May 14, 2012

I took Jack and Nora to Sensory Night at Pump It Up.  Paul didn't go.  I think maybe he was intimidated by what he may see there.  I think he'll go next time - because I told him it was a success.  There weren't that many families there - compared to a usual free time or family night at Pump It Up.  Nora, Jack and I had a great time.  It was a fun night and good exercise for all of us.

Just got some books:

Let Me Hear Your Voice:  A Family's Triumph Over Autism "A universal tale of hope, dogged parental love, hard work and ultimate triumph."

Overcoming Autism:  Finding the Answers, Strategies, and Hope That Can Transform a Child's Life  "A State-of-the-Art Approach to Reducing the Symptoms of Autism Spectrum Disorders"

I apologize to anyone who reads this blog and finds my entries offensive or reads them and thinks that I am feeling sorry for myself.  I wrote this blog to try to understand our own story, to better understand Jack.  I wrote this blog - to answer the question that I am so often asked - "How are you doing?" Its not a question I can answer in a few words.  I realize that most people just want to hear "Good."  Some moments feel okay, some moments feel good, and some feel bad, scary and ugly.  I think that's natural.  Please build me up, don't cut me down.  

I also want to clarify that Paul and I are united.  We are lucky that we are united - many parents are not.  We also know that the rate of divorce for parents of autistic children is very high.  I ask that everyone support us together and to not say or spread thoughts that could tear us apart.

If you don't like this blog - simply don't read it.  But I urge you to read the two books above - especially, Let Me Hear Your Voice.  

You would fight cancer with an intensity.  You would lose a breast or two, put strong chemicals in your body to kill the dangerous cancerous cells.  You wouldn't sit back and see what route the cancer might take in your body.  You wouldn't wait for 6 months or 9 months and not treat the cancer.  Autism is very different than cancer... but in some ways it is similar.  Autism is very different in Alzheimers... but in some ways it is very similar.  Autism is a neurological disorder - and you don't want it to keep progressing - you don't want your child to remain mentally at the level of a 1 year old.  You fight it - just like you would fight cancer - just like you would take medicine and fight off the progression of Alzheimers.  I am fighting for Jack.  I ask people to advocate for Jack, advocate for our family, be an advocate for this fight.  

Jack was developing normally... and then something went very wrong.... something is going wrong in his brain.  In some areas - he is only at 11 month development.  I don't think it is unnatural for Paul and I too feel such strong emotions after learning his medical diagnosis not even one week ago.  I called Lifeworks this weekend.  And the person on the phone was so kind.  She showed empathy for me... and I appreciated it.

The saying is "If you've met one child with autism, then you've just met one child."  Autism is so different from child to child.  That's why it is such a scary diagnosis.  You don't know the path your child's brain is following - you do know that you want to help retrigger and redirect those paths.  There are therapies to help with that.  You do know that you have a short window of time before those paths become permanently set.  You take advantage of that window with a dogged persistent and intensity.  You advocate for your child.  I believe this is the good fight.  Please join Paul and I.