Life, Autism, Disability, and More

Category Archives: Commentary

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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horsebackNot too long ago, we decided to start getting regular babysitting, and we picked my father’s step-granddaughter.

She seemed nice and responsible when we met her, but I wanted to get some more info on her, so I called my father.

He talked about her and about her son. He went on and on about how awesome his step-great-grandson is. So smart! So clever! So talented! This little boy was the best little boy in the whole history of little boys!

I stopped my father.

“What do you brag about when you talk about Simon?”

“Um.”

Pause.

Serious pause.

Pregnant pause.

Too long a pause.

“Simon’s very special.”

Very special.

Wow.

He didn’t think to brag about Simon’s memory.

He didn’t think to brag about Simon’s smile.

He didn’t think to brag about how everyone who meets Simon loves him and remembers him for years afterward.

He didn’t think to brag about how much Simon likes to read (and how he taught himself to read).

He didn’t think to brag about how good Simon is at horseback riding, bowling, or baseball.

He didn’t think to brag about the how Simon taught himself to float and swim.

Clearly, there’s very little to brag about when it comes to his grandson.

Maybe I should make him a list.


pool

No, this isn’t the same pool. But isn’t it pretty??

I belong to many, many, many, many, many (keep going with that for a while) groups that talk about ASD and other disabilities. In one group, a mom posted something that I couldn’t help but disagree with, yet a lot of the other parents in the group chimed in on her side. So I just had to say this:

It might be a reason, but it’s not an excuse.

Let me tell you the story she shared.

The mom, her boyfriend, and her child went to a pool. The mom decided to chill out at the adult pool – who could blame her? – while boyfriend took the child to the kids’ pool.

The child is five years old, but she is at the level of a two or three year old.

With that in mind, the boyfriend is in the kiddie pool with her, and she throws in a toy. He turns to get the toy, and before he can turn back, he hears another splash.

The child had reached outside the pool, grabbed someone’s video camera, and tossed it into the pool.

Whoops.

The woman whose camera it was freaked out. She got upset and told the boyfriend that they had to make it right because she just bought the camera, and it was $500.

The boyfriend directed her to the mom.

The mom was outraged. “My daughter didn’t understand what she did,” the mom argued.

The woman argued that the mom’s daughter had destroyed it, and the mom should make it right.

The mom said that she would not, and if the woman was going to “be like that,” she better call the cops.

The woman did call the cops. The cops took a report, but they said that it was a civil matter, and it would have to be settled in small claims court.

The mom took to the forum to report this travesty, and a lot of the responses were in favor of the mom, saying that she did the right thing and hoping that the small claims court would rule in her favor.

Me? I didn’t say anything there because I knew I was outnumbered and wouldn’t be paid attention to anyway. But I still wanted to say something, so here it is.

Your child’s disability is a reason, but not an excuse.

Simon is autistic and intellectually disabled. Could he do something like that? Yes. What would I do about it? Be a proper parent and take the responsibility for my child’s action because, well, I’m responsible for him! Just because the child doesn’t know better doesn’t mean the adult doesn’t. If she had been there with a neurotypical two year old, would she have taken the responsibility?

Now, I understand. Having Simon home all day every day over the summer is rough, on him and on me. There were plenty of days when I wouldn’t mind taking a little break and having someone else be on duty. (And, to be fair, I did get days with someone else on duty.) I understand why she wanted some alone time at the adult pool. And I understand that the boyfriend couldn’t be on top of the child at all times. It’s just not possible. That’s how kids manage to do so many awesome and dangerous and messy things.

But that doesn’t mean you’re not responsible for them.

 


open carry

Open carry at the store this morning

I’m not here to argue Second Amendment rights. Please don’t even bother responding if that’s what you want to talk about.

What I want to have a conversation about is a problem that seems to have been missed by so many people when they consider the option of open carry.

But first, let me tell you a story about something that happened many years ago.

We were at a park up in Houston. There was another mother there – one that I realized quickly also had an Autistic child. Her child, though, was probably about 15, and he might have had other issues besides just Autism.

