. We suspect he will be much more difficult to train than his sister. But time will tell.

Now, the big question.....this is a teacher who first met Simon on July 5, but she is an MPAC teacher and is familiar with MCPS (Montgomery County Public School) programs.....with the added year of pre-K that he is about to start, will he be ready for "The Learning Center" for kindergarten, or will he need a more intense program (with work in the appropriate areas)? Her feeling is that he's not quite ready for it yet, but we should definitely consider this as his track and work on making sure his IEP goals for the school year prepare him for this learning environment. SUCCESS!!!!!!!!

So, one down, one to go....

At 10:15, the phone rings again. This time it's Rachel's teacher for our previously planned conference. Her teacher begins to explain to me what she means by her feeling that "Rachel is simply 'sad'". She seems to have a connection with another student in the class (and bus), similar to her connection with Simon. She really cares about his feelings and wants him to be happy. Unfortunately, this other student is often sad and cries often. On the days that this boy has been absent, she's been very happy. But when he is present, she is often subdued. I love that she shows the empathy, but hate that it expresses itself in this way. This is something we need to seriously work on. But, on the plus side, when she is subdued like this, her ability to focus increases. She seems to lose the wiggling and the jumping tendencies. I have to be sure to bring this up with the doctor when we do meet next week to be sure that we don't medicate her to that extreme -- I want her to be a happy little girl, not on the verge of tears all the time, even if it does mean she's a bit more hyper.

On another note, she has been able to work in small groups this summer, something that she really hasn't been able to do up to this point. This is a crucial skill for kindergarten. And, considering we have another year, if we can get her focus under control, who knows what we're going to see when she enters kindergarten in the 2012-13 school year.

So, two parent/teacher conferences done by 10:45am yesterday. Two positive reports. And we know what we need to do for both of them as we prepare to begin another year of preschool. If we can work out some of these issues, I will realize my wish of having all 3 of my children attending the same school in a year. That thought makes so much of this worth while.

What do people see?

2011-07-19T12:42:00.003-04:00

What do people see when they see me walking with (specifically) Rachel and Simon? Do they see a mom with 2 kids? If we are having an "A-moment", do they think how could I allow my children to become such spoiled brats? Or do they actually see the autism? Can someone who has never seen me or my children before recognize the struggle that I must mentally prepare for every time we leave the house? I always feel I have to explain myself or their behavior away, even when things aren't so bad. I feel I have to prepare everyone for the imminent breakdown that is coming so they don't see me as "that terrible parent". I shouldn't care about this so much. I shouldn't anticipate the negative moments.

But I do.

They happen all the time. Things aren't as bad as they used to be....we have learned several tricks over the last couple of years (gummy bears and cookies are probably our most successful ones). When I would pick Daniel up from school this year -- I was known as the "Gummy Bear Mom" because I always had a pocketful. I would hand them to Simon periodically as a reward for good behavior, or when he asked me appropriately. Most of the Moms around me, knew us by the end of the year, but what did they think of my parenting techniques before they came to understand our struggles? And, again, why did I care?

Today, I will be picking Daniel up from his second day of camp at a facility Rachel and Simon have never been to (Hill's Gym). It's a gymnastics facility, similar but much larger than the familiar "The Little Gym". Yesterday, when I picked him up, Kevin was with me and he stayed with the twins in the car while I collected Daniel. Today, he's back at work and I have to do the job on my own. I can see it now. Rachel is going to try to get into that gym. Simon is going to just stop in his tracks, causing me to drag him inside the facility. Because of these fears, I'm going prepared. The leashes are in the car and I'm going to put them on these two before heading into the building. That's going to cause it's own battle and we'll already be on a losing path before heading in. But the need to contain them outweighs the possibility that they will behave when they get inside. I'm actually almost hoping for rain so that I have the excuse to keep them in the car while they bring Daniel to me.

And what will these people think of me? These two look like they are 6 years old at first glance because they are so tall (even though they are only 4.5). 6 year olds aren't led by these leashes (oops....I mean harnesses) -- they are designed for 2 year olds. 6 year olds aren't given gummy bears every few minutes for good behavior. There is no parent that will be there today who knows us. No one knows that we are an autism family. No one knows that my kids behave more like 2 or 3 year olds despite how they may appear at first glance.

People have asked me what autism is like on a daily basis. This is probably one of the better examples. This is what it feels like. Knowing that you are about to step out into the world with children who one on the outside would think should know better, but don't. Knowing that, unless they are familiar with autism, if we have an "A-moment" people will probably be whispering behind my back once they assume I can no longer hear them (if I'm lucky -- there are some who don't care if I hear or not). Knowing that others consider me a sub-standard parent because of the behavior of my children, even though in many cases, it is beyond my kids' control or understanding.

It really shouldn't bother me. Not after all this time.

But it does. And it probably always will.

Thinking Back

2011-07-14T20:46:00.004-04:00

I recently received a comment on a post from nearly 2 years ago (CSAAC and Making It Work), asking about what I thought of working with CSAAC (Community Services for Autistic Adults and Children) as they are preparing to look into their services for their son. So, I decided to write a "Way back when...." post looking back to where Rachel (and I) was then and where we are now...

I was living in a different world. Yes, I was still living in the Autism World, but it really does seem like it was different then. We had virtually no verbal language to speak of. We were getting so little sleep. All I could do was worry. I was struggling to deal with my children's diagnosis. We were still in the process of GETTING that official diagnosis. I was barely keeping my head above water at that point. And it felt like we weren't getting anywhere.

Then, we started working with CSAAC. It was about that time that things started to change. It wasn't just working with them. It was everything. It was my own acceptance of what was going on. It was my realization that this was my life and my change in mindset. It was me learning how to incorporate the parenting techniques that I was learning through More Than Words. It was recognizing that, despite being twins, Rachel and Simon are VERY different children. And it was the introduction of the intense ABA that was provided to Rachel by CSAAC.

I remember several parts of the whole "CSAAC Process" very clearly. I remember having a phone conversation with our case worker with Early Intervention services where she pointed out to me that Rachel was failing to grow in the classroom and we needed to look into something more directed (one-on-one ABA). I remember listening to her convince me, and despite not buying what she was saying, turning around and attempting to convince Kevin that this was what we needed to do. I still questioned her about it from time to time, but I trusted MCITP (Montgomery County Infants and Toddlers Program [local Early Intervention provider]) and I knew that the classroom wasn't working. I just didn't think that you could take such a rigid child and put her in an even MORE rigid environment and see her thrive. But we had to try. I remember the nightmares this caused me. I remember thinking that this was our last chance -- if this didn't work, we really didn't have another back-up plan. I was fearful of losing all of that potential in this 30 month old little girl. It literally would wake me in the middle of the night in a cold sweat. What would we do when this didn't work (I truly didn't believe it would)? But I knew we had to try....

I remember meeting with the psychologist at CSAAC and watching her evaluate Rachel (and Simon who, of course, came with us). I remember her telling me that it would take a while before Rachel would be a willing participant with the program (expected up to 2 weeks). Until then, she warned me that she would SCREAM and fight the process with everything she had. I remember struggling with our schedules, trying to find 10-12 hours weekly, in 2 hour blocks, working around naptimes, where I could be home so the sessions could take place. Daniel was in nursery school 5 mornings/week, Simon still had school, we were just joining the Parent Group, and anything else that came along.

And I remember the first clinic session after we began. We had a clinic session just before starting so the techs could meet Rachel and they were able to tailor the starting points of her programs to her current levels. I watched her growth in just 2 weeks. I saw her happily go to her teachers knowing she was going to play games and see her favorite motivators. I watched her look into their faces with minimal prompting (except the psychologist). And those huge strides continued, session after session. It didn't take her 2 weeks to adjust to these in-home sessions. It took her 2 MINUTES. The only consistent problem she had was transitioning from break with me and Simon (and sometimes Daniel) to going back to her room for more work. I watched her learn to play with toys (correctly). I watched her understand how to communicate. I watched her learning to behave and understand some basic life skills. We even worked on drinking from a cup, brushing teeth, and wearing a blanket at night. CSAAC and in-home ABA was such a HUGE success!!!!!

That was Rachel's turning point. And in many ways, that was mine. It made me realize that when we provided her with the right stimulation and would work with her in the ways that she needed us to, we would see progress. Since then, she's been in an ABA-based program and we are starting to consider ways to transition her away from it all so that she can attend a typical school for kindergarten, even if she needs to remain in a special needs classroom. Through ABA, we have seen her grow in every possible way, and for that, I am extremely grateful to CSAAC, MCITP, her teachers, and everyone. And now that we are about to enter a new phase in her treatment (beginning to address her ADHD issues), I only hope that we can continue her success!

Who reads my blog?

2011-07-13T17:09:00.001-04:00

Like many people, I feel I have a story to tell. That's one of the reasons I "blog".

Babble.com is looking for the Top 25 Autism Blogs. My blog was nominated and is (thus far) placing quite well, but dropping. Actually, it's been nominated twice. If you read this blog and enjoy what you see, please click the link and vote for "My Family's Experience With Autism" as well as your other favorite blogs listed. Also, feel free to nominate others. New ones are being started all the time, and all the stories deserve to be recognized.

