Life, Autism, Disability, and More

Tag Archives: lack of understanding

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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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. 


Murder is Bad

Do I really need to say this? Apparently, the answer is yes!

I don’t believe I have to write about this.

Again.

Another parent has murdered their child.

Again.

Another person (this time an award-winning autism blogger) questioned “how much a parent who has ‘reached the point of desperation’ can be blamed.”

Again.

I don’t want to be picky about this, but I’m going to have to be.

If you’ve reached your breaking point, get help. If you have to abandon your child to the state and face charges for it, then take that option.

Murder is not an option.

I don’t care that the blogger said that “you have to wonder what happens that an otherwise loving mother can feel like this is the only option or that this is the best option.”

No, you don’t have to wonder. You know – she’s feeling beyond overwhelmed, and she probably has some sort of mental breakdown. I get that. It happens. But even then, it’s murder. And in this case, the murder seems to have been at least partially planned. The mother, on YouTube, said that she was thinking of “pulling a Thelma and Louise” before she tossed her kid off the bridge.

It also doesn’t help when “experts” like Dee Shepherd-Look (a psych professor at California State University) make statements like, “quite frankly, I am surprised this doesn’t happen more often…these children are really unable to be in a reciprocal relationship and the moms don’t really experience the love that comes back from a child.”

What. The. Fuck.

Now, I know that I may be in the lucky group. Simon loves hugs, he loves attention, he interacts (albeit in very limited ways). But even when that interaction and communication was more limited than it is now, I would never consider murder as an option.

Do we also consider murder as an option when someone is deaf? Blind? In any other way impaired? I mean, what is the deciding line for it, in the opinion of this “expert”? Who gets a free pass to kill a child? Because if it’s just when you hit a certain level of frustration, I think every child would probably be dead before the end of their teens.

Murder is not an option.

Autism is not – and should not – be a death sentence.

Oh, and go sign this petition!


Image(First, apologies to the person who did this – I am not trying to insult her in any way or judge her choice.  I just want to offer my viewpoint on her decision.)

Over the summer, I went to a wildlife park with a friend.  I brought my son; she brought her granddaughter.  My son was 11.  Her granddaughter was 5. My son is autistic.  Her granddaughter is typically developing.  She was friendly, she was happy, she really thought it was a great time, and she totally wanted to interact with my son.  But he wasn’t so interested in her.  He wanted to look around, he wanted to take the tram ride, he wanted to pet the reindeer.  He ignored her, though.  He rebuffed her.  She asked questions; he didn’t answer.  She offered him things; he looked at her and didn’t respond.  That’s when I found out that my friend had told her granddaughter that my son was “shy.”  She wasn’t sure how to explain that he was autistic.  Or maybe she wasn’t sure if she should tell him.  Or…well, I don’t know why else she wouldn’t have told her.  Regardless, part of me want to scream and shout.  Part of me felt that I had no right to push the information, though.  It wasn’t my granddaughter.  I couldn’t tell her that her grandmother had lied, and I couldn’t tell her that her grandmother was wrong.  My friend obviously had her reasons.  I just disagreed with them.

Why?

If we don’t tell our children (or grandchildren, as the case might be) about these differences, then we have problems coming in the future and in our present.

But first, let me look back just a few years.  It somehow reminded me of an episode of Quincy.  Yes, Quincy, M.E.  From the 1970s.  1978 to be exact, in the episode “A Test for Living.”  The episode had a small boy who was autistic, and he ruined his sister’s birthday party by his autistic behaviors.  Quincy just happened to know about autism (because, apparently, medical examiners are totally up on the new medical diagnoses in the field), and he went and tried to help the family.  Meanwhile, the family wanted to lock the kid up in an asylum because they couldn’t handle him and he had all these problems.  And Quincy argued for keeping him in the home and helping him because he’d had to do an autopsy on someone else who had been placed in that asylum, also for apparent autism.

What does that have to do with this problem?  Lack of knowledge.  If we don’t tell people about autism, they don’t know about it.  It’s just that simple.  And in this case, it was purposeful and unnecessary ignorance.  The knowledge was had, and it was withheld.  Why would you choose to keep a child in the dark about something that could affect them?  Especially because it did affect her.

Which leads to the second problem – a lack of understanding.  She didn’t understand why he was the way he was.  She really didn’t understand why Simon wouldn’t play with her or talk to her.  She didn’t understand why Simon was sitting there, repeating phrases from television shows, ignoring some of the animals, not looking when I tried to point things out to him, only answering simple questions about the names of animals and other things like that.  She couldn’t understand why he didn’t care if he got to feed the animals or not.

Which then leads to the third problem – a lack of empathy.  If you don’t understand why someone is doing something, or why they *have* to do something, then you don’t feel for them, either.  People understand what having cancer is like.  They feel for those who have it, they feel for the pain they go through, they feel for the treatment and the pain it causes, they feel for all those things.  But if someone didn’t understand what cancer or its treatments were like, how could they have empathy for them?  They couldn’t.  Without understanding, there can’t be empathy.

Which leads to the final problem – bullying.  No knowledge. No understanding. No empathy.  It must be time to bully someone!  Okay, so maybe those aren’t the only things that cause bullying.  Bullying is far too complex to cover in a single paragraph, and it’s far too complex to break down to just a few causes.  And I don’t mean to say that my friend is causing it, either.  Her granddaughter seemed caring and feeling, and I don’t think that she would have made fun of Simon, regardless of her lack of knowledge and understanding.  But I do think that these things do help build that basic framework that leads to more problems and that leads to bullying.

So, in my title, I said “what to do when people lie about your child’s autism.”  Honestly, I don’t know what to do.  My preference is to educate them so that they don’t lie anymore.  Any maybe this blog can be my first step to doing just that…