Simon was young enough that he was still in diapers throughout the day, and when we got to the park, I had done a quick diaper change because he was too wet to get through the afternoon, and the bathrooms were far away. I had folded up the diaper and put it in a bag, but the teenager spotted it and knew what it was. He lunged for it before his mom could stop him, and he tried to grab it. He had an issue, one that I’ve heard of more since then, in that he would try to eat diapers.

The other mother got aggravated and asked me to throw it away quickly as she tried to control her son.

At the time, my only thoughts were about how hard it was to be her, to try to wrestle with a boy that was bigger than her, and how I wished that Simon would turn out to be more functional and without any weird eating habits. It was, to me, a moment of concern.

Now, though, the story in my mind has a different point.

What if that teenager liked toy guns – or any guns – and didn’t understand that he shouldn’t touch them if they were other people’s?

Plenty of kids and teenagers without disabilities might have a problem keeping their hands to themselves, but they can be taught and understand things.

Some kids on the spectrum – or with other disabilities – may not reach that point. Having someone walk around with a gun on their hip, a gun that they may feel the need to reach for if someone else goes for it…well, it worries me. I know that if Simon reaches for one, it’s because he doesn’t know what it is, and he doesn’t know what it will do. But all it takes is for someone with a quick trigger finger to feel threatened, and we’re in a shooting situation.

So, please, if you open carry, realize that there are kids and teens and adults out there with disabilities. They aren’t threatening you if they reach towards you. And if you feel that they are, well, that’s a problem I can’t help you with.


Vigil.  Image by George Stojkovic via freedigitalphotos.net

Vigil. Image by George Stojkovic via freedigitalphotos.net

According to dictionary.com, filicide is

  1. a person who kills his or her son or daughter
  2. the act of killing one’s son or daughter

ASAN, the Autistic Self Advocacy Network, is offering an anti-filicide toolkit. It’s both horrifying and necessary. In fact, according to ASAN, since 2010, more than 70 people have been murdered by their parents.

“A parent kills their disabled child. The media portrays these murders as justifiable and inevitable due to the “burden” of having a disabled person in the family. If the parent stands trial, they are given sympathy and comparatively lighter sentences, if they are sentenced at all. The victims are disregarded, blamed for their own murder at the hands of the person they should have been able to trust the most, and ultimately forgotten.”

The advice in the toolkit is extremely helpful, but it’s also extremely sad. The fact that people have to be told that they should condemn the murder and mourn the victim…that it’s bad to imply that it’s better to be dead than disabled…that filicide should not be called ‘mercy-killing.’

Why do we need to tell people these things? Why isn’t this common knowledge?

Go and check out the ASAN page. Read their toolkit. Share it. Make it common knowledge.


I belong to a lot of mom groups online. They range from funny to scary to informative. In one of them, though, there was recently a post that first made me giggle and then made me think. Sadly, it has been deleted, so I can’t share a copy of it here, but I wanted to at least share the content.

A mom posted because her mother-in-law had warned her that she might be turning her son gay by painting his toenails. The mom felt that what she was doing was okay because it was only his toenails, and she only let him pick from green or blue. She wanted input on if this was acceptable behavior or not.

I had to wonder – what about painting his fingernails was going too far? Would he suddenly snap and start liking boys? And what about the color choices? If she let him choose pink or purple, would he start cross-dressing? What kind of rules had she created, and what was the logic behind them?

I went back to look at the posting again because I wanted to see what advice the other moms had offered up to this woman.

As for me, I hadn’t – and didn’t plan on – leaving any advice because it would have been wasted.

Anyone who worries that they will “turn” their child gay – honestly, anyone who worries that their child will be gay at all – has their own set of issues, and they aren’t going to listen to me.

But maybe you will.

Let me tell you a story.

