Saturday, January 3, 2009

Politically (in)correct? Rambling, rambling...

This has been bugging me... There are so many ways to refer to a child with autism. Apparently most of them are inappropriate... So which one are we, as parents supposed to use? We've got autistic child, child with autism, person affected by autism, Autistic, Person with autism. You can say "he has autism" or "he's autistic" or" he's affected by autism" or "he is a person with autism". Or you could go with disabled, differently ables, or awe-tistic. Serious, which one is it? Am I being disrespectful to Jaymes and others with autism by calling him an autistic child, or saying that he has autism? Am I being inaccurate, since by saying he has autism, I'm implying some sort of illness?

Political correctness is silly. I guess I'll stick to my guns and risk offending people. I would feel like a moron sayin in a conversation about Jaymes" Hello, this is my son Jaymes. Jaymes is differently-abled, and is a child affected by autism." Sounds weird.

I know, odd thing to muse about, but it's been bugging me. The only thing I really consider inappropriate is the R word. I tear into people all the time on my horse forum for using the R word, or making "special olympics" jokes. Those things piss me off. But I don't think stating that a person has a disability is offensive, and if it is.. Well, at least I'm being honest. I dunno.

On to Jaymes... He has had a good week, other than his eczema spiraling out of control. He is scaly head-to-toe. Took him out for his birthday, to Golden Corral and mboy would his OT be impressed. He actually ate a huge variety of foods. He had BBQ pulled chicken (first time!), mashed potatoes, fries, tuna (first time!), fried okra, a muffin, and some ice cream. He sat in his seat, used his utensils, and ate like a gentleman. I was so impressed with him. You should be too. Only we, parents of kids with autism (er... differently abled people affected by the disorder known as autism? politally correct? no idea) can fully appreciate small victories like this.

He has also started sleeping again. Thank god. I was about to drop, not getting any sleep.

A friend on another forum showed me this, and I thout I would share, despite Christmas being over. It's really appropriate, and I think you'll all appreciate it even if you've seen it before.

'Twas The Night Before Christmas - Autism
by Cindy Waeltermann

Twas the Night Before Christmas...
And all through the house...
The creatures were stirring...
Yes...even the mouse!!

We tried melatonin...
And gave a hot bath...
But the holiday jitters...
They always distract!

The children were finally...
All nestled in bed...
When nightmares of terror...
Ran through my OWN head!!

Did I get the right gift...
The right color...
And style...
Would there be a tantrum...
Or even, maybe, a smile?

Our relatives come...
But they don't understand...
The pleasure he gets...
Just from flapping his hands!

"He needs discipline," they say...
"Just a well-needed smack..."
"You must learn to parent…"
And on goes the attack!!

We smile and nod...
Because we know deep inside...
The argument is moot...
Let them all take a side!

We know what it's like...
To live with the spectrum...
The struggles and triumphs...
Achievements...regressions!!

But what they don't know...
And what they don't see...
Is the joy that we feel...
Over simplicity!

He said "hello"!
He ate something green!
He told his first lie!
He did not cause a scene!

He peed on the potty...
Who cares if he's ten...
He stopped saying the same thing...
Again and again!!

Others don't realize...
Just how we can cope...
How we bravely hang on...
At the end of our rope!

But what they don't see...
Is the joy we can't hide...
When our children with autism...
Make the tiniest stride!!

We may look at others...
Without the problems we face...
With jealousy...hatred...
Or even distaste!

But what they don't know...
Nor sometimes do we...
Is that children with autism...
Bring simplicity!!

We don't get excited...
Over expensive things...
We jump for joy...
With the progress work brings!

Children with autism...
Try hard every day...
That they make us proud...
More than words can say!!

They work even harder...
Than you or I...
To achieve something small...
To reach a star in the sky!

So to those who don't get it...
Or can't get a clue...
Take a walk in my shoes...
And I'll assure you!!

That even 10 minutes...
Into the walk...
You'll look at me...
With respect, even shock!

You will realize...
What it is I go through...
And the next time you judge...
I can assure you...

That you won't say a thing...
You'll be quiet and learn...
Like the years that I did...
When the tables were turned……!!


I love that, it's just perfect. I wish I'd had it in time for Christmas though.

In other news, i've been working my butt off on the website. I've added a links page that contains links to game sites appropriate for autistic children, and online stores that sell things like flashcards (Goosie cards, guys. GREAT cards.), therapy swings, therapeutic toys, and hippotherapy (horseback riding therapy) equipment. I have also been adding slowly to the state by state autism directory, but it would be a lot easier if some of you would either email (amber.lesovoy@gmail.com) or use the contact form on the site to share links from your area. It's slow, but it will be finished eventually! I have also added the autism video library, where you can browse by category, or just look randomly through the videos. It is also a work in progress, if you have any videos you would like to contribute, please email or contact me through the form. All videos will be credited to you, and you have the right to have them removed at any time.

If any of you have websites or businesses, and would like to advertise on the website (not the blog, the actual site), please let me know. I am offering advertising space on the front page for $50 a month. I need some sponsorship to cover the costs of keeping the site on the web. Donations toward that end are welcome, the paypal address is alesovoy@yahoo.com. People who make donations will recieve a car magnet with the DBTD logo on it, and of course my everlasting thanks!

Hope you all survived New Years, I've yet to decide on my resolutions, but when I do, rest assured you'll hear them.

1 comment:

" JUST US " said...

I love this post.. Couldn't have typed it better myself.. Kudo's ~