Life, Autism, Disability, and More

Monthly Archives: July 2018

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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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.