But my story here is constantly changing. First I wanted to educate. Then I needed a place to cry and get all of my frustrations out. Then I went back to trying to educate, but in a different way. I explain what we see. I still tell specific stories of our lives. But I also try to get others to see what living with a child learning through autism is like. The phrase I use is that I try to press others to "get it". How we have to plan out every detail. How we can't take anything for granted. And how every day is another story. And the direction of this blog will probably change again. And again. And again. In other words, this blog is whatever I need it to be at the time I sit down to write.

So, I hope you enjoy reading it. I hope you have been inspired to vote (and vote often) for this blog at the link above (you can vote daily). And I hope you will vote for other blogs that have inspired you or that you are writing yourself. Because we ALL have a story to tell!!!!!

Some Cross-Promotion

2011-07-08T16:06:00.003-04:00

Hi again....

A post I had written here has been re-posted on another's website.....Autism and Empathy.

This is an interesting website to check out. I recommend it if you are looking to see others views on this subject.

3 Amazing Words

2011-07-07T20:30:00.002-04:00

"I Love You". 8 letters with 2 spaces. It really sounds simple. But to a parent of a child with autism, it's elusive. So many of us never hear these words, even if our children are verbal. At least not with feeling and a true comprehension of the meaning behind them. We know our children love us. We see it in their eyes. We see it in their behavior. But knowing it is not the same as hearing it.

I heard these words from Simon for the first time almost 2 years ago, after a VERY bad morning. He snuggled up to me before falling asleep for his nap and said that to me. I remember coming downstairs and crying from both joy and the incredible stress of that morning. As amazing as I felt when Daniel said those words to me for the first time when he was about 18 months old, when Simon had said those words, it felt like such a HUGE victory. He doesn't say it often, but it does come out occasionally.

But Rachel, we were still waiting. She is extremely verbal. Perhaps it just isn't going to happen. I love her, and I know she loves me, and that's enough. Of my 3 children, she is probably the most effective at non-verbally expressing that connection that we share. She clearly loves her Mom (and Dad too).

Yesterday afternoon, Simon is playing on the computer. Daniel is playing Lego Star Wars on the Wii. Rachel comes walking over to me. She climbs on my lap and gives me a hug. This is quite typical for her. She had a long day -- school in the morning, camp in the afternoon and then the stress that always happens coming home with 3 young children. She nuzzled in and said it. "I Love You."

Wait a minute. Did I hear that correctly? No. Her mouth was nuzzled into my neck so hard I had misunderstood. Then she stopped hugging me and looked me right in the eye. "I love you." Hug again. Then she climbed down and went to watch the game Simon was playing on the computer.

That was an amazing moment. I had said several times before that I just wanted to hear her say those words to me, with feeling. And on July 6, 2011, that wish was realized. August 14, 2009 and July 6, 2011 are two ABSOLUTELY amazing days for me and my twins.

It's Time.

2011-07-06T21:07:00.001-04:00

Time passes. You don't see it most of the time. More often than not, when we are feeling the stress, it feels like time actually stops. But it doesn't. It keeps going. And if we don't get on top of issues, they tend to grow. Or they will prevent growth.

We have been sitting on questions about Rachel for a very long time. What is going on with her? We know she has autism. It may have taken us a long time to come to terms with it, but we know it to be true. But is that all? We had been wondering if she also has OCD (Obsessive Compulsive Disorder) or ADHD (Attention Deficit and Hyperactivity Disorder).

Our concerns about OCD started probably before we knew about the autism. We know how ordered she can be. She can't stand it when things spill or when even a drop of juice from her cup spills on her. We used this to our advantage when potty-training her -- she couldn't stand being wet so she needed to go to the toilet. It worked. Everything can have a positive spin to it, right?

ADHD on the other hand, we had been pushing off feeling that it wasn't very important. When she was in the classroom, working with her teacher one-on-one, she was learning so well. They are constantly looking for new programs to teach her. They are now working on teaching her to write letters and numbers. We know she can read. She loves to play on the computer, and she can play the games and navigate through them (and the permitted websites she visits) appropriately.

We can wait on the ADHD.

Or can we?

When is it the right TIME?

Earlier this spring, I wrote a post about how she was having difficulty in school attending to the teacher in the typical pre-K classroom. Her inability to focus in that classroom was preventing her from learning in this setting and preventing her from interacting with her NT peers, the reason why she was in there. She spent 6 months attending this class and was unable to expand the time in the classroom from 15 minutes. The hope was that she would spend the morning in her special needs classroom and the afternoon in the NT setting. 6 months later, we're still not even taking steps to get there. And all because she can't attend. We need help. And a different kind of help than the local system can provide. We need a physician to determine if there is more going on than just autism. We need to seriously consider ADHD. And we need to do it NOW!!!!

After I went to visit her at school this spring, I called the doctor who originally informed us that the twins were on the spectrum and made an appointment to ask about these 2 co-morbid diagnoses. We had to wait until late June, but I got the appointment and we went.

The visit was, well, I'll call it interesting. We were called back and they measured Rachel's vitals. She was a bit rambunctious. She allowed them to weigh and measure her. She allowed the nurse to listen to her heart, take her blood pressure, everything that was expected of her. But she was playing with her. She kept trying to grab the stethoscope. She wanted it all for herself. But she did cooperate. Then we sat there for a little while and I think the doctor was watching her. She was trying to run in and out of the room. To me, this is normal and almost good. But it's another little tick on the doctor's clipboard. Then we head down the hall to begin the interview. The doctor asks Rachel to follow some simple instructions (come with me and sit down on the couch [2-step instruction]). Rachel is curious and looks everywhere else. But she does follow the doctor. But there were letters (stickers) all over the wall in this room. I had to take her by the hand and lead her to the couch. And she kept shrieking out the letter names she was seeing. The doctor wasn't sure if she was reading them or just reciting letters (I knew she was reading them).

Once we got Rachel to sit down, the doctor started asking her some basic questions (such as "How old are you?"). Rachel refused to look at her. Rachel continued to read the letters off the wall. So we changed tactics. "Rachel, can you find a letter 'D'?". She did that one without any problem. "What letter is that?" (pointing to a "Q" behind her) -- no reaction. After trying for a while, the doctor asked if I had something to distract her and we could have a conversation. So, I gave her my iPhone and allowed her to play.

After a while, the doctor started asking Rachel questions again. This time, she still had the phone. And this time, she had no problems answering ANYTHING the doctor presented to her. She needed that external object to focus on. And she wasn't just randomly playing a game. She went to my photo album and was looking at the pictures of her brother (Daniel at this moment). She was watching the video of Daniel at his swim meet that I had recorded while shouting my cheers. She was interested in looking at their FACES. It was strange to see the doctor's face.

Overall, by the end of the visit, the doctor told me that her impression is that we are looking at ADHD (but not OCD). And she does believe that we need to take action because it is preventing her from progressing. It is actually creating a stumbling block for her. It's possible that she will be able to be successful in a fully mainstreamed setting within a few years with little to no assistance, IF we can get the ADHD under control. So, now I'm starting to do my research. What IS ADHD and what can we do about it? What are the best medical treatments for a 4 year old girl with a co-diagnosis (and primary diagnosis) of autism? And how should this be managed?

That last one is very important. You see, this doctor is in the process of retiring. She will be leaving this practice at the end of the summer. She has given us some recommendations and will work with us to find someone to continue managing Rachel's treatment, and we are going to discuss this further when we go back in a couple of weeks. But we need to find a different doctor to manage her care.

This is my own fault. I knew we needed to look into this. I had suspected it for quite a while. And because I had put it off for so much TIME, I now have to deal with the added complication of needing to find a new doctor whom I can trust to help manage this long-term.

We have seen so much progress in both of them without medical intervention, I keep forgetting that body and brain chemistry is why we're here in the first place. We also have remember that there is a medical component to all of this and we need to look at all things if we are going to find an answer to make sure they can both succeed. And that's what I need to do.

Proud Moments

2011-07-03T13:11:00.006-04:00

Like I said before, there have been many things that have been happening over the last couple of weeks. My last post described a rough morning. Today, I want to share with you an example of a GREAT day.

First, let's talk about Rachel. She has been attending The Little Gym of Germantown for about 3 years and has been watching her older brother for an additional 9 months before she began classes herself. This is one of her favorite places on the planet. And they have a dance/party room in the back with a mirror that takes the entire back wall. She LOVES to go back there and pose for herself in that mirror. But she has always had some behavior issues there. She spent far longer in the parent assisted classes than one would expect because of the honest expectation that she wasn't ready to progress to the next level yet. Then, this last school year, we put her in the "Funny Bugs" class (for 3 and 4 year olds). This is the youngest gymnastics class they offer that the children go in on their own. Throughout the school year, she has grown into this class. She has difficulty following along, but is not too much of a disruption to anyone that they continue to allow her to stay where she is.

The Little Gym runs a summer camp. You pay for each day and the sessions are 3 hours long. You have to be potty trained in order to attend. We decided to see what would happen if she went. We purchased 10 days in total, hoping that she would go for 5 and Daniel would go for 5 (but willing to give 9 of them to Daniel if Rachel didn't like it). Rachel's teacher for this school year runs the camp on Wednesdays, so on June 22, we dropped off Daniel at this camp, went to the "cookie store" (translation, grocery store in the same shopping center) to get cookies for the 3 kids, and then dropped her off to spend these 3 hours there with her big brother. We dropped her off later because until about 15 minutes into the camp, there is another class ongoing in the gym itself and her teacher and I both felt that it would be better if she went directly into the gym rather than into the back room to color (an activity that Daniel enjoys, so he went right in). She arrived right around 10:45, and her teacher was ready for her. I made sure she was settled, handed over her lunch, gave some little instructions to make things easier for everyone (like how she prefers to eat her lunch and how someone will need to go with her to the bathroom so that she doesn't clog their toilets using an entire roll of toilet paper), made sure they had my cell phone number and left with Simon.

