It's official.

My son has Asperger's Disorder.

Relief. Heartbroken. Lightbulbs. Aha. Finally.

His psycho-educational assessments came back. The psychologist called him "twice-exceptional", because he's not typical either cognitively or psychologically. His pycho-educational profile is pretty complex, he falls either in the very above average or higher range, or the below average range. Much of his cognitive ranking was in the 95+ %ile, with the exception of Processing speed, which was only in the 9th %ile. That can be explained a bit by his lagging fine motor skills, but not totally. His cognitive profile puts him definitively in the gifted range. His psych profile puts him in the clinical or "at-risk" range for aggression, hyperactivity and impulsiveness; and borderline for social skills and adaptability. He's in the normal range on the ADD/ADHD assessments (so, he's not ADD/ADHD).

I should add that the particular variations in his cognitive testing, as well as the scores on his psychological testing are consistent with Asperger's Disorder. However, she said that his is so borderline, it's not something that will hold him back. It just gives us insight into the "why" of his behavior, and along with the sensory issues, it gives us a bit of a road map toward helping him be the best Ryan he can be.

This pretty much puts us back at square one with the school system though. Most private schools deal with the typical child, and can handle deviations in one form or another, but not to the extent Ryan needs. I thought we were going to look for a school based on his behavioral needs as priority. Now what we need is a school based on his cognitive needs as priority. Most places that can deal with truly gifted children are also familiar with the quirks that come along with them.

I'm amazed that I gave birth to this child. I'm thrilled that we have finally figured out what he needs. He's brilliant. He's charming. He's full of smiles and humor. He's frustrating. He's anger-inducing. He's my child.

My son has Asperger's Disorder. We all have a lot to learn.

...and the other shoe drops

After a not-so-good week, we get to OT on Friday afternoon only to find out that it would be our final session there. They are closing the practice as of Friday. Humana has apparently screwed them over with claim payments (or non-payments), and they were nearly $50K in debt as of Friday and no end in sight. I guess 80% of their clients are Humana members. Not us, thankfully, but that makes no difference, they have to close to end the "bleeding". All of the other ped OT practices have waiting lists...which suddenly got much longer on Friday. Our OT is not even sure where she will be working. So there goes any more progress as it will be at least 6-8 weeks before we can get in anywhere else, and that means not until after our deadline of Christmas break.

Ryan had green cards all week last week. I was psyched! I thought for sure the therapy was working. Or something was working. Fast forward to this week...it's only Wednesday and he's already had two red cards and two notices of concern (when he hurts someone). I don' t know what the deal is with him. It's all pretty much out of my control, and I have no more ideas or suggestions for them on how to deal with him. I talk to him every night about the situations at school, and we discuss ways to deal with them appropriately. But it's an anger management problem I think, and he just can't remember the things we discuss when he's in the midst of it. Today he kicked a kid in the stomach because the kid tried to take Ryan's ball from him. Ugh. I guess I should get ready to home-school him.

A better update

I had a follow-up meeting with the resource director and R's teacher on Tuesday morning. We had several communications before that, and I was feeling better about things. The resource director seems to have a much better attitude than she did before. We have set up a 504 plan for Ryan, for accommodations to help him through his school day. I learned that Catholic schools are not *legally able* to plan and implement IEP's, because by law IEP's are funded by federal monies and the government will not allow those funds to go to any Catholic school student (maybe all private schools). And they don't have the private funds to pay for special education teachers/aides, so they just can't provide that. But they *will* provide reasonable accommodations in the classroom, as covered under ADA (which is I believe where the 504 comes from).

We are planning for several things.
1) we purchased a "disc-o-sit" cushion for R's chair at school; it gives him a little bit of movement which might allow him to sit a bit longer each time.
2) I'm sending a backpack with weights in it for R to use during hallway transition times, and for him to use when he gets a little antsy in the classroom. Heavy work helps SPD kiddos to settle themselves a bit.
3) they are allowing R a few more beats to respond to requests to allow him more time to process them and respond appropriately.
4) they are breaking R's day into morning/afternoon for behavior cards. He'll have a chance in the afternoon to get his green card back if he loses it in the morning.
5) R has been seated next to three good role models, which has helped his ability to focus.

He's already doing better! He's had all green cards this week, and not through any special means. I've been pulling him out for lunch to do the brushing protocol and give him some large motor exercises to get him ready for the afternoons...and we've also taken him off of all artificial colors...so I'm not sure *why* his behavior is better, I'm just glad it is! We'll be doing an artificial color "challenge" this weekend, to see if his behavior changes when he's eaten a lot of it. He had an all-morning psycho-educational evaluation this morning, so I'm anxious to see how that turns out.

