History pt. 5- beginning school...

B began kindergarten in September of 2001, after a summer of evaluations, first by an OT, then a PT, then a full special-ed evaluation by a team from our local school district. His first CSE (Committee on Special Education) took place the very first week of school. We were lucky that one of his kindergarten teachers that year had been one of the preschool teachers that recommended we have B tested in the first place, so she was well-prepared for the meeting. We had little idea of what such a meeting would entail & although it was intimidating, we had clear ideas from the testing resultsof what B needed in order to succeed in school. He was severely developmentally delayed in fine & gross motor skills, so would need OT & PT in order to "catch up" with kids his age. Because his speech scores were so advanced, no-one even suggested at the time that speech intervention would be a good idea. We had been guided in our dealings with the school district throughout the summer by a patient of C's who is a CSE chairperson in the district, & she had recommended a chair for our meeting that was professional & not confrontational (I've since heard they have some real bears- brrr!). It was a civilised meeting. B's scores really spoke for themselves, although in the absence of a diagnosis for B's problems they had to put him in the "Orthopedically Impaired" category to get him services, & even went so far to wonder if B had undiagnosed cerebral palsy... I actually smile thinking about that now. I had spent many years working with kids with CP, & other than the low muscle tone, B really shared none of the characteristics I'd seen in my kids with CP. In either case, B was awarded services through the district, which was a great relief to us. What remained was to see how the services would be delivered.

Although B had been accepted at his present school, Cobblestone, for kindergarten, we decided to keep him with the folks who had been with us on the journey this far. The school was primarily a preschool/day care centre but it also had an accredited, full-day kindergarten on site. I had not wanted B in full-day kindergarten, being a stay-at-home mom, but the year B started kindergarten our school district decided to transition all of the kindergarten classes to full day. I had gone to the orientations for a couple of the city schools & had not been impressed with what I saw. Our neighbourhood school, one of the largest in the city, not only had all 3 kindergarten classes located in one big room the size of a gymnasium (I could only imagime my kid taking up residence under a table & not coming out- & it not being noticed that he was gone...) but at the time of the orientation meeting they had no idea of how they were going to accomodate full-day students. The other school, with an extraordinary reputation for being a diverse, community-based, whole-child kind of school, had so few openings that the only kids with a hope of getting the slots were siblings of those already attending... oh, & kids with identified special needs. They explained that they targeted special needs kids preferentially because it allowed them to hire extra staff, which dropped their student-teacher ratio significantly. I was a bit sickened when I heard this... just a few months before B was tested & identified as having special needs. We never even considered this school for kindergarten...

When B was evaluated by the distric OT over the summer, she took me aside & mentioned that she was strongly convinced that B had serious visual/perceptual problems. She was telling me in confidence because the district did not recognise these difficulties "officially" at the time, & frowned on referrals for evaluation, since the district simply wouldn't pay for the services. I asked the OT for a contact for follow-up & she game me Dr. C's name. I made an appointment with her for B just a couple weeks before school began. After a full opthamalogic exam (which he'd had earlier in the summer with another doctor & was pronounced to have normal vision...), she did some additional testing that the previous doctor had not done. As it turned out, she told me that B did not have binocular convergence, so he his eye weren't working together to allow him to see properly. His actual vision was fine, but it was hard to tell exactly what info he was getting from his eyes. He also did not track visually in a normal manner, so was not following things that moved with his eyes. Although it was an awful thing to learn, it explained so much about B's behaviour (or sometimes, lack of behaviour- like his inability to recognise people) that I had no trouble accepting it. Neither the district nor our insurance would help us pay for the $100-a-week sessions that B would need to train his brain & eyes to function properly, but there was no question that we would do it. I think what scared me the most was the prospect that B would never read. It certainly explained his disinterest in drawing, colouring, or crafts of any kind, & certainly affected his fine-motor abilities in that he had no interest in doing much fine-motor stuff at all, except for legos, but he always needed help finding the pieces & with the instructions. It also explained part of the reason that he couldn't catch a ball, since he couldn't track it. We began weekly therapy sessions with Dr. C the following week. It was great that the office was also very near our home & B's school, & the rest of the staff was so nice that I transferred to Dr. C's partner, & husband, who handled the adult eye care. I sat in for every therapy session & Dr. C was not shy about giving me lists of equipment he'd need at home for the follow-through we were expected to do with him. He soon had a white board on his wall & a ball hanging from the ceiling on a string, all for home exercises. C made him a balance board, too, which he used when he learned the white board activities & needed further challenge. The therapy was very tough. I never ceased to be amazed by Dr. C's ability to get B to co-operate, or to salvage something from a really disastrous session when B was just tired of the whole thing...

