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Keeping it together

A glass shell
Fragile, cracked
every bump, every jolt widening
like a windshield in a cold snap

stellate, star-like
each ray lacerating the organism within

blood pooling
dripping through the cracks

outsiders avert eyes
give wide berth
don't be contaminated

The shell is all that keeps it together.

What to Expect From Autism - The Unexpected

There are lots of things you expect from autism.

You expect difficulty making friends.  Sensory issues.  Eating problems.  Not sleeping.  Late talking.

There are books written about the common symptoms of autism.

But, we're getting outside the common blog topics and chapter headings now.

What about deciding that hard rock is THE new obsession.  AC/DC, Led Zeppelin, Pink Floyd.  Not that I mind!  I'm cool as long as Justin Bieber is not among the purchases.  We could have Sam write the Encyclopedia of Rock history, chapter one.

Strangest ways to make money:
  - Selling raw products to Ikea.  Frankly, cotton will not grow well in Pennsylvania.  I know, I made him research the latitude and conditions at which it grows.  Did you think that all those flat boxes are made in Sweden?  Most products are outsourced to third world countries to save money.  I made him look that up as well.
  - Copying all those hard rock albums onto reel-to-reel tapes and reselling them.  Ignoring the fac…

Autism is a Moocher

Today, I read that one way I am damaging my children is by sometimes saying I 'dislike' autism.  This is just one of many ways I contribute to their future mental health issues, I'm sure.  I've reiterated on this blog that one of the recurring themes of parenthood is the requisite guilt. I honestly believe that parents contribute to the world economy by ensuring the continued health of the antidepressant and therapy markets.

Thus, I am contributing to the recovery of world markets.

I see parents who support this premise of damaging their children instead remark on their lives with sarcasm.  Instead of saying 'I dislike autism because we never fucking sleep,' they instead make a pithy remark on yet another sleepless night.

To me that is akin to saying 'Gosh darn, I hit a deer and my insurance is going up' instead of saying 'God dammit , that damn deer jumped out and left a fucking great dent in my car.'  It is the same statement, but said with t…

Words and Words

When Sam started acquiring unprompted language, through our careful programming, I wrote each one down in one of those blank books you get at Barnes and Nobles .  I started with 'ice cream' when he was around 3 and stopped when he got to word #300 at about age four.  It started with a trickle.  And turned, if not into a waterfall, into a (dare I say it) babbling brook.  I stopped when I realized I just couldn't keep up.

Nathan was never like that.

He has rarely had unprompted language.  Around age 10 we realized he had language stored in his brain.  Words he could read.  Words he could understand receptively.  Words he could use prompted (Do you want cheese sandwich or chicken?  Chicken.)  Words he could be prompted into using on Proloquo2Go - 'I want to eat...Chicken').

A few years ago we were in a craft store and he saw a restroom.  "Toilet!"  He had to go.  I was so hopeful.  But still he requires scheduled bathroom breaks to prevent soiling himself.

H…

How Strong, How Long?

'You are so strong.'

As if I had a choice.

As if letting my kids drift into adulthood without fighting for their rights and their future was an option.

I have been strong for 17 years.  Plus 14 years.  Plus 9 years.

Unless you subtract the times I wasn't.

The times when I hated myself for how I parented.

The times I steal for myself.

The times I am lazy.

The times I don't really like my kids.

The times I am an asshole to my kids.

Those times are probably counted at time and a half.

I think I must have a negative balance.

Testing, Abortion and Disability Rights

With the commonplace use of the 'triple test' we have become a society of eugenicists.  The test that gives warning of an increased risk of Down Syndrome and neural tube defects (spina bifida) is supposed to allow us to plan.  I rarely hear of anyone using it to plan, but instead hear people say "If it's positive, I'll have an abortion."

I am pro-choice.  I will fiercely defend the right of a woman to decide when she wishes to carry a pregnancy, and when she doesn't.  If she would have chosen to not have gotten pregnant in the first place, she has the right to choose not to carry the pregnancy.

Also, I cannot know all of the reasons that go into termination.  Perhaps she already has as much as she can handle, or perhaps she would be in danger if she had a child with a disability.

But the most common use of the triple test, to have a 'perfect' child, is a symptom of a larger problem in society:

              -The fear of disability.

Disability is…

An Open Letter to the Psychologist Who denied my Son's Hours

Dear Dr A
I'm not sure if you remember us. I expect you are very busy denying lots of requests at the end of the year.  It is such a pattern for your agency that I'm pretty sure you must earn a bonus. Use it wisely!  So, anyway, I'll remind you about us.
We requested eight weeks of an extra ten hours per week to help our 16 year old son with autism adjust to his first year of high school, and his first year of cyber school. We explained that he hadn't been able to school at home because of his brother, who is more affected by autism. So we made all the accommodations we could. I took him to my office. I help him between work and after. I love helping him with algebra, since that is my personal favorite. But explaining metaphors and racism in ways he can begin to understand is a huge joy to me.  It made all the loss of personal time worth it.
But he was still having trouble. His live lessons are in the morning, when I am busiest at work. In case you don't understand au…