Saturday, April 2, 2011

A Bad Haircut

Today is National Autism Awareness Day.  For those of you parenting a child with Autism, I am sure you are VERY aware.  On CNN this morning they said: "wear blue for Autism."  Sorry if I offend, but I think it's ridiculous.  365, 24/7 parents are on the front line.  I think today is a day others could do something nice  for a family with an Ausitic child (or 2, or 3).  Like, watch the kid while the parents take a nap.  Start there, skip the blue nonsense. :-)

1. Don't fall into the "bad haircut syndrome" ... the child will not outgrow it.

Denial comes in all forms.  Sometimes we need denial, as life is too much.  The invisible policeman in our brains says:"Not letting this information through."  It's a built in check and balance system designed to keep us sane.  Other times we become that policeman and refuse to deal with the situation at hand.  Autism is a developmental, life long  disability.  Professionals sometimes say: "developmentally delayed."   When they started using that "delayed" phrase with my son I thought they meant his development was just late for the party, but would arrive.  His biological father thought it would arrive any minute.  The more I learned, the more I realized "delay" was used because the "Pros" didn't really know, and in their defence could not know what my 4 year old could do in 20 years.

When one gets the diagnosis...there are stages. Relief at first, to know what "it" is.  Then grief begins.  As this is not what we thought we were getting when we decided to have a child.  The loss of the dream is what I first.  Elisabeth Kubler-Ross's grief model:übler-Ross_model .
Denial, Anger, Bargaining, Depression, Acceptance.  Not always in this order. :-)

Denial.  It comes in all forms. Some parents really believe the child will outgrow this.  That somehow they will come home from work one day and it will be all gone.  Comparing my child to all the printed information.  If Jason bangs his head, and "my Bobby doesn't...see he doesn't have Autism."
Blaming the Autistic behaviors on parents or family members.  "Oh, his father did the same thing when he was little."  Or blaming vaccines, pregnancy, ourselves keeps us in denial.  Aspergers diagnosis is the one that really gets me.  "My son has Aspergers, he's doesn't have Autism."  I don't know what the DSM V decided...but in IV Aspergers is under the Autism 299 section.  Cure is a sly form of denial.  Many parents get stuck in the "cure" and never address all the issues that need to be.  If they can cure their child, they never have to accept it.  The slyest of all is Control, and that could be it's own book. How I controlled it was to learn everything possible, immersing myself in books, papers,  and information that made me feel as if I could just get that one piece of information--I'd be on top of this Autism thing. never happened.  Worry is another mask of control. "If I worry about it, I am somehow doing something about it."  Uh...not really. I was just making myself sick, and I had to face it.

Getting all the information about my son I could, was the best thing I could do for him.  He has huge auditory processing difficulties.  His wiring makes his hearing scrambled.  He had better than normal hearing, and it all went into his brain as if I had put it into a blender. No wonder he didn't talk until 4. Then when he did, it was garbled. It's what he heard.  A 4 hour audiologist appointment showed me this. He sat on my lap in a sound booth.  The Dr. said two words and my son was to repeat them.  20% of what she said, he repeated correctly.  I realized that part of his non compliance
(don't you love that term?) was because he didn't even hear what people were saying.  That was just a start.  His processing issues of all his senses needed evaluation.  Which is why sensory integration is so important. 

His hearing is still scrambled. My son has strange pronunciation of certain words.  Dyslexia is a natural outcome of auditory processing trouble. How can one be hooked on Phonics, if one doesn't hear correctly?  Which is why we moved to Albuquerque all by ourselves when he was in 8th grade and not reading.  I found a private school that used different neuropathways to teach reading and writing.  Many thousand dollars later...I am happy to say it worked.  He is able to read and write well enough to be a productive member of society.  He will never be a book guy. But he's a magazine, website, texting guy at 23.  If I had stayed in Illinois they would have residentially placed him. At the time Illinois had no programs for a high functioning autistic, dyslexic, high IQ kids.  Their answer was to send him to a hospital day school, or Texas residential warehouse program.   I, on the other hand--took his IEP and used it for packing material in our move.   I am eternally grateful to the teachers at DLD Sycamore School.  He was a handful!

In a nutshell: I learned my son's strengths and weaknesses.  I used his strengths to reach him.  Today he texted me saying that a woman had come in his store with one of my Etsy shop necklaces on.  He still hears A and I as the same letter, and the spelling wasn't great.  But I understood what he was saying, and that to me, is what counts.  

Thanks for reading. 
Each day is a gift. Open now.

PS. Please forgive the breaks in this crazy format.  I get it all set up and hit "publish" and it's a mess.
I don't know why. 

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