Simon and I spent the next few hours running some errands and spending some quality time together. It was nice to give him that Mommy time while still getting some chores accomplished. And the phone was SILENT. But 1:30 came soon enough and it was time to pick up the 2 campers. I drove over and got Simon out of the car, just as they were dismissing the group. Daniel came running over to me wearing a newspaper pirate hat and doing his best pirate impersonation. I knew he was going to have a good time. He's done this camp the last 2 summers and Pirate Week is one of his favorites. But how did Rachel do? I found Ms. Katie (the teacher) and she told me that it went better than ANY of us had expected. She knows Rachel's issues as she has dealt with them for over a year. She knows how to pull her in and when to back off. Rachel came over and gave me a HUGE hug. She told me that she had FUN. She told me she wanted to go AGAIN. Her teacher told me that she participated in most of the activities and listened reasonably well. She also told me that Rachel behaved during lunchtime and really ate up the entire experience. We signed her (and Daniel) up for another session on August 3.

Now, I know we stacked everything in our favor for the experience to go well. We sent her VERY soon after the end of school to minimize any chance of regressions. We sent her when we knew she would be there with her favorite teacher. We selected a day where the enrollment was relatively low so there wouldn't be too many other distractions. We sent her with her brother so there would be another kid present who was an ally and would help look out for her (and was he EVER a GREAT big brother that day). And we also made sure to send her on a Wednesday so she would be working with Ms. Katie. All but the first of these will also be true on August 3rd. And it will be shortly after the end of ESY (Extended School Year [summer school]), so again, we have that reasonably covered. But I was smiling about our success here for 2 days!!!!!

Now Simon has also done something of note that I haven't had the chance to talk about. He started taking music lessons at The Academy of Fine Arts back in November. That, despite a difficult first session, has been a huge success for him, as we had anticipated. He's extremely musical and he really can grow into this allowing music to be a powerful voice for him when all else fails. He had his last class for the spring on June 22 (coincidentally the same day as Rachel's camp experience) and at the end of the class, he was asked to come up and play for the entire class. He had been invited to this once or twice before, but they were always disasters. He had trouble with all the steps -- walking up to the piano, sitting on the bench, playing the requested music (in all cases, a C-Major scale), standing up and bowing as the audience applauded and then coming back to sit down. I wasn't sure what to expect this time around. Then, this happened.

Oh, My GOODNESS!!!!!! That CONFIDENCE! That SMILE!!!!! That BOW!!!!!!! That AMAZING little boy!!!!!!

And, to top off the day, Daniel had his 2nd EVER swim meet after Simon's last class was over, so after heading home, Daniel and I got into the car and drove to the away meet. He's a kickboarder on the Stratford Knolls Sharks. When he started on this team on June 1, he couldn't put his face in the water. But he's been working at it and he came in 2nd in his heat!!!! He had a coach beside him, but she didn't lay a finger on him the whole race. This is the last time he had a coach beside him while swimming kickboarding.

So, June 22 was a WONDERFUL day!!!!! All 3 of my kids made me one of the PROUDEST MOMMAs you could find anywhere.

A Day

2011-06-30T20:31:00.005-04:00

Today has been "A Day". A VERY long day. Actually, it's been a long 2 weeks. School ended on the 16th and we have been managing to pass the time. But some days have been easier than others. I have so much to say, but I thought I would just describe this morning. There are several more posts coming soon (probably starting next week), but I miss doing this and I need to just get back into writing.

It started like any Thursday in our house.....Kevin gets up and gets ready for work around 5:30. I hear him get up and make my attempts to fall back to sleep. Unsuccessful, but I make the effort. Then, as he's coming downstairs, I hear the gate carefully being taken down and moved to the side and four little feet come running into my bedroom. Yup, it's just before 6 and Rachel and Simon are up and ready to run, jump and play. But we snuggle in bed. It's nice for about 10 minutes before we need to get moving.

ADHD.....

I turn on the television for our early morning television programs so that I can go to the bathroom and brush my teeth in peace. Only interrupted twice this morning.....slightly better than average. Take Rachel to the bathroom, get the kids dressed and we get ready to head downstairs. Rachel goes into her room to "get dressed". (yes, she's already dressed) Simon wants to go downstairs for "Trashy Town". Domino (the dog) is blocking the stairs. I convince Rachel she's already dressed and we all start heading downstairs. I grab their laundry, and lead the way so that Domino will follow me. Success!!!! They all come downstairs.

What exactly is ADHD?

I get them strapped into their booster seats and start working on getting their breakfast ready. I also need to prepare Rachel's lunch since her summer school has begun this week. I need to time television shows so that there is no risk of a program ending while I'm taking Rachel out to the bus. I plan to show them "Super Why", their current favorite program because all of the recordings are over 25 minutes long. They wanted Jack and the Beanstalk. But that's Rachel's absolute favorite episode, so I chose The Three Little Pigs. Apparently, that was the wrong choice. Simon starts to scream. Jack!!! Jack!!! Jack!!! "No, Simon," I explain. "We're doing Three Little Pigs". He screamed through more than half the episode. Rachel is getting upset because if Simon gets upset, so does she. Eventually, Simon settles down. Finally the bus comes and she leaves for school. Simon watches the rest of the program, Daniel wakes up and comes down to breakfast. Domino wants to go for a walk, but I can't go. I take the boys downstairs, Daniel goes to the Wii and Simon goes to the computer to play. I take advantage of the relative silence for 10 minutes.

And why would you want to give a hyperactive child a stimulant?

Morning progressed pretty smoothly at this point. We head out to run an errand and then go to Chick-Fil-A so the boys can play in the play area that they have at our local store. We arrive quite early (around 10:45) so they (and one other little girl) are the only children in the play area. They are having fun for about 20 minutes before Daniel decides he's hungry. So, we have an early lunch (and then we would play again). When we finish lunch, it's a lot more crowded in the play area. There are now probably about 12 kids in there (including my 2 boys). Simon is having fun climbing up and going down the slide. One of the times he climbed up there, a little girl (I would guess she was about 18 months old) was sitting at the top of the slide and not going down, but not moving out of the way either. Her father moved over to the foot of the slide and blocked my view, so I don't know what happened next. But 2 seconds later, this father was putting himself into the corkscrew slide to pull his daughter out and yelling at Simon who was (apparently) kicking her as they went down the slide. He wasn't trying to avoid hitting my son either. I immediately jumped up and was telling Simon to keep his feet quiet and told the father that he is autistic and he doesn't understand his emotion. He allowed me to squeeze in and help hold Simon back while he pulled his daughter out and then I held Simon and told him to say "I'm Sorry!" and put Simon in a Time Out (well, our version of a Time Out). After I let him go and he goes back to playing, I quietly (and calmly) explained to this father that (1) I'm sorry this happened and (2) I realize my 4 year old son looks like he's 6 (and is as strong as a 6 year old), but he has the maturity of a 2 year old. Yelling has no effect on him. I suspect he growled about me and my son after this incident to whoever would listen.

Is it appropriate to medicate a 4-year old?

So, we leave Chick-Fil-A on a less than lovely note. It's time to pick up Rachel and drop off Daniel at his camp for the afternoon. My head is spinning. I'm still recovering from the doctor's visit the previous day which confirmed our suspicion that there's more going on with Rachel than just autism. And it's only 12:00!!!!

My sanity left me a long time ago. I'm not really sure what I have left, but that's quickly disappearing. One more day and then I'll get a bit of a break -- holiday weekend followed by our full summer schedule. Hopefully, the time that I will have to myself will allow me to find some of that energy I so desperately need.

Summertime

2011-06-16T11:11:00.000-04:00

Today, summer truly begins in my house. School is ending and all 3 kids will be home by (probably) 1:15. To me, "summertime" means no strict school schedules. It means playing more. It means going to the pool. It means time for camp rather than school. It means time for fun.

Well, with 2 kids on the spectrum, that's not QUITE the way things are going to work around here. We have summer school to consider for Rachel and Simon. Rachel will start on the 27th, Simon will start the following week. Even their camp will be about learning rather than about fun (but they will have plenty of fun as well).

But at least through the weekend, I intend to make sure they have FUN. Assuming health and weather cooperates, we're going to make it to a playground tomorrow. Rachel will have her last gymnastics class on Saturday morning which the teachers have promised to make it a favorite session. If the weather cooperates, we'll be heading to the pool on Friday, Saturday AND Sunday. Next week, Rachel is going to try a new camp for a day with her big brother. One that is NOT geared towards kids on the spectrum where she is enrolled in gymnastics (with her favorite teacher). Simon and I will be staying nearby (if it doesn't work), probably at Simon's favorite playground. But it will be interesting to see what she thinks of that.

But we have to remember to be safe. Especially at the pool. This is a link I shared on Facebook, on every page that I typically go to. Now I want to share this on my blog. 18 seconds goes by so fast. But that's all it takes to change lives forever. My heart goes out to Joannie Logan's family. Hopefully others will learn from this tragedy.

