Autism & Me: Advocating for your child

Put simply, you have to. Like parenting, no one else can do it for you, and no one else can do it as well for your child as you.

Even if you have faith in your child’s teachers and the administration of the school you have to be involved, because you never know what it going on.

My son started school in August 2005. It was a huge transition, complicated by the fact that he wasn’t diagnosed yet, so the school had to legally treat him like every other kid, no ammenities. It was a struggle, in part because he had no clue how to do social school things (like ask to go to the bathroom. He would just drop his pants and walk toward the in room bathroom.) But he knew all his letters, shapes, colors and numbers and had started very basic reading and adding. He was ahead and behind at the same time. So he was equal parts frustrated and bored.

At the beginning of 2006 he was diagnosed and began getting badly needed support, like speech and outside of the class social lessons. He’s always done better one on one, so he began, in many ways, to catch up. More importantly, he began to see that school wasn’t us kicking him out of the house for eight hours a day. It was puzzling, challenging and fun.

Over the summer break something fantastic happened. He got bored. And being bored he started to want to go back to school, where there was always something to do. He was ready, we thought.

Except they put him in a class with a teacher who had no autism training, under a principal who thought he was a self punishing retard, a “school manager” who boasted that he didn’t have autism at all… and there were other problems. Things fell apart quickly. There were personel problems, communication problems, training problems…put simply everyone thought they knew better than me because they had training and I didn’t. A few thought they were going to “cure” my son and were bitterly disappointed to discover that they didn’t have a clue. The administration didn’t train or support the teacher, yet came down very hard on her for failing to control my son. The people who were supposed to be supporting him dismissed him as too much trouble, or a “retard” even to the point where we were once urged to give up on him, put in him a home “with other people like him” and get on with our lives.

His IEP (a lesson plan, which defines what ammenities a special needs child gets, which include things from a wheelchair to extra time for tests, to extra bathroom breaks or speech class) and BIP (Behavior Intervention Plan) were comepletely ignored.

I was not told until a month AFTER the problems began. Then the teacher began sending my son to the office, so they could experience hos behavior first hand. And the office, not giving a damn, sent him home. He came home early two to three times a week. And he learned that if he misbehaved (which degraded into violence) he would get sent home, he’s get to leave a situation that was incredibly stressful for him, people who he couldn’t communicate with, who yelled at him, and physically fought with him and overall made every day hell.

So guess what he did? Yeah, he hit, a lot. He kicked. He bit if those things failed. We had IEP meetings. We brainstormed. We tried new things. I was told they were trying new things, when in reality they just started putting him on the computer, or sending him to the class of people he liked to get him to shut up.

Then, one day they called an emergency IEP meeting. Those assholes got twelve–TWELVE–people to sit me down and go around the room one person at a time and tell me–only me–how horrible and uncontrollable my child was, and that they were sending him to another school. (and I also found out how badly they were treating him, and how they were ignoring the IEP because I wasn’t the autism expert. The autism expert, BTW, was too hung up on “don’t let him wear that lanyard (we used a lanyard with an id holder and a card in it to give him smilies for immediate rewards) because he can’t think that it’s okay for boys to wear necklaces” to offer anything actually useful.

Those days were real bad. They jerked me around on where he’d be going, among other things. One morning when I was getting him ready for school he broke down and begged me not to make him go. And I’d been sick to my stomach at the thought of looking at those people again, so it came as a relief. I don’t know who broke down worse, him or me, but it was bad. And part of it was my fault, because I had trusted them to do their jobs and I have believed them when they didn’t deserve it.

But you know what, moving schools was probably the best thing to happen to us.

In January 2006 he moved to a new school, one that is a third hearing impaired/deaf kids, so the whole school is familiar with handling special needs children. His teacher was way different. First he looked at my son as a challenge, someone who needed help, not someone taking up all his time who was useless and not capable anyway.

And over two years his new teacher might not have gotten him caught up to his grade level, but he did something far more important, he restored my son’s faith in teachers.

But this past fall be encountered problems again, that changed how we deal with those dealing with my son. After my trip to Context my son had two meltdowns, bad ones, in school. The administration once again brought up the idea of changing schools (thought this time is was much different). However, not only was the intention different, I was different. I was not opening myself up to another 12 person pile on, or anything that happened the first time around.

