I try to stay optimistic about the progress we’re making with Squeaker, but the reality is that we often feel like we’re spinning our wheels.
There are people who don’t see him often who look at him and say, “Oh, he’s doing fine.” I usually just smile and nod. I keep a tight lip on the reality of the situation. And the reality is that they don’t have a clue what they’re talking about. Seeing my child at a glance at a moment in time where we’ve got everything under control, the stars have aligned, and he’s doing exactly what he wants to do, he’s awesome. His behavior is perfect. He’s happy. I’ve tricked myself into thinking, in those moments, that we’re doing a fabulous job with him.
Look at how good we’ve become at managing his quirks…
But then there are these situations that come up, like the people at the summer camp we’re trying to get him into asking me questions about his behavior, his ability to understand questions, and his self-help skills. “Is he high functioning?” I wonder after these conversations. Because that’s why they were asking the questions. To see if he could go to a high functioning autism camp. I guess we passed the test because they didn’t say we didn’t.
And then they’re Monday, when we had our re-evaluation to change his category on his IEP from “developmental delay” to “autism.” The gravity of the situation hit me like a ton of bricks. I look at him in the evenings, after dinner, when he’s calmed down and he’s sitting in my lap and we’re playing Angry Birds on my phone, and everything’s cool. He’s awesome. And then I look at him when I’m at my friend’s house and he’s telling her daughter to get away from him, and he’s biting himself because “he” (the girl) got less than 3 feet away from him and I feel bad. I feel bad for the little girl, who wants to play with my son and is getting rejected over and over again. I feel bad for my son because he’s unhappy. And, let’s be honest, I also feel bad for myself because I’ve got no clue how to make it better. But even in those moments, I can’t help but wonder if he just puts on his huge show for us and us alone. This is a big production, right? He does better at preschool, right? I mean, he bites himself there and I get notes that he has “difficult” mornings, but surely he’s better than the other kids. And I don’t ask about the other kids because, honestly, it’s not relevant.
So we sit in this meeting and we talk about why it’s appropriate to change his category to “autism” for educational reasons. And we discuss his progress in speech. Receptive language is a “relative strength” for him, which I know means that it’s not really something he’s AWESOME at, but that, in relation to his other skill sets, he’s much better at it. Expressive language is difficult. He still can’t answer questions. He still can’t reliably tell us what he’s done during the day (even Speech noted that, so I know it’s not just at home, which I’ve often wondered about). He repeats back the last half of questions he doesn’t understand (almost all of them), and I laugh when she says that many of his answers to questions were, “they’re the same” because he’s very into things being “the same” lately. It’s totally adorable that he gets excited about things being the same, but he’s not always accurate. Articulation is good at the level of single-letter sounds, but he’s still unintelligible much of the time (to them) when he puts words together in sentences.
OT has made very little progress with him. Basically, he’s gone from not being able to hold scissors appropriately and not cutting anything at all to holding them appropriately with cues, being reminded to hold the paper when he’s cutting it every time, and being able to cut a 3-inch straight line with reminders. He’s gone from holding a writing utensil in his fist to almost holding it correctly. He still can’t reproduce a true circle, draw a cross, or trace. He still can’t button or zip things on his own. And I didn’t ask, but have to wonder if he tells OT to do it herself.
Behaviorally…well, he responds “inappropriately” when he’s upset. He doesn’t calm easily, and certainly doesn’t calm down on his own. The behavior we see at home is duplicated at school. And the sensory profile indicated that he’s having difficulty regulating his sensory responses. He’s either extremely overactive or lethargic. He’s constantly seeking stimulus. So it’s possible that his behavior issues are related to the sensory problems.
And I won’t even go into the depths of the potty-training issues and how much he doesn’t care about soiling himself.
I’ve only touched on the information we received here because I don’t have the paperwork with me, but it is overwhelming to get all the information at once. To hear all of the things we still need to work on and know that we still have such a long way to go. I was proud of myself because I only shed a single tear during the meeting. Truth be told, it hurts to hear that your child needs help. It hurts more to hear that even with help, your child isn’t making much progress. I’ve been thinking all this time that he’s made so much progress, but it seems so miniscule now that I’ve looked at the numbers.
It’s scary to think that next year, he will be in Kindergarten and we haven’t yet figured out how to control these behaviors. He’s five years old and it’s more like he’s 3 years old in many ways. I’m scared for him because there are kids out there who aren’t very nice. I want him to be with typically developing peers, but they won’t understand him. I can only pray that their parents have taught them that everyone is different and deserving of respectful behavior. I can only hope that, throughout his educational journey, he gets understanding teachers.
In the meantime, we try to find solutions to work around those things that he has no control over. I look forward to trying out the “Sensory Diet” that OT is going to prescribe at home. And to Speech helping us come up with effective visuals to help us with transitions at home. I’m working with the professionals so that we can do the same things at home that they’re doing at school. And once again, I’m left hoping that these strategies will be the ones that help. For him, for us, for his brother…I’m hoping that we can figure out what works. Because as much as some people think that children with autism should still be expected to behave the same way and be treated the same as children who aren’t on the spectrum, the truth is that you can only beat your head against the wall so many times before you get a headache. Disciplining him the same way we would a typical child doesn’t work. Reasoning doesn’t work because he doesn’t understand the language.
Until we try something different, we’re going to continue to hit the wall. Frankly, I’m tired of the wall. And I’m sure that if Squeaker could verbalize what he’s feeling, he’d say the same. This is our reality.
What is your reality?
Originally posted 2012-02-29 12:00:00.