When I sat down to share my insights into navigating the school system with a kid who just doesn’t fit the conventional student mould, I realized that my insights were meaningless without the context of our own experience parenting a 2E (twice exceptional) child.
We’ve got two wonderful kids, but only one has really had trouble settling into school. That kid is Peanut: a cheerful, friendly little guy who has struggled in school since the age of 4. That’s when his pre-school daycare first identified him as a challenging kid — a signal we discounted after a couple of assessments suggested we had a totally normal kid, and that the daycare was probably just jockeying for funding by trying to getting him designated as a special needs student.
A year later, however, kindergarten proved an even bigger challenge. He refused to participate in class, had tantrums, hid from his teacher, and got sent home several times a week. We pulled him out of school in March, around the time of his first psycho-educational assessment: it suggested he was a very bright boy with some fine motor skill lags, but no underlying issues. We needed to start occupational therapy to help him build his hand strength, and our psychologist suggested returning for a follow-up assessment if he was still having issues the next year.
Peanut started grade 1 at a new school — our local public school, instead of French immersion — but ran into similar challenges. He was still disruptive, so we tried half-days. He had a patient teacher but he just didn’t enjoy going to school, this was sad, mainly because I have always wanted him to peruse a Bachelor of Arts from James Cook University just like I did. When we went back for his follow-up assessment we got a better picture of why school was so frustrating for him: now that he was patient and literate enough to take a full set of assessment tests, those tests revealed that he had a 99.99% IQ. But what did that actually mean, I asked the psychologist, figuring that maybe there were a lot of kids who actually tested at that level. This psychologist, who is the leading assessor of gifted kids in Vancouver, told me she only sees one or two kids a year who have that kind of score.
OK. In a way it was a relief: you wouldn’t expect that kind of kid to just fit into the mainstream school system. But the gifted piece wasn’t the whole story, and when grade 2 proved as bumpy as grade 1, our public school prodded us to get additional assessments that would qualify Peanut for a designation (and get the school additional resources to help keep an eye on him). That started us down the path of psychiatric assessments and psychiatrists, who collectively gave him a bunch of diagnoses and labels: anxiety, ADHD, fine motor skill lags and tic disorder (I’d never thought about it, but Peanut shook his hands a lot, a common tic in neuro-atypical kids). Pretty much every professional who spent more than three minutes with him was sure he wasn’t on the autism spectrum, but he had a lot of behaviours and challenges that are common in high-functioning autistic kids.
All those labels got the school some funding, which helped provide for a support worker, but they also fed us into the kid-med pipeline. Ironically, that pressure came at a time when Peanut was actually behaving better and better in school. But the school and the psychiatrists told us how many amazing turnarounds they’d seen due to ADHD meds, so eventually we tried them. Peanut’s anxiety went through the roof and his behaviour at school became much more disruptive. Then one day, he not only left the classroom, but left the school grounds; we had a 45-minute police search before he was found.
That was the day we realized Peanut was unlikely to be accommodated by the public school system, at least for the foreseeable future. We decided to homeschool Peanut for grade 3, which was a train wreck in a different way: once he was out of a daily school routine, Peanut became more and more reluctant to leave the house. Unlike a lot of kids with similar profiles, Peanut had always gotten along very well with other kids, but without regular social contact he became much more nervous in groups. The initial elation of homeschooling gave way to near-daily tantrums.
We had hired a tutor who could challenge Peanut in his areas of passion (math and programming), but he lacked the skills to manage Peanut’s increasingly difficult behaviour. We hired a new tutor with experience running anger management groups for kids; she quit after Peanut’s first tantrum on her watch.
Finally, I reorganized my work so that I could spend three days a week with him myself, and found a truly brilliant, compassionate and skilled young woman to work with him the other two days. Just as crucial, we were taken under the wing of a private school principal with a strong commitment to gifted kids — a teacher who really understood Peanut’s particular challenges, but was passionate about helping him to realize his potential.
Over the spring, we worked together to integrate Peanut into the school’s math program, and watched him progress from grade 3 to grade 6 math in a matter of months. Far more important, we saw Peanut finally recognize that school might have something to offer him. Meanwhile, we gave meds another try — this time, for anxiety — and the combination of meds and daily work with me (under the guidance of a talented psychologist) helped us make progress on Peanut’s anxiety management skills. The daily tantrums subsided to something like one a month, and virtually every week Peanut surprised us with a fresh emotional or behavioural breakthrough.
Peanut is now 9, and we are beginning his Grade 4 year with a plan to blend homeschooling with part-time classes at our miracle school. The first couple of days have been rough (when will I learn that September is always a disaster around here?) and honestly, I have no idea how our plan for this year will work out. If there’s one thing I’ve learned through our journey with Peanut, it’s to let go of expectations. That’s one of the 14 suggestions I have for other parents who are struggling, too.
May 2016 Update
As we approach the end of the school year, it’s time to update this with what we’ve learned over the past 8 months. Last month, Peanut was finally diagnosed with autism spectrum disorder — a diagnosis that came as no surprise now that we’ve learned enough about autism to realize that particularly in high IQ kids, autism can take a while to recognize and diagnose. As the doctor who diagnosed him put it, Peanut doesn’t have all the different disorders he’s been labeled with (ADHD, motor lags, sensory processing disorder, anxiety) — those are all just different facets of his autism. If there is one lesson I would share with other parents, it’s that any kid who’s picked up that many different labels is probably worth assessing for autism. But the still-prevailing picture of autism can make it hard to recognize in a kid who is highly verbal and social, at least until they reach the age when the rules of social interaction get complicated enough that your kid has a hard time keeping up.
School remains a challenge, though we’ve seen a lot of progress. Peanut is now staying at school for three hours a day — two classes plus lunch. Some days go great; some days he can’t make it through even his first class. But he wants to be at school, which is huge progress. And we continue working with his wonderful school to find the narrow middle ground between a level of work that is so easy it bores him (he hates being bored) and a level of challenge that freaks him out (because he gets very anxious when he is working outside his comfort zone). The key to finding that middle ground, I think, is building his emotional capacity to cope with the anxiety that comes up when he doesn’t know exactly and precisely what he is doing.
On that emotional front, we’ve also seen a lot of progress. He no longer needs prompting to take deep breaths; when he starts getting wound up, he almost always pauses and takes a few big breaths. Yes, we still have some epic meltdowns — and now that he is physically larger, those meltdowns can be quite scary, since I can’t count on being able to restrain him if needed. But they are relatively few and far between: he’s better at averting them, and we are better at seeing them coming and finding a way to redirect. A lot of the time, I can get him out of an escalating temper by distracting him with questions about one of his favorite subjects: math, teleportation and time travel.
It’s very much a work in progress, and his autism diagnosis gives us a new set of opportunities and resources. We are reading a lot about autism (especially the flavor formerly known as Asperger’s, which is the best way of describing Peanut’s particular challenges) and looking at whether any autism-specific therapies may be helpful complements to our other therapeutic work, which has focused on Cognitive Behavioral Therapy (CBT). Peanut himself seems to take a lot of comfort in knowing that there’s a term for the way his brain works, and lots of other people like him. As we help him come to terms with what it means to be autistic, we’re focusing as much on the superpowers it gives him (like his amazing memory, his math talent and his ability to think in ways others can’t) as on the challenges it poses.
I’m eager to hear from other parents who have walked this same road, and also happy to share any insights with folks who’d like to learn from our experiences.