Rant About Discrimination in the Ableist School System

Post Reply New Topic

I am tired and hurt again today. Tired from figuring out the most effective way to educate my daughter's school IEP case manager about what executive functioning is and that it is her job to help my daughter. Mind you, the case manager has a master's degree in special education. She has withdrawn an accommodation that was not written in blood on our IEP. It was a simple list of upcoming assignments and due dates.
If I want to force the issue I will need to go through the extensive legal IEP meeting process to have her Executive Functioning goal and accommodations rewritten. In fact I am going to have to do that because the current wording is ridiculous. I really was overwhelmed with more pressing matters,(keeping my daughter from killing herself) when it was written. Yep I signed it.
I am hurt today because of the cold and formal way she informed me that "going forward in the remainder of the 2018-2019 school year you are to refer to the online grade book for information" etc.
You see, it's the micro aggression and overt aggression we have experienced for the past 12 years with both of our autistic kids. The subtle and blatant ways our children and ourselves as parents are judged, marginalized, isolated, legally handled, and demeaned. It is constant.
Every autistic individual and parent is stronger, braver, and works harder than their neurotypical peers. We are not lazy, irresponsible, too permissive, crazy, excuse making parents who just can't get it together. Neither are we the really demeaning label "helicopter parents" because we are educated, paying attention, and trying to help our kids. So which is it? Too involved, not involved enough? If we only were better parents our children would ........?! If the kids would just try harder they would.......?! You get my point. At least I hope you get my point. We don't have a neurodiverse family support group for parents of teens in my community. I am too exhausted and lacking in executive functioning skills to start one whilst clear cutting the jungle of inequity laid out for my children.
Thanks for listening.

I wish my mother participated with this forum. She would sympathize with everything you said. I may yet know what you are going through. My son is just a baby now, but he may turn out to be autistic as well, and i will see first hand parents and children alike are mistreated when in the special ed labyrinth.

Thanks, and congrats on your baby. Kids are the biggest blessing. My girls are my greatest treasure. Some school progress is being made. Perhaps by the time he enters school it will be a bit better. At times like these I think about all the brave families that came before us, those who fought just to have their kids allowed in the same classroom...even further back, those who fought to keep their kids out of institutions. They were the real trailblazers. My hat's off to your mom. I am sure she would have loved to have this site to turn to when things were tough.

Sorry I am so late with this response, but I wanted to talk to mother more about this. Honestly, she had surprisingly little to say other than that she does indeed wish she had a forum like this one. Nonetheless she got me that IEP, she got me into a good collage, and no amount condescending comments stopped her. She does however thank you for implying that she is a trailblazer. She never thought of herself that way, but still she was flattered.

You have my sympathy. Perhaps this video can illustrate my point of view.



It's not just about children. Adults learn the same way. In the wild, there is no room for pity. Skills are the only things that count.

On autism, there are several view. You have people that view it as a disorder/illness. You have people that view it as a disability (ASAN). And then, you have people that view it as lifestyle (pretty much like homosexuality, or skin color).

I feel sorry about people that view autism as disease/disorder/defect/disability/detriment. You know why? Because, once you start on that mindset, you choose to blame someone else. So, in your case, you look at the IEP case manager with a master's degree, and you think it is her job to develop your daughter, because she is the "expert."

Nope. She is not the expert. You are.

People that view autism as a lifestyle, they don't blame doctors, medication, school teachers, psychologists. Do you know why? Because they take upon themselves the responsibility in developing their children, or themselves.

- - - - -

This last week was the conference week. For my son I also had an IEP session. It was kind of short, with plenty of laughter. I told the teachers and the principal, that every day I picked up my son from school, he always had this big smile on his face. I said, we must all be doing something right. Frankly, all the teachers are crazy about my son. And I am not exaggerating. The speech teacher gave me two pictures she took from her classroom: one with my son standing in front the whiteboard, drawing some stick figures. The other one was just the whiteboard, with the speech teacher's drawings next to my son's drawings. That is, they both drew and talked at the same time: they communicated visual-manually, besides talking. The classroom teacher passed to me an essay that my son had written and typed up. It was about an electronic gate that he has designed. This followed from the interview I did for my son about his invention. I recorded a video, and sent to his classroom teacher. In school, the teacher then used my son's interest to ask him to write up an essay. I call this the "pull method" of developing children, where the children's interests are the starting points ... as opposed to the "push" method where teachers push knowledge onto children.

