Life, Autism, Disability, and More

Tag Archives: acceptance

keep-calm-it-s-only-an-extra-chromosome-10I’m down with Dear Abby. I know it’s not her, or her sister. Maybe at this point it’s not even her daughter. It might have moved on to a distant cousin that the family only sees at big family reunions and only recognizes because she’s wearing the assigned t-shirt.

Regardless of who’s writing it, however, I was sad to read the letter, and response, that went up on July 15.

The letter reads:
“DEAR ABBY: We have three grandchildren and are due to make our annual visit. Two of the children are easy to plan for, and we have good relationships with them. The third is a 12-year-old boy with Down syndrome, and we struggle with how to deal with him — what to do and what to buy him. Any ideas? — UNSURE IN THE SOUTH”

Part of the response includes:
“The most important thing you can bring with you on your visit is a heart filled with love, and the determination that your grandson will know you love him. Spending one-on-one time together would make him feel special. Every child needs validation and affection on their journey toward adulthood. With the self-confidence it brings, Down syndrome children can live full and happy lives.”

But no.

No. No. No. No. No. No….

There are far bigger issues at stake here.

Why *don’t* you have a good relationship with him?

Why do you struggle with figuring out “how to deal with him”?

Yes, it’s all well and keen and good to bring him “a heart filled with love,” but he’s twelve years old. Where has that heart been for the past twelve years? Where has the relationship been with him for those twelve years? Why is this just a question now? And why would you ask Dear Abby instead of his parents? Or him?

I’m really, really hoping this is a ham-fisted fake letter (not that I suspect that people on staff write the letters at time because that would be dishonest, and it would never happen), but why make it out as if this boy is so different?

“Down syndrome children can live full and happy lives.”

Wow. Really, whoever it is who writes for Abby nowadays? They can?

Knock me over with a feather and tell me it’s a tornado. People with disabilities can actually have full and happy lives? This should not be shocking news to the grandparents, and if it is, then I’m even sadder and angrier for the twelve year old.

I talked to some other parents about this particular letter, and they actually felt that it was moving and touching.

Me? Not so much.

This feels like grandparents who haven’t cared for twelve years – who have been more than happy to be involved in the “easy” kids, but who have not even tried to make a connection with a grandson simply because he is not like the others.

How would you feel as a twelve year old if your grandparents didn’t give you the same time and attention as your siblings?

How would you feel if they couldn’t be bothered to figure out what you liked because it was “difficult”?

They may be trying to make up for it now, but as someone who has absent grandparents for her own son, grandparents that seem to be (and have been) involved with all their other grandchildren and great-grandchildren, this letter is a stark reminder that some family members abandon those with any form of disability or difference that makes them uncomfortable.

If you find this inspiring, I’m very happy for you because it probably means that you haven’t seen this behavior within your own family.

As for me, I find it painful and heartbreaking to think that these “family” members have not been treating one child like the others. I find it a reminder of the pictures I see posted online of family time that doesn’t involve my family. I find it a reminder of all the times we have not been invited to gatherings because “Simon might not be able to deal with the noise.” I find it a reminder of all the times that family members refused to even try to babysit, claiming it was too difficult to even be left alone with Simon while he was asleep.

At this point, we’ve had to give up because getting up our hopes that Simon would be included and accommodated have been dashed so many times that it’s just unhealthy and unrealistic to keep hoping.

So I hope that the grandparents in the letter do something, that they do try, that they do succeed, and that this boy is no longer left out. But after twelve years, I worry that this boy is in the same place that Simon is in.

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What Is EcholaliaA few days ago, we were at the comic book store, and Simon came up to me.

“Should we give the Indians food?” he asked.

For those who don’t know it, he was referring to the really horrible (and really funny, but not in the way they intended) Charlie Brown Mayflower episode.

“Yes, we should feed the Indians. Otherwise they’ll be hungry, right?” I said. I always respond to Simon’s echolalia because…well, why not?

He looked at me like I was an idiot and repeated himself, “Should we give the Indians food?”

I stopped and looked at him.

“Do *you* want food?” I asked.

He nodded. “Yes.”

Score: One for Simon, zero for mom.

This is why echolalia can be so valuable. Simon might not know how to come up to me and tell me that he wants to get food, but he can provide lines from a show that gets to it in a round-about way. And I’m good with that.

Yes, I’d love Simon to be able to communicate perfectly. I’d love for his communication to even be at a four-year-old level where he could straight out say, “Hey, I’m hungry!” But that isn’t happening yet, and that’s okay. At least we’ve been moving in the right direction.

So to everyone who thinks that echolalia is pointless or annoying, I want you to consider all the times that you’ve quoted song lyrics or the Simpsons to get your purpose across. It’s just another form of communication.

