Wednesday, February 29, 2012

And the answer is......

Well, today was the meeting to determine Ballerina's placement for kindergarten next year. We were also going to review the recent re-evaluation of her autism classification. Her last official evaluation was over 2.5 years ago and given her progress, the information contained in those reports were completely out of date. Don't get me wrong -- she's still autistic. But, in addition to those reports being over 2.5 years old when we are talking about a 5 year old, so much has changed since the introduction of intensive ABA (which had not been started at the time of the last evaluation) that we really couldn't use that report to understand her current status.

The review of the reports was really simple. The data that had already been presented to us about a week ago in the form of the written reports. We had a few questions, but the majority of the meeting was spent doing 2 things....(1) listening to the pre-K teacher describe her recent performance in class and (2) determining her kindergarten placement for next year.

When the pre-K teacher arrived, I was so grateful for everything she was saying. She spent about 15 minutes describing the problems that Ballerina was having in integrating into the classroom. She talked about how disruptive she is during circle time and group lesson time. She talked about how Ballerina has trouble dealing with the sudden changes in routine that just naturally come up. She is running into all sorts of minor problems with the teacher. She also never really cares about her classmates. She wants to do what she wants to do, when she wants to do it. That's Ballerina. And by the teacher bringing up these issues, I was just gaining ammunition to use to support my thoughts that she belongs in a special education classroom.

But when it was time to talk about placement, I was a little surprised by what the Autism Office representative proposed. She said we should wait until June to make our decision. Following the suggestion of a friend who has been through this already, I was prepared to ask them if we could revisit this issue at the end of the school year when we see where she is at that time. I have been promised that there will be a place in the Early Learning Center if that's where we feel she will best succeed at that time. And, if not, we can decide to put her in a typical classroom with "xx hours of resource" per week. I'm not exactly sure what that means, but I intend to find out. We were talking about 15-20 hours per week. 1-3 hours of that will likely be for speech and OT (occupational therapy), but I'm not sure where the rest of the time comes in. Would she be spending that time in the Early Learning Center? Or will she have a para shadowing her and helping her get through her day? This is something I need to find out.

But in the meantime, Ballerina's teachers are going to be doing some experimentation. She currently participates in the pre-K class in the morning. They are going to try to introduce her in a kindergarten classroom (which is considerably more structured) for an hour in the afternoon to see how she performs. She also is going to start having lunch with the kindergarten class to see how she interacts with those kids. They are also going to start having the para become more invisible. They will be there to help should the need arise, but they want to see what Ballerina can do on her own. This is all information we can use when we meet again at the end of the school year.

So, we don't have an answer, exactly. But we do know that she will attend her own home school. Which means that, as of right now, we know that 2 of my children will be attending the same school next year. Music Man will likely be joining them, but we won't know that for sure until his meeting next month.

Monday, February 27, 2012

Our Next Step

It's been a few days since I sat down here to write a post. I think I just needed the time to think things through on my own and digest everything that happened to my family in the last 10 days or so. And many of these things are WONDERFUL!!!! Potty Training success (Music Man is even starting to stay dry during the night [although we have no expectation of that happening right now]). And the recommendation for Ballerina's placement -- it truly is a dream come true. I just needed to take a few days and get my head wrapped around it all. And I needed to do that before our meeting on Wednesday.

It's funny that I took time OFF from blogging when I was trying to get myself organized -- usually, this is where I do my thinking. But I think this one was a bit more internal. I love sharing our stories, but I needed to think this through on my own and then come back when I understood where we are headed. And now I believe that to be the case.

I'm speaking, of course, about Ballerina's kindergarten placement. Getting the recommendation of having her enter a typical classroom in kindergarten -- that really goes beyond our wildest dreams. This is what I want for her -- for both of them. It has been my goal from the moment we began our journey in the Autism World. But I have to take a step back. That may be my dream, but is it a wise decision for HER? SHE is the one who has to go to school every day and cope with her classroom, teacher, and classmates. Is this too much for her right now?

We think it is. Her current school environment is 1-on-1. In a typical classroom, there will be 1 teacher for upwards of 18 students. There will be no supports for her. And we are seeing an increase in behaviors over the last few months as well. So, we have a proposal for the team.