The fact is: school teachers collaborate with me. They listen to me. They follow my requests. I am in the driver seat. This is a public school, mind you. It's just heartwarming to see teachers going out of their ways to collaborate with me. It makes you realize there are good people in this world, and how true this saying is: "it takes a village to raise a child."

- - - - -

Sure, there are many teachers/psychologists out there that think they are the experts. It does take some time to bang on these people heads and make them wake up to realize that they are not the experts. The truth is, people out there don't understand autism, including all those doctors/researchers/psychologists/teachers that have a degree in this field. To me, none of them have a clue about what autism really is.

So, if teachers are not the experts, then it falls with the parents on teaching the teachers. Sure, there are always some un-teachable teachers, if that is the case, you change school. This world is big enough. It is impossible not to find some nice people out there. If you think the entire world is nasty, then I'd say there is a bigger problem. Now, say, you are in an OK, average setting. The next step is: how in the world can you prove to the system that you know what you are talking about? How do you prove to the world that you are right and they are wrong? How do you become a leader (and not a follower) in the development of your daughter?

You need authority, and you need proofs, right? Guess what? If you have been raising your children with only your mouths, you won't have proofs. You won't have anything to show. But, if you are like me, and work with your hands, you'll have things to show: drawings, writings, toy models, electronic circuits, hand-made animation video clips. It's not your word against their words anymore. You have something permanent: in ink, in colors, in images/videos, in 3d toy models (e.g. a working safety elevator). They only have words. Tell me, who will prevail, now? Who stands on a higher ground, now?

- - - - -

Skills are what counts. From simple things like how to use a scanner, to image editing programs (like GIMP), to audio editing programs (like Audacity), to video editing (Explain Everything, or Pinnacle Studio), these are all basic daily bread-and-butter tools that every single parent out there ought to know how to use. And if you are crazy like me, you can also build a model safety elevator with wooden parts over 5 weekends, and run to Home Depot to get all the tools and supplies.

I also write essays for my children, on special occasions. And I share them with school teachers.

So, of course, in the eyes of the teachers, I am a different breed of parent. I do things that they don't do. I do things that they don't even know how to do. I do things that other parents don't do.

And that is how I earn their respect. I am not great at talking. But I do things that people can see, can touch.

Skills, are what make you survive in the wild.

Here is an video I made to capture the back-and-forth interaction between home and school. My son created an electronic gate to control visitor traffic to upstairs in our house. The teacher then leveraged on my son's interest to develop his writing and typing skills. Once I got the essay back from the teacher, I then used it to develop his verbal skills by recording his reading aloud, and by removing all pauses and imperfections. This way, my son gets to hear his own perfect speech and get used to it. (Think about which speech therapists out there have ever achieved that.)



Here I've used all kinds of tools: Audacity (for sound), Shotcut (for video), Explain Everything (for the moving red dot), GIMP (for images), etc. The thing is, videos also work as rewards. For instance, my son giggled quite a bit at the passage where I used a sound effect to mask out some private information. Handmade videos show you care and pay attention to your child's interests. That, combined with encouragement from school and from ABA people, is a huge motivator for my son to keep inventing new things. I cannot catch up with my son's inventions, and they are getting more and more complex by the day. Some people would look at his inventions and wonder what the big deal is. It is actually a huge deal. You see that all his development hinges upon his personal interests. From there he is acquiring writing and typing skills, deep thinking skills, plus verbal and socialization skills.

None of that would have happened, if I haven't used my hands to make things for my son.

Executive skills can wait. Developing the brains of the children, establishing more connections, and making the children acquire deep thinking skills, those things are much more important. Because once the brains of these children are developed, it'll be so much easier to teach them whatever else they need to learn.

(My son was right here when I was writing this message. He asked me what I used for the privacy sound effect. I told him: Audacity. I told him I'd teach him how to use it later. I then asked him: and what did Papa use to make the red dot? He answered: "You used Explain Everything." Yeap, reading comprehension. He figured it out from reading what I just wrote here.)

I guess I came from a different world. Not all Aspies (high functioning autistics) landed up in institutions. They grew and became valuable members of society. They may have been a little quirky, but they found a place. When I grew up and got married and had two children, I fashioned a suit of invisible armor to protect them always. From the time they began to walk and talk, my wife and I taught them skills, real life skills. So before they stepped into a classroom for the first time they had an endless supply of real life skills under their belt and if anyone ever called them stupid or worthless, they absolutely knew better because they knew a lot more real life skills than anyone in their class.

I can see that you have the best interest in your children at heart. But I don't want you to spin your wheels without much traction. You may find it more useful to teach your children one new real life skill each day.