Back to school... the plusses of B's school were: the teachers knew him & many of them had been with us on our "journey of discovery". We really loved the staff. It was very close to our home. B had been there for 1 1/2 years, so there were fewer transition issues. Two teachers plus an aide to a class of 24 kids- pretty good ratio to our minds. There were minuses as well: over half the class was dropped-off at 7:30 am for pre-care & picked-up at 5:00 pm (two hours after school let out) since their parents worked full time. B's hours were 8:30 to 3:00. This seemed to self-select for a class of very emotionally needy kids, & no matter how wonderful the teachers were (& they were!) some of these kids had serious issues. The other main difficulty was that our school district had never provided on-site services for special-ed children attending this school. They were considering busing B to the closest neighbourhood school 3x a week for OT & PT! We found out who we needed to talk to about this & explained our concerns. We even asked a college friend of C's, recently relocated to our area & practicing educational law, what the legal ramifications of the situation were, but they were fuzzy at best... I still feel a deep sense of indebtedness to the compassionate woman, head of physical services for the district, who finally called me & told me that she "felt it would not be in B's best interests to bus him to another school" & made sure B got his services on-site. I have thanked her on every occasion I've met her. Not only did B get his on-site services, but a precedent was set for all other kids from our district to receive on-site services at this school, & the school's director was absolutely elated when she heard the news. :)

So, after many hurdles jumped, B began getting OT & PT in October of 2001. His first OT was fabulous, a warm & obviously skilled person. His first PT was less skilled & didn't mesh well with B, & was our first lesson on how important experience & persistence would be when dealing with him :) The PT was also suffering from an overload & turned his case over to a much more relaxed person after just a few weeks, so we were pleased all-around. Because they were not based in trhe school, both his OT & PT suggested that one of their 3 weekly sessions take place at home. That way we could learn to follow-up on his therapy. We were more than pleased to do this. My first job was as a PT aide (after 4 years of volunteering with developmentally disabled kids), so it was validating for me to "talk shop" & be recognised for the skills I already had. I really enjoyed learning what activities & games would be therapeutic for B. Having stuffed all of my arts' n craftiness away for so long (as far as it concerned B) I was raring to go :) Getting B used to therapy sessions was not easy, particularly PT because he didn't like being challenged physically. Also, school really exhausted him, so he wasn't always at his best after school (this was also a factor in his visual therapy sessions), but in the end I think we all benefited from the home sessions very much. School-wise, B had a lot of social challenges. He has never liked being required to join into groups or asked to write or draw pictures, so he needed a lot of behavioural support, although nothing so extreme as to require an aide, just a lot of brain-storming & consistant expectations between home & school. He had not established a dominant hand, so, after consulting us, B's OT decided to train him to be right-handed (it gave left-handed me a pang, but he's really still quite ambidextrous, so it's ok :) So he had all of these people telling him (gently) which hand to write & eat with! On top of it all, there was the social dysfunction in his classroom. B didn't like playing with the boys at all. They were far too aggressive for him & someone was always getting bopped, no matter how much supervision there was (having observed & taught in that class, I do not blame the teachers- they really did their best). Another problem was that there was a sharp gender divide among the kids in this group, so it wasn't "ok" for boys to play with girls. Arrgh!! Again, the teachers really worked hard on this issue, but there were some very strong messages that these kids were getting, & they were not interested in being diverted :( And then... well, B has a tail, you see. He's got a long, blond (he's still blond, at nearly 10) rat-tail that he's had forever- it's actually baby-curls at the bottom. So, of course, the kids made an issue of it, & the teachers worked very hard to re-educate the other kids about what makes a girl a girl & a boy a boy. Sigh. We agonised over it & finally decided that we were all (B included) too attached to B's tail to let this situation get to us, & it did go away finally, & maybe some of those kids learned something- I don't know. But I'm glad we kept it because it's one of the things that kids find "cool" about B these days & sometimes breaks the ice when he's meeting other kids. Pretty handy for a kid on the spectrum...

