Life, Autism, Disability, and More

And this is why we can’t have nice things…

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.

Seriously – just don’t murder anyone

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!

Size Doesn’t Matter

Halloween 2013

Halloween 2013

What’s the cut-off age for Halloween?

When I was growing up, I didn’t worry about it. No one really commented on it (to me anyway), and as I got older, my costume got more complex. When I was 17 and dating, my boyfriend – now husband – actually made me up as a car accident/fire victim, going so far as to cover an eye with a patch and making me look all bloody and raw and burned. It was awesome.

But nowadays, I hear grumbling. I hear people complaining about kids who are “too old” or “too big” to go trick or treating. There’s the old joke about “if you can shave, you’re too old to go trick or treating.” The thing is, some boys start shaving when they’re 12 or 13. Is that too old to trick or treat?

The real worry that I’m bringing up here isn’t actually about general trick or treating. It’s about Simon.

He’s 12 this year. He’s not exactly small for his age, either. He’s in the 6th grade (should be in the 7th, but he was held back a year in kindergarten), and he’s definitely going to need to shave within the next year or so. Puberty is setting in.

He loves Halloween, though. Super duper loves it. He just brought it up to me again, and I had to tell him (for the eight-thousandth time this week) that it is on Friday, and that we can go trick or treating after school. The actual plan is to go trick or treating at the mall after school, and then hit the neighborhood around dinner time.

Will he be able to go?

Will people make snarky comments? Refuse him candy and other fun Halloween goodies?

I don’t know how he’ll feel about it next year, but what if he still wants to go? Will we have problems? Will we not?

I hate to quote the Doors, but the future is uncertain…and is the end of Halloween near?

Half-Decorated for Halloween

halloween
I love Halloween. Looooove it. It’s probably my favorite holiday of the year (other than Christmas because, well, Christmas…).

I’m one of those people who can’t decide if ‘Nightmare Before Christmas’ is meant to be for Halloween or Christmas. Both of them are just so awesome.

Because of that massive love, we normally decorate inside and outside, lots of lights, lots of scary stuff, lots of not-so-scary stuff. You get the idea. We carve multiple pumpkins. My husband puts up lights in my office, around the TV, anywhere we can fit them. We put up paper cut-outs on the doors, on the kitchen cupboards, anywhere that tape can stick.

Not this year, though.

This year, Simon has decided to become obsessed with the holiday.

He checks the calendar every day. He reminds us that “Halloween is in October.” He tells us that we’re going to go Trick or Treating on Halloween. He tells us that he’s dressing up as a blue crayon (for the second year in a row).

When we have to tell him that it’s not Halloween yet, he gets upset. He doesn’t understand waiting for it, and he doesn’t understand the count-down. At this point, he is agreeing with us; he knows that it’s next Friday. But he may also agree that it’s ‘next Friday’ next week when it’s actually that Friday.

We promise him that we won’t miss it, that we won’t let him forget the day. But he still has a lot of anxiety about it. We don’t know why, and he can’t tell us why.

Instead, we are just trying to minimize everything we can. There are no indoor decorations. We have a minimal amount of outdoor decorations. We don’t mention the ‘H’ word unless absolutely necessary, and even then we try not to talk about it without using just veiled references.

Of course, time will pass, and it will be Halloween soon, and it won’t matter in the long run if we went one year without inside decorations.

But earlier this week, Simon flipped the calendar over and told me that next month was November, and that Thanksgiving was in November. Whoops.

 

My Son’s White Privilege

Simon bowling at Special Olympics practice

Simon bowling at Special Olympics practice

I never really thought I’d be writing this blog, but after this weekend, I felt the need to do so.

We’re super lucky.

Really, I say that, and I mean it.

I don’t mean that we’re lucky that our son has autism. But we’re lucky that he’s a cute little blonde boy who gets all the oohes and aahes and attention. No one really seems him as threatening or perceives him as anything other than a disabled child.

For now.

But he’s growing up. He’s 12 now, almost as tall as me, and about 130 pounds. Not so little anymore.

This past Saturday, we were at his Special Olympics bowling practice. And there was another boy there – another boy that was moving from tween to teen, another large boy who was growing up. Only this other boy was black.

He has slightly more advanced language than my son does, and he is far more outgoing, wanting to talk to everyone, share with everyone. He was especially proud that he’d just gotten his braces off, and when he saw another teen with braces, he got right into the teen’s face, showing him his now-braces-less mouth and making a comment about braces that was rather hard to understand (since his mouth was open to show off the lack of braces while he spoke).

The first thought that flashed in my mind was this: “The police would so take him down if he did that to them.”

They wouldn’t understand. They wouldn’t know. They would immediately judge him a danger because of his size, his inability to communicate (which could be seen as drug use instead of disability), and because – let’s just be honest here – because he’s black.

And it really hit me then. My son will get treated differently because he’s white. He probably already does get treated differently because he’s white. But when he’s grown up, when he’s walking down the street, I will need to worry about what will happen if he encounters the police, but I won’t have to worry as much as the other boy’s mother. I won’t have to wonder if he’ll be shot just for walking through the wrong neighborhood. I won’t have to wonder if he’ll be stopped and construed as “hostile” or “violent” just because of a simple thing like skin color.