Seven Counties, a mental health advocacy and assistance group here in Louisville, offers case managers, that is a social worker whose job it is to come to your house every month and talk about what your family needs, how school and behavior, etc is going and more. I signed up after my son switched school and the first thing I did was call my case manager and tell him everything. He in turn did everything from talk with me, look up options, keepe me calm when I started panicking, remembering what happened last time. And he got us in touch with a behavoralist who went into the classroom and gave us a non-biased opinion of what my son needed, and was or wasn’t getting in the class.

The bad news was, again, his IEP and BIP. But this time the problem was that the methods the experts and professionals were telling us to use weren’t working with my son. But the teacher’s hands were tied because the system demanded certain things from him and those things were the behavioral equivilent of genre tropes. He has autism, use social stories (which never worked with my son). He has behavioral problems, give him a reward system (which was hard to impliment since his #1 reward isn’t candy or high fives or stickers, it’s a break from work.)

My son was also in a classroom mostly intended for mildly mentally retarded kids, that heavily depended on rote learning, repetition. Not to mention one teacher to ten kids, all of whom were prone to meltdowns, and the fact that my son was only a problem when you tried to get him to do work. Left to his own devices he was wonderfully behaved.

So again, he was suffering, not emotionally or mentally, but academically. And because I trusted the people dealing with him, I just let the situation go. (Still, I don’t think it was the teacher’s fault. His hands were tied and the system just wasn’t listening to him.)

We were presented options, and funnily enough, some things were kept from us. There were three people who where strongly pushing for him to move schools again. We were ready to fight it, tooth and nail, until someone finally told us that his school actually had the classification of class that they wanted to move him to, and not only was it next door to my son’s current (at that time) classroom, but he was already familiar with and working with the teacher.

The administration outright tried to push us into changing schools (where none of the people present would have to deal with my son) while his actual teachers sa quietly by, completely wrapped up in bullshit public school politics. They couldn’t help without threatening their jobs.

Which is why it’s our job to advocate for our children. Because other people literally cannot. You cannot depend on teachers, administrators ,etc to advocate for you because you do not know what they are told, or threatened with, when you aren’t looking.

I am pleased to say that I wrote up a list of demands, and my reasoning for them, and walked into that IEP meeting with my case manager, the behavioralist, and my husband all with me. We cut off every protest, every excuse, every “but” that they had. We gave them our demands and…They backed down. They stopped pushing. Like a submissive dog they completely changed how they were dealing with us.

I’m not kidding, they went from essentially telling us that we didnt know what was best for our child and were going to harm him by not moving him, to appologizing and making up excuses for their own behavior.

A month later I walked in to another meeting, with another list of demands. See, they (meanting those three “experts”, not the acutal teachers) resented the behaviorlist’s contibutions. In fact, they blocked him from visiting the class for a follow up, and tried to exclude him from the meetings. (I had to call him and invite him on my own to make sure he knew when the meeting was.) they refused to read his report. They repeatedly told me they didn’t need him, because they had their own autism expert (remember, another professional who is bound by the school system she worked for).

So I wrote down all the methods he had, in my own words, with language like “The teachers and staff will…” I demanded that some things that they were insisting on (like those social stories, which as it turned out they knew didn’t work and were pushing to “prove” my son couldn’t be where he was then) be abandoned and other things be instituted.

And they backed down on every single one and gave me exactly what I wanted. And now my son is doing fabulous. His first teacher at this school taught him to trust adults, and his current teacher has the training and respect to bring out the best in him. Next month instead of going to an IEP meeting I’ll be going to a plain old Parent-Teacher Conference. Nothing’s wrong, and I just want to keep it that way.

So to sum up, you have to advocate for your child because the administration often has only their work load in mind, and the teachers are limited to what they can do. The experts are also school employees, and are often looking for a one answer fits all solution, which is not how people work, and definitely not how autism works.

You have to go in, because a teacher asking for help gets none, but a parent going in and demanding it is the most fear creature in a school these days. So it’s our job not to be friends to the teachers, or understanding with the administration. We cannot just hand our children off to the shcool and hope for the best. It’s our jobs to make sure they get the best that they can. It’s our job to demand more from the school system, because left alone, we’ll never get it.