Curious...what grade?

Where I live, everything like assignments etc are on a a website/app. In elementary school, the kids with EF issues would get help having it hand written out in their assignment books.

By 3rd grade, the parapro or teacher would screen capture it, print it and staple in the assignment book. Someone would go over it with the kid.

5th grade, the kid had to either check it on the app, or screen shot print themselves. The teacher/para pro would review what should be done before the kid goes home.

6th-12th. It was on the kid to do their preferred method to keep track, but there was always a teacher reminding them etc.

My district is extremely aggressive removing accommodations like parapros and anything they think (true or not) that the kid can handle.

I can't tell if they are not helping your DD keep on track, or not keeping you looped into what is happening at school.

I'd be pissed if they are letting her fend for herself. If the list written out is just for you (DD already has it in her agenda book), my district would punt you to the web site too. I can't even voice a complaint about any of my kid's grades or assignments, because the first default response is "Have you check Schoology?" It's maddening.

The SpEd coordinator sounds like a piece of work. I know around here (my DD's friend is on the spectrum), to get a keep the parent in the loop accommodation is near impossible in middle school and beyond, even with reopening the IEP. The older the kid gets, the hard and faster the district wants to remove scaffolding.

I think all her mom could get was an email screen shot, and it had to be on her kid to do it.

Good luck. Sorry that woman was such a wench.

If it is at all possible, home schooling is actually easier than trying to deal with the school.

I would encourage keeping track of the bs they are putting your kids through, get together with some other parents, and sue. I regret not suing my school badly.

Wow. I hear you. My heart goes out to you.

I am in Virginia as well. Both of my children have been DX’ed with ASD. I know that dealing with IEP teams can be difficult.

I offer you this...

So you signed something that maybe you didn’t agree with...no big deal. You have the right as the guardian to request an IEP meeting at ANY TIME!! You work out the scheduling details, the school formally notifies you, and you meet back up again and address what you need to address.

I have found the Virginia Disability Law Center to be a great resource. They have a book that they published called “Pathways Through Special Education” It takes the legalese and puts it in an easier to digest format. It is an awesome resource for Parent Advocates.

I understand the added responsibility of being a Parent Advocate. As a late diagnosed adult, I also understand the value of what an IEP can do for the longevity of a child’s life. I wish I had the supports that my children have now. In 10 years, the people that will have worked at the various schools (elementary, middle and high) will be long gone, and will never see my children again and when they turn 21 they will age out. I strive every day to make sure both of them have what they need, cause if my wife or I a I don’t do it.. who will?

Feel free to Direct Message me if you would like. I would be happy to share the insights that I have learned along the way as well as resources.

Kind regards
Shark

Thanks everyone for the wide variety of feedback. We have worked toward solutions with the school and have made a lot of progress with regard to her socialization. Mainly, she has done that. We did nothing special except get her there. The culture of the school is small and relatively accepting of unique kids. Most of the kids there are creative open minded types. The kids have been kind. She has also chosen to not disclose her AS to the kids. Her ability to mask and pass as NT has been so remarkably different from last year, when she was in middle school, that the high school IEP team is questioning her diagnosis.
The subject of masking and passing and why that is not really healthy this is a whole other topic. In a way that is the real topic. But I will save my thoughts on that for another day.
For right now this is the best public school option we have. We have had to hire our advocate again in order to prevent the loss of services. Meanwhile she is failing out. The reasons for that are complex. Basically she has needed to stabilize and transition. The social skills advancements have been everything. Academics needs more time and adjustment to the rigor. It's a sticky situation because with the diagnosis under IDEA/FAPE if she fails it is legally on them. Without the diagnosis, it's legally on us and is seen as a behavior problem. Let me explain further.
We live in a district with major problems and funding issues. Major problems in the general education arena, including high poverty rates, crumbling buildings, and long standing political issues. Special ed is an area that will not be fixed in the time my children attend school. It is not the rosy progressive picture that other districts have. There is a general unwritten policy and drive to get students off services. It is the main discussion at the Exceptional Ed Advisory Board Meetings due to budgetary problems. I'm not making this up. We are actively involved and know our rights inside and out.
Moving is not an option for us. We are really just working with what we have. We get what services we can at school and get most other services through our health insurance.
As I have written this I think I have become defensive. One of the problems with posting is that you get feedback and can't control what others say. I just wrote a paragraph defending my position on a forum that I need to feel supported.
I often don't know how to interpret what people mean. If ideas and suggestions are criticism or just ideas. I really am not looking for feedback on my philosophy or viewpoint. Who's the expert or who's job it is. Everyone's situation is different. Very few teachers adore my child and I can't present her in a way to make that happen. She is a brutally honest outspoken Aspie teenager. She will make a great advocate some day. There have been individual teachers that have really made the difference, whatever the IEP says. Building those relationships when possible has been helpful.

