The Non-Neuro-Typical Lonesome Blues
My blood pressure used to be on the low side. Any time I saw a new doctor, they mentioned it as a concern. (I’m talking 100 over 56, maybe 60.) But then I had kids. I would add “LOL” because I’m pretty sure I’m not alone in this change of medical tendency … but I don’t feel like laughing, out loud or otherwise. My younger son has Down syndrome. Since he has been in the school system, my blood pressure rests somewhere around 140 over 106 on a regular basis. “It’s borderline,” the doctors tell me, “just a little on the high side” – but they don’t know what it used to be, or what this kind of increase means.
It comes from having to be battle-ready at any moment.
Armed and steeled for another polite conversation in which I remind my interlocutor that my son has the right to – you name it. Medical treatment. Participation in summer camps. Admission to VBS. And, and this is the hardest one for me to understand, an education. I have never had to fight so hard, so frequently, just to ensure my kid can go to school.
Being the parent of a special needs child means always being on the alert. It means carrying official paperwork and having arguments at the ready for the times when people whose jobs decide your child’s educational or medical care try to skirt the laws and say they “can’t” do A-B-C because of X-Y-Z. It means spending late nights researching federal and state law around special-needs education so you have the retorts at the ready when people tell you “oh we can’t do that.” It means saying, firmly and repeatedly, “you are required to do that,” and citing codes. It means knowing which email addresses you need to CC when the person who should respond to your request for assistance does not, and knowing when to hit that “CC/BCC” option in Gmail.
We got fed up with our district interpreting our son’s IEP recommendation of “30 minutes twice a week” for speech and occupational therapies as “30 minutes once a month, sometimes combined into one session.” Twice now we have requested that the district provide him with a one-on-one aide for the classroom. And twice the district has said flat-out that they will not provide a personal aide. So we moved him to a private school, an inclusive environment – another request EBR had denied repeatedly – and have been lobbying for 18 months to get services set up for him at his new school. Let me sum up briefly: the people responsible for my child’s learning and wellbeing at school have refused to comply. Finally, when the school and I had both received the run-around about establishing services for him and the other ESS students at the school, I emailed the director of ESS, along with the school principal, the head of school, and the superintendent.
Surprise, surprise — we got an email back that same day.
Is that what it takes? Why? Why can’t we do better by the kiddos who need a different approach to educational environments? Who want to learn and grow and discover and challenge themselves and *do*, but whom an underfunded district in a devastatingly underfunded state has decided aren’t worth an immediate response to their needs?
Being the parent of a special-needs child makes you a special-needs parent. People in administrative positions learn to field your direct requests with maddening diplomacy. You learn to recognize when you’re getting the run-around, and stiffen your spine to call them on it. You grow to understand that at some point you’re going to have to threaten to bring in a lawyer; but you also have to balance exactly how to leverage that decision, and decide which hills are worth dying on.
Most recently, our son has been acting out at school.
He has a severe speech delay; communication with his peers is a challenge. They don’t “get” him, so they turn their backs and walk away. And this year, for the first perceptible time, he is aware of it, and it makes him angry – frustrated – sad. His feelings are hurt on the regular. So he has been running off — “eloping” is the term now — and leaving the school building for the playground or field or parking lot (!), and we have had to leave work and go pick him up multiple times. I’ve been calling therapy agencies. He needs an ABA therapist who can be with him as a one-on-one tech during the school day. But there is a shortage of those aides in this area, and the kids who get them more easily have more severe diagnoses.
Last month I spoke with an intake administrator at one of the major therapy providers in this area. The conversation felt positive and promising. We talked about concerning behavior patterns, therapy needs, medical history. The history of my pregnancy with him and how many weeks along I was when he was born. And she said, “I’m putting this paperwork through, and we’ll get back to you next week.”
Next week came and went. The following week too. And in the meantime, I cancelled classes I was scheduled to teach and went to his school as his “aide.” I stayed with him, 8-3:30, 5 days in a row, and watched him be excluded and ignored and separated and dismissed in his classroom setting. And not just him. I watched this happen to several other students as well. Watched them go from indignation to frustration to longing, and begin acting out: doing cartwheels across the class floor to get their teacher’s attention, whining the teacher’s name repeatedly, crying, fighting with other students, getting up and leaving the classroom without permission, without notice. These children are Neurotypical — when they returned to the classroom environment, the teacher reprimanded them, sat them down, and discussed why their behaviour was the problem.
My child is not Neurotypical.
His behaviour is only addressed through yelling, strong discipline, and penalising moves that remove his participation in community activities like recess, games, or even sitting with his friends at lunch. He is maybe the low-hanging fruit: easy to exclude.
This is a separate problem, and I am working with the school to deal with it. But the bigger problem is that there is no structure for students who are non-Neurotypical, when they fall outside of one particular diagnostic classification. My son does not have autism. He has Down syndrome. And that means he has developmental delays – speech, behavior, and intellectual processing. He needs assistance to be educated in a fair and accessible way. He is entitled to this by both federal and state law. But he is not receiving it.
We now face the decision of keeping him in a school where he’ll receive the therapies he needs at the frequency he needs them but get punished for acting out because he has no personal attention; or else send him back to a self-contained classroom, but with therapy at one fourth of the amount he has been documented to need.
I am exhausted. I can only imagine how he feels. It should not be this hard to make sure that all children are taken care of and provided with the educational, medical, social, and therapeutic resources which they have a right to receive.