Now that the shock has subsided, I'm in full-out anger and fix-it mode. Yes, I'm angry. Mostly at the one resource director who seems to not be able to see beyond my mention of Asperger's...no matter that the mention was that he has not been diagnosed with it. I really think she is projecting her own experiences with ASD and SPD/SID onto Ryan and not giving him a fair chance. She even admitted to me later that day that she hadn't been intending to suggest another placement for him that day, but that it became more obvious to her during our "discussion" that it was what needed to be done. So it's pretty much a foregone conclusion in her mind right now. I sent an email to the principal yesterday, and this is what I said:
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Dear Mr W.,

Thank you for taking the time to meet with me yesterday, along with Mrs B {resource director}, Mrs C {teacher} and Mrs M {asst principal}. I know that we all want what is best for my son Ryan.

I want to state how disappointed I am in the way the meeting went. I left the meeting feeling as if I had been blindsided. To my knowledge, this meeting was set up so that we could discuss the problems Ryan was having, to discuss his OT plan, and to figure out ways to help him. I was actually looking forward to the meeting so that I could get more information about his situation to take to the OT and the child psychologist in order to better plan his therapies. His behaviors at home are very different than at school, so there was really no way for me to tailor his therapies to his school needs until I know what those needs are. I had questions about his behaviors that I didn’t even get to ask, that I’d been waiting until this meeting to bring up so that I could do it in person. I didn’t get to ask them because within a very few minutes of the meeting starting, I had to defend an OT plan that hadn’t yet been advised of the extent of his school behaviors (which was a reason I requested the meeting in the first place…to get the information to give the OT), and then shortly after that when I raised the possibility of Asperger’s, the discussion quickly led to placing him elsewhere. I didn’t even know his behaviors were serious enough to get a Notice of Concern until I got 10 of them at once only week ago. Yes, I knew they were a problem, but not that they were serious enough that we’d be discussing another school at this point.

I talk to Ryan about each and every aggressive situation that he is called on at school. He’s generally pretty honest about these things. Some of them are within the realm of typical boy behaviors. For example, he got called on punching a boy in the stomach. When I talked to him about it, he told me this boy (his friend) told him to do it, and then dared him to do it. That doesn’t make the action right by any means, but is fairly typical 6-year-old boy behavior. One of the others happened when Ryan and a friend were playing “football quarterbacks” and they were tackling each other; it was mutual play and the other child unfortunately got hurt. Many of the other aggressive behaviors point directly to his sensory seeking issues and we have just begun the therapy for that. We’ve been told by his therapists that we should see definite results in several weeks (not perfect, but a definite improvement) with the deep pressure methods, giving him heavy work, and various other techniques geared at maturing his nervous system and helping him learn to cope.

I came away from the meeting feeling like I was being asked to remove Ryan from your school before we’d had a fair chance at addressing the problems. I didn’t even know the extent of the problems until yesterday’s meeting, and we didn’t even have a chance to really address them before the statement of placing him at another school was brought up…which means they didn’t really get addressed at all. I left feeling that it was a foregone conclusion in Mrs B’s mind that this is what needs to be done. But I will tell you, I am not giving up on this. I feel like Asperger’s was considered a definite conclusion and as such was used in defense of her “decision”; however, Ryan has not been diagnosed with it. Until we are able to figure out which behaviors will respond to OT, I don’t see how making the assumption that these behaviors are Asperger’s based and as such will take 2-3 years to work out, is in Ryan’s best interest. Please understand that I am not in denial here, I just want to get to the true root of the problems rather than relying on speculation.

Here are our plans for working on this situation now.

1) Occupational Therapy – I will discuss with the therapist the need to address the issues that directly involve school (social and learning) first and more intensely. I will schedule his sessions twice a week at minimum.
2) Observations – I will schedule school day observations with both his OT and his psychologist, so that they can see first-hand what the problems are.
3) Psychologist – he will receive a full psycho-educational (and psycho-social?) evaluation. I was under the impression that this had already been done, but apparently that was just preliminary. We will address any issues that arise from those evaluations.
4) At home we will pursue an elimination diet with Ryan to determine whether artificial additives, gluten, and/or dairy are contributing to his behavior in the classroom. We will also work intensively with him on techniques to curb his sensory seeking behavior.
5) We will look into alternative options for his schooling, in the event that the results from the above measures warrant an alternative placement.


We are at St M's for a reason. I truly believe we were led here, even though we currently live closer to three other good Catholic schools (L, H S, H T). We are not giving up on Ryan, and we are not giving up on having him at St M's to receive the Catholic education we desire for him. If in the end we need to place him someplace else, either temporarily or permanently, we will do so. But I do not feel that this being a foregone conclusion is helpful to any of us.

Thank you for your time.
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Oh, one thing I forgot to mention, is that I called the resource director after the meeting on Thursday and got her to allow us until Winter Break to make some progress. She doesn't think it's going to help, but she'll "allow it".

