Showing posts from April, 2013

When the Hardest Part is Your Brother

Tonight Sam and I were discussing best and worst parts of his day.

Mom: What is the hardest part of your day? ('Hardest' is a more acceptable word than worst.)

Sam: Oh, at school or home?

M: How about both.  What was hardest at school and what was hardest at home?

S: Well, everything was good at school.  But I hate it because Nathan is always out of control!

M: Oh.  How was Nathan out of control?

S: He was screaming and screaming after dad put him to bed.  It hurts my ears!

M: Ah.  Well, he does scream loud.  But I don't think he was out of control.  I think it was a way of regulating himself, like you do with walking up and down the hall.

S: Well, it hurts my ears!

M: It sure it loud.  I wonder how you could cope better.  How about your ear protectors?

S: I could go to another part of the house.

M: That's a good idea.  Or you could use earphones and listen to music.

S: I could do that.

M: So when Nathan screams in his room, he is actually self-calming.  It's re…

Embarrassed and Guilty

There is so much of me that is not embarrassed anymore.

Walking out of the public bathroom with your pants around your ankles?  And you're 12?


Falling on the ground in the grocery?  Not once or twice, but 6 times in one trip, all while screaming incoherently.  And you're 10?


Walking up to a counter clerk and saying "You are SO BLACK?"

Haha!  There's one for the blog.

But there is one place that uncovers my dark side.  That part of me that does not want my kid to show how autistic he is.

At his high school.

The place where he goes every single day.  Where he acts his usual autistic self.  Where his need to control is stronger than his need to fit in.

In other words, where the students and staff see his autism shining through more than I do probably.  Because he's under more stress there.

So why, when I'm at his school, does it grate on my last nerve to see him do inappropriate things?

At his chorus concert last week, he called out as he was leaving…

Severe Autism at 3?

I've been in this autism game what seems like a looooooonnnggg time.  12.5 years since the first diagnosis.  Of course, I was playing the game incognito for 2.5 years before that.   'Cause I didn't know what was going on.  And how the shit was about to hit the fan.

And I see these poor souls hanging out in the low functioning autism boards with toddlers that have a diagnosis, and I think "What's up, homies?"  Because they don't know for sure that LF (whatever the hell that means) is where they really fall.

What I do know is that you don't know what's going to happen.  The future happens with a little input from genes, a little input from therapy, and a lotta sweat equity from all the folks who believe in these little people.

We started out with two autistic kids.  Because 3 weeks after diagnosis that's what we had.  One autistic toddler, and an infant-in-training. 

Toddler had NO speech.  Zero, zip, nada.  Did not develop real speech until ar…

Don't Resent the Autism?

Again, there is a huge difference between types of autism.

And there seems to be no acceptable names for the myriad types.

There is the verbal kind, the less verbal kind, the minimally verbal kind, and the non-verbal kind.  That divides them up into general categories, but does a lot less to tell you about them than you think.

Then there are the secondary diagnoses.  How does OCD, anxiety, bipolar, Tourette's, ADHD, learning disorders and a host of other co-occuring diagnoses affect an individual's ability to function?

When you toss that salad together with the verbal differences, you begin to see some of the nearly infinite variety.

But now you add in personality.  Easy going, hard nosed.  Gets along with people/social (yes, our kids fit these personalities too) or more of a loner.

And our kids don't come into a vacuum.  They are born into families with their own unique issues.  And communities with varied strengths.

How good is the school system?  Are they able to reac…

This Message has been Pre-Approved

Sam was reading my talk to the Lion's club (the rough draft is from just a few days ago on the blog) when he got to the part about it being a "disorder."

"I have a disorder?"  It was not a positive statement.  More like "Who the HELL said that?""

Thinking quickly I said "Many people say it is a difference.  A different way of brain organization and a different way of thinking.  Do you think that is a better way of saying it?"

Yes.  Yes it was.

And yes.  Yes it is.

In Sam's mind there is nothing wrong with him.  And I pretty much like the way he is too.  I've kind of come to the conclusion that he doesn't frustrate me more than most other teenagers do their parents.  It's a little hard to tell, since all of my experience raising teens has been as an autistic spectrum parent.

Sam has a hard time seeing his limitations.  (No, I don't really think he will be ready to drive next year.  And no matter how many times I tell …