Life, Autism, Disability, and More

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CC BY-SA 3.0, https://commons.wikimedia.org/w/index.php?curid=67932 I’m always railing about tolerance and support for individuals with autism and their families. So when I got hit by the obvious hammer last night, I felt like the stupidest person in the world.

Simon participates in Special Olympics bowling. He loves it. We love it. It’s awesome.

But two or three years ago, he was on a lane with a teenager who apparently had a few more issues than he did. The teenager first whipped out his penis and started stroking it. Not a big deal to me. Clearly, that was his thing. Okay. The aide with him told him to put it away, and he did.

I guess that bothered him, though, because when they were doing all the opening ceremonies, he reached out and smacked Simon on the top of the head.

Not a little gentle tap, either. A loud THWAP that must have hurt because Simon started crying and freaking out. Couldn’t blame him – a completely surprising smack on the head would probably make me cry and freak out, too.

The teenager was moved away, we comforted Simon, and it looked like the game was going to go on.

Something else happened with the teenager, though, and next thing we knew, he was pulled from the game and his parents were called to come pick him up.

And I thought horrible, horrible thoughts.

At the time, I didn’t think they were horrible thoughts. They were thoughts about defending my son. I was glad the teenager was tossed out. What is wrong with his parents? I thought. Why aren’t they here? Why aren’t they working with him more?

Time for the obvious hammer.

Really, Kate? I asked myself last night as I was thinking back on the bowling day. Really?

The parents (or other caregivers – I had and have no idea about his home life situation) might not have been there for any number of reasons, including the fact that maybe they were just reveling in some time off. No one wants to be a martyr, but it can be hard. It can be tiring. It can be one of those things where a few hours of time off makes all the difference in the world. Maybe they had to work to help pay for his therapy or even just their lives.

For all I knew, they had been working with him. They could have tried therapies, could have tried medications, could have tried psychological care. I didn’t know what they tried. I didn’t know what they had done. He could have been getting 50 hours a week of ABA, and it made no difference. I had no idea.

Why the hell was it okay for me to judge them?

Because, and here’s the super important thing, I DON’T GET TO JUDGE THEM. It doesn’t matter if they’ve done all or none of those things. I don’t need to make excuses. They don’t need to make excuses. Because, let me repeat it again, I DON’T GET TO JUDGE THEM.

It’s super easy to judge. It’s easy to forget that we don’t have that right. Easy to think that we know better, that we’d do better, that we’d be better. But, news flash from the obvious hammer, it’s not our business, and it’s not our right to judge them.

The sad part is how long it took me to realize that I’d been doing it in that situation. I had been proud that, while I tried to offer advice and help and experience, I hadn’t judged without knowing a situation. Fail.

Thanks, obvious hammer!

(To be fair, there are times when judgment is acceptable. A parent killing their child? Judged. A parent who abused their child? Judged. A parent who doesn’t care and neglects their child? Judged. That’s a whole different blog, though…)


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.


Assorted colorful glass marbles arranged over a white background

I haven’t lost them yet…

Because it’s one of those days, I woke up after a really horrible panic attack last night, and I wanted to stay home and take a mental health day.

Because it’s one of those days, I decided that I should go ahead and force myself out of bed and to school.

Because it’s one of those days, I left school early to get coffee and sushi.

Because it’s one of those days, I had forgotten to tell Simon’s teacher that I’d be picking him up early, and so I texted her and warned her.

Because it’s one of those days, Simon (who didn’t know he had a doctor’s appointment) had been telling his teacher that Mom was picking him up to take him to the rodeo.

Because it’s one of those days, I picked up Simon to take him to the doctor for his yearly check-up and his physical for Special Olympics, and he wanted his teacher to see Mom’s black car.

Because it’s one of those days, at the nurse part of the visit, I found out he is only two inches shorter and fifteen pounds lighter than me.

Because it’s one of those days, I didn’t realize that I was jinxing myself when I said, “Wow, he’s never done that before” when he let the nurse take his temperature orally.

Because it’s one of those days, it wasn’t until we went into the room to wait for the doctor that I realized the crotch of his pants had split and his blue underwear was showing through.

Because it’s one of those days, I didn’t have to feel like a bad mother for not noticing his pants had split because it was time for Simon to get changed into a gown.

Because it’s one of the days, the wait for the doctor had been going on for seemingly forever when Simon announced, “I have to go to the bathroom.”

Because it’s one of those days, a second after Simon made the announcement, he began peeing…on the floor…through his underpants and the gown.

Because it’s one of those days, there was a lot of pee. A lot of it. Like the whole floor was covered in it.

Because it’s one of those days, even though I told him to stop peeing, he kept peeing. And peeing. And peeing. And peeing.

Because it’s one of those days, I quickly pulled off his soaked socks, threw some paper towels on the floor, and dragged him to the bathroom to finish peeing (assuming there was any left in him).

Because it’s one of those days, the doctor walked in as I was trying to toss paper towels all over the huge puddle of pee, and I had to warn her not to come into the room very far because in about two steps, she would have slipped and fallen, and that might have been a bad way to start the visit.

