Life, Autism, Disability, and More

Tag Archives: intellectual disability

Frog image by kconnors at morguefile(This blog got caught up in the massive storm that was too many things scheduled, so I wanted to finally get it up. Because it does matter.)

Back on March 1 (Spread the Word to End the Word), I was teaching a few creative writing classes. I’ve had, and I’ve worn, my t-shirt on that day for three years now.

Before each class, I told them that they were my captive audience, and that they had to listen to me get up on my soapbox.

I went into my spiel about spreading the word, tell them about the term ID, and asking them to check out the website and take the pledge.

In my second class of the night, I had a 14 year old student. When I told delivered my speech to him, he said. “Wow. Uh. I’ve said retarded like a dozen times so far today.”

Did I do that, too, when I was 14?

I don’t remember doing it, but, then again, I also don’t remember the time that I answered every test question with the word “frog.” (I apparently did that. One of my friends reminded me about it. I still don’t remember doing it, but it definitely sounds like something I would have done in high school)

I asked my student to think about it and check out the website. Maybe even share it around.

And I thought – what if this website, and this idea of respect for those with disabilities, had existed 30 years ago?

What if it’d seen something like it?

Would it have affected my word use?

My friends and their word use?

Will it affect him?

When I hear it in movies, I cringe every time. Doesn’t matter if it’s an old movie or a new movie. Doesn’t matter if it’s appropriate to the character’s personality.

I don’t know that we’ll ever be able to get rid of the stigma and the insult based on intellectual disabilities, but we can spread the word to end the word.

And maybe that will reduce the number of times I cringe when I read Facebook posts, watch movies, read books, or talk to strangers and acquaintances.

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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.

 


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.


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?


Sympathy Wreaths by AcrylicArtist at morgueFile.com

Sympathy Wreaths by AcrylicArtist at morgueFile.com

Once upon a time (about a week ago now), a “pissed off mother” wrote a letter that went Internet-crazy.

Obviously, this letter was just a wee bit upsetting to all of those who have children with autism or other developmental disabilities.  It took me a while to form a response, but now that I’ve calmed down, I wanted to respond.  It *needs* a response.

First, I can’t blame this mother for sending it anonymously.  If I had written something with punctuation that was that bad, I wouldn’t want anyone to know I had written it either.  (Joking.  Humor helps, right?)

But to get to the serious part, I feel sorry for the mother who wrote this letter.  Genuinely sorry.  Sorry for her and the life she leads.  The life she’s going to lead.

She needs to think about the lesson she’s teaching her children.  She needs to remember that her children will be the ones picking her nursing home. And that’s not a joke.  I’m not being facetious.  The letter she wrote shows a distinct lack of caring for those who aren’t “normal” or behave oddly.  According to one Alzheimer’s website, the risk of someone developing a form of dementia is one in 14.  If she is that one in 14, her children will fear her and revile her, just the way she has taught them to.  She shouldn’t be surprised if she finds herself in an inexpensive nursing home with no visitors and no one coming to her grave after she dies alone.

We reap what we sow.  She has made it clear that those who are imperfect are not worthy of love or even simple human dignity.  She will have that experience herself one day, and perhaps by then it will be far too late for her to change her mind or teach her children differently.

That’s why I feel sorry for her and the life she leads.  I also feel sorry for her children.  Perhaps none of them will ever learn to appreciate the simple things in life or even life itself.  She won’t read this.  And she wouldn’t care or understand even if she did.  And for that, there is no cure.  She will suffer forever.

My son may scare her, but he has empathy.  He would feel bad about scaring her.  She, on the other hand, scares me.  She doesn’t feel bad about scaring people.  And she doesn’t know why that’s wrong.

Autism can be coped with.  What’s wrong with her, however, can’t be.  She may be able to pretend she’s normal sometimes, but her letter makes it clear that she does not possess human emotions.  And for that, I feel sorry for her.  I have to hope that other parents of autistic children can find it in their hearts to feel sorry for her, too.  Because while her letter might shock us and hurt us, we have the strength to move past it.  And she never will.