Pools are a lot of fun, for everyone. And I know this story isn't something that happens to everyone. But we all have to be aware. We all have to be careful. We all have to take precautions. We all have to be safe.

I hope everyone has a wonderful start to Summertime!!!!!!

School is Ending

2011-06-15T13:40:00.002-04:00

Well, tomorrow will be the last day of school. My kindergartener will be entering first grade. Rachel and Simon will be ready to begin their last year of preschool before they begin kindergarten. And I am trying to make sure that everything can get done before they are home for 2 weeks before summer routines get going.

But things are never as simple as they appear. Things always seem to happen to complicate things. In this case, Rachel got sick. Not VERY sick. Just an upset stomach with rather severe diarrhea. Enough to have her sent home from school in a diaper. Enough for her to stay home for a day wearing a Pull-Up all day to make sure there were no disastrous messes. The amazing thing here was she didn't fight wearing it -- in fact, she asked for it. Once again, I see a glimpse of her self-awareness. She was perfectly happy except for the moments that she felt another wave coming.

Today was a run-around day. Because I lost yesterday with Rachel home, I have a lot to do before Simon gets dismissed at 11:30 tomorrow morning. I had some personal obligations to attend to. I also had to purchase gifts for the teachers and para-educators that work so closely with my children. And I was amazed at how quickly that bill added up -- 3 teachers (one per child) and 9 para-educators. I didn't get anything for the others working with them (speech, OT, PT, bus, etc) because there was just a limit -- at least I could cut it off there. I am grateful to all of them (well, not the bus -- can't wait for that to end in another school year), but I've got to cut it off somewhere. It all adds up.

But all the gifts have now been delivered. All meetings are over. Camps are arranged. Medications collected from the schools. All personal obligations met. Now I just need to go to the local Sam's Club to stock up. Hopefully, I can get there in the morning. Otherwise, I'll have to head over there on Saturday afternoon, a far less preferable option because it becomes a family outing. If I can't make it to Sam's one more grocery store trip without the kids in tow. Then starting around noon tomorrow, Simon will be home, 12:30 Daniel will be coming home and about 1:00, Rachel will arrive. Then all 3 will be home until June 29 when Rachel begins ESY (Extended School Year), and July 5 when Simon begins his ESY program, and all 3 kids begin their camps.

I'm ready for being frazzled. I'm ready for the insanity. I'm hoping to keep some level of routine. I'm hoping that it won't be too hot so that I can handle taking them to local playgrounds. I know we'll be heading to the pool nearly every afternoon (Daniel has swim team and Rachel & Simon both love to play in the water). One part of routine down. Just about 10 more to go.....

Autism and Empathy

2011-06-10T21:17:00.002-04:00

We've been noticing something recently. Rachel really loves her brothers, Simon in particular. She has always been sensitive to his feelings and they have always demonstrated what I call a "twin bond" -- they only have to glance at each other and they seem to have a full detailed conversation. We have never been able to scold Simon in front of her, not because of the noise, but because it meant her brother was in trouble. I had thought that part of that was the unexpected nature of this (Simon getting scolded is outside of her control), but for the last few weeks, we're starting to see that may not be the case, at least not in full.

A new favorite television show is "Super Why". We watch it on PBS Kids' Sprout as well as on our local public television station. She seems to be obsessed with the episode focusing on "Jack and the Beanstalk" because the "problem" they are trying to solve is resolving the main character's little sister's temper tantrum. "Joy" is crying. Screaming. She's having a "HUMONGOUS tantrum". Rachel has been walking around asking, "What's the matter, Joy?" or suggesting offering a bottle to Joy to make her feel better. I've also been receiving notes from her teacher explaining that she has been more emotional in school lately when another student is upset. She also gets upset. She tries to cry, and is often successful.

I know this may seem strange to say, but I don't think of this as a negative development. I think this is evidence that she is trying to determine how to express "Empathy". Dictionary.com defines empathy as "the intellectual identification with or vicarious experiencing of the feelings, thoughts, or attitudes of another." I was always concerned that because of her autism diagnosis whether she would ever fully be able to express or experience empathy. But she is proving me wrong lately.

I created and administer a Facebook page (We Care About Someone With Autism). Yesterday, I chose to have a day long topic discussion about autism and empathy. The theory that an individual with autism cannot experience empathy was one of the first myths that I was exposed to when we first began our journey into the autism world. We are obviously seeing that is not the case, at least in Rachel. I was wondering what others had to say on the subject. I was pleasantly surprised to see and learn that others often see the same behaviors. The biggest difference is that these children often need to learn how to express it effectively, as this skill is one that is often lacking. I have been addressing this issue by telling Rachel to ask the "sad" person, "Why are you so sad?" I've only been doing this for a few days so it's too soon to see if this will help to resolve the problem that we are currently experiencing. But I wouldn't really call it a problem -- I'd just call it a development.

But Rachel will always feel something special for her twin brother!

Blogiversary #2

2011-06-07T13:55:00.001-04:00

Yesterday marked the 2 year anniversary of when I started this blog. I started it because I was having difficulty coping, in every possible way. I asked for advice but it wasn't enough. I read some books, but it wasn't enough. I looked online. And I became afraid. So, I decided to add my voice to the fray. I didn't know who, if anyone, was ever going to see it. But I would tell my story. I would relate my experiences. I would try to educate others.

It didn't take long for life to interfere with these lofty goals. I felt overwhelmed. Too much was happening too fast. And I was in denial making it very difficult to make decisions. What we were doing wasn't helping Rachel. And we still needed answers. And I couldn't do anything. So, one day, I sat down at the computer and let it all go. I just typed. I vented about my worries. I basically cried into my keyboard. And after I pushed the "Publish Post" button, something happened. The weight of the world was lifted.

It didn't last. I suspect by the next day it was back. But what I was doing in cyberspace changed. I needed to learn to cope. And this blog was going to teach me how. I used it, not to inform or educate like I had planned, but to let it all go. I started writing "pity posts". I still documented what we were doing. I still told our story. But blogging really became a cathartic experience. It really was a place to put all the negativity and frustrations.

This was true for a long time. It's still that, but it's made a change over the last few months. A friend of mine nominated this blog for recognition in one of the contests (specifically on babble.com). And I started looking for opportunities to write guest posts on other blogs. And I couldn't have a pity party on someone else's blog. It was a chance to educate others. It was a chance to explain what my life is like as an Autism Mom. It was a chance to talk about raising twins on the spectrum. It was a chance to reach out to others so they could really start to "Get it" -- something that many Autism Moms feel is lacking in the general population.

That desire is now what's driving this blog. I want people to "Get It"! I want others to understand what Autism families live with every day. I want other Autism families to realize they are not alone. I want to make it clear that every case of autism is unique, even when it affects twins.

So, now I'm back to educating. I'm also venting. This blog continues to grow as I do. I'm still interested in becoming a parent advocate, but I still haven't figured out what that really means. So, for now, this is my version of advocacy. I AM a parent advocate. Just not in the way that I envisioned.

Who knows where I'll be and where this blog will be on June 6, 2012? Keep reading and we'll find out together!!!!!

Let's Go Swimming

2011-05-31T20:30:00.003-04:00

I have gills. At least that's what my husband tells me. As long as I can remember, I've LOVED going to the pool. I started taking swimming lessons when I was probably about 5 years old and continued for several years. I may not be the best SWIMMER, but I do love the water.

For the last few years, we have been living in a development without a pool. But our neighboring development has a pool, and they open their doors for others to pay for a membership. This past holiday weekend, I decided that we were GOING to join this pool. So, we did. And on Monday, we went there for the first time.

We really weren't sure what to expect. Well, that's not really true. We expected bedlam. Mayhem. We didn't think Rachel or Simon would like the idea of getting into their swimsuits. We didn't think they would like to get into the pool. But we have also learned never to attach ourselves to our expectations. Things often surprise us.

We were wrong. Oh, were we ever wrong. They showed us that they are definitely MY children. They went running into the water. Rachel loved to splash. Simon jumped right in, sat down and got as wet as possible and quickly as possible. All 3 kids spent time in the big pool (separately, with my help) as well as in the kiddie pool. All 3 of them LOVED it. Rachel discovered that getting wet in a pool is lots of fun. Simon seemed to already know this. And Daniel is now motivated to learn to swim as he has discovered several of his friends already know this skill.

We did run into a slight problem. While all 3 were in the kiddie pool (after they had all experienced the big pool), I took advantage of the containment and went to speak with one of the swimming coaches about swimming lessons. While talking to her, Simon discovered an open gate and ran out of the kiddie pool area and jumped right into the big pool to swim out to where I was. Now, he doesn't swim. Fortunately, where he jumped was only 3 feet deep and he's a very tall boy, so he didn't go under. And he's still excited about swimming and not afraid of the water. But we are now working to make sure that this never happens again.

It's going to be an interesting summer. Trips to the pool will be part of our days. Perhaps we will try to get them involved in swim team or, at least swimming lessons (Simon DEFINITELY needs the lessons). And I will get to enjoy spending my summer at the pool!

(most, if not all, pictures of Daniel, Rachel and Simon taken by Kevin)

Making it work....

2011-05-24T14:03:00.003-04:00

...a couple of weeks ago, I went to visit Rachel at school. The intent was to observe her in the pre-K class. She's been attending this class since late-October and has been unable to visit for longer than 15 minutes because of her behavior issues. At this point, she should be attending this class for 2.5 hours, basically spending her whole afternoon there. But, obviously, 15 minutes is a long way from 2.5 hours. They wanted me to observe her and participate in a discussion about where we should be going from here.