Because it’s one of those days, I had to repeatedly explain to the doctor that no, this wasn’t normal behavior, he doesn’t pee on floors everywhere we go, and, honestly, he is pretty well potty trained.

Because it’s one of those days, I had Simon show off by saying dog in four languages (well, five if you include English) to the doctor since I kind of felt I had to prove that he doesn’t just go around peeing on the floors.

Because it’s one of those days, after the doctor left the room to fill out his Special Olympics paperwork and he needed to put his clothes back on, it was full-on meltdown time because he did not, I repeat, did NOT want to go home without underwear.

Because it’s one of those days, it took me a minute to realize that he had to wear his pants WITH THE HOLE IN THE CROTCH without any underwear.

Because it’s one of those days, the whole of pediatrics got to listen to Simon scream, at the top of his lung capacity, that he wanted fresh underwear.

Because it’s one of those days, I considered taking him to Target and just buying some new underwear for him, but then I realized that would mean walking through Target with him in ripped pants and his balls hanging out (literally) while he screamed that he wanted fresh underwear.

Because it’s one of those days, I decided against taking him to Target because we would probably wind up being arrested for public indecency, and I convinced him that we could go straight home and then he would have fresh underwear.

Because it’s one of those days, since we’ve gotten home, I’ve had a hot bubble bath and some Ben & Jerry’s ice cream.

Because it’s one of those days, don’t you judge me.


Disco Dance.  Image by Stuart Miles via freedigitalphotos.net

Disco Dance. Image by Stuart Miles via freedigitalphotos.net

REALLY, I SWEAR, THERE IS NOT A DANCE AT THE HIGH SCHOOL.

THERE IS NO DANCE.

NO DANCE.

NO, NO SPECIAL OLYMPICS DANCE.

REALLY.

STOP LOOKING AT THE CALENDAR. THERE ISN’T A DANCE.

YES, WE WILL TELL YOU WHEN THERE IS A DANCE.

NO, THERE IS NO DANCE RIGHT NOW.

HONEST, THERE ISN’T A DANCE.

NO DANCE.

THERE’S NOTHING TO GET UPSET ABOUT. YOU DON’T NEED TO CRY.

(By the way, there is no dance, at least not yet, but apparently someone has gotten it into his mind that the flyer from yesterday about the parent meeting was about a dance and we are hiding this magic dance from him. Hopefully by tomorrow we can stop repeating ourselves…)


Bowling practice!

Bowling practice!

I know, I know, I just can’t shut up about the whole tolerance thing. But I really can’t. It’s too important.

And I was reminded of that back in December at the tournament for Special Olympics bowling.

It was an interesting morning. We got there on time, found out what lane Simon would be bowling on, and then settled in. Minutes after we got there, the boy sitting next to Simon pulled down his own pants and began masturbating. Whoops. The aide with him stopped him, and the boy sat back down, seemingly okay again. Time for the pledge of allegiance; everyone stood, the pledge ended, and the boy whacked Simon on the head. Hard.

For a second, we thought Simon wasn’t going to respond to it. He will sometimes get hurt, and then ignore it, like a toddler who falls down and only cries if a parent says something about it. This time, though, I think it was too much of a hit, and he started crying and getting upset. Not that anyone can blame him. I mean, if I’m standing there saying the pledge and someone whacked me on the head out of nowhere, I think I’d start crying, too.

The aide with the other boy pulled him away, and promised they would keep him away from Simon. We said fine because, hey, it happens. Patrick went down to the seats and held Simon, trying to calm him, and it took a while, but eventually, Simon seemed to be doing a little better. But he still wanted Patrick down there with him.

Another mother was also down with her son. No one was bothering anyone. No one was complaining. No one was unhappy (except for Simon, who was still getting over the random smack).

Then a different mother came over, looking for a Special Olympics official. She was unhappy because there were parents down with the children – how dare that happen! She asked an open question about why the parents were down there, and I explained what had happened with my son and that my husband was there with permission and good reason.

“Well,” she huffed, “what about the mother down there? Who’s she there for? Why’s she down there?”

I told her I didn’t know, and she continued her mission, finding someone to complain to about the nerve of some parents, and succeeding in getting the other mother removed from the sitting area.

I don’t want to fall back on a favorite saying of a friend of mine, because the saying is completely inappropriate, yet somehow it makes me giggle when I apply it to this situation. The saying? Snitches get stitches.

Really, I don’t think she should get stitches, but I do wonder why she felt the need to police other parents and other children. Aren’t we all in this together? Aren’t we all just trying to get along, get through, get happy? Why would you try to make someone else – and someone else’s special needs child – unhappy? Why?

Now, to be fair, I do understand that she was looking for just that: fairness. She didn’t want anyone getting special treatment. But sometimes the rules, especially for kids with more severe problems, are hard. Not being allowed to have a parent or aide with them can make it very difficult for them to compete. The bowling alley is loud, it’s overwhelming, and it’s very, very busy. The kids need all the support they can get. Yes, you want your kid to win if he or she is the “best,” but what about going with the theme of Special Olympics? If I cannot win, let me be brave in the attempt…