Max now has an official diagnosis of Autism Spectrum Disorder, severity level 1. This means he is fairly high-functioning, but will still need supports/accommodations in school. In the words of the developmental pediatric specialist: "...he would require support to function in social settings without supports in place; deficits in social communication cause notable impairment. He will have difficulty initiating social interaction, and demonstrates clear examples of atypical or unsuccessful responses to social overtures of others. He also has decreased interest in social interactions. Rituals and repetitive behaviors are present and cause significant interference with functioning in at least one context. he may resist attempts by others to interrupt his restricted and repetitive behaviors or to be redirected from this fixated interest."
I remember when I was pregnant with him, and still somewhat reeling from finding out he was a boy and worried because a) I didn't know anything about boys, and because b) I had (somewhat subconsciously) hoped that if it were a girl, that might mean Hannah was back in some form.
Anyway, I was on my way somewhere and saw a bus from MCBDD (Mahoning County Board of Developmental Disabilities) and having a sudden flash of panic that since he was a boy, we were more likely to maybe have to deal with autism or something similar. I think I may have even mentioned it on here at the time.
He was beautiful and healthy when he was born, and continued to be so; we had a few issues with newborn jaundice and nursing difficulties; he turned out to have reflux which pretty much resolved itself after he started solids; and he grew and developed normally. The only thing that worried me was that he seemed to be a bit delayed speech-wise, especially compared to his sisters.
The playgroup I was in at the time had a few boys who were around the same age as Max, all of whom I'd known since birth, so it did give me a cohort to measure his growth and development against. By the time they were all getting between 1yo-18mo, I noticed some differences in how he communicated/interacted. It seemed more like a delay than an actual inability, since he progressed at the same rate the other boys did, but consistently 6 months to a year behind. As he was getting closer to age 2, I decided to have Help Me Grow (a state funded early-intervention program) come out and observe him. They did a few times, and agreed that he had a bit of a delay but that since he was progressing, and since he was obviously making attempts to communicate and seemed otherwise ok, that there wasn't major cause for concern.
The next year or so went by and he continued to develop, still behind but still progressing. As he turned 3 and preschool was on the horizon, I still had concerns and asked around and was told that I could call the county educational services department to schedule an evaluation; not just for speech but perhaps to rule out autism or Asperger's, which I was starting to suspect.
My reasons for suspecting either of those weren't based on anything very obvious or concrete; he didn't seem to show textbook behaviors like flapping his arms or being obsessive about things, but there were a few minor things with making eye contact, or responding to his name -- he did both of those things but not as much as I thought he should. He seemed to have more trouble with transitions and loud sounds than either of the girls had at that age. I wasn't so much seeking a diagnosis as looking to rule one out. We went to the evaluation and they did seem to think there were some delays/concerns, but they weren't specific. They recommended speech once a week and OT once a week; we had an option to put him in a special needs preschool (which had about half neurotypical kids in it) or just have the speech and OT people come to the mainstream preschool we were planning to enroll him in. We opted for the latter and it worked quite well; the OT especially was great. Max had two good years in preschool (with a two-week Montessori psychotic episode on my part) and was ready for kindergarten when the time came.
We had to use the elementary school's speech therapist, who wasn't quite as on the mark when it came to Max's issues, but who did work with him pretty well and he liked her. There was no OT written into the kindergarten IEP, which was a big mistake. He also had a horrible kindergarten teacher; this woman seems to hate teaching (particularly kindergarten) and although she wasn't specifically mean, she just seemed constantly stressed out and frustrated. I get that it's a challenging grade, but I have seen a few different K teachers in action with my other kids and Mrs. R's nonstop yelling and bitching wasn't necessary and was pretty counterproductive. Max mostly just ignored her after a while. I noticed, too, that some of the kids with only minor behavior problems at the beginning of the year got progressively worse towards the end of the year, which I'm quite sure wasn't a coincidence. She was a nightmare at our first IEP conference ("Oh I just don't have a CLUE what to DO with him! He can't seem to finish his WORK without HELP!"). And we got a "Well he's just quirky, he'll grow out of it" from her too. Very unhelpful.
Anyway, we got through the year and he had a pretty good summer -- went to half-day camp for a few weeks at the Y with Emily, taught himself to swim (which he LOVES) and got excited about going to first grade. There was a specific teacher I wanted him to have -- she not only has a special ed certification but she also has a daughter with autism, so she has been on both ends of this experience and she is also not a yeller; in fact she is great with her class, handles even the most difficult students with grace and patience, and obviously loves what she does and is fully committed to it. He got her and this has been the best year ever. She was happy with getting the formal diagnosis because she has so many ideas for accommodations, supports, help for him, social skills groups and so on. We couldn't be happier.
I do struggle a bit with how to present it to Max himself. I haven't actually told him he has autism, but I want him to be able to be comfortable with the idea and to advocate for himself when he needs to. I'm reading and asking questions and hoping to get some good ideas soon.
There was a part of us that grieved when we got the preliminary diagnosis. Not because we didn't already know that it was probably what we were dealing with, but because there was a part of us that felt sort of entitled to a break (for lack of a better term) -- we lost one child so we shouldn't have to deal with anything difficult or painful with any of our other children. We know all too well how unreasonable that is, but I imagine it's not uncommon for bereaved parents to experience this somehow. We worry for how Max will function as an adult, or even navigate middle-school horrors. But -- he is so funny, so smart, absolutely unique, and he wouldn't be who he was without this. We wouldn't change a thing, and I am damn glad he's here and he's exactly the way he is.
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