As we already knew, Rachel is very routine-driven. She is always looking for the next step. The schedule dominates her attention. This is especially true when she enters the pre-K classroom, probably due to the increase in class size from 6-7 kids to about 18-20 in the amount of time it takes for her to walk down the hall. She seems to become overwhelmed.

Her inability to focus on the task at hand is preventing her from making this process a success. She is unable to interact with the other children (which is one of the reasons she's there) because she keeps focusing on the next step. I observed her in "Writing Workshop Station", where the kids are encouraged to draw a picture for 10 minutes. She was given a piece of paper by another student and her teachers encouraged her to have markers, crayons, etc. The little girl next to her was trying to engage her, but Rachel kept saying "Clean Up song!". This is her least favorite station (put there intentionally so I could observe her there). Despite being ready for "Clean Up Time", she couldn't wait to run back to the carpet. She didn't help with the clean up at all. When she sat down on her letter on the carpet (each child is assigned a letter as a place to sit), she kept announcing that it was time to go back with her teacher.

Her inability to focus is holding her back. After observing this, I called the developmental pediatrician who first informed us that we were dealing with autism to schedule and appointment for her to look at Rachel to determine if our presumed ADHD and OCD is finally taking hold and starting to stand in her way. After all, Kevin and I were saying probably from before the time we learned that we were dealing with autism, she suffered from both of these conditions. They are often co-diagnoses, so perhaps we were right. We'll know if that's what a professional feels in about 6 weeks.

We did briefly talk about her current placement. We talked about whether we need to consider moving her from the CAPP program (where she currently is) to one of the less intensive PEP programs. The impression I received from her teacher and the representative from the Autism Office was they feel her current placement is correct and that we should continue to work with her and the pre-K. But she needs to be able to spend more time in the pre-K classroom. She probably doesn't need 4 hours of intensive ABA. But she does respond to ABA and should continue to receive it. Half-day with CAPP and half-day with pre-K is ideal. And they do feel that, assuming we CAN make that work for the next school year, she very well may be ready for a mainstream kindergarten classroom setting, with some added support including speech therapy and possible OT scheduled periodically throughout the week.

Now we just have to figure out a way to make that work.

It's About Time.....

2011-05-18T13:59:00.000-04:00

...I know....people have been yelling at me to get Rachel and Simon into beds. Well, they've been telling me to put them in separate rooms. I'm not ready to do THAT just yet. But they have definitely gotten too big for their toddler beds. When I assembled them, I took note that each of them had a 50lb weight limit. Well, Simon is now approximately 55lbs. Rachel is probably about 45lbs. And they like to climb into bed together. In case you don't like to do basic math, we're looking at a combined weight of approximately 100lbs, twice as high as the safety limit.

So, this past weekend, we finally did something about it. We went to Mattress Discounters and purchased 2 mattress/box spring/frame combinations. Shopping for these was, well, we'll call it "an experience". The 3 kids (yes, Daniel too) saw beds and more beds and even more beds. And they were all calling the exact same thing....."JUMP ON ME!!!!!" And, being the "obedient" children that they are, they were all too happy to oblige. They would run (or jump) from one bed to another. Once we made the decision of which pairings to purchase, I took Rachel out of the store and brought her back to the car. Simon joined us soon afterwards. Kevin took care of making the purchase and we expected the delivery on Tuesday. Not a very easy errand, but a successful one.

On Monday, there was no school for Rachel and Simon (teacher training). So, we took advantage and ran some necessary chores. Haircuts and some more bed purchases. Specifically, we needed to be able to dress those new beds. So, off to Walmart we went. We went to the bedding section. And I allowed Rachel and Simon to pick out their own bedding (with limited choices). Rachel chose "Fairies". Simon chose "Toy Story".

So, on Tuesday, they arrived. 2 frames/box springs/mattresses. They were assembled and I dressed the beds. I also disassembled the toddler beds. When the delivery truck left, it took the crib/toddler bed mattresses with it. The room suddenly became much fuller.

When Rachel and Simon went upstairs for the evening, they entered their room and found a surprise. Brand new beds. Brand new themes. Much bigger than before. The books were gone. The small beds were gone. These big beds were now in their room.

It took them a bit longer to fall asleep last night -- probably just over an hour by the time they were both asleep. And, as expected, they were playing with their new beds and the new layout of the room. But, as expected, they fell asleep together. Rachel fell asleep in Simon's bed. But not before they made a huge mess of the place.

But I stepped in, picked up the room, and brought Rachel back to her own bed and tucked them both in nice and sound. They slept through the night.

When we woke up, Simon was in Rachel's bed and Rachel was in Simon's bed. We're not sure when they made the switch. But we do know that they were both asleep at this point. I hope they like these beds as much as it appeared last night. I'm not ready to move them into separate rooms. I think they still need each other. And I really don't think they interfere with each other's sleep. So, for now, this chapter is behind us.

The time has PAST to let sleeping dogs lie...

2011-05-11T11:32:00.000-04:00

Yesterday, I got ANGRY. Not about what I blogged about -- in fact much of that post was written several days ago and I just finished it off yesterday -- but about the latest story in the whole "Vaccine Conspiracy" fiasco with the settlement offered to families from the vaccine injury court. I'm already seeing fallout from this announcement from people who I know. They're claiming that they always KNEW that there was a link and here's the proof. And, of course, who's behind this latest insanity? Safeminds.org -- Andrew Wakefield's worshipers who are trying to deplete the world's autism financial resources to support liars and those who commit fraud. A group who really doesn't understand medical research, or research of any kind. A group who believes in the sensationalism of the media and seems to like to see their cause in print, and doesn't care who gets hurt along the way.

Well, I have news for them and for all of you. NOTHING has changed. This is NOT proof.

Don't get me wrong. I too was concerned that vaccines and autism were linked. When we first learned that Rachel and Simon were on the spectrum, after taking a little while to pretend that it never happened (while on a previously planned family vacation), I jumped in with both feet. I started doing my research. I tried to figure out what happened and what I did wrong. Just like almost every family I know who learns that their kids have autism. Vaccine theories were everywhere. So I read about them. And they made sense. The most visible signs of autism become apparent between the ages of 15 and 18 months, just in time to coincide with the administration of the MMR vaccine. In some cases there are sudden changes and regressions. In other cases, just a failure to develop. In almost all cases, there's a failure to reach certain milestones, in my family's case language based milestones. Since the MMR vaccine in particular tends to have worse side effects than many of the other childhood vaccines, there's a reasonable chance to believe that the vaccine is to blame. Good and well-thought-out theory.

I talked to our family pediatrician about this time. What did SHE think? Did she think there was a link between vaccines and autism? She didn't believe so, but still had the conversation with me. Afterwards, she gave me more literature to read (arguing both sides of the issue) and left me to draw my own conclusions.

If there was a link, answers would be easy. But, unfortunately, facts say otherwise. When the vaccine itself didn't show the link, they looked at the preservative thimerosal which is mercury based (thinking perhaps it was heavy metal poisoning which can in cases have similar attributes). Again, no link was found.

Finally, earlier this year, the fraud committed by Andrew Wakefield became public knowledge. His article in The Lancet was retracted and this nightmare appeared to be over. We would finally start to see resources poured into other areas to see if a real cause and link could be found. Since then I've been reading or hearing stories about links between ultrasounds during pregnancy potentially causing autism (study that I found is currently ongoing) and last week an article came out about the month of conception seeming to have a predictive effect (perhaps due to viral agents in the air during pregnancy). But, long story short, we still have NO CLUE what causes autism. We need to look at more causes.

Now THIS happens. I read the press release put out Safeminds.org (note was dated May 10, 2011 12PM EST) saying that the findings from the report printed in the Pace Environmental Law Review showed that there were 83 cases of autism in the 1300 families awarded compensation by the Vaccine Injury Compensation Program. The letter claims that this is considerably higher than what would be seen if the 1:110 published autism rate were accurate, especially those who are considered "Vaccine Injured".

I also love how a report in a LAW journal is igniting this thing all over again. The LAW isn't concerned with scientific fact. The LAW isn't concerned with research and supporting conclusions. The LAW is about turning any and all situations to suit one's own personal agenda. But even Ms. Holland states, "This assessment of compensated cases showing an association between vaccines and autism is not, and does not purport to be, science. In no way does it explain scientific causation or even necessarily undermine the reasoning of the decisions in the Omnibus Autism Proceeding based on the scientific theories and medical evidence before the VICP. Nor does this article have anything to say about state childhood immunization mandates in general." (page 482 of the article)

A couple of real life, grown up things that I'd like to point out. Life is unpredictable. Life isn't always fair. We all do thing to make things work and make sense. We (typically) don't take unnecessary risks. But there is still "life". If you are allergic to peanuts, a peanut butter sandwich can KILL you! And how did you learn you were allergic to peanuts? Chances are you ate some or had physical contact with a peanut product and had a (hopefully) mild reaction. You investigated and now know to avoid all peanut products. I'm sorry that there are so many that can't experience peanut butter (which is a favorite food of mine, especially when combined with chocolate ice cream), but it's just LIFE.

