Life, Autism, Disability, and More

Tag Archives: understanding

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.

 


returning library booksWe’ve had a rough week off school, but tried to make it as fun as possible: Chuck E Cheese, ‘Palm Beach’ (which is like a splash pad on crack), the library, shopping, and horseback riding. We didn’t stop. Even with the meltdowns and constant reminders that we would have ESY – Extended School Year for you newbies – we got through it all happy, for the most part.

This weekend went even better, probably because Simon knew that ESY was right around the corner. He even slowed down his constant asking for the circus, which I hope means he realizes that it will happen, but not until next month when they actually come to Houston.

But then, today, we decided to go to the library again.

We had started last week with the library, going on Monday, and, of course, he loved it as always. But I had taken out some DVDs, and while books have up to three weeks, the DVDs only get a one week rental period. Since I knew tomorrow would be crazy with the first day of ESY, I suggested we go today.

A good, solid plan, right?

So solid that when I asked Simon if he wanted to go, he said yes. He did his usual going out routine (bathroom and finding his flip flops), and then he came to meet up with us in the kitchen. Holding his library book from last week. He had found it and was ready to return it and swap it out for a new one.

We’ve never taught him to do that. We’ve never told him to do that. He just knew we were going to the library, and he put it together that he was done with the book, so he wanted to return it.

Totally cool.

I know that to some parents, that might be nothing. But for him to make the observation, then to go and to find the book and bring it along…that’s really something for him. It took forethought and planning. It took effort. It took being truly aware of what the library is, and what we do there.

I had actually wondered if he understood the concept of ‘borrowing’ books from the library. He knew that we took them out. And I’d take his books and put them in the stack of returned books, but he’d never done it before himself. And he’d never said anything or done anyway to make me aware that he knew it was going on.

A little victory maybe, but a super cool one, and one that convinces me that all our trips to the library are definitely worth it, and not just for the awesome selection of books and movies and music they have there. (Have I mentioned my library rocks? Because it does.)


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!


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.


Yes, he hit the ball!

Yes, he hit the ball!

First off, for those in the Houston area who are reading this, I highly recommend you register for the Family to Family Network Conference and Resource Fair.  They have two this year – both of them just under a full day long.  The first one is Saturday, March 22, and it lasts from 9 a.m. to 2 p.m.

I had registered for it.  There are some awesome-sounding panels.  I was going to “The Future is Sooner Than You Think” and “Working out Conflicts” and “My Kid in One Page or Less.”  All of that sounds really, really good, right?  I’m sure it would have been.  But it turns out I won’t be going.

Why not?

Because on the first of March, Simon started the Hometown Heroes Challenger League.  It’s the Little League Baseball team meant for children with disabilities.  They have volunteer boys from the Little League who come and work one-on-one with the kids on the Challenger League, and the Challenger League gives the kids who wouldn’t normally get to play Little League a chance to, well, play Little League.

Going out to the field...

Going out to the field…

I missed the first game.  I had planned, before I knew the game schedule, a trip for business to Seattle.  I couldn’t cancel it, and it would be okay; my husband was taking Simon, and they would have a great time.  (They did.)

But I missed it.

I wasn’t there for it, and while I got a wealth of pictures and even a few videos, I wasn’t there for it.

So I look at it this way – I can go and learn about my child in an abstract way.  I can figure out future plans that may or may not happen. I can hear about conflict resolution.  And I can condense everything about him into a single page to help others learn about him.

Or I can go and actually be with him.  I can watch him play.  I can help him.  I can cheer him on.  I can see what he does.

I don’t think there’s really much of a choice at all there, is there?


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…