Bean. Hiding Hat, Heavy Blanket. Happy.
On Wednesday, we had the triennial Eligibility Meeting with the school district for Bean’s upcoming IEP. For those not as saturated in Special Education speak and acronyms as we are, this means every three years, an entire team tests and reassesses your kid to determine if there is continuing need based on disability for and Individual Education Plan. The Eligibility Meeting is a big deal- present will be your child’s teachers (regular classroom – CEd, special education -SpEd, and autism specialist – AS), the school administrator (usually the principal and vice-principal), a district social worker, a psychologist, the district autism liaison, the district speech and language pathologist – SLP, and the district special education coordinator. Yeah, it’s a big table, and the next three years of your child’s education is contingent on what those reports find.
This is the meeting that sets my emotions and fears on edge. IEP’s are the nuts and bolts of how we’re going to help the kid- the Eligibility Meeting is a panel of experts who have been testing and observing your kid, who have statistics, and percentages and recommendations, all laid bare on multi-page black and white stapled and collated reports. On one had, you want to hear how good your child is doing, and maybe— just maybe— they won’t need services anymore. On the other— it’s terrifying to imagine that support net being taken from your child, if the team sees things differently than you do as a parent.
I wasn’t really worried about Bean’s eligibility. We’re now nine-plus years into this journey, and while he’s doing well in so many areas, autism never goes away. Autism isn’t fixed or cured. Ever.
Understanding this academically, knowing this is a fact physiologically and medically, spending hours and hours in SpEd classes at upper college levels, being informed and well-read and intellectually understanding this concept… doesn’t prepare you for the gut-punch of reality.
Bean has autism. He was diagnosed at two and a half, and immediately started a preschool program with intense early intervention, occupational and physical therapy. He went to that school for children with autism for three years, and was then mainstreamed into a typical classroom with an aide. He’s considered a profound success of early intervention and the pathways that intervention therapy can create in young, plastic brains.
The arcs of his scores and the graphs and bell curves of his mind haven’t changed. Of course he’s more mature now, and his language skills, motor coordination and ability to express himself have all matured with him… but adjusted for his age, the reports continue to tell the same story. He’s brilliant— he scored a perfect 100% on the standardized Virginia state test, and his IQ is…high. But his ability to process sensory information, his ability to communicate and reciprocate, his ability to read social cues and navigate interpersonal relations and cope with emotions are still reproductions of the same bell curves.
Even being well educated, I had somehow hoped, just maybe, there would be a change. This is the bitter part. I know better. I know there isn’t anything wrong with him, and this is just how his brain came. And yet, there in the enormous meeting room, with charts projected on the overhead screen and with a team of teachers and specialists, hot tears sprang to my eyes, and gave lie to the notion that I had fully dealt with this all already. Hope springs eternal, perhaps, but without even knowing it, I had been hoping for the wrong thing. And I know better.
Don’t get me wrong. There is tremendous reason to hope. But the hope lies in educating others about autism. The hope lies in a team of specialists and educators who understand this, and who are willing to go to heroic lengths to make life as good as it can be for a little boy with a different way of interacting with the world. Hope lies in the fact that a boy with autism is understood now to be brilliant, and not a throw-away child. Hope lies in the general growing awareness that autism isn’t a discipline problem or caused by a vaccine or something a mother did while pregnant. Hope lies is there being colleges and companies who see the value in the autistic brain and what it can accomplish. Hope lies in Bean’s bright future, not in spite of his autism, but, just perhaps, because of it.
He doesn’t need to be anything beyond who and what he is. The tears? Those were about me, and my own human fragility and foibles. And that doesn’t help my kid at all. Thank you to all the people out there who devote their lives and educations to Special Education programs and to loving, teaching, and supporting children like Bean.
Wednesday night, he sat first-cello in his 5th grade orchestra concert. He was terrified beforehand, faced his fears, and was jubilant afterwards. Then he came home and put on his silencing ear-muffs, hiding-hat, and heavy blanket. And life goes on.