Life, Autism, Disability, and More

Tag Archives: disabilities

Dice with face, question mark, and arrow. Image by Quicksandala via Morguefile.comIn 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?

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republicanNevada republican representative Cresent Hardy is an asshole.

I know, crazy of me to say that a republican is an asshole, but it’s true.

But he’s further along the asshole republican spectrum.

Because, while speaking at a political expo in Vegas, he made an awesome statement:
“…They will not be a drain on society…hopefully they will never have some disability…”

Apparently, his children “…work hard…raising their own families.”

That is so awesome for you, asshole.

I also hope your children never have a disability because then, according to you, they will be a drain on society. And since you’ve already stated that people who need government assistance are “freeloaders,” I can only imagine what will happen if your children need your help.

Will they also be freeloaders and drains on society? Will you decide to abandon them?

What will happen if you need government assistance?

Oh, wait, you already get it.

If we need to talk about someone that’s a drain on society, let’s talk about a politician who earns $174,000 a year as a base salary (and that was in 2014, the last year I could easily find). That low figure covers the 150-ish days a year when they are actually working. It does not cover their benefits package.

The state of Nevada, by contrast, has a median household income of $52,000.

Can we talk about who’s a drain on society now?

 

 

 

 


bowlin1Sixth place out of six, that is. Because sixth place is still worth something.

Don’t get me wrong. I grew up in a world without everyone getting a trophy. You had winners. You had losers. I played basketball (very poorly), and if I was lucky, they would let me in for the last minute or two of the game, when my playing couldn’t affect the final score. I was one of the official bench warmers. And I was okay with that because I knew I wasn’t good at it. But I tried. I didn’t expect a reward for trying. I would skip the award dinners because, well, I wasn’t getting an award, and the dinners weren’t really that great.

But that’s not the same for Simon.

Simon is in Special Olympics. This past Saturday was his bowling tournament.

bowling2In Special Oympics, everyone is included. Everyone plays.

Some of the kids there can’t handle crowds. Some can’t handle waiting. Some can’t handle noise. Some can’t handle sitting still. Some can’t walk. Some can’t speak.

And that’s all okay.

Because it’s Special Olympics.

The pledge they recite before the games begin is always the same:
“Let me Win. But if I Cannot Win, Let Me Be Brave in the Attempt.”

They are all brave.

They push past what makes it hard for them. Some of them wear special noise-cancelling headphones. Some of them roll up in their wheelchairs and push the ball down a ramp. Some of them need to have a coach or assistant down in the bowling area with them. But they do it. And they’re proud of doing it. And they have fun doing it. They have fun being involved. They have fun competing. They have fun knowing that they are being like every other kid out there – win or lose, they are playing.

So Simon got sixth place out of six. And he stood there, tall and proud, while they put the ribbon around his neck. And we stood there, tall and proud and taking pictures, knowing that he made it through another tournament, through all the things that normally would bother him, and through two hour of focus.


Support!  By teerapun via freedigitialphotos.netASAN – for those that don’t know – is an awesome and amazing organization. It’s the Autistic Self Advocacy Network, and if you aren’t following it on Facebook or Twitter and not donating to it, you should be. The reason they are awesome and amazing is that they aren’t just people talking about Autism; they are people with Autism, telling everyone else what they want. It’s not like Autism Speaks (who has no Autistic members in their higher-ups).

So today they posted up a link to an older piece; one called “Understandable.” It’s a hotly debated topic, and one that I’ve read many other articles about, but I think that their fictional piece captures it so much better than all the other things I’ve read.

The basic purpose of the piece is this: it is not “understandable” that parents would murder their children because their children have disabilities. You should not sympathize with parents who murder their children because the children have disabilities. It is not okay when parents murder their children because their children have disabilities.

To break it down to its most basic point: don’t kill people. Don’t kill children. Don’t kill adults. Just don’t fucking kill people.

Now, to get into more of the details of it.

One of the arguments that gets made is that the parents are under stress; they are dealing with issues, and they feel overwhelmed. They worry. They don’t get enough services. They don’t get enough help.

Well join the club. I understand what it feels like to be overwhelmed, what it feels like to wish for more services, what it feels like to wish for more help. Having a child at all is difficult; having a child with a severe disability is difficult, too. But murder is not an option. It shouldn’t even be on the table. No one should think, “Hmmm, this is hard, so I’ll just kill someone to make my life easier.”

Another issue that often comes up in the argument (should there even *be* an argument here??) is that parents worry about the future and what will happen to their disabled child. Again, I understand the worry. I don’t know what Simon will be like at 13…at 14…at 18…at 21. Will we be struggling to pay for him to be in an assisted living community? Will he be living with us? Will he need day care for adults? Will he have a job? A girlfriend? A boyfriend? Who will be there to take care of him when we’re not? All valid concerns, right?

A lot of those concerns are also true of the elderly. They need help, they need care, they can cause a lot of worry to their relatives who want them to have the best possible lives. But how many times do we read about a child killing their parents because of “worry” or “stress” and think, “Hey, I understand. We all might snap if we have to take care of our parents.” Sounds pretty unbelievable, right? If you saw it in the news, you’d be outraged, not “understanding.”

So, again, I’ll repeat the basic point: don’t kill people.