Category Archives: Asperger’s

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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Filed under ADHD, ASD, Asperger's, Autism, Bully, Bullying, Child Abuse, Child Psychology, Domestic Abuse, Domestic Violence, IEP, PTSD, SIngle Parenting, Trauma, Uncategorized

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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Birth Control Pills

I have cysts. I have them in the usual place, the ovaries, and also I get them on my skin, where the skin is thin. Behind the ear, in front of the ear, armpits, etc. It’s more annoying than painful. Pain is something I tolerate decently, but if I can avoid the cysts I would rather.

When I was with my abuser I could not get medical care. I was covered for pregnancies only. After the pregnancies they would give me low estrogen pills which I suppose worked well enough. They gave me these because I was breastfeeding and those were supposed to be tolerated well by the baby and not interfere with breastfeeding. So I was effectively pregnant in some form or another for about five years.

I never lost pregnancy weight. I had my pregnancies pretty close together. Two of my kids are a grade apart and the baby has one grade between her and the next oldest. I got pregnant, had the baby, breastfed, got pregnant before weaning and repeat. So I was never suspicious of birth control pills playing any part in my weight gain. I couldn’t get out to exercise often. I was allowed some walks but not too many and not too far.

I was always starving. Normal for breastfeeding and malnutrition.

When we escaped I let the birth control lapse but I was still breastfeeding the baby. I fed her for about nine more months after we left and then it got too hard with working to keep it up. She was twenty months, anyway. The boys got two years and some. I felt bad but my circumstances were so different. She did not fuss much.

As soon as we escaped the weight started falling off. I was able to get outside, I was not so hungry, and I attributed all of that to our changed life.

When we were relocated by the District Attorney I kept losing weight in our new place. I lost a lot of weight, I was nearly my early twenties weight when I was able to focus on my own medical care. I got the children looked after first, and with eight appointments a week and a new job I just put myself last. Who wouldn’t? So when I went in to finally see an OB/Gyn I did mention the cysts and she put me back on birth control. She put me on them all the time. No weeks off. No periods. Yay! Ummmm, no. But I didn’t figure that out til later.

This is so boring, really, but it’s context. So after about three months I started gaining weight again. I was starving, all the time. I was stressed out, tired, short tempered. At this point I was about a year and a half free. We figured it was my PTSD. Sometimes it hits you after a delay, sometimes dissociation keeps you from remembering. Sometimes you are in survival mode and only get around to feeling your feelings after you hit real safety.

I went with it. I started on beta blockers to help me slow down and stop overreacting. That took care of half the issue and then quitting coffee helped me enough to feel nearly normal. Not so irritable and crazy.

Last holiday season my son got the flu and I couldn’t leave the house to get the birth control pills. There was a holiday, they were closed, I had to wait a week. You are supposed to wait a week if you miss a few days. That was the best week of my last few years.

The pain stopped. The intense hunger turned off like magic. I was no longer a slave to the stove. My caloric intake was reduced by a thousand per day. I was logging, and it was ONE THOUSAND less calories a day. No more obsessive cravings. And I was so chill. Kids got into a fight? Pull them apart and send them to different rooms, have a chat. No problem. Not my usual MO. I usually have a bit of yelling first. I didn’t know what it was from, it didn’t register until I started back on the pills and my pain and irritability started up again.

I threw them out. Okay so I have them in a bag in my car to go to the medicine recycling box at the local Sheriff’s. You know what I mean.

I live like a nun. I don’t need these pills for the usual reasons. I got some cysts. I can take it. I lost four pounds. I stopped being afraid of being found. It doesn’t seem possible now, for some reason. I started talking in therapy. I don’t do so much of a standup routine in there anymore, now I tell my therapist what happened. I got my knee fixed, my cabinets rearranged, my room tidied up, my closet sorted. Shit I put off for months is getting done. I am blogging more. I am feeling more. I am having symptoms of dissociation. Not sure if I like the last one, but it feels more real than not caring. I sleep a lot less. I wake before the alarm, and sometimes I have to take melatonin to fall asleep.

This is all from birth control. I wish I had figured it out years ago.

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Filed under Asperger's, Domestic Abuse, Domestic Violence, Medication, PTSD, SIngle Parenting, Trauma, Uncategorized

Five Years Out- What I Learned This Year

We have been free for five years. The criminal order of protection expires in six years. We are down to two appointments per week from eight. I don’t have to log violent incidents because they are so few and far between. Here is what I have learned lately:

If you have a violent or hyper child, try cutting out dairy. Every bit of dairy, even butter, even buttermilk pancakes. Taking away dairy works like an antipsychotic, I am telling you true.

