Thursday, January 19, 2006

History pt. 4- the dominoes begin to fall

B began his second year of preschool when he was just about 4 1/2 years old. He went 3 mornings per week & there were about 22 kids in his class with 2 teachers. Both teachers had been Headstart teachers & were wonderfully personable. B seemed happier there than anywhere else but home & church, so we ticked along in our weekly routine. At this point in his development, B had reached 95th percentile for height, but was not quite 30th for weight (he weighed about 36 lbs. when he began preschool) & I was having to make sure to adjust the elastic on the pants I made for him so he wouldn't crawl out of them. I started making little boxer shorts for him when he potty-trained, just past his 4th birthday, which he preferred to briefs. They were very good face-savers when his pants did slip, because they looked like shorts, really, & I used the brightest, coolest fabrics I could find to make them, so they were fun, too. We had discovered over the summer that B was mildly lactose intolerant, which cleared-up the tummy gas pain he'd had since infancy. It was nice for me that B didn't need a lunch for preschool because he didn't like sandwiches & other easy to pack food. He preferred things like lunchmeat rolls with mustard down the middle & hard-boiled eggs. He disliked really messy foods like pudding & had difficulty putting utensils in his mouth- he'd turn them oddly & seemed not to want them to touch his lips. He used a napkin throughout his meals, wiping his lips rather than licking them. B seemed kind of spacey & didn't always respond when we called him. He still did not enjoy drawing or colouring, but adored playing with his Thomas engines & track. I loved them too :) I would make elabourate lay-outs in his room which he'd play with for hours (as long as I was nearby). We had begun using incentive charting with him the year before to help him give up the binky. He earned James the Red Engine (one of the obnoxious ones which I was less excited about B having...) when he had gone to sleep without bink 10 times. We also used Thomases as rewards for potty-training. I would cut out pictures of the engine being earned & put it at the end of the row of boxes that indicated successful use of the potty, with stickers to check them off. It was a very successful system that we still use today.

The beginning of the journey of discovery that led to B's diagnosis of Asperger's Syndrome began, oddly enough, with sleep apnea. I can't remember exactly when it began, but I do remember laying in bed & listening to the interruptions in his heavy snores (his room is right next to ours), counting the seconds. We'd taken him to the pediatrician to investigate the snoring & he said B's adenoids were enlarged a bit & there was fluid in his ears. He sent us home with Rhinocort nasal spray... which we never successfully got up B's nose. He hated the sensation &, since we have used it successfully as he's gotten older, I suspect that he was just too young for it. By October B's apnea had gotten to 20 seconds long- it was horrible. We had been back to the pediatrician with no success. Finally, C just called him & asked who he'd send his kids to if they needed an Ear-Nose-Throat doctor. Our pediatrician got the clue & referred us to Dr. W. It was November before we got an appointment, & when we went, it turned out that B's adenoids were considerably enlarged & there was so much fluid in his ears that he had a 50% hearing loss, thankfully thought to be temporary. B never complained of pressure in his ears. At the time I thought it was due to his having a very high pain tolerance, since we'd had incidents with B being clinically ill (usually found at regular medical appointments) & never telling us that his throat or ears hurt. This made us feel like really good parents, believe me. On Dr. W's advice we scheduled B to have his adenoids & tonsils removed, plus PE tubes placed in his ears, in early February. We made sure that his teachers were aware of his hearing loss & we kept a close eye on him in public, for safety's sake. In January it became clear that B was no longer really participating at school & spent a good deal of time just laying on comfy pillows. His teachers said they didn't mind this, but thought it would still be good for him to be with the other kids, so we kept him at school. B was weighed during a pre-op visit & I saw that he still weighed 36 lbs- the same as he had in August. It really hit me that he was not thriving, & how much he needed this surgery, even though it was scary for me. We also learned that this time that B had a 70% hearing loss. His surgery was scheduled on my 43rd birthday & it was an outpatient procedure. We got there at 6:00 am, then did all of the hurry-up-and-wait stuff, then the waiting. When Dr. W came out to see us afterward, he told us that things had gone well, although he had a terrible time getting B's tonsils out because chronic tonsillitis had welded them to his throat- we never ever knew that he'd had tonsillitis (another blow to the parent self-esteem). After a few hours recovering, we took B home around 3:00 pm & he immediately asked for a hard-boiled egg with salt (!). He also complained that the fridge was too loud :) We were worried about pain & he wouldn't take the codeine syrup they gave us, so we tried hiding it in various foods- perhaps the reason he won't eat jello to this day. The worst part of the next few days' recovery was the constipation caused by the codeine (sigh).

