Self Advocacy, Autism, and School

I picked up my kids early on Friday so they could see the child psychologist. It was my daughter’s first official visit, her initial evaluation yielded ADHD but the rest of it is stuff she herself wants to work on, and it looks to be trauma related at first glance. She has bad dreams, wants to be kinder, and needs help figuring out when to draw the line with her friends and siblings-she knows she can be a bit of an instigator if not a bully.

But when it was Oldest Son’s turn it got real. He told us about school that day, how when he got to his classroom he had to wait for the teacher to get there and so he picked up a book to read at his desk.

He reads incessantly, you know. It’s a coping thing, he distracts himself with it and it’s the most benign behaviour issue he has ever had- well, except for when Middle Kid pulled him out of the way of a moving car when Oldest was reading while walking through a parking lot and starting wandering off track. But he can’t hear you when he is reading. The teacher hates it. He yells Oldest’s name over and over to get his attention and on the fourth or so attempt Oldest Son might hear.

The special ed teacher has been sending me emails this year. Telling me things like my son is a black and white thinker, my son argues, my son lacks social skills.

Yes, I always reply. Yes, he is autistic. Then I go into solutions. These are all in his IEP, anyway, but the entire special ed team has turned over since last year and I feel like the new team might not understand Oldest in particular and autism in general.

I have asked them to tap him on the shoulder instead of yelling at him. Oldest is embarrassed by the yelling, he is already different and his differences are starting to bother him. He even shushed me for speaking Persian in a parking lot the other day. So I started singing in Turkish. I am not good at being shushed anymore. I digress. I was going to talk to the teacher about all this at conferences, later this week.

So back to the reading. Oldest is reading, teacher comes in and yells his name and Oldest does not hear. So the teacher goes up to him and asks for the book and Oldest hands it over. Teacher then chucks the book across the room. This is not a school book. This is my son’s personal book from home. His own property.

My son is telling this story and he is sobbing. He already has a cold and it is Friday and he has been maintaining all week in this neurotypical world and I am immensely proud of him and sorry that I rushed him into the car earlier when he was trying to tell me something, probably this. I am not good at talking outside in 10 below, to be fair. But he has been trying to advocate for himself and has been accused of arguing, he has been trying to tell me what happened, and I have rushed him and told him “later”, and here he is in the psychologist office telling his story in a very linear manner, very straightforward, while sobbing. Good for him.

He will know I listened next Tuesday, when he walks into his new classroom with his new teacher.

So this was Friday, though, and I can’t do anything with administration after school on Friday. But I can go get his book back for him. I dropped the boys off at home as Oldest Son did not want to go back in the class and I took the Youngest with me to get the book. We knew it was thrown under a chair and that was all we knew about how to find it. Youngest was confident she could.

Guess who was there?

It was his teacher. I told him Oldest forgot his book, which was now on his desk and I saw his wiggle chair and asked if it helped and he said yes but that the books were a problem. I said “Really, he uses them to self regulate.” and tried to back out of there. But my daughter, my fearless bossy curious daughter went up to him and said “Oldest said you threw a book.” and teacher said “He wouldn’t stop reading!” and turns to me and says “All the other kids were sitting ready to learn…” and I stopped listening and protectively guided my daughter out of the room and told him to have a good weekend.

Because there is no other autistic kid in the classroom.

All the other kids. All the other kids are not working with IEPs and living with electrical storms in their brains and trying to navigate life without social cues. I knew right then that my son wasn’t going to ever be understood or empathized with in that classroom. All the other kids, indeed, are not like my son.

Look, I know the book throwing is reason enough. I am an abuse survivor and so is Oldest. I know that was assault by proxy, violence on a belonging implies violence on the owner. I know. But I wasn’t ready to condemn a person based on temper, because I have one of my own. I can throw shit and get away with it, maybe. But this is a professional who works with children. He can’t be a beast about anything. I shouldn’t be excusing people, it’s a bad habit, but I am sure I am far from the only victim who does this habitually.

So I didn’t sleep well on Friday. I talked to a few moms, we agreed, as does the psychologist, that a classroom change is best. Despite the disruption and stress it causes my son at least he won’t feel unsafe, singled out, or like his teacher hates him. I can’t imagine a new place is more stressful than those feelings.

I was ready to go in there and get pissed off in a couple of languages, I had a lot of scenarios running through my head and none of them made me look anywhere close to sane. But it didn’t turn out that way. I put on a suit and threw the IEP copy from my filing cabinet into a soft sided briefcase. I got the director to meet with me nearly immediately and I wasn’t forceful or alarming. I managed to be pleasant, a useful survival skill. She called in the special ed director after ten minutes, and a half hour later we were decided and I only had to say “violence” one time.

