Life, Autism, Disability, and More

Tag Archives: down syndrome

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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Lately, Simon has been on a Christmas movie kick. He watches “Christmas Eve on Sesame Street” (one of my favorites), “Elmo’s World: Happy Holidays” (not one of my favorites), and “Rudolph the Red-Nosed Reindeer.”

I have nothing against Rudolph, except…well, the messagesimon with mom - small is a bit disturbing. Rudolph is forced to fit in – to literally cover up who he is and what he is (by donning a black cap over his red nose). And when it’s revealed that he’s not “normal,” i.e. not like all the other reindeer, then he’s shunned and kept from participating in society.

Until, of course, Santa needs him.

Then suddenly his difference is worthwhile and acceptable. More than acceptable, really. It’s something to celebrate! Go different people! (But only if that difference it helpful and benefits us!)

How is that any different than what Richard Dawkins said in his tweet when he declared that only some people with disabilities shouldn’t be selectively weeded out through eugenics?

Haven’t heard about it? Here’s a little piece from Huffington Post

Dawkins tweeted that if someone found out that their fetus had Down Syndrome, they should “abort it and try again. It would be immoral to bring it into the world if you have the choice.”

When someone brought up the Autism spectrum, he said, “People on that spectrum have a great deal to contribute. Maybe even an enhanced ability in some respect. DS not enhanced.”

Seriously? Seriously? We get to decide which disabilities should be allowed and which ones shouldn’t? And what about people on the spectrum who do not have “enhanced” abilities? What about people who are more severe on the spectrum and need help to live?

Dawkins says that he thinks that there’s a “profound moral difference” between deciding to abort a fetus and stating that “this person should have been aborted years ago,” but I struggle to see the difference. Is his position that, once the person is born, then it’s okay to deal with the disability, but if it’s known, we should avoid it? What about physical disabilities? What about being an asshole? When will we get a pre-natal test for assholes?

(Please do not take this blog as any sort of stance on abortion as a whole…this is purely about eugenics and those who believe that we should chose who lives and dies based on their perceived value to society…)