Sometime around November of that year, B began whacking himself in the stomach really hard. We had seen all sorts of interesting behaviours from our kid- massive tantrums that included trashing his room, you name it (& we found ways to deal with them, thanks to the One, Two, Three Magic book recommended by a schoolteacher friend from church)- but B had never exhibited self-injurious behaviours like this, & nothing we did made a bit of difference. I asked my therapist if she knew of a good child psychologist (boy, did she :), & she recommended Dr. M, whom she had been in practise with before it split into adult- & child-oriented offices. We made an appointment to see him in January of 2002 & from the first visit, he became one of our primary supports & resources for helping B. He explained that the whacking behaviour was perseverative, a word I'd only heard & behaviour I'd only seen in connexion with mental retardation, & so I wasn't identifying it in the context of my kid. He explained that perseveration is a purely neural process, with no thought behind it at all, so needs to be treated in a non-cognitive manner. This is when we began the "ball therapy" I've mentioned in earlier posts. In order to retrain B's brain not to whack, we started throwing balls at him & encouraging him to toss them back, in essence, the opposite action from whacking himself. I originally bought little koosh-type balls, but it turned-out that B couldn't see them because they were too small to catch his attention (thanks to what we'd learned from Dr. C, I twigged pretty quickly to the problem). So I bought a bunch of smallish, inflatable beach balls & scattered them around the house. School wasn't seeing much of this behaviour (Dr. M explained it as B's social "game face" preventing him from doing it in public, & mentioned that it was pretty impressive that he had so much control) so we didn't need to send any balls to school (I can only imagine the chaos if we had :). Within a few weeks we saw a marked decrease in the whacking behaviour, with the bonus that B thought all the ball throwing was hysterically funny. What we did see was the perseverative behaviour mutate over time, to other behviours like touching something, or holding things in his hands. Looking back, with the knowledge we have now, I'm wondering if it wasn't the stress of school that triggered the perseverative behaviours in the first place. They certainly became a consistant part of his picture only after he started full-time school.

I think it was late-ish winter of 2002 when Dr. C very gently, almost tentatively, mentioned that B seemed very similar to some of her other patients with Aspergers Syndrome. She wouldn't have known, of course, that I'd been wondering the same thing since B was 18 months old, so I thanked her for the insight & decided to ask Dr. M what he thought. C & I asked him at B's next appointment & he pretty much confirmed what Dr. C had said. It was interesting to me that they both had waited to say anything to us about their observations, perhaps to get a sense of how we would take such information. I believe that so many parents freak out when they hear this sort of thing about their kids, that both of these very skilled people have learned to be careful of how & when they broach the subject. Although we'd prefer to hear differently of course, neither C nor I has ever felt that B's dianoses are reflections on, or value judgements of, our child or us. All we want to do is make it possible for B to make the most of his life. So, on Dr. M's recommendation, we began the process of having B evaluated by a neurologist. The process was quite long- at least, for getting into the most highly-recommended centre in town :) Since C practises out of the university, we are most comfortable dealing with university doctors, & from talking to other parents I think we did take the best route. It took 3 months to get in to see the doctor (we saw her in mid-July), but she was fabulous. She was skilled, relaxed, & very interested in B (which usually does not bode well, from a certain point of view, but can be validating, too :) She told us that, although B had characteristics ranging from Tourettes to non-verbal learning disability (which did not have a DSM description or number at the time), she felt that the best diagnostic match was Aspergers Syndrome. She noted B's anxiety (which isn't something we worried much about at the time) & offered medicine, but I asked if we couldn't try an alternative approach, so she gave me a packet of articles on herbal treatments that had been studied in kids with Aspergers. She also said that, although B probably wouldn't need to see her again she would be happy to assist us by email any time we had questions or concerns (!). After we got home, we called our good friend Paula, whose son had been diagnosed with Aspergers before B was born. She was the only person we knew personally with a kid with AS, & we had observed her journey & knew she would be able to advise us & "welcome us to the club" :)

