Life, Autism, Disability, and More

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Simon standing next to cookie doughOne – Mom buys cookie dough at the store.

Two – Mom offers to make cookies.

Three – Mom puts the piece of cookie dough on the cookie sheet.

Four – Mom bakes the cookies.

Five – Simon waits for the cookies to cool (slightly).simon with baked cookies

Six – Simon eats the cookies until he’s told that he needs to eat something healthy before he can have any more.

Seven – Mom cuts up an apple or peach or banana.

Eight – Simon eats the fruit.

Nine – Simon eats more cookies.

Ten – Mom hides the cookies in the microwacookies3ve to keep the cats from licking them or knocking them down for the dogs to eat. 

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The Safety Dance - Image by BrandTK @ DeviantArtSometimes I torture my son.

No, not like that!

It’s torture because he’s a teenager, and I’m his mom, and everything I do is automatically uncool and annoying.

The other day, he was wandering through the house, singing, “We can dance. We can dance.”

That same line, over and over and over.

So I chimed in.

“You can dance if we want to. You can leave your friends behind…”

He gave me a look that told me how much I could dance.

“’Cause your friends don’t dance, and if they don’t dance, well they’re no friends of mine.”

“No.”

“We can dance, we can dance –“

“No.”

“But it’s the safety dance!” I protested.

“No!”

My singing – and dancing – were seriously rejected. He abandoned me in the kitchen and went back out into the living room.

I heard him singing, “We can dance,” but it was quieter, almost like he was trying to make sure I didn’t hear him and join in.

I am officially uncool and annoying.

But I can dance if I want to.


building ceiling classroom daylight

Photo by Pixabay on Pexels.com

I just wrote a blog about this exact same situation, and now, within a week, there are at least two more heavily reported incidents. Keep in mind that those are “heavily reported” incidents. There is no way of knowing how many incidents never made national news, how many were never discovered, and how many were brushed under the carpet.

Now, I began outlining this blog before I read about the second incident, but much of what I want to say applies to both situations.

In the first situation, a teacher’s aide broke a student’s arm.

In the second situation, a teacher shoved a student. (The teacher denies it, saying that she might have accidentally brushed the student with her elbow, but the video apparently shows her shoving him, and she also then fought with another teacher about the phone she had confiscated from the student.)

That said –

Reasonable people know not to break someone’s arm. It isn’t something that we do that surprising. It takes force. It takes effort.

To work in a special education setting, you must go through training and certification. Yes, the teacher receives far more training, but the aides must also get a certificate.

If someone “accidentally” broke a student’s arm in a general education class, it would be considered unbelievable. Because it doesn’t seem to happen. If a teacher can avoid breaking a student’s arm in a general education classroom, why can’t a teacher’s aide avoid breaking a student’s arm in a self-contained special education classroom?

Many student in self-contained classrooms are there because of behavior issues and other problems that would make it difficult for them to learn in another setting. But the people working with them in the classroom know who their students will be. They know that the students will need extra help and redirection. The people who work in those classrooms choose to work in those classrooms. And, again, they are certified to do so.

Also, keep in mind that it’s not like only special education students refuse to listen or cause trouble in their classrooms. I think anyone who has been in any middle school, junior high, or high school can attest to the idea that there is never a class that is perfect. In these classroom settings, would you still find a way to excuse it? Would you say, “well, it was obviously an accident” or “this is a good chance to provide more education [for the person who committed the crime]?”

While I can provide many reasons why the students may have failed to comply with what their teachers and teacher’s aides may have requested, I have no included them in this blog because *none* of those reasons are an excuse that can make their actions acceptable.

It is a crime, and it needs to be treated as one. 


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.


nature sky bird holiday

Photo by Pixabay on Pexels.com

I’ve written before about Simon’s serious aversion to birds, and I still agree with it – birds can be super creepy.

When the weather comes in around here, suddenly the parking lots are filled with not only big black grackles (which terrify him if they get too close), but also with sea gulls.

This makes it hard to walk through a full parking lot. All the birds swooping, crying out, and even landing on cars or lights can make Simon panic. He’s gotten a lot better, and now he’s prone to say, “Shoo birds!” whenever he notices one anywhere nearby.

But it still makes it hard to walk through a full parking lot.

It was one of those weather-coming-in days when Simon and I went to the grocery store.

Simon has an accessible parking tag for situations like this, and I was going to use it.

The parking lot was huge, and I knew that trying to get from the end of the lot to the front door was going to involve a lot of ducking, dodging, and potential freaking out on Simon’s part. There was no reason for him to lose control on the way to the store, and especially no reason for him to risk in engaging in a dangerous behavior like running in front of a car if a bird got too close.

It seemed that all the accessible spots were taken, so I did a few circles around the parking lot.

Then I spotted it – a car with Georgia plates sitting right there in one of the accessible spots.

No marking on the plate.

No tag hanging inside the windshield.

Sure, it was possible that they had forgotten to hang their tag in the front window, but it was just as possible that they had decided it was too hot and they didn’t want to walk or they were assholes who didn’t care.

Because of that, I want to put this out there – please, please, please DO NOT park in a spot unless you are actually authorized to park there.

People might see Simon and think, “well, he doesn’t have a *physical* disability so he doesn’t need it,” but that ignores the safety issue. Being able to walk is a plus, but walking in front of a car because of fear and lack of safety awareness…not a plus.

We did manage to park somewhat close to the accessible parking, and Simon clung to my arm while we told the birds to shoo.

Good shopping trip, but, as we came out, the Georgia car was still there, taking up a spot that they may or may not have been authorized – or needed – to use.

We had one more errands to run, and when we got to that store, there was an accessible spot right up in the front, so we snagged it and went in. The spot was attached to the zebra crossing, and we could walk right up to the door without having to walk in the parking lot itself, making it a lot safer and easier.

Coming out, I was thankful that we’d been able to avoid the dangers that go along with those evil birds.

A formation flew overhead, and I pointed to them.

“See, Simon? It’s okay. They’re not bothering us!”

And that’s when one of the evil birds shit on the front of my tank top.

Evil, evil, evil birds.


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.