Life, Autism, Disability, and More

Tag Archives: autism

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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Photo by Lisa Fotios on Pexels.com

At Simon’s birthday party, he was showered with one of his favorite presents: books.

So many books.

So, so many books.

Maybe because the law of averages, he managed to get two of the same book. Since one of them had a gift receipt from Wal-Mart, we decided that was the easier one to swap out.

We returned it, and it went nice and smooth and easy. Gave it to them, got a gift card in response.

“Simon,” I said. “You get to buy something new! Do you want a book, a movie, a shirt?”(The list of some of his favorite things.)

“Yes,” he said, and he pointed towards produce.

Having no idea where it was going, I told him that I’d follow him.

He led on.

We walked through the produce and into the bakery. He wandered around it, looking at bread and cupcakes and…

“Are you looking for cookies?” I asked.

“Yes.”

I showed him where the cookies were, and he grabbed the kind he wanted – chocolate chip – and handed them to me.

“Okay, what next?”

He pointed to the back of the store and waited, looking at me.

“I’ll follow you,” I said. “Let’s go.”

And the grand tour of the store followed. We walked to the back. We walked to the side. We walked back to the front. Then to the back. To the other side. To the back again.

Half an hour later, I was getting tired. I convinced him it was time to pay and move on to our next errand.

He agreed, either tired himself or wanting to crack open the container of bakery fresh chocolate chip goodness.

To some people, it might not be a lot. Just a trip to the store.

But it’s more than that.

It’s a trip to the store where Simon gave the directions; where Simon picked out what he wanted to buy; where Simon made the decisions.

It’s Simon advocating for what he wants. Cookies.  


baseball uniform*I might be the only one who remembers hearing this when growing up, so a quick explanation:
Little pitchers have big ears refers to the fact that adults must be careful about what they say within the hearing of children. The saying refers to the large handles (ears) sometimes attached to small vessels.

Now that I’ve forced that random knowledge on you…

Lately, I’ve been trying more and more to get Simon interested in average discussions and conversations. He doesn’t seem to be very interested in communicating more than his needs and wants, but I can’t help but believe that there are plenty of other things he could say if he could figure out how. When we go places in the car, and he’s stuck as my captive audience, I start trying to get him to have a conversation. I’ll ask what color the sky is, and if it’s grey, then I’ll ask him what he thinks that means. Questions like that are easy ones for him to memorize, though, so then I start asking harder questions, questions about what he thinks about and what he sees out the window.

One Saturday morning, he had a baseball game, and that afternoon, I took him to Target.  While we were in the car, I asked him what he was good at.

He said baseball.

I asked what else.

He said math.

I asked what else.

He said basketball.

It was a pretty nice list of things for such an abstract question.  

We went into Target and Starbucks (it’s an addiction! Don’t judge me!), and I told him he was good because he helped push the cart and waited patiently while it took forever for the barista to make my coffee.

When we got home, I thought I’d try to continue the conversation and pull Dad into it.

I asked the question again, and this time he began with baseball, but then said he was good at Logan’s (the restaurant where we ate lunch after the game and where we told him he did good at ordering his own food and then waiting for it to come to the table), and then he said he was also good at Target and Starbucks.

After he had added those in, he went back to the original list including math and basketball.

The point had been made.

Just because he’s a teenager who doesn’t say a lot, he definitely listens and learns. And he has huge ears. 


Beard and mustacheSimon started getting a mustache when he was 12. It was cool, though, because the school district allows mustaches from junior high on. (I’m not sure why.)

Now he’s 15, and he’s starting to get a lot of chin whiskers. It isn’t cool, though, because the school district does not allow beards. (I’m not sure why of this either…)

He seems to be quite fond of his beard, though, because whenever we ask him about shaving it off, no matter how we phrase it, no matter how we introduce the idea, his response is always the same.

No.

Apparently it’s not just his chin hair that’s started the no-ing in his life. It’s also the cafeteria food.

Simon is a grilled cheese connoisseur, and the school cafeteria does not meet his exacting standards when it comes to the proper presentation of grilled cheese.

Two grilled cheese sandwichesTop: Unacceptable. Simon will say no and refuse to take it because there is cheese on top of the bread.

Bottom: Acceptable. The cheese is in its proper configuration and does not cross the plane of the bread.

At home – and restaurants – this doesn’t be a problem, mostly likely (we’re guessing) because there’s not a choice involved. At home, he helps make it himself, and at the restaurant, it’s served to him. No choice to reject it and get a different plate from the line.

Hopefully, going with the flow when there aren’t other options a good sign.

Hopefully, that means that if we present him with a razor (without an option), he’ll decide that there’s no choice there, either.