There is also such a thing as chance. That's why all scientific studies depend on statistics to provide the answers. Statistics allow you to look past chance and see if causality really does exist. If you have a balanced coin, you can flip it 100 times. A good estimate as to how many times the coin would land on "Heads" is 50 because there is a 50/50 chance each time you toss the coin for it to land on "Heads". However, it can land on "Tails" 3 times in a row. That doesn't make it an unbalanced coin. As you continue to toss it over and over and over again, these anomalies balance out. Having the coin land on "Tails" those three consecutive tosses is "chance". This is why we need to look at the larger studies. There are approximately 5 large scale studies looking at vaccines and 3 looking at thimerosal that all show there is no link between these exposures and autism.

These 83 children, if vaccines really did cause their autism, fall under the "chance" category. But I don't believe that to be the case. I think that something else CAUSED the autism. Vaccines may have caused other things to happen to them and over time, autism has been found. There may have been a mitochondrial disorder (as was the case in the parent interviewed on FoxNews on May 9) and vaccines may have triggered something.

But we can't afford to back away from vaccinating our children because of a fear of them developing autism. If as a parent, you have concerns, I URGE you to talk with your doctor about ways to minimize the risk, including potentially changing the vaccination schedules. Speaking as a parent, I can live with a child having autism. I can live with children having autism. What I CAN'T live with is the guilt of having to bury a child because I refused to vaccinate them out of fear. I CAN'T live with the guilt of having to watch a friend of my child be buried because they were exposed to something via my own child, because of a fear of vaccinations. Our decisions have consequences. We always need to remember that.

Citations:
1. Press Release from Safeminds.or; for release May 10, 2011 12PM EST
2. Mary Holland, Louis Conte, Robert Krakow, and Lisa Colin, Unanswered Questions from the Vaccine Injury Compensation Program: A Review of Compensated Cases of Vaccine-Induced Brain Injury, 28 Pace Envtl. L. Rev. 480 (2011)
Available at: http://digitalcommons.pace.edu/pelr/vol28/iss2/6

Is There EVER a "Right" Answer?

2011-05-10T14:12:00.002-04:00

You see, we have a problem (what else is new?). Rachel's IEP Meeting was October 17. At that time, it was decided that she should be included in a typical pre-K class in her school to allow her to work on her social skills with her neurotypical peers. This would help her learn how to interact with others and would hopefully allow us to see her enter a typical kindergarten classroom setting at best, or at least allow her to be placed in "The Learning Center", one of the special education options for our public school system.

In our opinion, social skill development is the biggest shortcoming of the program she is currently enrolled; it is a program that is 1-to-1, highly-intensive ABA. It is a language and behavior based program. She rarely spends any time with other children with any realistic expectations of forming friendships. All of her "relationships" are with her teachers. So, by including her in the pre-K class, she would still get the 1-on-1 that the program is designed for part of the day and still be able to develop social skills. She was to start at 15 minutes/day and work her way up to the full afternoon.

It has been 6 months. She is still only attending this class for 15 minutes/day. It's not because of the school's refusal to incorporate the plan. It's because Rachel has been unwilling to cooperate. She cannot sit still and refuses to follow instructions. They have tried several different things, and they still have been unable to increase her time in this classroom. The question is "Why?"

I received an email from her teacher that we need to consider her placement. That can be read in a couple of different ways. Are they thinking that we need to change her overall placement for next year? Do they think we should modify her existing IEP? Or are they just looking for suggestions from me as to how to make this inclusion happen more successfully? This has led to me scheduling an observation visit on Wednesday afternoon, specifically to see her inclusion time with the pre-K class.

I was thinking that they may possibly be thinking putting her in a combination of programs. I mentioned in an earlier post that one of the family of preschool programs offered by our schools is called PEP. There are several different iterations of "PEP". The schools where these programs are located, often have more than one of these programs. There are children who cross between different PEP programs (I know of one who spends part of their day in PEP-INC and another part in PEP-Classic). However, neither the locations that I know of which has CAPP (where Rachel is currently) has any of the PEP programs. I was wondering if a good solution would be to combine the two programs (CAPP and PEP-INC) in the way they are currently trying to combine CAPP with the typical pre-K (perhaps she's not ready for that yet), but this is likely not a feasible option. I know that the schools are required to implement the IEP as it is written. I also know that they will not write an IEP in such a way that the resources don't exist to implement it correctly.

So, what's the right thing for us to do? When we were approaching her meeting in October, I was worried about the possibility of her being removed from the CAPP program. And I believe I was right at that time. And I'm still concerned about this. But today, May 10, is this actually the best thing for her right now? Would she be better off switching to PEP-INC? What (if anything) would we be sacrificing considering how well she learns via the ABA model?

Stay tuned.....right now, I'm not sure what that solution is going to be. Or, perhaps I'm reading too much into this meeting....

Happy Mother's Day!

2011-05-07T20:24:00.003-04:00

Happy Mother's Day to any mother who comes by this blog post. That is my wish to all tonight. Regardless of whether you are "Mom" to one or to many; Whether you are expecting your first child; Whether you have experienced Mother's Day many times before or this is your first; Whether you have a child of your own or you care for someone else's child; Whether you are close enough to someone you consider them "like" your child.

We all have something in common. Mother's Day (to me) is not about celebrating the birthing process. It's about celebrating those who care for another in that very special way. It's to celebrate those who nurture someone; those who help shape another human being and share their love in ways that only a parent can truly understand. We all may agree with our own mothers, or disagree. But we are the people who we are because of our mothers.

So, again, I say "Happy Mother's Day" to everyone who calls themselves a mother. May you enjoy the blessings of your family and, for some of you, the relief of the stressors that they may cause. May you all have exactly what you wish for on this special day where we honor our Mothers and recognize how special all Mothers really are.

(sending an extra special "Happy Mother's Day" to my own Mom who may or may not see this note as she is currently traveling)

Check this out...

2011-05-04T20:12:00.002-04:00

...if you are interested, I have something for you to check out. About.com is highlighting some stories of Autism Moms in celebration of Mother's Day on Sunday. I learned about this early in the week and submitted an entry.

"Just Mom" was published there earlier this evening. I invite you to come and see what I had to say on the subject.

I hope everyone has a good evening, and a Very Happy Mother's Day (if it applies).

Tantrums

2011-05-04T12:52:00.000-04:00

All parents know and dread this word. We've all been there. They happen all the time. They happen for reasons. They happen for no reasons at all. They just happen.

Tantruming is probably one of the most common complaints of parents to children on the spectrum. They happen ALL THE TIME. "Neurotypical" kids often grow out of the phase of experiencing them daily or weekly or at a frequency of any short measure of time. Not autistic children. They may learn to control their impulses that come out as a tantrum as they grow. But they usually continue to face those same stimuli that bring on the screams and the kicking and the rest of the behaviors that are seen in 2 and 3 year olds. And they may or may not be able to maintain control.

Has anyone here had a day where everything around them seemed to be defined by tantrums? Or a day where the entire 24 hour period appears to be a single tantrum broken up by brief periods for a child to muster up the energy to continue? Or children? I have, and if you parent a child on the spectrum, I suspect you can say the same. Those days are HORRIBLE! Those are the days you just don't want to get out of bed. Those are the days that you want to call in a "Do-Over". Those are the days that test us in every possible way. And often, those are the days where a co-caregiver has to work late or is out of town and you have 1,000 things to do.

There are some things that Autism Moms do to avoid those days. We have our routines and predictability which usually soothe our children. We know what our kids like and what is a near-guarantee to set them off. We know what rewards typically work best. We know how to read the signs that a tantrum is brewing, many times before they even start and can take some steps to minimize the fallout. And we have our defenses. But they still happen. And they happen often.

The world is a busy place. And life happens fast. We see it on television. We see it in the workplace. We see it on the playgrounds. We see it in the schools. And often we contribute to it. We have to get this done so we can run off and do something else. But my children don't always do things the way others do. One of them generally prefers to go slow. He embraces the moments. He takes it all in. He can't be rushed. But, at the same time, you have to get through activities. That's often where Simon's bad days begin. When I need him to go faster than he is willing to go. And once we start down that path, it becomes very difficult to turn back. But on the plus side, he has very definite tantrums. They are hard and intense. And they will last however long the cause exists. And we may or may not ever learn what that cause is. But once he's done, he usually returns to being happy. That is, until the next starts.

Rachel, on the other hand, wants to go fast. She wants me to speed up the bedtime songs and gets upset when I refuse. Her catch-phrase over the last couple of months is "Faster!". The faster the better. And because of it, she has a lot of fun playing with Daniel and rushing around throwing the ball and jumping on the trampoline. But her tantrums are different. They come out of nowhere. She can be perfectly happy and then all of a sudden, the world has crashed down upon her. I mentioned already that Autism Moms can often see a tantrum coming. Not in Rachel. There's a phrase that I learned on the Sci-Fi show, Babylon 5. "Do not try the patience of wizards for they are subtle and quick to anger." (quote found http://www.cs.tut.fi/~albert/Quotes/NoRobots/B5/025.html). That works for Rachel as well. And when she gets angry, LOOK OUT. The tantrum comes and it is here to stay. She can draw out a tantrum for hours with just short breaks to gather the energy for the next wave.

I hate tantrums. I won't sit here and throw a tantrum of my own to express that sentiment, but you can take me at my word. I look forward to the day that I won't have to cope with them. Unfortunately, that day is a VERY long way away......

