This is about to be a very personal post. But some things are so important they have to be discussed.
If you’ve been reading here for any length of time you know that my son, codename: Mister, is autistic. He developed normally until about three then just…stopped. A few months before he started school his doctor saw a major sign called echolalia and referred him for testing. He started school, and the school, as well, referred him for testing. We got the school diagnosis back first, which was good because it meant we could get supports in place in school.
Transitions are a huge obstacle for many autistic kids and the shift from hanging out at home with me to spend the day in school with a bunch of people, noises, smells, rules and expectations was pretty jarring. But his kindergarten teacher told us outright she would do anything she could to help him do better. Teachers like that should be cloned. We need more of them, desperately, especially in the special needs classes.
In first grade we ran into a teacher who had no experience in autism, the school refused to allow her access to training classes (they just dumped Mister in with her), they refused to support her, and maybe, she knew he was smart and thought she’d be able to cure him some. I think it’s a rut a lot of people fall into, they expect (or hope) to be the one that makes Helen Keller speak. But it doesn’t work like that. And as the teacher learned, yelling louder doesn’t make a child understand.
With severe problems with language and communication Mister only had one way to express his frustration and stress, he got mad. He started throwing things in class, and cursing and yelling, and kicking and hitting people. The school responded by calling me multiple times a week and telling me to take him home. And so he learned that when he got stressed out or upset and hit someone or threw something they’d send him home, out of the situation that stressed him out. Bad behavior=removal from the situation causing stress. It was a VERY bad lesson for him to learn. It was a bad combination of events that led to a room full of experts sitting me down to tell me how horrible, how hopeless, how uncontrollable my son was. A counselor told us to just give up and putting him in a “place for people like him”. The school refused to educate him.
By the way, both things are very, very illegal here in Kentucky.
I broke down. He broke down. Neither one of us could get ready for school without crying. He regressed, going nonverbal for several weeks, refusing to leave the room I was in and wetting the bed at night (after none having done so for years). It was bad. We all felt broken and angry and helpless.
But school, like life, goes on. Mister moved to a self contained class, ten kids one teacher. It wasn’t perfect, but the teacher was awesome. Over the next year and half he restored Mister’s trust in schools and teachers. The bad news was that we had to focus on that, on fixing the behavior and anxiety that others in the school system had taught him. So he fell behind grade level (not unexpected).
As his teacher began pushing him Mister began stressing out again (to a lesser degree) and, being clever, he decided leaving the site stressing him out was the best way to avoid the stress. So he started running out of the classroom. Or acting out just enough that he was sent outside the class for calm down time (and as often happens in school, also got completely distracted from work). The teacher was great, but handling ten kids with special needs with no aides in the class meant Mister was often left to educational computer games because he was well behaved unless you were trying to push him to learn new things, and the other kids had more intensive needs.
So we had a behavioralist come in and evaluate the situation and concluded no matter how great the teacher was, and how much we all adored each other Mister was not going to make up for lost time without being in a class with better structure for pushing him educationally and still supporting his anxiety problems. People in the school system suggested another school. Remembering how he regressed after the first school switch we were very reluctant, but we visited it anyway. At the first meeting the teacher and ECE specialist pushed us to remove Mister from the diploma track. (In our school system you have 2 options–diploma track which means take all the tests, pass under the traditional rules and progress in grade level under the traditional rules, or the certificate track, meant for those kids unable to reach past a certain level of progression but who can still benefit from a school setting. No tests or such required.)
This displeased us, a lot. We decided the teacher’s quick decision for our son did not represent his best interests and asked for a different option. Don’t get me wrong, we’re not completely against taking him off the diploma track, but it seemed like a waste when he hadn’t even had a chance to bounce back academically from his first few years of school. We didn’t even know what he was capable of yet, so why make that choice now?
The school…was less than happy but did mention that there was a similar class to what we’d looked at…next door to the class Mister was currently in. Plus he already went into that class for reading and math. He already knew and liked the teacher. Why weren’t we given that option first? Your guess is as good as mine (probably the same as mine).
But Mister was moved to the class with two extra aides, with a behavioral plan and he started catching up. More than that, in the last two years he’s matured too, grown more secure, more able to calm himself and more able to face uncomfortable situations (like new math concepts and reading books).
Now allow me a small aside. We’re, in some ways, very lucky he’s gotten all the testing he has. For one, it helps us put to words what we already know. For two it allows us to back up our parent instincts with hard science. Every parent should be as lucky to see in hard numbers their child’s strength and weaknesses to address them.