We don't believe she is CURRENTLY ready for a typical mainstream classroom. And based on the reports we received during her re-evaluation, we really don't think her teachers believe she is ready for that either. But that doesn't mean that she isn't ready to be introduced to a typical classroom setting. We can continue working with her during this school year to maximize her independence in school. We can fade the supports that she receives so that she has to do more and more things on her own.

But for next year, we are going to request that she enter the Early Learning Center. The nature of the program allows her mainstreaming opportunities for gym, art, music, lunch and recess. But she may be ready for more then that. After she establishes herself in her new school setting, we can begin bringing her into a typical classroom independently. We can start with short bursts and increase the time she spends in a typical classroom as she demonstrates she can handle the experience. Then, by the end of the year, she will be ready for a typical classroom setting and in first grade, we can introduce that new environment for her.

I believe this recommendation was made blindly. I don't believe the cluster representative had access to her records and history. She came and watched her for 20-30 minutes and the teachers tried their best to be sure she was as cooperative as possible. This is a good thing. I wouldn't want the cluster representative to be biased given what was written in those reports when she arrives to observe. But she doesn't know Ballerina. I do. Her teachers do. And I feel that she is overestimating what Ballerina can do right now.

I'm comfortable with this decision. I really do believe it's best for her and will allow her to adjust at her speed. And we are only talking about postponing mainstreaming for approximately one year. She may "survive" mainstreaming right now, but I really don't think she'll be able to thrive. I need her to THRIVE. Not just get by. If one more year will make that difference, it's definitely worth that postponement.

I'm not exactly sure what I will be walking into on Wednesday. Given the reports from her re-evaluation, the team should agree with me that mainstreaming to start her kindergarten year is not the wisest placement option for her. But I know they tend to be a bit aggressive. I am going in there prepared to argue for what I know to be the best for my daughter and hopefully that preparation will not be necessary. But I'll be prepared.

Friday, February 24, 2012

It's Been a Very Long Week!

This week has been a week of anguish and frustration as well as elation and celebration. In the last 7 days, we daytime urine potty trained Music Man (and if you aren't familiar with nearly every detail of that process, you obviously have NOT been reading my posts lately), took Ballerina to the developmental pediatrician for a scheduled review, received and read the updated reports about her current status and situation, and sat around listening to the results of her being observed by our cluster representative to determine kindergarten placement (already completed for Music Man). Yes, it's been a busy week.

You see, Ballerina's placement meeting is on Wednesday (February 29) and we will be making a decision at that time and we need to consider what the experts have to say as well as think about where we know her to be. We have been addressing her ADHD issues for a while now with mixed success. She has been having some difficulties in school lately as well. And the only thing I've been able to think of is, "NOT NOW!!!!" You see, my husband and I both made up our minds which program we wanted to see her attend next year, and if these behaviors continue, I can see her not receiving the recommendation which means we need to work harder in the meeting to convince the team that she belongs there. And I also received these reports that pointed out the many issues we are familiar with. Once again, I was getting the feeling that she wasn't going to receive the recommendation.

Well, today was the day. The cluster rep was coming to observe her and tell the team what she believed is the best program option for our Ballerina. Earlier this afternoon, I received a phone call from the team member from the Autism Office to share those recommendations. What she told me was that Ballerina would "likely succeed in the home school model".

First, let me just explain quickly, when they say "home school", they aren't talking about "home schooling". They are referring to the school that a child would attend under normal circumstances. Our home school happens to be down the street from our home. Big Brother walks or gets driven to school daily because we live too close for him to be bused. And, we are lucky that our home school offers a special education program called the "Early Learning Center". This is the program that Music Man has been recommended to attend next year and we were hoping for the same for Ballerina. So, this is what I assumed they were referring to.

As we were talking though, I realized something. She said "home school model". She didn't say "early learning center at her home school". HUH?!?! So I asked the obvious....."Are you saying that she is recommending Ballerina attend a typical kindergarten classroom?????" Her answer...."YES"!!!!!!

I'm in shock. When we first learned Ballerina and Music Man were on the spectrum, we decided we would do whatever was necessary because we wanted them to enter a typical kindergarten classroom when the time came. But when Big Brother was in kindergarten and I saw what these classes looked like, I modified that goal to the Learning Center, feeling that mainstream kindergarten was asking too much from them. And it looks like we have met that goal. I'm almost speechless!!!!