Yesterday we also had another session with the OT. I told her what was going on, and asked her if we could work intensely to make this happen...and she said "Heck yeah!". She's confident that with some of the therapies we can lessen his sensory seeking behaviors and improve some of his weaknesses to make things easier for him. We are going to increase his sessions from once a week to twice a week (once during school hours). We are implementing the Wilbarger Deep Pressure and Proprioceptual Protocol, and Brain Gym exercises. He will be getting a Disc-0 Seat for his chair and for sitting on the floor, to allow him some movement. I'm requesting that for 2 or 3 weeks, they allow me to pick him up for the hour that they have lunch/recess/restroom/rest time and do some deep pressure and heavy work with him, and get him back to school ready for the afternoon. I don't know if they will allow that, but I'm hoping it's a modification they'll be eager to make. We picked up a mini-trampoline this morning, and I'm letting him have sole use of it for getting some sensory input. We're also going to buy the Rainy Day Indoor Playground (trapeze, swing, cuddle swing, chin-up bar) for the new house. Today we started an elimination diet...this week or two we are eliminating artificial colors and flavorings (which will hopefully be a pretty permanent elimination). In a couple of weeks we'll eliminate dairy/casein. And then we might attempt gluten. All of these things have anecdotal evidence towards causing some of the same behavior problems that Ryan has. So there we are. I feel better with a plan.

I spoke with my aunt for over an hour that night. She is the superintendent for a small school system in Indiana. Her opinion is that we need to get him into the public school system for services. But...his diagnosis at this point is not enough to get services for him...they are really relatively minor at this point. And I really do not like our public school system. They are massive...85+ elementary schools alone. They don't have a great reputation (although some individual schools are better than others). And at this point in the school year, I'd only be able to choose our local school rather than seeking out a magnet one or Montessori or something that might be a better "fit"...our local school is traditional just like the school Ryan is in right now, so how is that change going to be good? I'm resisting that route, but it is an option if need be. What I think we will do is home school him in conjunction with attending a local cottage school that meets twice a week. It would only be for a semester and then we could explore the public school options for 1st grade. His current school did give me some other options...but short of winning the lottery soon, we just don' t have $10K plus per year to send him to a private school. Even if we withdraw our tithing from our church (which is what pays for his school right now), it wouldn't help all that much. She pretty much told me that public school wasn't a good option; home schooling wasn't a good option; but here are some private schools that might be. Ugh.

That's where we are now, anyway. Having plans definitely helps.

One of my worst fears, realized.

Ryan's school has asked us to place him someplace else. They don't think they are the right "fit" for him. The resource director spent a couple of hours observing him, and says that his sensory issues are pretty severe. He is not attending to the instruction more than 25% of the time. He has had 11 "notices of concern" since starting school...that would be 8 weeks ago. They are pretty sure he has Aspberger's in some form. And they don't recommend that he go to a public school, because the county schools just are not advanced enough in this area to do him any good. 2-3 years of intensive therapy is what is needed, along with a very low ratio classroom. So my choices are looking like $10K per year in private school that deals with learning and developmental disabilities, or home schooling him.

This may not seem like a big deal to anyone else, but I am heartbroken, angry, embarrassed, frustrated, and did I say heartbroken? We've worked so hard to get Ryan into this school. We *just* bought a house within walking distance, and the difference between that house and this one could pay for his entire elementary school in a private school. I'm not sure I'm going to find a school that will take him right now, especially mid-year.

I just feel...broken. I feel like I've failed him. I know I have.

Ryan had *3* green cards last week! It was a short week due to parent-teacher-student conferences, so that was actually an all-green week!! He was very proud of himself, and he got to choose not one but TWO prizes...both Hotwheels cars, of course.

Poor guy has lots of changes coming up. We are going to move to a new house in about 6 weeks, and I'm hoping the better house layout will assist me in keeping closer tabs on him. He really needs the reinforcement from me as often as possible. He needs to feel what it's like to do "right"...practice it, if you will...for his brain to make that connection. He also has therapy starting at the end of the week. This will be a GOOD change, I think. And we'll be getting some strategies and exercises to work with him. The new house will have room for a mini-trampoline and maybe even a deep-pressure swing. He will also start a Martial Arts class near the end of the month (after soccer is over). It's at a child-oriented sports center, and I've heard great things about the instructors there. He's doing really well with soccer sometimes. He's got the gist of the game, and is actually pretty coordinated and doesn't hesitate to go after the ball. But he has a habit of pushing and shoving to get to it. Today he scored a goal, taking the ball from within a huddle or players *without using his hands on the others!!* and getting it into the goal. I was so proud of him, and made sure to tell him that I was proud that he made the goal, but I was even MORE proud that he did it without pushing and shoving. He was beaming!! He'll get there...:-)

I need to call and schedule a meeting with his teacher, resource director, school counselor, asst principal, psychologist, and occupational therapist. Yikes! Trying to get everyone in the same place at the same time will prove interesting. As if I don't have enough going on this week with the new house...