Mister is a very smart boy. At his last evaluation his nonverbal IQ was over 110. The keyword there, though is nonverbal. Autism, while a spectrum disorder, is trademarked by an impairment in language and communication. There are other things too, like sensory issues, muscle development problems, and often OCD or mental retardation. But the core problem is one of language and social development. My OB told me my pregnancy was right out of the textbook. So is Mister’s form of autism.
He has no mental retardation, some sensory issues, no OCD or other comorbid disorders. He has very classic autism. His IQ is in the 110s, but according to the same testing he only understands 68% of what is communicated to him and can only express himself at about 78% of the kids his age. (We think it’s higher than that now, but that’s what the most recent study says, and those are the numbers I’m using.)
So any time you expect him to demonstrate academic principles through verbal answers, written answers or traditional tests he has problems, not because he doesn’t know the answer, but because he literally cannot understand the words, either in the questions or to form an answer. Given supports, like pictorial answer options, extra time to take tests, someone to write answers for him and alternative testing questions (you know how word problems try to be sneaky–he can’t handle that) he can do very well. Given behavioral supports like immediate rewards for accomplishments (like a high five), earned breaks for tackling harder work and a teacher who knows his signals and can help him identify when he’s becoming stressed out and help him calm down before he shuts down, he can tackle and learn. And furthermore, he can learn to have confidence in his own abilities, which in turn helps him take on new situations with less stress.
This year he moved from elementary school to middle school. The transition alone had us worried, but so did not knowing his new teacher. We only met her the week before school started, despite attempts. We keep all our reports and tried to share tips to better educate him. He had all the right things, an IEP, a BIP, in place. Furthermore we, the parents are far more educated about dealing with they system and push to stay informed of how things are going. For the first few month Mister did beautifully. He showed amazing maturity in transitioning to his new school. He pushed himself to try new work and function in a new setting. He made all As and Bs. He came home editing sentences, dividing and bragging about exponents.
We had a few small worries, like at a meeting the teacher said she worried about his lack of friends, complained that he was always talking under his breath (there’s that echolalia) and seemed very worried when we asked for him to be mainstreamed for Language Arts–not because of him, but because she didn’t want to give up one of her aides to sit in the class with him.
Then one day the bus rolled in front of our house and he didn’t get off. Jason, after a moment, went out to see what was going on. The bus driver couldn’t get him off the bus. Mister was hysterical, hitting himself and saying he wanted to die. It took us an hour to calm him down. When Jason called the teacher to see if anything had happened to upset him that day she informed us that Mister is ALWAYS like that, he’s always contrary and noncompliant and something must have happened on the bus. (The bus personnel were really worried, by the way, because they had never seen Mister so upset.)
Jason went to talk to the teacher directly two days later at which point he was told that Mister was lying about her at home because he was mad at her (Mister is not capable of lying outside of in an immediate situation. He will say “No, I didn’t hit my sister” but he won’t think to make up a story about something happened at school hours later. He just doesn’t think like that and has some problems with temporal concepts.) She then also said that Jason must be emotional abusive to him because he must be repeating the “I want to die” type talk from things Jason has told him.
To say we were upset would be a huge understatement.
Two weeks later (last week) I got a call telling me Mister was completely uncontrollable and could I please come help in the class. While I was there THREE people told me they never had any problems with him, they could get him to calm down no problem but he always seemed to have trouble in his class. One added that he’d been worried because Mister outright refused to go back into his class without me.
Is there any bigger red flag? Special needs child or not? Imagine the horror of finding out your child is so scared/worried/frustrated/anxious he cannot go back into his classroom without an adult he trusts there to protect him.
And while I was there there were no problems, he finished all his work. But his teacher claimed he said he was upset because his sister had started a fight with him that morning (which is impossible because she doesn’t get up until and hour after he leaves, not to mention he left that morning in a great mood). I held my tongue, though I dearly wanted not to.
Monday we had a meeting to address his behavior. What *should* have happened was a behavioral intervention plan should have been put in place to determine rewards, punishments and ensure consistent handling of problems. Instead five members of the school staff attempted to bully us into taking him off the diploma track.
He is incapable of functioning, they said. He’s too smart to be in the class he’s in and it’s our fault he’s doing bad because we left him in a class greatly below his level. (Do you see the same contradiction we did?)
