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Tuesday, June 28, 2016

You and me against the world.....

Sometimes it seems like you and me against the world
And when others turn their backs and walk away
You can count on me to stay..... 

("You and Me Against the World" Ascher,K, Williams, P. 1974)

I chronicle the beginning of this journey in my memoire, "Astoria Story."  By the age of two, it was clear there was "something about" my child.  Those were the words of her pediatrician.  No one could put a finger on it.  We had her hearing checked. Twice. We went to far too many psychologists.  One neurologist told me she "just wanted attention."  ??????  She was and still is my only child.  Good one, Doc.  Not funny.

I was "too lenient."  I was "too strict."  Maybe it was the Coca-cola.  No, there was no soda in the house.

There were inexplicable tantrums of gigantic proportions.  I often had to leave a shopping cart half full of groceries in the store and give up and just take her home.  I could not find a babysitter willing to care for her.  I often wondered when the Social Services would show up at the door, for all the screaming and wailing that was heard emanating from our apartment.  I paraded her outside in her little bathing suits to show the world she had no bruises.

Finally, with school looming on the  horizon, I got smart and demanded to see a child psychiatrist.  No more psychologists with their bullshit ideas and useless advice.  After intensive 2 day testing and a 3 hour observation....and waiting and waiting for the results, I got the phone call.  "My conclusion is that she has autism."  My brain went into overdrive and denial.  I was advised to get books, lots and lots of books.

Autism used to be blamed on the uncaring, distant mother.  It was thought to be an emotional reaction.  More recent literature revealed it to be a neurological disorder.  It had/has a physical manifestation.  Still, the cause for its existence and the increasing incidence are still up for grabs.  Vaccines have been scientifically ruled out, though some still insist they are a cause.  Lack of proper diagnosis. Toxins in the environment.  Genetic factors.  Maybe all of the above.

Over the years we experienced terrible teachers and wonderful ones.  We had horrible neighbors and horrible children who were cruel and unforgiving.  We had run ins with the law.  Hospitalizations.  Mandatory school for children with "behavior problems."  It did not help that my child's father joined in the abuse.  We divorced.  I moved us back to my home, New York.

It was a difficult time and looking back, I wonder how I managed such a gargantuan feat.  Two dogs, 4 cats and a fish, plus a disabled child.  You do what you have to do.

There were more hospitalizations.  There were more terrible teachers and worse schools.  There was betrayal by the entire educational system.  There were lawyers.  And, there were times when I feared for her future and wondered if she would even have one.  There was the night she damned near died.

Eventually, I met a man to whom I was attracted and to whom I could talk.  In time, we were a couple.  He was willing, for me, to take on a teenager with autism.  He provided stability, a home, a safe haven.  Still, problems persisted. In the throes of hormonal changes, a system with no justice or caring, medications she did not need, there were outbursts, screaming matches, tears and yet more law enforcement and more hospitalizations.

Somehow, with the help of the New Jersey Board of Education and the fine staff at Hackensack High School, we were able to help her finish high school with an accredited diploma.  We found a college that was nearby, had a good reputation and accepted her with her art portfolio.  To everyone's surprise, within the first year of college, she dropped art and fell in love with science.  I will make a long story short here.

My strong and beautiful daughter is a scientist.  She is getting her PhD in neuroscience.  She lives on her own and has a cute studio apartment.  She has many friends.  She just spent a week visiting us and then we drove her back and spent a couple of days with her.  It was the best time ever.  When I think of that dark time when I wondered if she might have to be institutionalized, or that night she barely survived, it is nothing short of a miracle.  But, it is her strength and innate intelligence that made it possible.  When she finally found something she loved and when she finally accepted her disability and addressed it, that was when she blossomed.

Best of all, she and I have collaborated on 3 children's books - she was the illustrator.  So, she is still an artist, as well as a scientist.  Of all outcomes of what might have been, this is surely the best and beyond my wildest dreams.

So, I say to those parents of children with autism spectrum disorders, persevere.  Fight for them.  Fight for yourselves.  Don't give up and don't give in.  You must be their advocate until they can be their own. It may feel like the world is against you.  Have courage.