This weekend, Dad and I need to do some soul-searching. We need to decide what is best for her. Is she ready to handle the stress of being in a classroom (with just one teacher) with 15-18 other students? Yes, she will continue to receive speech and OT, but what is the best environment for her?

But one thing seems certain right now. Ballerina will be attending our home school for kindergarten. And so will Music Man. They will join Big Brother and all 3 kids will be in the same school. That is a huge victory all by itself!!!!!

And I plan to celebrate it. Long and hard.

Thursday, February 23, 2012

Mission, Accomplished!!!

Yes, I am declaring victory!!!!


Music Man left for school on Tuesday morning. He left for school in underwear. He had an accident before leaving, but it was just before so I felt safe sending him on the bus without a Pull-Up covering the underwear. In his backpack were 6 pairs of jeans and 8 pairs of underwear. I was prepared when he arrived home for him to have a large plastic bag full of wet clothes.

But that didn't happen. Instead, I got a phone call from his teacher. He had been withholding all day. But finally, at 1:50 (school ends at 2:00), with his Physical Therapist, he finally let go. And, from what she said, he let it ALL go!!!!!! He stood there with a strong stream leaving his body for almost a full minute!!! But the praise came right away, and Music Man just eats it all up. He had a Pull-Up for the bus ride home, worn outside of his underwear, but he kept himself dry for the rest of the day (with another successful bathroom visit not long after he arrived home). He stayed dry until Pajama Time when the overnight diaper was put on to end the day. Since we are not working on him staying dry at night, that was considered acceptable.

Yesterday (Wednesday) played out almost the exact same way. He had the morning accident and headed off to school. He stayed dry for most of the day and finally at 1:30, he was ready to let it all go. He arrived home dry, urinated shortly after snack and stayed dry until Pajama Time again. (he did need a change of clothes due to a large BM, but again, we're not concerned with that right now) 2 days in a row with only 1 accident.

This morning, Music Man overslept. He woke up on his own shortly before I had to go in to wake him. He woke with a smile on his face. I undressed him and had him sit on the toilet. And, to my surprise, about 1 minute later, he successfully urinated in the toilet. He had NEVER done that for me!!!! I was so proud of him. He got dressed and I kept an eye on that clock. For the last two days, he's had an accident between 8 and 8:15. I was going to try to be sure that didn't happen today. At 7:45, I brought Music Man to the toilet. We stayed there for about 3 minutes and then I had to bring him back to the kitchen table. Ballerina's bus arrives at approximately 7:55 and I had to finish getting her (and her lunch) ready. As soon as her bus came, I took Music Man back into the bathroom. After sitting there for about 2 minutes, the urine stream came out of him. THAT'S TWO TIMES THIS MORNING!!!!!! Not long after, he climbed on the bus in the same Perry the Platypus (from Disney Channel's Phineas and Ferb) underwear and torn jeans that I put on him first thing this morning. And his teacher called earlier today -- he let himself go to the bathroom at 11:30 this morning so he wasn't withholding all day!

I think we have finally gotten through to him. I don't believe he is able to anticipate the need to go. He needs us to set the timer and take him at regular intervals. But 30 minute intervals seems to be sufficient as long as we watch the clock for that 8-8:15am release.

I am now comfortable in announcing that Music Man is successfully Daytime Urine Potty Trained!!!!!!

Monday, February 20, 2012

Potty Training Boot Camp, The Final Day

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.

Uploaded from the Photobucket iPhone App

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.

Sunday, February 19, 2012

Potty Training Boot Camp, Day 2

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, 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".

Saturday, February 18, 2012

Potty Training Boot Camp, Day 1

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!

Friday, February 17, 2012

My Head Is Spinning

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'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????????

Thursday, February 16, 2012

My Experience At Potty Training Autistic Children

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, 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.

Wednesday, February 15, 2012

Keeping It Going....

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.

Tuesday, February 14, 2012

Happy Valentines Day!!!!!

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.
Uploaded from the Photobucket iPhone App
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.
Uploaded from the Photobucket iPhone App

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.

Monday, February 13, 2012

Another small vindication

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.

Sunday, February 12, 2012

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

Uploaded from the Photobucket iPhone App

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. 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 just 5 days......

Wednesday, February 8, 2012


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!!!!!

Tuesday, February 7, 2012

My Personal Conclusions

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!

Monday, February 6, 2012

When it gets to be too much

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????????