The staff talked with each other behind our backs.
They ignored our claims that there is a communication problem, and instead insisted Mister just isn’t capable of graduating.
They denied that low language scores and anxiety issues were classic issues of autism and insisted “something else” must be wrong with him. They all claimed to have a great deal of experience with autistic kids, who are, apparently, either completely able to function in a classroom (which Mister never will be, they say) with no issues, or are so severely disabled they cannot possibly be expected to graduate. They were passive-aggressively doubtful when I quoted the IQ results and asked multiple times for me to show them the paperwork showing that.
They said there is no possible way they can educate Mister.
They said if he remained in his mainstream classes they would fail him.
They said they are a traditional school and Mister cannot function in their program, besides they are the second highest ranking (through test scores) school in the district and he cannot live up to that expectation.
They refused to talk about behavioral interventions. They refused to talk about supports in class. They said that in the class he was in they were not ever allowed to teach him above the 3rd grade level (um, since when are exponents 3rd grade level? Also we have since found out this is completely false.)
They said our only options were to remove him from the school or take him off the diploma track (no doubt for the sake of their precious test scores).
Jason and I left the meeting furious. I cannot count the number of laws they broke on one hand. Furthermore their bullying, passive-aggressive tactics proved they don’t care about actually educating my child, just getting the money his enrollment brings to the school. They blamed everyone but themselves for the situation, including Mini, who only one of them has met (and the other students)! They still refuse to address the fact that Mister is so stressed out about going to school, about being in that class, that he comes home in tears, he breaks down and just lays on the floor in class, he says he’d rather be sick or hurt in the hospital than go to school. They refuse to address the fact that the teacher appears to have no understanding of autism, and continues to complain about Mister’s tics (which are a sign of stress, NOT something he is doing to disobey her).
So we instituted our own reward system at home. He gets rewards at home for completing his school work. And he’s working again. He’s smiling again. He’s enjoying reading time again. He’s sitting down and doing homework again instead of being overwhelmed by stress. He’s found a reason to do his work, despite whatever is going on at school, and he’s beginning to feel good about himself again.
But today we got a note in his binder. The teacher complained that he kept talking all day (echolalia, it’s a stress response. He repeats to soothe himself with things he likes when in stressful situations. It’s like thinking happy thoughts only he experiences happy moments and yeah, that means he mutters things. It’s part of his clinical, professional, well established diagnosis.) She complained that he needed to be reminded to stay on task and do his work. (Tell me what 6th grader doesn’t!)
I decided to talk about this for a few reasons. First, because I needed to get all my thoughts out in words. Words make it solid and once it’s out in words I can let it go and look at things in a new way. Second, I know some of you know Mister and would like to know what the epic battle I’ve been talking about in reference to him has been. Third, I know I get hits from people out there parenting special needs kids, and I know it’s easy to trust people who seem to know what they’re talking about. It’s easy to not be as alert as you should be and find out things are happening. It’s easy to not know what your rights are, to think that because these people are educated professionals they know how to help your kids.
That doesn’t mean they will. No one can advocate for your child like you. No one can understand your child like you. No one can help your child like you.
I know Mister will be okay, because I’m already seeing a bounce back. I know he’s smart and I know I can motivate him, where others have to try to manipulate him or bully him. Furthermore I’m proud that he can’t be bullied or manipulated like that. And I know that Jason and I will walk in to our next meeting, lay our balls out on the table and get what’s right for our son.
But I’m upset that I have to. I’m mad that I have to make these people do what’s right for an eleven year old kid. I’m furious that I’ve been called a liar, my son has been called a liar and incompetent, my husband has been called emotionally abusing, my daughter has been called a troublemaker and the nine other kids in the class have been blamed by this teacher for bad behavior.
It should not come to this. Schools should not blatantly ignore the needs of the child and the help of the parents. The welfare of special needs kids should not be sacrificed for test scores. The system should not reward people for throwing innocents under the bus for their career. We should expect–and demand–more of them.
So please, please learn how to advocate for your child, whether they’re special needs or not. As your kids about what’s going on at school. Know what the signs of something being wrong are and don’t be afraid to say something.
Yeah, you might end up walking into a room full of people you know dislike you and want you out of their hair. But again, you aren’t just standing up for your child because this does NOT happen to one child. This pattern is systematic. They do it again because it has worked before. It has to stop with us, and if they refuse to make that choice we have to.