B went back to school the next week & he certainly seemed a changed boy. He responded when you spoke to him, for one thing! By his 5-year check-up (in April) he was up to 50th percentile for weight. I really enjoyed the change & his teachers did too, since he seemed to pick-up where he'd left off at school & was participating again (as much as he ever did :). However, at the end of May his teachers asked me to come in & meet with them about B. Both teachers were trained in child development & they had been watching him closely. Although he had made great strides since his surgery, he was not catching up in his development as quickly as he should have been, so they asked us to have B's fine-motor co-ordination tested by an Occupational Therapist. I trusted their judgement & got a referral from B's pediatrician. Some backstory is in order here: one of my main interests as a teenager & into my 20's was working with disabled children. I volunteered for many years at the local United Cerebral Palsy centre, working at their summer camp & in the Physical Therapy unit of a local elementary school during the school year as part of my school programme. My senior project in high school (I went to an alternative school, so this was a requirement for graduation) was a case study of a child I knew who had Spina Bifida. So I wasn't really intimidated by the request to take B for testing because I understood what the OT was doing & had the language to understand what she was telling me. I understood, but after the first few sentences I felt myself go into shut-down mode. I worked very hard to keep my ears open, even though my heart was going bye-bye... she told me that B (at 5 years, 2 months old) was functioning at the fine motor level of a 2 1/2 year-old & should be seen by a Physical Therapist as well. She referred me to a PT in their group & I made the appointment on a Wednesday so C could come too. (side note: I just had to take a break typing because I started crying remembering all of this. I can't remember if I cried when it was happening- all I remember was it happening so fast...) C's first comment after the PT appointment was that it's not a good thing when a PT tells you your kid's running gait is "interesting". The dominoes were really falling now... the PT's report was that B's gross motor development was severly delayed & that he was hypotonic, meaning that he had (& has) low muscle tone. This can be an indicator of many things, including Cerebral Palsy, which was rather chilling. As B was entering kindergarten in the fall, the PT strongly recommended that we apply for services through our school disctict. C remembered a patient of his who works for the special ed. department in our district, so he called her the same day & she explained what we had to do. First, we had to get a school ID number from our neighbourhood school, which turned out to be our first stumbling block, since it was summertime & the secretary there told him to come back in September (which turns out to be illegal in our state, since they aren't allowed to deny a request like this, but what the heck...). C was persistent, got the number, & we made an official request for testing. This meant running all over the city that summer because that's how they do things when school's out. The people we saw, from OT's, psychologists, to social workers, were uniformly kind & skilled. The OT who tested B took me aside to tell me that she strongly suspected that B had visual/motor involvement, but that it was such a new field the city did not like OT's to address it in the testing. She gave me a name to contact if I wanted to follow-up. (Duh!) We had taken B to an Opthamalogist as part of the recommended work-up (a truly horrific experience, since I had to hold B down for the eye drops part of the exam) & nothing out of the ordinary was found. Dr. C, who was the visual/motor specialist, found that B did not have binocular convergence, nor did he track objects visually the way he should be. We started therapy with Dr. C the next week & went weekly for the next 1 1/2 years (paying out of pocket because the city didn't cover such services & neither did our insurance) untill B finally achieved normal convergence & tracking.

B's first CSE (Committee on Special Education) was held in September, just after kindergarten started. We had decided to keep B at the same place he'd gone to preschool, which was private & had a state-certified kindergarten, since the teachers had been so supportive during our "voyage of discovery" that summer. One of his preschool teachers moved up to kindergarten level, which was perfect from our point of view. She came to B's CSE & was a great resource for them, since she was one of those who had requested testing in the first place. At the CSE, B was awarded OT & PT services, with a designation of "Orthopedically Impaired". The next hurdle was deciding where B would receive those services, since he wasn't at a public school. The possibility of busing him 3 times a week to another school was batted around (groan!) but sanity prevailed when the head of the district's physical services decided that it wouldn't be in B's best interest to do that. I still send good vibes to that wonderful woman!! Later, the principal of B's school told me that we were the first city district family ever to get on-site services for their child. B's PT & OT providers were great. They met with us & decided that 1 of their weekly sessions (for each of them) would be provided at our house so that we could stay in close contact & learn strategies to use at home. B had never established a hand preference, so we all decided (left-handed me with a pang-) to encourage him to use his right hand. Although I had done most of the running around with B over the summer, C was an interal part of this whole process. Our home OT session was on Wednesdays, so C could learn right along with me. At the same time, B was in school full days now, so there was a lot of adjustment for all of us. Sept. 11, 2001 occurred during the second week of school, & although it has a terrible infamy to many, it also marks the day that I locked my keys in the car while dropping B off at school & had to walk to C's office to get his keys (not terribly far, luckily, but adding another note of surreality to the day). We were off & running onto a very different life-path than we had expected, having started the year with a temporarily deaf child & ended-up with a developmentally disabled one, but B was responding well & we knew it was the right path.


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