Sometimes I torture my son.
No, not like that!
It’s torture because he’s a teenager, and I’m his mom, and everything I do is automatically uncool and annoying.
The other day, he was wandering through the house, singing, “We can dance. We can dance.”
That same line, over and over and over.
So I chimed in.
“You can dance if we want to. You can leave your friends behind…”
He gave me a look that told me how much I could dance.
“’Cause your friends don’t dance, and if they don’t dance, well they’re no friends of mine.”
“We can dance, we can dance –“
“But it’s the safety dance!” I protested.
My singing – and dancing – were seriously rejected. He abandoned me in the kitchen and went back out into the living room.
I heard him singing, “We can dance,” but it was quieter, almost like he was trying to make sure I didn’t hear him and join in.
I am officially uncool and annoying.
But I can dance if I want to.
Simon came home from school happy about school, which is his normal status about school.
School is an amazing place, or at least he thinks that while he’s at home. (While he’s at school, it’s often a different matter and he can get mad at things not happening on schedule or teachers not being there.)
But today, it was happiness.
From the moment he got off the bus, he said school was fun.
I asked what he did at school. “Fun,” he said.
I asked again, emphasis on “what” he did…
“What did you learn about?”
Okay, maybe that’s actually a “where” response, but close enough that I’ll take it.
These feelings about school didn’t fade away. He ran through his usual “script” about going to school and when he goes back to school (tomorrow morning).
But that wasn’t enough today. He kept repeating himself and wanting me to repeat it back to him.
So I came up with a social story on the fly and told it to him.
“In the morning, you wake up, then you get dressed, then you eat breakfast, then you get on the bus, and then you get to school.” I held up a finger for each step, numbering them one through five.
He nodded along, so I went for the repetition.
“What do you do first?” [One finger held up]
“Then what?” [Two fingers held up]
“And then?” [Three fingers held up]
“And next?” [Four fingers held up]
“Take the bus.”
“And what’s the last step?” [All five fingers held up]
“Get to school.”
“Do you feel better now?”
“Great, so can you please get out of the bathroom? Because I kind of need some privacy now.”
In fact, you might say I’m…wait for it….waaaaiiiiitttttt fooooorrrrr iiiiiitttttt…speechless!
Except, of course, I’m clearly not. I’m actually full of speech. Bursting with speech!
I’m referring to the issue with the third and fourth episodes in the second season, the ones that deal with parents showing up and wanting aides for their kids. Looking beyond all the major issues (funding, having aides that are full-time outside school, and all the other nonsense that makes for good TV), this particular issue completely stopped me.
Because, and this is the thing, one-on-one aides should not be the goal of every special needs parent.
First – they teach learned helplessness. Having a full-time aide, when they’re not absolutely necessary, means that the individual will have a harder time learning self-reliance and how to adapt to situations. Think about it this way: if you never had the opportunity or urge to do something because someone else would always do it for you, and possibly quicker or better than you could, would you do it? Maybe eventually, right? And what if they also made it clear to you through their actions (or even their words) that you would not be able to do that? That you cannot do it. That you should rely on them.
My son ran into this issue at school. He had been doing fine getting onto the bus after school by himself. He knew the routine, and he’d run through it without any sort of incident. Then his teacher had to start coming out with a new student. He went from capable to reliant on help in just a few days. Instead of getting on the bus by himself, he waited for her to tell him what to do, and he would want help doing it. She had to fade back out to get him to start getting on the bus again by himself, and once she faded out, he was fine doing it without help.
Second – they teach reliance on and a connection to a single person, who is paid to be near them. At a recent training session I attended, we were asked to look at the people who are around ourselves and our loved ones with disabilities. In many cases, those with disabilities are surrounded not by friends and loved ones, but by those who are paid to be near them – often nurses, therapists, aides, and other types of caregivers. Those very people, though, aren’t going to stick around too often or for too long. They do what they do because it’s a job. Yes, they probably care about the people they care for, but it’s still a job. When the money runs out or when something changes in their life, they will probably go on to pursue other options. They care, but it’s not the same kind of care that you find from someone who chooses to care.
Plus, when the caregiver leaves, they might be taking all that knowledge about the person with them. If the caregiver is a single point of contact, and they leave, then the person with a disability has been abandoned. They have been left alone. The one person who was with them is gone. If they had any sort of emotional attachment, it is severed, and it might have been severed quickly and with no regard to any of those feelings.
Third – they teach other people to stay separate or apart from the person being helped by the aide. Instead of the person being able to directly interact with the people around them, instead of them being able to learn how to communicate with others (and teach others to communicate with them), an artificial wall has been erected. In a school setting, students aren’t as likely to approach another student if they have to go through an adult to get to them. In a real-world setting, if a person will disabilities is kept apart from others through that aide, how will the person ever get to know anyone else? If they aren’t allowed to communicate, how will they make friends? How will they develop their own community?
When my son was younger, we thought having a one-on-one aide was the best solution for him. We’d heard so many good things about it, mostly the types of things that appeared on Speechless when it was time for all the parents to ask for an aide. Aides are the best! Aides will give your child everything they need! Aides are what make education successful!
I’m glad that our ARD committee decided against it. It wouldn’t have been a good thing our son. He wouldn’t have benefitted from him. Sure, maybe it would have made it easier for us and for him in the short run, but now he’s 15, and I’m able to look back and know that it would have been a mistake.
Speechless normally does a good job showing JJ avoiding learned helplessness. He makes friends who can lend a hand, like getting him drunk at a party. He tackles emergencies, like when he went camping with his father and had to make it to a far-away ranger station to rescue his father who is stuck in a bathroom. He attends a summer camp and participates in typical teenager hijinks. He’s an average, everyday teen who just happens to be in a wheelchair and need help communicating. Isn’t that the goal?
My way of sharing, with you, the thoughts, ideas, and experiences that we have in our life with our son.
Spend the month of April reading the highlights of my days (and sometimes nights).
Today I did something to make me feel like a bad mother.
I had class all day, and Simon had SIRE horseback riding tonight.
But this week has been a crazy week, I’m still trying to catch up from being sick and then going to College Station for business…basically I’m behind on everything. I haven’t written blogs, fiction, articles. I haven’t listed jewelry and books. I haven’t made jewelry and books. It’s been nothing but trying to get through each day. Obviously, a bit of a problem.
I didn’t go to his horseback riding.
I came home from school (after they’d already left), and I settled in, trying to move all my stuff off the counters, organize things from my trip, and, of course, do lots of writing. Like this blog.
Every time I miss one of Simon’s events or activities, though, I feel guilty. And I already missed his gymnastics class this week because I had a meeting at the exact same time.
Just a few minutes ago, he came home. He was happy, he was excited, he wanted a hug, and when I asked him if he had fun, he said yes.
My guilt? Totally pointless. He had gotten everything he wanted.
I know that lots of parents would probably feel guilty in the same situation, but would I feel as guilty if he was a typically developing kid?
Would I spend all this time beating myself up for “missing out” on things where he doesn’t even really care if I’m there to begin with? (Because, let me tell you, when it comes time to go horseback riding, I don’t even rank in the top three important things in his life. Number one is the horse. Number two is also the horse. Number three is still the horse. His parents? Yeah, we might come in around number nine or 10…)
Tomorrow is, of course, another day. April 2. Autism Awareness Day (as part of Autism Awareness Month). Please be sure to check back, and please don’t ‘Light it Up Blue.’ Walk in Red instead!