Life, Autism, Disability, and More

Tag Archives: lack of knowledge

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.

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blue skyLast week was Simon’s 12th birthday. He asked for a party at Chuck E Cheese, and he got it. Sure, his idea of a party is different than ours; all he wanted was some candles to blow out and some presents. He didn’t really want to play any of the games, and he pretty much ignored most of the guests. But he still enjoyed it. Even if, on one level, I didn’t.

Why didn’t I?

Because I knew that our families had blown him off. On one side, he didn’t even get a phone call or a card. On the other side, he got a card with a gift card in it…but it wasn’t even mailed until his birthday. To me, it’s horrible. It’s painful. How can they ignore him? How can they not even send an email when I mail them pictures of him in a little league uniform?

But here’s the thing: Simon’s sky is still blue.

What do I mean by that?

I started reading a book called “Headspace.” It’s an awesome book, if you haven’t read it yourself. At one point, the author talks about when he was in training to be a Buddhist monk. (He spent about 10 years training.) He had a problem with meditation, and one of the teachers told him a secret. Even when the sky is grey, when the clouds are dark, when a storm is brewing, there is still a blue sky above all of that. No matter what problems there are, there is still a sense of peace hovering, a blue sky we can tap into and know that everything is still good.

Simon is in the blue sky. He doesn’t know that I feel like the sky is grey, that I feel like there is a storm brewing. He doesn’t have expectations from these family members. He doesn’t get bothered. His sky is blue.

I thought about the blue sky when I read the news that broke on his birthday, too. A local town, Lake Jackson, had an issue in their school district. The teachers in the 5th grade class apparently offered “awards” to their special needs students. Awards like “Most Gullible” and “Drama King.” Horribly mean-spirited and something that should never happen.

When I read it, I thought that Simon would still have his blue sky in that situation, too. Even if we, as his parents, were upset, he wouldn’t be. He wouldn’t get the insults. He’d be happy.

But those people – the ones who wanted to give the awards, the teachers who thought it was okay – they’re the ones who would, in the end, suffer for their actions because of karma. Because they may not realize it, what’s they’re doing is teaching children that it’s okay to mock and tease people who don’t have the ability or knowledge to fight back or protect themselves. These children will someone be the caretakers of these adults. What if the adults have a stroke or get Alzheimer’s? And then these children – the ones who were taught it was okay to mock the defenseless – are now defenseless themselves? Maybe they don’t realize the impact of their actions, what it may lead to in the future.

Now, to be fair, I do feel it’s straight out wrong to mock or tease cruelly at all, these teachers don’t seem to feel that way, and perhaps the only way they can learn to be a good person is by thinking about how their actions will impact their own lives. Sad that they can’t be kind to people for the sake of kindness, but at the very least, you’d think they would be kind for their own sake.

Those teachers – they’re the storm. They’re the grey skies. They’re what bring us down, what make us worry, what upset us. But we have to remember that there are still blue skies up above them. That we can tap into that blue sky and stick with the positive. Because we can all be in the blue sky if we want to be.


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…