Now, please realize I’m not saying that police are bad and evil. They are in dangerous situations. They have to make snap judgments. They are the ones called when someone else perceives a “dangerous situation.” So it’s not only the police that I’m really talking about here – it’s everyone out there that can escalate what is simply a boy, teen, or man with autism and an inability to communicate clearly. I used the police in my example because of recent news (and not as recent news) where police over-reacted to situations involving the poor, the homeless, and the disabled. And when a minority is thrown into any of those mixes, the situations tend to get worse.

I can’t do anything about the white privilege my son will undoubtedly – and does undoubtedly – receive. But I can try to do something about the fact that others will not get it. I can start simply by being aware. I can start by making sure others are aware. And I can start by trying to get others to understand that just because someone’s skin or nationality is different than their own does not mean that the person is any different in any other way.

The power of ignorance

Question Mark Man! Image by pakorn via freedigitialphotos.net

Image by pakorn via freedigitialphotos.net

So this morning, I had to leave my design class because of ignorance so extreme that it was either walk away, cry, or turn to violence.

Since violence is not the answer (unless you want to get it wrong on purpose), and if I’m going to cry, I don’t want it to be in a college classroom. Instead, I went out and sat on the steps.

Why?

Because one of my fellow students made a statement about another student – one she shared another art class with:
“She’s like special needs. She’s so annoying.”

When I tried to explain that equating “annoying” and “special needs” is not cool, and that she didn’t understand what she was talking about, she said that she didn’t want to say anything by accident and would like to be educated.

I again tried to tell her that her statement was insulting – that she was saying that special needs equaled annoying, but she kept defending her statement, saying it wasn’t meant to be insulting. It was that this girl in her other class was just so special needs and annoying.

The annoying part of this other girl, it seems, is that she doesn’t follow directions and does her own thing. The teacher doesn’t correct her, but this girl in my class feels the need to “help” by correcting her.

Now, if the girl in question truly is special needs, there may be a reason the teacher lets the girl not quite follow directions. There may be a reason the girl can’t follow directions. And, regardless of whether this girl is special needs or not, there may be something at play that the teacher knows and the students don’t. There may be a reason that the girl does not follow directions. And it’s no one else’s business if that is the case.

After a few attempts at educating her about the fact that she is being insulting by discussing why special needs people are annoying, I gave up because she clearly does not understand. I pointed out my son was autistic, that I knew many people on the spectrum, that her judgment of others who were not like her was closed-minded and would upset many people, and she just kept repeating that she didn’t mean it to be insulting. It was just that this girl was annoying.

Then her friend sitting next to her says, “Well I was reading this thing in my doctor’s office about autism, and some of the signs are when people are like obsessed with something and are like, what’s that word, you know – anti-social.”

By then, I was ready to bang my head on the desk just to get them to shut up. They had no idea what they were talking about, they were being insulting, and they were not interested in learning anything, regardless of their statements.

It’s now far enough removed that I can look back and just shake my head. There’s only so much I can do to educate others, and if they aren’t interested…if they truly believe that people who aren’t like them are “annoying,” I have only one thing to say at this point:
If you don’t like someone and you find them annoying, leave them alone.
Stop equating special needs with annoying because, let me tell you, what is really annoying is your judgment of non-neurotypical individuals when you have no knowledge to base that judgment on.

Locked In – In Real Life

simon with binocularsLet me start by saying that I love John Scalzi. Really. I do. I swear. If I didn’t, I wouldn’t have gone to his signing/reading up in Houston when “Lock In” came out. I was totally enthralled by his reading of the part of the “book” that wound up not being in the book.

But.

Then I read “Lock In.” Well, I tried to read it, anyway.

I stopped about 100 pages in. Because, regardless of his intent, what I got from it was autism and Asperger’s.

The threep suit that the main character (male or female – you take your pick, but I’m using “he” for short-hand in this blog posting) wore made him seem like he had Asperger’s.

The sensory stuff that he dealt with, the super-memory, being locked in his own head…like kids with autism who can’t communicate.

I was okay with it, and I kept reading because I kept thinking maybe I was reading too much into it. Maybe I was the one who just put autism into everything because I think about it so often.

Then it was time for the scene at the dinner table of the fund-raiser of the main character’s father. And there was an argument because many people at the table felt that the locked in people should try to be more “human” (even in their threeps), while others argued that it was the individual’s right to choose how they interacted with the world.

And I had to stop.

There is such an argument right now about how much people should accept. Should people on the spectrum be forced to be “normal”? So many people force their children to go through ABA and learn to behave like all the neurotypical people. No stimming (which, as you can read about, is often extremely detrimental to stop for many people on the spectrum).

I also remember, from oh so many years ago, an article that I believe was in the New York Times about a woman who was happy with her son, she kept saying that in the piece, but then when he was 8, he wanted to be Mickey Mouse for Halloween. And, clearly, that was unacceptable, and so she had to “fix” him to get him to be more like his peers. I wanted to slap her for forcing him into a role he didn’t want to be in. Why should he change – just to make her happy? To make society happy? The kid was happy. What difference did it make if he loved Mickey? There are plenty of adults who do, too!

It goes further than that, of course. I could write about this for pages and pages.

But I’ll just stop with this: imagine being truly locked in. Imagine not being able to communicate your wants and needs. And imagine that, like in the book, the government cut funding to things that would help you to communicate.

And now you know why I couldn’t keep reading. The reality is there. The thought of the insurance not covering things that might help Simon is a reality I don’t want to consider, even though I know that’s probably where the world is going.

But rather than end with that achingly painful thought, let’s think about something else. What if we looked at the behaviors of autism differently? What if we considered the good and the bad, and we helped those on the spectrum be happy instead of making us happy?


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