When the "Big Bad World" Attacks

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....

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

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

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

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

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

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!!!!!