Be careful!  Looking at an attractive man might make you gay!  Image stockimages via freedigitalphotos.net

Be careful! Looking at an attractive man might make you gay! Image stockimages via freedigitalphotos.net

When my son was about two or three years old, he found a greeting card at the store that had a picture of a super-muscled up man, naked from the waist up. My son loved the card. We bought it for him, and he would carry it around, propping it up wherever he was so that he could stare at it.

We didn’t worry about it or stop him from looking at it in fear it would “make” him gay. We didn’t worry about it or stop him from looking at in case he was feeling same sex attraction (albeit at a super young age). What we did worry about was how his autism would affect his future relationships if he continued to have the same level of communication and sensory issues that he already had, as well as other problems that we knew he might run into as he got older.

Because, let’s just be honest here, what’s wrong with being gay? How is it bad? Why is it something to worry about?

Worry about making your kids judgmental.
Worry about making your kids cruel.
Worry about making your kids insecure.
Worry about making your kids rude.
Worry about making your kids ignorant.
Worry about making your kids assholes.

Those are all valid thing to worry about. Worry about them.


now watchI sit here in the cafeteria of my son’s old elementary school at 6:45 at night. There are three lunch tables set out by a very kind and helpful janitor. There are seats for 12 at each table. There is plenty of room for kids to run and play around the room – there’s even an empty stage. And there’s me.

Why am I here?

I’m in charge of the new parent-led support group. The group that’s meant for parents of children with special needs. The children don’t even need to be in the school district. They can be in any local district. Or a non-local district. Home schooled. Or even too young for school but wondering what will become of their child when that child is school age (which, in the world of disabilities is 3, the age when PPCD starts and ECI ends…and if those initials sounds wrong to you, you might live in a different area or state, but the age is probably the same: it’s when the early childhood intervention ends and the pre-school begins).

So we cast a pretty wide net.

Flyers for this meeting went home with parents about a week ago. I posted in a bunch of FB groups. I even sent a mass email to anyone who gave me that email address at the last meeting or at the school district’s “ability fair” back in October.

And yet…I’m here alone.

I guess I shouldn’t complain too much that no parents showed up.

Our speaker is also MIA. She’d contacted us a few months ago, asking to present to the group. We got her scheduled with the date. Then I gave her the time and the place. Never heard from her. I tried to reach her today for a last-minute confirmation. Nothing.

Which means that I’m sitting in the cafeteria, alone. No parents. No speaker.

If you ever wonder why districts/schools can get away with doing so many bad things, giving students sub-standard services, treating special needs kids so poorly…I can answer the question with my lonely presence here tonight.

People – parents – don’t put in (or can’t put in) the time and effort.

And on one hand, I get that. I really do. It sucks to not be able to find even a single hour to get to a meeting about your child’s future. But, on the other hand, it’s kind of like voting. How can you complain if you don’t show up?

Sadly, I’ve seen this happen before. Many, many years ago, before our school district’s special ed department was as fantastic as it is today, we had to fight with them (getting a lawyer and all) because they were trying to do something not in our son’s best interest. It really wasn’t in any child’s best interest, but it was the easiest thing for them to do. At the time, we tried to rally support in the fight, to get the other parents involved. None of them were interested.

Our effort made a different – our son got a better end result, and we got an absolutely fabulous new head of special programs.

But as I sit here tonight, I try to think good thoughts. Instead, I flash back on an accidental meeting I had with another mother about eight years ago. It still haunts my head.

We were both picking up our then four-year-olds from their afternoon pre-school. Her son seemed to be very high-functioning, so I asked what his diagnosis was – I thought maybe he was Asperger’s.

She looked at me, confused. Then said, “Oh, I dunno. ADD or something.”

Well, the class was only for kids on the autism spectrum, so while her son might have had ADD as well, I suspected that what she actually meant was PDD-NOS. Not that she knew that. I’m still face-palming over that afternoon.

Anyway, the point is: the evening was a bust. And a reminder – I hope – to parents and families to do all they can.

And now I’m at home, posting up this blog, and drowning my sorrows in hot chocolate and popcorn along with a really bad horror movie.