Way back when my son C was 3, his nursery teacher suggested we get him evaluated by the DOE (Department of Education). The idea was that DOE would provide services that would help him out, help him physically, mentally, and emotionally. Dave and I were trepidatious, as we always are at the prospect of authoritarian intervention in our lives, but we wanted school to be easier for him, so we went for it.
He started out at 2 ish, with a range of therapists for speech, fine and gross motor skills, and other stuff that I can’t remember. Between one thing and another, every day of his pre pre-school life had therapists and teachers swinging by our apartment to work with him, and each of them had projects and assignments for what we should do with C between their visits. We worked on that, but we also have this idea that C should be provided with time to play in whatever manner he chooses, to be read to, to do home type things like make cookies, eat batter, chill on the couch. I worried that we were not living up to the therapists’ and teacher’s expectations. I worried that, in not living up to those expectations, we were failing C.
When he turned 3, the DOE program transitioned from whatever the early phase was called to CPSE (Committee on Pre-School Education), and we didn’t go with it. The constant appointments had been difficult, and the main issue at the time– speech– had been well mastered by our incredibly communicative, expressive, verbal boy. The way we made the decision to not continue with services was entirely passive. I didn’t fill out the paperwork, I didn’t return the phone call, and in so doing, we let it lapse. It felt like a personal failing to not be able to jump into this whole system and make it work for C, and I knew at the time that my passive refusal of services would feel like a failing, but I shut my eyes tight and did it anyway.
The following fall he started pre-school. We chose a local, Catholic school for a few reasons, chief among them being that we are Catholic and are interested in passing on the opportunity for faith to our son. I know that faith is really hard. Believing every day in a greater love, in God’s love, is practically impossible, and because of this near impossibility I wanted him to know that faith is a real true option. But for a variety of reasons, school proved difficult. He was often sent to The Think-About-It Chair (his teacher’s answer for time out), and was excluded from activities due to his own uncontrollable, emotional out bursts. His teacher, who was very thoughtful and all good things, recommended that C be evaluated for DOE services.
We met with the school guidance counselor, who managed to have everything wrong about our kid, and set up DOE evals. We signed C up for physical and occupational therapy through his health insurance (major shout out to NY’s Child Health Plus program that covers every single thing C has ever needed for a super low premium and no co-pay), and the summer began with us running around to DOE meetings, evaluations with various specialists, physical and occupational therapy appointments, and wondering what would be decided about our son, ourselves, and our ability to help him get what he needs.
The evaluations felt very much like parenting evaluations. Each evaluator would ask the same questions, with emphasis on their particular area of therapy. I would be asked if C could put on his own shoes, and I would look at him and realize I’d never once asked him to. Or if he could brush his own hair, take off his own socks, pour his own cereal, brush his own teeth, wipe his own bottom. Well, I’d never once asked him to try any of those things, and like Mistress Mary in The Secret Garden, he’d never seen any reason to want to do those things for himself.
By September we were back in school with an IEP (individual education plan). We were assigned a SEIT (special education itinerant teacher), a teacher that comes to school and helps him keep his thing together, as well as occupational and physical therapy after school. Even with all that extra stuff, it’s been a tough year. Three afternoons a week are spent in therapy, eight hours a week are spent with his SEIT in class. All these people are great, but it’s alot. C can’t play for long in the school yard after school because we’re running off to therapy, and while his SEIT is lovely, considerate, gentle, and not in the least intrusive, I wonder what it’s like being the only kid in class with an extra grown-up.
Each of the therapists and the SEIT have things they want us to do with C between appointments. From special exercises, to coping mechanisms, to drawing and cutting things, the time we have to hang with C on our own terms, on his own terms, diminishes with each new assignment. While we try to tackle all these things, lots of times we try to enjoy each other instead. We make cookies, we build Lego cities, we play super heroes in the park (hint: I’m the villain). We work on the other stuff too, try to integrate it into all the things we want to do, but I don’t want everything we do to be about what the therapists and teachers want us to do, I want room to parent autonomously. We have our own things that we think are important to emphasize with C, and even between Dave and I we have differing priorities. If I fall off the planet tomorrow, I want the things I’ve taught my son to be about love, kindness, confidence, self-determination, belief, faith, adventure, telling stories, making up jokes, and games, and marathons of snuggles, not telling him for the umpteenth time to put his heels down while walking– which c’mon, I’ve told him five and a half million times, and he tries his hardest to do it.
Today I met with the head of IEP’s for the public school he’ll most likely be attending next fall (for some reason the process of determining the IEP and finding out which school your kid will be attending are totally different– thanks NYC DOE for being labyrinthine!). Just like with all the other evaluators and providers, the conversation started off with my pregnancy and C’s delivery. He was not to term, he was 37 weeks (felt like a personal failing, even if it was an uncontrollable physical one). We talked about Early Intervention services (that’s what it’s called!) from before he was 3, and why he didn’t continue with services (personal failing). When he learned to crawl, talk, walk, use the facilities. We talked about how he was in pre-school, and how the evaluations for CPSE went. We talked about how he’s doing in school now.
The thing is that when you’re talking to people on how to get services for your kid, and what services to get, you have to emphasize the flaws. You have to go in depth into all the failings and worries, the concerns. You don’t get to sit there and say “my kid is super smart! and bright! and he brings joy into every room! he says hi to people on the street and they look down and smile and say hi back! he diminishes the space between strangers! he has interesting dreams and loves to read! he is imaginative and creative and his vocab is off the charts!” At least not for very long, these meetings don’t run more than like 45 minutes, and you’re there to make your case for services, not to tell them all the reasons why your kid is actually above average in several key areas that might make the evaluator think that he doesn’t need services even though you know he does.
The purpose of these meetings is to point out the flaws, to express what exactly about your kid means that he oughtn’t be part of the general ed program at the school. And while I’ve never been one to advocate for standards or normalcy, it’s hard to go in there over and over and say “here’s why my kid is not normal” without starting to hear “here’s how my kid is less than.” That’s not what I believe, I know that he’s great, terrific, spectacular, capable of leaping b.s. expectations with a single bound, but there’s no way to block out what I hear, and wonder if it’s something I did, somewhere that I’ve personally failed him, and try to figure out where, and how to fix it, without putting too much pressure on myself, or him, or the time we spend together.
It doesn’t matter what words are used to describe “special needs,” or “child with a disability,” both of which terms apply to my son. The connotation is always one of difference in a system that puts the most value on sameness. And as a parent trying to get the right services, emphasizing the difference of your child every time you meet with an educator is trying, it makes you start to see your child, and the time you spend with them, as part of an ongoing, results oriented project, to get them to the next milestone. I hate all these externally imposed expectations.
In a very real way, I’ve always hated that. When I was in elementary school I hated that, I resented the SAT’s for their standardized-ness, I went to a college with no majors, and set out upon a career that is so self-directed as to be arrogant and at times completely anti-social (hi Mom).
Anyway, we’ve embarked down the road toward determining C’s kindergarten IEP, which is through the DOE’s CSE (committee on special education) program. Because he’ll be in public school next year, not Catholic, we will be able to get all the services within the school day. This will at least condense things a little bit so that after school can be reserved for play time, or dance class, or basketball, or park super hero adventures, or laying on his bed, staring at the ceiling, and seeing the wildness of his imagination take shape without any imposed expectations at all.
I kind of wish we were still on vacation.