Back to kindergarten... Spring of 2002 saw us looking for next-year's school for B. We had pretty much decided that we wanted him at Cobblestone, where he'd been accepted for kindergarten (before he had any recognised problems, though...). In the midst of the end-of-school-year activities, we faced our first major family loss when my stepfather, B's beloved grampie, collapsed while he & mom were at their condo in Florida, & passed away within the week. We told B that grampie was dying, to prepare him, & were amazed that his thoughts were only for grammie. He fell asleep that night crying, saying "poor grammie, poor grammie" over & over. Even now, almost 4 years later, he'll tell you that he was worried about what grammie would do without grampie. When my mom got home, I spent nights & parts of the days with her, making funeral arrangements, getting a start on the notes to be sent to friends & family, & then tried to keep my own home together- getting B to & from school, making sure there were meals for C & B (there was so much food sent to my mom, they'd just come over to her house to eat). After the funeral, I collapsed with pneumonia & realised that I wasn't going to be able to live two lives...

In early June B & I went to Cobblestone to re-interview & sit-in on one of the K-1 classes. It didn't go very well. The teacher had recently lost her own father & wasn't actually supposed to be at school that day. She was visibly on-edge, & though I tried to be empathetic, I was worried that B's behaviour in this strange group of kids was not going to endear him to her... & I was right. The school's director (now retired) told me that they weren't sure they had "room" for another special ed. kid, since they try to balance their population so that they are not overwhelmed by special needs kids. I was very taken-aback, plus felt very frightened at the thought of trying to find another school for B, when this one seemed perfect for him. Cobblestone emphasises individual learning styles & small class sizes. With a bright kid such as B is, no matter what is difficulties may be, I was conviced that he would have best chance of a quality education at Cobblestone. We are lucky that Paula teaches at Cobblestone- although I'm not sure how hard she had to push for B to be accepted, I know she spoke up for us. Not only did we finally hear that he had been accepted, but we found out that she'd be his teacher the following year. I actually cried when I found out. The transition to a new school was not going to be easy for B or me (I had grown terribly attached to the folks at B's old school) & to know that a good friend, skilled teacher, & experienced parent of a child with AS was going to be B's first grade teacher (at our first-choice school) was a true gift.

Looking back on B's kindergarten year, I'm amazed by the transitions we went through as a family. Before kindergarten, we began the journey of learning what B's developmental difficulties were, & B had only been in preschool 3 half-days a week. After kindergarted started, he was in school 5 days a week from 8:30 to 3:00, with after-school therapy sessions 3 days a week. We started seeing B's psychologist every other week in January of that year, & were supplementing his therapies at home. We were able to do this in the context of family life, though, so it doesn't all feel as disruptive as it looks on "paper". We could see B making progress-during this year, B created his first multi-coloured (he previously preferred monochrome pictures, mostly scribbles), titled (by him) drawing & I have it framed on my sewing room wall. It represents such a triumph & turning-point for him, the prolific teller of tales & imagineer of strange lands... I can see the concerted effort of our newly-expanded "village" reflected in that drawing & feel so glad to have had them as a part of our lives. I hope they know how much of a difference they made to B & us, since only Dr. M is still part of the team these days. It's amazing how much easier it is to deal with diversity when you feel you're on the right track, though, & that's where we were.