Hope Never Fails (or listens)

2011-04-28T20:32:00.001-04:00

About a month ago, I attended a meeting between parents of children on the spectrum and our local school district. It was hosted by a parent-run independent organization whose mission is "To promote, support, and advocate for the education of diploma-bound students on the autism spectrum in grades K–12."(1). Having 2 very intelligent children on the spectrum, I thought it would be a good organization to look into. It would allow me to anticipate potential issues and start learning how to address potential pitfalls. Sounds good, right?

I served as "note-taker" for the preschool forum. It was an opportunity for me to listen in to learn how these children are transitioned from the various preschool programs into kindergarten. The representatives from the school system talked primarily about the preschool programs that have been designated as "PEP", which (from what I understand) is where the majority of students on the spectrum who would be considered "diploma bound" begin their school career. Neither Rachel nor Simon are in "PEP". So, after the session was over, I had a brief conversation to address the potential transition for my kids. This conversation did not happen between me and one of the representatives from the school system, but with the "moderator" of this breakout session, who happened to be an officer with this organization. In addition to being a part of this advocacy group, she is also a social worker for our school's Early Intervention Services group (but a different office than we had worked with) and has a daughter on the spectrum who is diploma bound.

Given this information, I was looking forward to the advice she would have for me. I told her that I have a daughter in the CAPP Program (Collaborative Autism Preschool Program) and, starting during her last IEP meeting in October, have had conversations with her teacher and the representative to the Autism Office about the possibility of her entering a mainstream kindergarten classroom when she is ready for kindergarten in the 2012-2013 school year. CAPP is the most intensive program offered by our local schools. It's a highly-intensive 1-on-1 ABA-based learning system. Many who enter the program are non-verbal. They all have significant issues regarding language, behavior, and impulse-control, as well as many other areas. Rachel has THRIVED in this environment. We had learned while we were still working with Early Intervention Services (Infants and Toddlers) that she responds to the learning system, ABA. I don't think this individual heard anything I said after mentioning Rachel was in CAPP. Or, if she did, she chose not to listen.

She basically told me that my daughter would not be able to function in a mainstream kindergarten classroom. She went as far as to say that she will likely NOT be diploma bound. A child requiring that level of intensity of services at the preschool level will not be able to function in a classroom setting.

HOW DARE SHE!!!!!!

This is someone who advises other families coping with autism and other developmental disabilities. Part of her job is to provide encouragement to the families she serves. NOT to shoot down their dreams for their children. She has never met Rachel. She doesn't know how far Rachel has come. She doesn't know how smart my daughter is. She doesn't have any means of knowing anything about her or her situation. She doesn't know that we actually had a discussion to determine if her placement should be changed to put her in a less intensive environment. She doesn't know that Rachel spends part of every day in a typical pre-K classroom to learn how to interact with her neurotypical peers. All she knows is that Rachel is in the CAPP program.

I don't know if Rachel will receive her high school diploma and go on to college. I don't know if Simon will do the same. But I do know that I will not limit her based on her diagnosis. Other children with autism function in classroom settings and continue on to receive higher education beyond high school. And as a social worker working with this population as well as a mother to a child on the spectrum, she of all people should know this. I will not allow this (in my not-so-objective opinion) unqualified and prejudiced uninformed individual to limit my children's potential.

Footnote:
(1) This mission statement is literally copied/pasted from the website of this organization. Because of nature of this post, I have chosen to not provide the specific website detailing the name of the organization. However, these words are not my work and should be credited to this parenting group.

When "Routine" Goes Away

2011-04-26T20:21:00.001-04:00

It's amazing how quickly even an "Autism Mom" gets sucked into routine. I've mentioned in other posts, both here and in my "guest blogger" spots how we "live by the routine". From April 18 until this morning, our routine has been "on hold" for Spring Break.

We are so used to waking up at the same time Monday-Friday. We are used to getting dressed, having breakfast and getting ready for the school bus. But, during spring break, things are different. We have still been waking up at the same time, but there are no buses. So there's no rush in dressing or getting out the door. After breakfast, we're going downstairs to play, or running an errand or two. We're fighting over the computer whenever we're home. We're watching movies. We're having "Pajama Days". Even our diet is different since Passover began on Monday night (well, it's different for ME -- the kids are such picky eaters that we didn't enforce the Passover rules for them).

We've seen in the past that routine defines us. And not just a little bit, but a LOT. When we do one thing, it's always predictably followed by something else. It's how we get through our days. But, during "spring break", our routines are ALSO on holiday. So, what happens next?

We passed the time. We made trips to the grocery store. We went to a playground. We had a couple of playdates. We actually scheduled a playdate (specifically) for Simon. That one was interesting. We went to a new playground (for us at least). We arrived a little early and the kids were having fun playing on the slides and in the mulch. Daniel found/made some friends to play with and he was set. Rachel and Simon just did their own thing.

When Simon's friend from school arrived, his friend tried to play with him. But Simon wasn't interested. He kept running off. When I asked him if he wanted to play with (insert child's name), he said, "No". I wasn't sure if this was really an accurate answer, so I asked him some other questions.

"Do you want to play with Rachel?"
"Yes!"
"Do you want to play with Daniel?"
"Yes!"
"Do you want to play with (insert child's name)?"
"NO!"

Ugh -- that's not the result I was hoping for, but it was clearly what HE meant. He ended up spending the remainder of the playdate still playing, but avoiding his friend and classmate. I really hope that his mother wasn't taking it personally. And I hope it was an isolated incident. I really do think that we need to repeat this experience, but am concerned that if Simon really doesn't want to play with this child, it will be a bad experience.

Perhaps it was because he hadn't seen this boy for over a week. Or perhaps he just wanted to spend the time playing with his brother and sister, something he'd been doing for that full week. Or perhaps, he just wanted to do an activity that this other boy wasn't interested in. Or, even possibly Simon was just tired (he nearly fell asleep on the drive home and would have fallen asleep if it took us just a couple more minutes to complete the drive). Who knows.

It's interesting in a strange way, watching how Simon interacts with the world around him, especially when I watch him next to his big brother. Daniel sought out other children on the playground to play with. It didn't matter what they were playing, as long as they would allow him to participate. Simon, however, wanted nothing to do with anyone (except Rachel). This is autism. But I have to wonder how much of his isolationism is truly autism and how much is a personal preference of who he likes and dislikes.

This is one of those moments where it would be nice to have that little window into his head to have that peek inside.

They are still children

2011-04-18T20:27:00.002-04:00

And they are still twins. As we were reading bedtime stories tonight, we saw the proof that they learn from each other. Yes, Rachel and Simon may be oblivious to the people in the world around them (at times). But they are also perceptive. And they, as we already knew, are very smart.

Tonight, one of the books I chose (and Kevin was reading) was "Brown Bear, Brown Bear, What Do You See". It's a definite favorite. All 3 kids love this book, Rachel and Simon in particular can't get enough of it. Both programs have used this book on multiple occasions to work on colors and animals, animal sounds -- it's a great book for learning.

Simon's sense of humor has him regularly say something that he knows is incorrect. He will insist on it and then, when he perceives you are going to give in, he announces "Silly Simon!". One such thing is during this book. Instead of a "Teacher", Simon has been saying "Monitor" (we don't know why -- at first we could have SWORN he was saying "Mother", but he has proven to us that he means "Monitor"). Tonight, Simon was willing to accept "Teacher". So, Rachel picked up the slack. From her mouth, she shouted "Monitor!"

We love seeing these moments. In addition to them showing their personalities, it reminds us that they are twins. That they learn from each other. That they rely on each other. And that's something that they will have forever. They know each other in ways that others can't even begin to imagine (unless they themselves are a multiple). Their relationship defies description. And we are privileged to see this nearly every day.

I think I've grown....

2011-04-15T20:14:00.003-04:00

For some reason, today I've been rethinking what I've gone through over the last 2 years. From the moment that the developmental pediatrician told us that both Rachel and Simon were on the spectrum to me pushing for the votes for this blog to be recognized, what have I learned about myself? I was thinking about how much everything has both changed, and stayed the same. But I also started thinking about my own journey towards acceptance of my children's diagnosis. And realizing how much further I still have to go.

I found myself thinking of a conversation I had a year and a half ago with someone from Infants and Toddlers (Early Intervention). I remember calling her needing to talk (not sure about what anymore). We tried to coordinate a time, but that proved difficult not because of our schedules per se, but because of me and my family (H1N1 hit this house pretty hard, including Daniel developing a mild pneumonia). But we eventually did get together to talk. Again, I don't remember the original topic of the conversation, but I do remember moments. I remember after talking for a while, she asked me if I blamed myself for what happened to my children. I remember telling her "No, I know that I didn't do anything to cause them to be autistic." And I did know that. But I also remember thinking how could it NOT be my fault. I have 3 children, 2 of whom have autism. I love them (and always have) as much as their older brother. But did I ignore their needs in favor of their brother or my own exhaustion? What choices had I made that could have led to this outcome?

The other thing I remember from this conversation was something that I was immediately ashamed of, and still am embarrassed to admit it. Anyone who is faced with a situation that they are unhappy about seems to have this comment running through their head, but most of us are smart enough to not say it. I can't say that. I said it. I still can't believe it. "I didn't ask for this!". Whoever would ASK to have a child with a disability that could prevent them from living an independent life? Who would ASK for a parenting career full of additional worries about their children? Who would ASK for the challenge of raising one or more children on the spectrum? None of us ask for this. But we have it. It has happened. And the best we can do is live with it. I don't remember what she said when those horrible words left my mouth. I was either too mortified (with myself) to listen to the answer or have just blocked it out, again due to the fact that I was so mortified to have asked the question in the first place.