 

Charlie Brown Mayflower episode for your viewing pleasure (or pain):
https://www.youtube.com/watch?v=4PZE6SNIIr8

 


25409223 Dishwasher after cleaning processSo there’s been a lot of chatter online about having your kids do chores – “age appropriate chore” charts are popping up all over. At 8, your child can…and at 10, your child can… Except that isn’t always true. Age appropriate isn’t always appropriate. Instead, it really needs to be child appropriate.

In our case, it’s Simon-appropriate.

Yes, Simon has chores. He may only be three or four mentally, but even at three or four, kids can do a whole lot of stuff, especially if you ask them to. He can carry the laundry from the dryer into the bedroom to be folded (although he isn’t good at folding it…yet). He can put his laundry away. He can let the dog back in when she’s in the backyard. He can put his dishes in the sink. He can get out silverware and plates, with some direction.

And recently, we’ve added two new chores to the list. They are animal related. First, he now has to bring the dog’s food dish to the laundry room so that she can get food. Second, he has to refill the animals’ water dish, although we give him the water in a cup so he can just pour it in.

When we started with the water, I was a bit nervous. I wanted him to do it – I prefer to try to push him instead of just keep things at a status quo – but I could just see the water hitting the ground and making the kitchen a slippery mess pretty easily. But imagining it doesn’t make it so any more than not imagining it keeps it from happening. So I filled up the cup, showed him how to kneel down and pour the water, and then stood back and let it go.

He did great. He filled up the water dish, and now if I spot that the bowl had gotten empty, or close to empty, I can fill up the dish and call him over. He comes over, generally happy about it, and fills it up.

Honestly, I think he enjoys having chores to do. For the most part, we let him do his own thing. He watches tv, plays with toys, colors, draws, and does whatever he wants to do. He only ever really gets cranky and tries to refuse when we tell him to put his laundry away, but if we tell him that he has to do it, he may stamp his foot or make noise, but he does it. When it comes to the pets, though, he really likes them, and I think that he likes taking care of them. He pets the cats and the dog, calls them by name, and even named the newest addition (Sammy).

I don’t know if any of this is a sign of how he’ll do when he’s older and ready to transition to the “real world,” but it does make me feel better to see that he can learn to do simple tasks. Who knows? Maybe he’ll wind up cleaning up at a kennel or helping out at a vet’s office. We’ll just have to wait and see…and give him more Simon-appropriate chores to do.


assholeOn the 15th of January, the Daily Mail (which admittedly doesn’t have the highest journalistic standards) published a lovely little piece by a woman name Carol Sarler with the lovely little title “Why can’t we face the truth? Having an autistic child wrecks your life…

Let me just start by saying…wow. Seriously. A big wow.

This piece is written by a woman who *does not* have an autistic child. Nope. She has a friend who has one, though, so, like anyone who has stayed at a Holiday Inn Express, she’s an expert.

She says that “brave and devoted mothers…have clung to the positives brought into their lives by their children” because when one child with autism is born, then “three generations of lives – I include his own – [are] wrecked, for ever, by his cussed condition.” Yep. Thanks for telling me, dear sweet Carol, that my life is now “wrecked.” It’s good to know that I’m “brave and devoted.”

That’s not enough for her, though. She points out that the parents can’t lead a “normal” life – “how many shops – or, indeed, how many customers – are going to tolerate a child who screams, bites, defecates and destroys everything within reach?”

Ah, I love people like this. The assholes. The ones who believe that anyone with any abnormalities should be locked up, hidden away. Let’s not modify ourselves and help those who are in need. Instead, we should force them to leave the public life and hide themselves away. A Kennedy at heart, perhaps?

Carol’s point is that she believes in eugenics. “…As the debate rages over the possibility of a prenatal test for autism, with abortion then optional. And, so far, most of the argument leans towards such a test being undesirable and unethical.” She even goes on and states that she never asked her friend for her opinion because “…it is hard for a mother retrospectively to wish away a living child who, come what may, she loves. But looking on, as a relatively dispassionate observer; looking at the damage done, the absence of hope and the anguish of the poor child himself, do I think that everyone concerned would have been better off if Tom’s had been a life unlived? Unequivocally, yes.”

To her, it seems to a simple equation: she doesn’t want her life to be “ruined” by her friend having a seven-year-old autistic son. And while she claims that their lives are ruined, we never hear from them and we never see their point of view. It’s her points. Her opinions. Her being a total fucking asshole.

Not sorry for the language. It needed to be said.

When people like Carol can go around making statements like this, we’re mere steps away from letting people with disabilities be sterilized or put in camps or killed. Why stop by letting them be removed from the womb before they’re born?

I’d like to ask her how she feels about testing people for other diseases. If we know a child is going to have cancer, should we abort it? Because, you know, why let the parents get attached if the kid is just going to die later? And what about physical abnormalities. Those make people’s lives harder, too. Why should parents be forced to use wheelchairs for their children? Hmmm? Perhaps we should develop a test to help us determine who is most at risk for Alzheimer’s and dementia. Because, you know, those people are also a burden on their families and society as well. Why let them live?