Hopefully, if that doesn’t work, his high school will be understanding.

And hopefully, if they aren’t, it will be easy enough to create our own religion that requires members to grow beards and eat properly made grilled cheese sandwiches.


Image of Casket by Tony Alter - (CC BY 2.0) - https://creativecommons.org/licenses/by/2.0/On Monday, Simon’s high school had an active shooter drill.

On Tuesday, I got a message that Simon didn’t do well during the drill.

On Wednesday morning, I spoke at length with his school case manager who detailed the problems and changes they’d already started to implement.

On Wednesday afternoon, seventeen students were shot to death at a high school in Florida.

Simon didn’t like the active shooter lockdown drill. He does fine with the tornado drills, but the active shooter one…he couldn’t do it.

He stayed in his seat. He stayed in his seat because it was time for PE, not time to go sit quietly in the corner of a darkened room. He stayed in his seat because he wanted to run around and play basketball in the gym. He stayed in his seat.

He screamed. Loudly. So loudly that one of the vice principals came into the classroom to try to calm him down, but it was too late. He screamed.

He cried. Tears went down his face. He cried.

He stayed in his chair. He could not be quiet.

My mind skipped back to the most depressing show that I had ever seen – the M*A*S*H final episode, “Goodbye, Farewell, and Amen.”

In that finale, Hawkeye has broken down completely and is working with a psychiatrist. He recalls a time on a bus when there were soldiers outside, checking to see if there was anyone on the bus, anyone for them to kill. A woman had a chicken on her lap, and it kept clucking. But then it stopped.

 I found the dialogue for the scene:
Hawkeye: “There’s something wrong with it. It stopped making noise. It just–just stopped. Sh–She killed it! She killed it!”
Sidney: “She killed the chicken?”
Hawkeye: “Oh my God! Oh my God! I didn’t mean for her to kill it. I did not! I–I just wanted it to be quiet! It was–It was a baby! She–She smothered her own baby!”

My mind jumps back to thoughts of Simon at high school, Simon not being able to be quiet when someone wants to kill people.

Simon’s high school is working with him for the next time there is an active shooter drill. They are changing the appearance of his schedule to make it easier for him to deal with changes. They are making sure that there is some sort of computer that he can take into a corner with a set of headphones so that he can be distracted and still stay hidden. All of that is awesome.

Except.

What if it doesn’t work?

What is he stays in his seat?

What if he screams?

What if it’s not a drill?

My imagination runs wild with thoughts I don’t want to have.

Tomorrow is Monday.

Simon goes back to high school. 


elastic jeans - sideshowmom - morguefilesAccording to Disability Scoop, now that Cat & Jack’s accessible clothing line for kids has become popular enough at Target, they’ve decided to expand their line to include adults. To be specific, women. Not men.

This is a problem for us, and most especially for Simon.

Simon is 15. He wears men’s sizes. He needs accessible clothing.

His needs aren’t great. He needs jeans with elastic waistbands, and he needs t-shirts without heavy graphics on them.

The t-shirts we can find.

The jeans? Not happening.

Yes, Tommy Hilfiger has their line of accessible clothing for adults, but, let’s be honest, they aren’t exactly in the same price range as Target, and they are also hard to shop.

Before writing this, I tried to check out the Tommy Hilfiger website for their accessible adult lines. There is a link on the side, but no matter how many times I clicked on links, and no matter how many links I clicked on, I couldn’t find it, so I can’t even provide a price range.

Here’s the thing about the jeans, though – there is nowhere that I can find cool men’s jeans that have an elastic waistband.

Yes, I can buy them online, but the only ones I can find in men’s sizes are geared towards men in nursing homes, and they tend to be less jeans and more khakis. They also tend to be about $50 a pair.

Yes, there are other types of pants that have elastic waistbands. There are sweatpants, there are joggers, and there are those khakis. He can’t wear sweatpants to school, though, and khakis are not 15-year-old friendly. Joggers aren’t bad, but they have the elastic around the ankles, which does not seem to be Simon’s favorite thing.

Now here’s the other things about jeans – women have an entire line of “mom pants” that can be found at almost every department store. They have elastic waistbands. They are comfortable. But they’re styled for women, and they’re designed for a woman’s body. They aren’t styled or designed for a 15 year old boy.

I don’t know why it’s so hard for companies to understand that men with disabilities have the same needs as kids and women. Do they think that men don’t want to look good? Do they believe that men don’t care how they look? Do they not realize that the market is there?

I’m really hoping to see Target branch out as soon as possible, or maybe see another affordable company hit the market. And I really hope it’s soon because it would be nice for Simon to have good, comfortable jeans before he’s out of high school.  


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?