Your birth control pills or your estrogen can be making you sick. The side effects I am free from now that I have gotten off of The Pill are:
Stomach pain
Extreme persistent hunger
Eyes too dry to use contacts in
Cracking skin
Agoraphobic tendencies
Weight gain
Exhaustion
Sudden flares of temper
Irritability

I never suspected my Pill was hampering my recovery. Hard to control your PTSD when you are tired and irritable! Why was I on the Pill, when I live like a nun? For cysts. I get cysts inside and out and I would rather have them than the stomach pain I ended up with. Cyst pain is easier to deal with than that.

My Oldest Son did not experience his yearly regression. Possible reasons for the relief: 1)his obsessive and pervasive tendency to check out of reality and into books as a coping method
2)his anti-anxiety medication

He did NOT, however, ever gain back some of the skills he lost last year when he regressed. He is currently showing signs of stress- chewing his shirts, so I am still holding my breath a bit. But school is over in a week. I think this is going to be a regression free year.

It’s okay to be lazy. Sometimes you can’t go go go.

Thanks to the Sheriff, the DA, the DV Liaison, the Medical Team, and the friend who let us move into her basement almost five years ago. You made all things possible.

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Sensory Divergences

My Oldest Son is autistic (you might already know that). By far my favorite symptom of his sensory processing disorder is his observation that seeing very endearing and adorable images makes his teeth go warm and soft.

Today he saw a lot of baby pandas in a magazine. Last time it was puppies in a calendar.

Some of us feel warm inside when we see such things. I think I have heard it described as heart melting or something similar. It is so cute that he has it in his teeth!

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When Your Issues Clash

I hate video. I can watch movies, sometimes. Tension can bother me, suspense might bother me, and sometimes I just cannot sit still. I never watch them. Apologies to all those on my reading list here who put up videos. I read whatever you say about them, but I don’t watch them.

I can be triggered by videos as much as I can by real life. Loud noises, violence, aggression, sudden movements. In real life I am often triggered by my own children. They squabble, they scream, they run here and there, they jump up and down. It’s not like I lose it, but I can feel myself close to an edge. I have to calm them, remove them from the situation, distract them, or turn away when they are using the trampoline.

I have read a lot of books and articles on children. PTSD kids, trauma kids, autistic kids, ODD kids, ADHD kids. However, when I come across videos when researching an issue I just skip them. Because video.

Which is not so bright of me, I think.

Who should I be learning about kids from? Doctors? Yes. Doctors are good sources of information but it is just as important that I learn about children from children. Normally this is through children who have grown up and can vividly recall what it was like to be traumatized/developing autistic/angry/distracted. There is precious little out there from this last source. But that is changing.

I have known about and read about Amythest Schaber for years. But I have not been able to watch her videos, despite the fact that she has a pleasant voice and face. I just would rather read than listen because of my issues.

But I hit upon a solution for videos lately. I have been trying to keep abreast of Standing Rock events and live streaming video has been more informative on that issue than news articles. I put on the video and then I don’t watch it. I look away at pictures or something not moving and I go back and forth to manage the stimulation.

So after learning this trick this week (I know, seems simple to you but I have had this aversion…) I put on some videos by Amythest Schaber and found that what I term a regression she is calling autistic burnout. I had no idea that they could be the same thing.

The psychologist and I had begun crafting a plan to try to keep this year’s regression from happening to Oldest Son. We were going to treat it as a sort of breakdown, and were going to try to limit his overload and provide more one on one time and engage him in identifying and treating his feelings in the months leading up to his typical regression time. After listening to Amythest’s take on it I know now to add sensory diet into that plan. I am certain we will come up with more in the next few weeks, after the New Year it will become more critical. So we were on the right track but I ought to have more access to information now that I have the correct terminology.

So this is an example of how my own issues have limited my parenting. I think the date on that video was 2014. I ought to have watched it back then.

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One Less Appointment

My Oldest Son has been seeing a physical therapist for four years. A child psychologist for three years, a skills therapist for four years (with a year off when there was no provider), and a child psychiatrist for two years. He also had social skills education at school for two years and a social group run by a psychologist with other autistic kids for over two years.

Yesterday the skills therapist released him as a client. He said the difference between my son of two years ago and my son today is night and day, and Oldest Son no longer requires his services.

We had brought the frequency of appointments down from twice monthly to once a month. So though I still have a lot of appointments per week, I get to drop one per month.

I wish I learned that quickly.

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