Oh, wait, because we’re not a barbaric society who kills what it doesn’t understand. We don’t destroy for the sake of our own ease. We learn to accept and work with what we’re given in life. We love our fellow men and women. We support those who need support and spend our lives in the service of others, not constantly worrying about ourselves. At least, that’s in an ideal world, right? The kind she wants to create through hatred and fear, not love and compassion.

 

 

 


Respect-BannerDon’t get me wrong, I know that I’m going to find insensitive people just about everywhere. But I didn’t expect to find them in out-patient therapy. (If you want to know why I’m currently in out-patient therapy, you can check out my other blog about my mental issues…)

Anyway, so the other day in therapy, while she was talking, one of the other women – let’s call her Zelda – said that her brother was Autistic, and he was around her age. She’s about 60, ready to retire, and he’s living at home with their parents still. She pointed out that, at the time, they didn’t have much they could do to help him, but she felt like it was better now. She commented that he was the family’s project. I thought about talking to her then, but I decided against it.

So the topic was put to bed, and no one else talked about it…until…

Something came up, and she asked me, before therapy started, about whether or not I had any children. Of course, I said, yes, I have a son, he’s 13, and he’s Autistic. Zelda asked a few questions, and when I explained that he was fairly moderate to severe on the spectrum, she said, “Oh, that’s bad.”

“No, it’s not,” I corrected her. “It’s not bad at all. It’s just what he is.”

She back-pedaled. She didn’t mean it *that* way, you know. She was only trying to say that she knew it was hard. Okay, I’ll take that. It’s hard on him. It’s hard on us. It’s hard on his teachers. It is hard. But it’s not bad.

Which might be why I was already in the fight-or-flight mode when another woman, let’s call her Aileen, said that she was there because of anxiety and her family. Her family drove her crazy, she said. They wouldn’t leave her alone. Even when she tried to take a walk by herself, they wanted to come with her.

“It’s so retarded.”

Yup. She said that. About the fact that her family wanted to be around her all the time.

Now, don’t get me wrong – I’m not saying that they’re stupid for wanting to be around her all the time. But I do think she’s pretty uninformed to use the r-word in a psych setting.

But no one said anything. Not even the therapist leading the session.

Because I’m not one to shy away from confrontation when it’s appropriate, I went ahead and raised my hand.

“Hey,” I said, “I’m sure you didn’t mean it this way, but, see, I’m part of this movement. Spread the word to end the word.  The word is retarded. I know you just said it, but that’s kind of the problem. It’s pretty insulting to use it as an insult. My son has intellectual disabilities, and so I’m kind of sensitive to hearing it…”

I know I said more than that, and she looked a bit surprised.

I brought up the need to be respectful of all people, and I pointed out how if she was had said something that insulted another group of people, I still would have brought it up because it is disrespectful to insult anyone, especially if they’re not there to defend themselves.

She was cool with it. She apologized, said she hadn’t meant it that way, and said that she normally tries to be careful because she had a cousin with…and she stumbled over it (because I guessed she hadn’t heard it before)…intellectual disabilities.

And then the therapist got involved and made sure that she was okay with me calling her out and asked if I often did that, and I said that, yes, yes, I did. All the time. Because it was important to realize that insulting people because of their disabilities was not okay, and like none of us would like it if we were turned into negative slang, we shouldn’t do it to other people.

I hadn’t expected to have to defend myself, or my correction of someone who used a word as an insult, but there you go. You never know when – or if – you’re going to have to speak up. So don’t be shy. If someone says it, tell them.

Spread the word to end the word.


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.


Local Challenger League teams - Simon's in the middle!

Local Challenger League teams – Simon’s in the middle!

This is Simon’s second season/second year with the Heroes here in League City. It’s part of the Challenger League, a special needs Little League baseball thingy.

Here’s why it’s awesome: it’s normally one of the most relaxed ways of playing games.

Simon’s game today was at 10 a.m. Which was only a slight problem because we were out at a late movie last night, and so we set the alarm to get up in time to make it to his game on time. But then one of us (ahem, Patrick) reset the alarm when it went off without realizing it, and so we slept a bit more than we meant to.

We woke up at 10 a.m.

Whoops.

But we got Simon ready – he was totally up for it because most of the season got cancelled because of all the rain we’ve been having lately. And we got there less than half an hour late.

The game was already underway, but they got Simon slipped into the batting line-up.

Because we were late, he only got to play one and a half innings (instead of two), but he was still happy enough.

The best part, though, wasn’t even his playing.

The best part was that, near the very end of the game, during Simon’s team last at-bat, the last chance to bat, one of the other team’s players decided that he did want to bat after all. Apparently he hadn’t wanted to go during his team’s turn, but he changed his mind.

So he came up and hit.

Because why not?

Everyone had a good game. Everyone had fun. And then there was ice cream afterwards.

Only one game left this season. Hoping the weather doesn’t knock it out of the park.