If this doesn't work out we will do something else. I have begun looking at home schooling. That grass looks so green to me today. Ultimately she will find her way. I just want a crystal ball or time machine. Do I go this way or that way. Do we keep forcing the issue mainstream, do we go another way. I am not actually asking the forum to answer that. If anything I am looking to hear the comforting things those who have gone before me have to say about not losing hope in the thick of it. If you have never lost hope, and have it all figured out I don't think I need to hear from you. If you lose and find hope, and have done that a few times, I think I'd welcome the comfort.
I do love ideas though. The video with the fabulous stairs gate is so cool. My younger daughter built a similar mechanical system for her bedroom door.

My ASD child is about to graduate from a very good college, and even spent a year living abroad. Is that comforting?

My husband and I performed the executive function roles for our son for years. When he was in middle school it was INTENSE. He was not in any way developmentally ready for the executive function requirements, but was SMART and no one wanted to hold him back from learning. Keeping on top of his needs was practically a full time job.

But I'm not full on ASD; maybe a little, but I never suffered from extreme executive dysfunction issues; I'm just ... in the middle.

One solution we used for a while was enrolling him in an academic support period. This was tricky, because academic support usually has its own learning plan, when our reason for enrolling our son was to get help from the support specialist with organizing homework and assignments, dealing with the disgraphia, getting editing help related to the disgraphia (there was a point teachers thought I might be writing my son's papers for him, so this made it clear I was not), and interfacing with teachers. It worked really well when the regular teacher who knew the IEP was there. When there were substitutes ... well, my son was doing worksheets that were far below him. He learned to just accept that as a cost to an arrangement he otherwise agreed was necessary. This was our way of adapting the existing structure at the school to our son's unique needs, and it served it's purpose quite well.

It was also in academic support that he was first encouraged to tutor other students in the group. After all, he had mastered the material they were struggling with. It turned out he was very good at it. In doing so, he discovered he loves teaching.

By Sophomore year of high school he was more interested in being able to increase his academic load than he was in getting the extra help, and he had developmentally caught up far enough to drop the support period. He still struggled and will always struggle, but he had reached an age where he felt he needed to learn to sink or swim with the strengths and weaknesses he had, since he didn't expect them to ever change. The cost, of course, was grades that did not truly reflect what he was capable of, but you only need one university to see past the grades, and he was gifted with that.

His life is and always will be a mixed bag. He won a coveted job tutoring at his university, but completely forgot to show up one day. He used the experience to add more layers to the calendar systems he has created for himself, to keep himself where he needs to be and doing what he needs to do. It will never be perfect.

It will be interesting to see how his career job search goes. He knows he should be doing it now, utilizing the recruiting opportunities on campus, but he just can't get himself to. Until now, he has gotten every job he has ever applied for. But what he wants for a career ... this will be tough. He is graduating as a computer science major, but his dream job would be as a game designer (mostly trading card games). He's more likely to land in a programming job, but he's OK with that. He hopes to eventually teach computer science at the high school level. He will design no matter what day job he has.

I think the problem you have with your daughter's IEP is that YOU have a special need, as well. I listened to all those road blocks the school was throwing up and spun them around until there was a solution that the school could afford and that would solve our most pressing issues. And then I stood my ground (I can be insanely tough, but relatively nice about it). I also had the time and energy to run most of my son's executive function myself. For most parents, following the on-line information is fine. But if that isn't going to work for you because of your own needs, you have to make it clear to the school. Our kids shouldn't have to pay for our limitations, and I would phrase it exactly like that to the school. Ask them to brainstorm with you; see what solutions can be found that work for everyone. Have an extra meeting if need it. I know they are horrible to go through, but its how you get to results. Don't let them make you feel like you are less; you are NOT. You are a unique person with strengths and weaknesses who wants to the best by the child. The official jargon they use can break a parent's heart, but you KNOW your child, and you know what promise she has, if only the right supports are there. Form a vision of the path she needs and hold onto it through all the negotiations.

If you and your daughter decide that homeschooling will be best, that can be very positive, too. I know people who have been very happy with the choice. We considered it for a while, but my son decided against it. Whatever you decide, I wish you both the best.