None of them.
Don’t pick your battles at all.
Just focus on the end of the war.
Last week was Thanksgiving vacation, so I didn’t get a chance to post this then. Fortunately(?), the schools give the kids the entire week off. Yup. Monday through Friday. No school.
For some people, that might be awesome. Their kids might be thrilled by not having to go to school. And that’s great for them.
But it’s not so great for Simon.
Simon loves school. Anytime there’s a day off, he gets upset. He wants to go. He gets frustrated with staying home, but he also gets upset if we try to work on any school work at home.
This week was no different than any other vacation. By day two, he was asking to go to ESY. (ESY is extended school year, something he qualifies for over the summer. It’s a shortened day/shortened week for a few weeks to help keep him from regressing…and as you might guess, he loves it, too.)
It was going to be a week long war.
So I didn’t bother fighting. There was no need to wade into battle. I decided that I would just work towards the end of the war.
When he said he would go to ESY, I agreed, but told him that it was in summer. I asked if it was the summer. He said no. He knew it was Thanksgiving vacation, so we talked about how ESY was during summer vacation. I think we talked about that a few dozen times a day.
We tried to go someplace fun every day. For Simon, Target qualifies as fun. HEB qualifies as fun. The Dollar Tree qualifies as fun. Basically, if it’s not home, it’s fun.
One day we went down to the island to have lunch with a friend, and then we went to the rainforest and aquarium exhibits. Beyond fun. He had a great time. Then we stopped by a Target…and that was it. We weren’t allowed to leave Target. The only way we got out was when I promised we could go to other stores. We had to hit up a Dollar Tree on the way home, where he picked out a squishy toy to play with.
We survived because I did the easy thing – I didn’t make it a battle. Because why create battles when you don’t need them?
Now Christmas break is coming up in a few weeks, and guess what? It’s not a battle, either. It’s an all-out three week war. Here’s to hoping we all make it.
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?