10 unhinged things I did to try to keep my disabled child in school

For every woman who has stayed up until two in the morning reading the Human Rights Code with a highlighter, looking for the sentence that will save her child. For every mother who has rehearsed her opening in the shower, workshopped her tone in the car, changed her shirt three times, taken half a beta blocker, and walked into a meeting carrying a tray of food she made at six a.m. for people with the power to decide whether her disabled child can keep attending school…

I love you and I see you and you need to know that you are trying too hard.

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The acts of desperation

What follows is an incomplete compendium of desperate acts I completed because I love my children. None of them worked.

1. I brought a charcuterie plate to the meeting about whether my son could still go to school

I am an academic feminist and a professional consultant. I have feminist books on every surface in my house. I am also a vegetarian.

And yet, when my disabled child’s continued access to public education was on the line, I arranged meat and figs and fancy cheese on a wooden board, and I carried it into a room full of administrators, because at some level I had correctly clocked that my child’s rights were going to be rationed according to how hospitable I was able to make myself.

His hours were still reduced.

2. I prepared for the meeting like I was going to trial

I read the Human Rights Code at midnight. I read tribunal decisions. I read the School Act, the Ministerial Orders, the district’s own policy manual. A thousand pages of law in my head, because I was going to prove my son had a right to be at school.

That was not the conversation they were going to have with me. In one meeting, while I was describing the harm school was doing to him, a counsellor asked, why would you keep sending your child to school, if you thought it was harming him? Then ten people waited for my answer.

Nobody said child services. Nobody had to.

I had prepared to defend his rights. They had prepared to question my judgement.

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3. I practised my lines in the shower for days

I thought I might be less stressed if I wrote my script in advance. I rehearsed the tones — firm but collaborative, informed but deferential, concerned but regulated. I workshopped the phrase I would like to understand because I need to understand sounded too demanding and could you help me understand sounded too supplicating. I had a backup version for each sentence in case the VP opened with something unexpected.

I was an autistic woman preparing to perform neurotypical fluency.

The meeting went somewhere my scripts had not. I kept trying to route back to my lines and they kept not fitting, and I kept deploying them anyway, and they landed weird and cringey and disjointed, like I was reading cue cards at a conversation that had moved three topics over.

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4. I wore the power suit

I skipped the sweats and put on a pinstriped blazer I had last worn before the twins. It did not button anymore. The shirt underneath pulled across my post-pregnancy middle in a way I had chosen to ignore in my own bathroom mirror and then noticed immediately in the parking lot. I had done my makeup in the soft light over my sink, and it looked, in sunlight, like I had applied it with a trowel.

I was doing drag. The way a woman dresses for court.

My clothes were hot and itchy. From the minute I entered the school, I was sweating, and the makeup felt like plastic on my skin. When my eyes teared, my mascara ran.

And still, nothing was accomplished at the meeting.

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5. The worse things got, the harder I tried to be agreeable

Harm at school is predictable. Parents walk in and explain their child’s needs. The school takes a wait and see approach. The child becomes more and more dysregulated over weeks. Eventually there is an incident. Everyone in kindergarten is traumatised. The teacher is traumatised. The child is traumatised. The parents are traumatised. Everyone could see it coming. Nobody chose to prevent it.

We walked into the follow-up meeting with cookies and collaborative tone, while the room treated us like we were undesirables. I kept trying to explain — see, this is why he needs support — and they kept looking at me like I was an alien.

The more distant they became, the harder I tried to ingratiate us back into their good graces.

I was auditioning to keep my child enrolled in the school that had just produced the crisis. I should have been raging. I should have been shaming them. Instead I was offering them snacks.

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6. I answered their questions

I answered all their questions like I was on trial. I explained him. I clarified what happened. I walked them through his history. I referenced what I had read. I demonstrated balance, fairness, a collaborative orientation. I responded in real time to shifting language — partial schedule, safety, best interest, readiness — and I felt the ground move slightly under my feet with each phrase, and I kept talking, because stopping felt like losing.

This is the verification trap. The institution generates a question. You generate an answer. While you are generating the answer, they are generating the next question. Nothing binding happens. No decisions are recorded. The meeting is a conveyor belt and your cognitive labour is the thing on it.

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7. I accepted their homework

Can you get us an updated letter from his paediatrician? Yes. Can you follow up with the OT about her recommendations? Yes. Can you let us know when you’ve spoken to him about expectations? Yes.

None of that was legally required. None of it was mine to do. The Code does not require a mother to produce a paediatrician’s letter in order for her disabled child to attend school. The Code requires the school to accommodate. But the school had discovered, years ago, that if it framed every obligation as a task for me to complete, I would complete it, and the obligation would quietly migrate from their column to mine.

I took the homework home. I did the homework. Nothing changed.

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8. I thanked them

At the end of the meeting in which my child’s hours were reduced, at the end of the meeting in which the school’s failure to accommodate was reframed as my son’s failure to be ready, I thanked them for their time. I shook hands. I said I really appreciate everyone coming together on this. I meant it in the way you mean things when you have been surviving a situation by performing gratitude for its continuation.

Not, thanks for ruining my life by breaking the law!

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9. I went home and recorded the meeting from memory

I wrote down every exchange I could reconstruct. I flagged every place the language had shifted. I drafted a follow-up email summarising my understanding of what had been agreed. I sent it at eleven-seventeen p.m. with a professional sign-off. I asked them to correct anything I had misremembered.

They did not respond. They never respond to the summary email.

Also, you can record meetings and easily send solid summary emails.

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10. I did not cry in the meeting, even though I wanted to

I swallowed tears. I kept my voice level. I did the box breathing thing — smell the roses, blow out the candles. I held the tears down because I had learned, somewhere, that a crying mother is a dismissible mother, that tears would be used against me, that composure was the price of being taken seriously.

What I didn’t understand at the time is that the institution is counting on that. When I stay composed, it becomes part of the record. It reads as evidence that the situation was tolerable, manageable, within bounds. It makes it easier on them emotionally to implement decisions that are ethically wrong.

A crying mother in an IEP meeting is the correct emotional response to what is happening in the room. Refusing to cry has been a subsidy I’ve been paying to a system that is harming my child.

Next time the tears come, I will let them. Accurately. The situation is worth crying about, and the record should reflect that.

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Stop mortgaging your nervous system

You don’t need snacks to be heard. All the dressing up and rehearsing and performing some kind of professional advocate role is exactly what they want in a system that’s designed to exhaust. It keeps you busy, keeps you compliant, and turns your time and energy into the thing that fills the gaps they’re responsible for.

I played their games and tried to be agreeable, collaborative, a contributor, and friendly. What I got was delay, more requests, and a slow bleed of time while my child missed school and the process kept moving as if everything was reasonable. The system is designed for denial—no comes easy, yes comes at a cost, and that cost is yours.

I’m not doing that anymore. When I have to go to a meeting, I go as I am. Fewer words. No extras. I don’t take on work that belongs to them, and I don’t stay past the point where anything is actually happening. I’m not there to make it comfortable or smooth or collaborative if none of that is real.

From now on, I’m going to Slack off and see if I succeed.