This conversation happened approximately 7 months after learning that Rachel and Simon were on the spectrum, and about 2 months after learning their official diagnosis. Since then, we've seen progress and regressions (in both of them). We've watched them develop language. We've seen them learn to begin playing with others. We've watched them take on the challenges that are presented to them, and have learned to introduce new ideas and experiences.

And I've embraced the idea of being an"Autism Mom". I'm not fully there. I still fight it. I still strive for them to fit in with their typical peers and force them to have experiences with them. I still want to see them succeed in school and in life without their differences defining them. But when I think of where I was on the day of that conversation and the day I asked that ridiculous question and where I am today, I have to admit, I'm pleased with the progress that I have made.

Please Vote for Me!!!!!

2011-04-13T20:14:00.004-04:00

All right -- there is something really wrong with me. It's April 13 and this is my 6th post already this month. But there's a couple of good reasons for that. (1) It's "Autism Awareness Month" and this is the time to get the word out as best as possible and (2) I'm being web-published outside of this blog and wanting as many of you to enjoy these other writings (and continue stroking my ever-growing confidence).

Well, thanks to all of you (with a shout-out to one of my specific followers), I've been nominated for an Honorable Mention alongside the Top 25 Autism Blogs per Babble.com. The nomination came approximately 9 hours ago and I'm currently in the lead! This is doing wonders for my ego!!!!! This blog has undergone a couple of transformations since I started it. This brings it back to my original intent of using it to inform and support the growing population of families dealing with a child having an autism diagnosis. When I started it, I had a very difficult time finding writings that weren't of the "Dr. Wakefield is the Autism deity!" or "Vaccines are evil!" variety, both of which rubbed me the wrong way. I was angry, lost, confused, and terrified. I wanted to show a different viewpoint. I didn't know if anyone would ever read it, but I knew I was putting it out there.

Now people are noticing! And all I can say to that is "COOL!!!!!"!

So, now I ask you, please come and vote for my blog. Please click on this link and indicate that you "Like" My Family's Experience With Autism (http://www.babble.com/Baby/baby-development/top-25-autism-blog-favorite-nominate/index.aspx). I would VERY much appreciate it!!!!

Thanks for your support!

Just One

2011-04-12T20:28:00.001-04:00

Today, another post I wrote has been "published" on the internet -- this time it was the submission I made to Parent Magazine's GoodyBlog. It is part of the series, "Voices of Autism". I also noticed that it's been "tweeted" and "re-tweeted". I am really just floating on air this week. This is the second web-based publication for me, not including this blog (and since this blog is under MY control, it barely counts on that score) in less than 5 days. I suppose you can say that I'm taking my role seriously when it comes to informing others about autism this month....

At the beginning of the month, I made a challenge to anyone who would listen -- try to get one person to "GET" it. One person to not glare at an autistic individual. One person not to accuse a struggling parent of "spoiling" their child and claiming that their children would never behave in such a fashion. One person to understand that autism is outside of control of those affected and their families. One person to not judge but offer help or even just simply walk away if they're not in a position to help. One person to not ask to change their seat in a restaurant because an autistic child has been seated nearby. One person to see that we are facing an epidemic and a challenge that we cannot be fully prepared for. One person....if we can all convince just one person....how much easier our lives could be.....

Hopefully, these efforts have allowed me to fulfill that challenge.

2 Quick Things

2011-04-09T20:21:00.003-04:00

There are a couple of quick things I want to talk about tonight.

First of all, a bit of self-promotion. I mentioned in my last post that I was going to be a featured "Guest Blogger" on the meta-blog "Multiples.....and More". Well, the link is there for anyone who is interested who hasn't seen it yet. I hope it isn't too heavy handed. But it IS honest.

Second, I wanted to talk about Daniel's birthday party. It was at a facility filled with inflatable toys, called BounceU. Translation, it's LOUD. There are powerful fans that keep everything inflated. And we were concerned that Simon would have trouble dealing with the noise and the insanity of a birthday party for a 6 year old. We were (surprisingly) wrong. He had a BLAST!!!!! One of the "party professionals" really helped him out and pretty much attached himself to Simon (and to a lesser degree, Rachel) to help them deal with potential sensory overloads. And they both had SO MUCH FUN!!!!! And overall, we don't think there was anyone there who didn't have a great time (talk about a successful kid party)!

So, today was a completely EXHAUSTING day, but it was an amazing one!!!!! Daniel had a wonderful birthday party, and we got to have the fun of watching all 3 of our kids (and approximately 20 others) have a great time playing together.

Tooting my own horn

2011-04-08T12:53:00.004-04:00

I am still on a bit of an emotional high. As many of you may be aware, the April edition of Parents magazine did not contain any publicity about Autism and Autism Awareness Month. Many individuals in the autism community were outraged and began to bombard the magazine with letters and emails. They heard us. They are dedicating a portion of their "GoodyBlog" in a section called "Voices of Autism" to families stories about autism every day in April. I wish it was more, but at least there is now SOMETHING.

They asked families to provide the magazine with specific information. I saw this, thanks to another blog that I follow, and submitted my family's story. And, on Wednesday, I received an email from the magazine. They have decided to include my story. It will be "published" on Tuesday, April 12. From what I understand, they are still requesting stories from families. If you see this, please go to Parents Magazine's GoodyBlog and the specific information they request is listed and feel free to submit your story.

Also, last night, I received an email from the administrator of another blog I follow (Multiples and More). I wrote a guest post for them last year during Autism Awareness Month and I asked if they would be interested in me doing the same thing again this year. She thought that would be a good idea and I wrote a post. That is going to be published tomorrow (Saturday).

Can you see I'm excited? And can you blame me? This is how I spread the word. This is how I honor Autism Awareness Month. This is my contribution.

Daily Challenges

2011-04-05T20:17:00.002-04:00

Simon needed a haircut. Daniel's birthday is next week and his party is on Saturday. Simon's haircut was overdue. Because Simon has an early dismissal on Mondays and people don't seem to get haircuts on that day, Mondays are the best day to do it. So, we went.

It was a beautiful day. The sun was shining and it was the perfect day to go outside and play. But we had a job to do. We had to get a haircut. So, when Simon got home, we got into the car. We did our normal car seat dance. And we drove to the hair dresser that specialize in children's haircuts. And he was promised a trip to the playground when the haircut was over. I didn't hide what we were doing. He was OK with it. At that moment.

We walked into the store. He recognized it. He covered his ears, but didn't scream. He didn't even cry. He just walked over to the spot where they keep the books. He asked for Thomas. He found the book "Where The Wild Things Are" and looked at the pictures. All was well. We sat there and he "read" the book to me (each page, "Monsters"). I showed him a Thomas DVD and he smiled. I gave it to the woman who would be cutting his hair. She started it but Simon wasn't ready. We waited a little longer, then I started pushing the issue. I brought him over to the chair. I spun it around. That's when the screaming started.

He sat on the floor. I sat behind him. I put him in a hold. He had his hands over his ears, but allowed me to hold his arms near his side and keep his legs still. The haircut had begun. She worked with us sitting on the floor. Simon screamed. But he didn't try to kick. Then the screaming quickly dropped to a cry. Then, suddenly it stopped. His hands stayed over his ears, but he was all right. And, 5 minutes later, the haircut was all done.

After paying, I kept my promise and we went to a playground nearby and played for about 40 minutes before we had to leave and prepare to pick Daniel up from school. He had a BLAST! And he proved that he has become a Climbing Master!

So, this is twice where getting a haircut wasn't a total catastrophe. Does that mean that we're passed this? Who knows. But I'm finding great relief in just the thought....

My take on Autism Awareness

2011-04-02T20:36:00.002-04:00

Well, it's April 2, World Autism Awareness Day, and consequently all the autism websites and bloggers I know are doing their best to promote awareness of all Autism Spectrum Disorders. But personal bloggers have an advantage. We don't just report the numbers and the statistics. We report personal stories. We report real-life situations. We report what we personally live through every day.

Just over 2 years ago, this family was thrown into "The Autism World", as our family's pediatrician phrased it. And at the time, I thought that was an amusing way to refer to it. But she was absolutely right. From that time on, in many ways I've felt removed from the rest of the world and found myself an unwilling member of an ever-growing group of families, faced with raising children with autism. These children don't see the world the same way as their neurotypical peers. They don't interact with the world as their neurotypical peers would. And because of these diverging views of the world, I've been privileged to restructure my own world. And I've found my own new obsession.

Since March 12, 2009, Autism has changed me and my life. Autism is everywhere. And it's part of everything that I do. I consider how Rachel and Simon will react to any new activity before deciding if it's worth trying. With Daniel, I used to say, "Well, let's give it a try and we'll just make it happen." Now I have to prepare the family for any new experience. Social stories has become a standard, even if it's not done in that form. Using YouTube to demonstrate similar experiences is another thing that I've learned to incorporate into introducing new things. I tend to ask for advice from teachers when planning a major event (like the Laurie Berkner Band concert last month). Again, with Daniel, we would just simply GO. But Autism has taught us the need to plan and consider every detail so that we can respond quickly if things don't go the way we envision.

We depend on routine. We depend on predictability. We depend on consistency.

And we have come to depend on Autism.