I took R to the pediatrician today, thinking that I need to get everyone involved in whatever treatment plan we come up with. He's not really happy that the psychologist didn't use an Asperger's rating scale (she said she hasn't found one that she really likes), and doesn't have anything about the qualifications in the DSM in his psychological assessment report. I talked to a few people last night at a dinner, one works for First Steps, one has a son who is HFA/AS, and one who is a psychologist and works at our Autism Training Center. All three of them were surprised that he received this diagnosis without a rating scale and without DSM qualifications. Now, I don't know that she didn't figure the DSM in her final assessment, but it isn't in the report at all.

Anyway, the pediatrician is going to fast track us to a Child Evaluation Center, specifically to a developmental pediatrician who will evaluate Ryan and then decide what other evaluations he needs (speech pathologist, OT, etc.). This will in essence be like a second opinion, I guess, or maybe just more in-depth evals, I don't know. But I'm all for more evaluations.

My last chance school didn't come through for me. I'm not sure what we're going to do now. The only options are keeping him at StMM for half-days, putting him in a public school (only to change schools in the fall, because our "home" school doesn't have room for him right now), or home-schooling him. Tomorrow I need to call and find out which school he would be at if I put him in JCPS right away, that will make a difference in my decision.

Ryan had a bad day at school yesterday, knocked some poor girl to the ground for no reason during PE. I got a stern note from the PE teacher "This behavior will not be tolerated." Well, duh. He was apparently off-task most of the day, which is unusual. The night before he'd had a meltdown at bedtime and didn't end up getting to sleep until 2 hours later than usual. I don't know if that had anything to do with it or not. This morning he was defiant and shrieky about everything, so I made the decision to keep him home from school. It makes me nervous to send him when he's having a rotten morning, and today was a pretty unstructured day. He missed his holiday party and gingerbread building with his 6th grade buddy, and I feel terribly guilty about it, but he was in such negative shape this morning I didn't want to risk another day like yesterday. I'm not sending him for the short day tomorrow either. I don't know that he'll go back to that school or not in January. Ugh.

So here we are.

I've accepted the Asperger's diagnosis. And it's just replaced one weight with another. The weight of not knowing what the heck was going on with him is gone, but now I feel weighed down with this life-long diagnosis for him. I feel the stress of making sure we do the right things for him, because it can make a noticeable difference in his future...but I don't know what the right things are. I want to get started, but I'm hesitant to make the phone calls. I'm afraid to ask questions because I'm afraid of the answers. I did mention to some Asperger parents how I really think Ryan's situation is pretty mild and the unilateral response was that it gets "worse" and more noticeable with age, especially once they hit the pre-/teen years. This isn't something that can be "fixed" with a couple of years of therapies. He'll be dealing with this for the rest of his life. I'll be forever worried about his social skills and whether he has friends and whether he's being bullied at school. I'll never be able to take school days for granted with him. The whole bitter-sweetness of sending him off the kindergarten has just turned into bitter, bitter and more bitter.

We have a pediatric center here at the University of Louisville that runs an austism clinic for the Systematic Treatment of Autism and Related disorders (STAR). I'm going to contact them this afternoon and see what kind of support we can get. The run some social skills groups, have therapy sessions, and overall try to integrate treatments. I'm hopeful that they can help us along.

I'm not really any further along with finding a school for Ryan. Well, I guess I am, in that I now know what ones WON'T take him. Right now his school is saying that at the most, they will allow him to stay for half-days only (morning through lunch), and only guaranteed through conference time in late January. There is one school possibility that I'm working on, they need to see if they can fit his needs into their current class. It's an inclusive school, with 20-30% special needs, and they have openings in both their half-day K and their full-day K/1 classes. It's a small private school that focuses on hands-on learning and their class sizes are only 12-14, with two teachers. It would only take him through 2nd grade, but it might give him the time he needs to mature and then possibly transition back into our parish school. The other option is keeping at home until there is an opening at our home public school.

I met with his school last week and man, I wish I was stronger. I was in tears two or three times during the meeting and I just hate that. Part of my frustrating with this school issue is that I can't see what is happening...I don't know what preceeds his problems, I don't know what things might trigger them, or what typical personal space is for a 6-yr old that he's not getting. I'm frustrated because I don't know exactly what kind of school environment he needs, so how will I know when I find it?? I think one of the worst things I could do is bounce him around various schools, trying for the right fit. Not something a child lacking social skills should have to deal with. Fortunately he *is* very social, likes other kids and isn't shy at all. He makes friends everywhere he goes (just doesn't always keep them!!). No one seems to be able to help with this school thing either...no one has any answers. Ugh.

That's it for now.

I couldn't sleep most of the night. I couldn't shut my mind off. So many questions, too much information.

Am I up to the task of doing what's best for Ryan? I don't even know what's best for him....so how can I do it? I try to research it, and at times nothing seems relevant to my situation with Ryan. I've had the same problem with researching SPD. What I find are forums and articles about kids who are deep into these disorders, whose lives are greatly affected by them, hour by hour, moment by moment. We are just not in that situation (praise God). He's so borderline on everything...Asperger's is borderline (actually AS or just some quirky behavior...who's to know?), his SPD is borderline (hits a bunch of the delays and behaviors, but nothing that holds him back all that much).

I joined an SPD forum only to discover it's primary focus is "recovery"....they believe a lot of SPD is caused by yeast overgrowth in the gut, heavy metal poisoning, food allergies and sensitivities. All fine and good, but the recovery process is highly detailed, time consuming, expensive and difficult. I can see it being an option for an SPD child who can't stand to be touched or has to have the lights at dim levels all the time or absolutely cannot function in a noisy environment. Ryan is not that severe by any means. Many of the kids on the group who have gone through the recovery process were brought up no higher than the level Ryan is now, if that makes sense. I'm just not sure that process is relevant to our situation. I mean, we might see a little bit of improvement, but would it be enough to justify the expense (both monetary and life quality/convenience)?

I'm having the same situation with researching Asperger's. So much of it is geared towards much more severe situations. Trying to weed through all of the information is so frustrating.

I have to make a decision on whether to let StMM know about Ryan's diagnosis or not. The psychologist said it was totally up to us, she'd rewrite the report to gloss over that part if we wanted. There are pros and cons to it, especially in a situation like Ryan's, which is so borderline. When I say borderline, I'm saying that it's mild enough that he won't qualify for services through the public schools. Same with his SPD. Anyway, until I find a good school fit for Ryan, I'm thinking I need to leave him where he is. He loves it there, he has friends there, he's happy, doing very well academically. I don't want to move him until I'm sure we've found a place that will do well by him. I'm afraid if I give his current school the diagnosis they will decide they can't deal with it just because it now has the name "Asperger's", and not give me the time I need to find the right placement.

That sounds kind of bad, doesn't it? That a school would let the term Asperger's scare them away from a child? I thought so too. Until I realized I am doing the same thing. I get the diagnosis and I'm immediately terrified and angry and frustrated. I wonder how am I going to handle this? How is he going to deal with it himself? And then I realize....this is my child. The same child I've loved and handled for 6 years. He's no different today than he was yesterday, just because he now has a label. It's not as if he just suddenly "caught" it, like the flu. My biggest struggle right now is to make sure I don't use this to define him...and that no one else does, either. But does that mean keeping the diagnosis under wraps?

I don't know.

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.