I just know I am grateful for having a room full of women who could see how the IEP was not being followed and agree that we could do better and a change was in order.
I was planning for a fight and I got consensus.

I hear horror stories all the time from other parents of autistic kids. I can’t tell Oldest until the last day of the week that he is changing classrooms. I hope he knows he did this for himself, that his voice was heard. I wish it were different but he will have to be making choices to protect himself over and over from those who lack empathy. Funny how neurotypicals claim it’s the autistics who haven’t got any.

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Reading Through My Own Medical History

Everything describes autism in my childhood evaluations. But autism was not diagnosed then. What a bunch of bullshit I had to go through. I just can’t let these things happen to my son.

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Father’s Day Wishes

For all the mothers out there who endured/endure abuse from the fathers of their children-I stand with you on this day.

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Middle Son

My middle child has probably had the most visibly rough time of it. He became his father’s favorite when he showed a willingness to engage in violence, a learned behaviour that it took four years for him to unlearn.

He has a touch of agoraphobia. He does not like to be out of the house more than two hours.

He has so much anxiety that he is always correcting everyone, arguing about the right way to say or do or even be this or that. He probably exhausts himself with it. I tell him every day to leave it alone but he has yet to learn how.

He is very discerning, he figured out the guy behind us is on drugs without hearing a word about it from me.

He is addicted to his Xbox, and cried today because his friend was not home and could not come over to play it with him.

He can’t eat dairy because it makes him angry. I keep him on medicine so that he doesn’t hurt other people with his initial angry impulses. It works well, but I have to constantly battle the insurance companies to get his prescription filled.

He would walk around sucking on lemons and eating raw onion when he was a baby. Not unusual in his father’s culture, but he gets a huge kick out of hearing about it now.

Today he began to throw a fit at the zoo (we had been there a long time) and he stopped himself. I think he has done this once before. I didn’t have to do much to calm him, I just reminded him that kids throwing fits get grounded and gave him a hug.

But sometimes when I remember that he collects glass sculptures, at eight years old, I feel a wonderment.

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The Neurologist

So telling.

Star In Her Eye

The Neurologist said we had every right to question his advice about seizure medications. He leaned against a paper-covered table, and my husband and I sat in chairs against the wall. Fiona, who was sick with a cold that day, sat in her stroller. “Do you have to follow my recommendations? No,” he said. “You don’t. That’s your right as a parent.”

I was relieved. I’d been hesitant about a particular drug he recommended for Fiona. I wanted to check with the Wolf-Hirschhorn syndrome community and see about other people’s experiences with the drug.

“Let me give you an analogy,” the Neurologist said. Then he told us this story:

He once had a patient who was “profoundly disabled,” he said. She was in a wheelchair. She needed a feeding tube. (There is a way to list these details as facts, and there is a way to list these details as…

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More Than I

Today I picked up my Oldest Son during a downpour. As we left the front door of his friend’s house I held the little umbrella up over his head. He didn’t realize I had one at first, and he was afraid of the rain and of getting his video game controller wet so he was immediately grateful. He looked back and said “What about you, you don’t have one?” Meaning the umbrella. I told him I didn’t need one, I loved him more. He said “More than yourself, you love me? I thought you loved me and you equally.” I laughed at him and hugged him under the umbrella and told him that’s not how it works. He was so surprised.

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The Atheist’s Picnic

One or another of my kids comes home every month talking about hell. Their friends or classmates patiently explain to them that I am going to be going to hell, and that they will, too, if they don’t get it together and believe in x, y, z.

I tried to explain to my kids that this doesn’t work, that you cannot force belief. I asked them to imagine I was full of magic beans instead of blood and bones and etc. The older children got it but the baby couldn’t figure it out. Already the concept of hell is too familiar to her. She can believe that but not magic.

I asked her if it was fair to be in control of a person, their food, their destiny, their every material comfort, and to send them to some horrible place? Like would it be okay if I sent her to her room and told her she could only eat bread? She burst out crying. I have to undo this when she is older. Right now she can’t fathom how ridiculous it is to punish a person for a belief.

Belief is involuntary. Changeable, but involuntary.

I sat the older kids down and explained to them the origins and evolution of the concept of hell in Abrahamic traditions, how it was a valley outside of Jerusalem and etc. Gehennem to Jahannam. I left out the human sacrifice bits, not sure how sound those reports are, anyway. I did impress the smell and the sight of trash burning 24/7 on them, and they understood.

Next week in the city is the Monthly Atheist Picnic, with a playground and etc. I am going to take them just so I can point to the crowd and explain that none of these people believe mommy is going to hell. I hope it comforts them a bit.

I don’t care in what religion they end up, so long as the faith they choose is respectful and empathetic to others, and not just their own.

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