Thursday, June 3, 2010

Welcome to my World!

Hello to everyone out there!  Isn't it a wonderful day in the neighborhood.  It can be, but many times it's not when you have a child with autism.

My own journey in the 'hood started in April 1997.  Jacob was 3 1/2 and during a visit to the doctor, I heard the words "your son has Autism".  I remember like it was yesterday, and it was completely unexpected.  Jacob didn't have any glaring behavioral issues that I had noticed, but he had been hitting other children at his new preschool so the teacher suggested psychologist Dr. Sandra Kaler for an observation to see what was up.  I thought I would be receiving recommendations on behavior modification.  I wasn't expecting a diagnosis.  But a diagnosis is what I got and little did I know that I was entering a new and challenging world of which there would no be turning back.

In 1997, Autism wasn't the disability du jour.  It wasn't like it is today when just about anyone you meet knows someone with the disability.  Today, I guarantee you that in a room full of any number people, if you asked anyone to raise their hand if they know someone with ASD (short for Autistic Spectrum Disorder), most, maybe even all, in the room would.  It seems like Autism is everywhere!

In 1997, my only real Autism reference was the movie "Rainman".  Jacob was nothing like that.  His gross motor skills were were always on cue and age appropriate.  He talked late, saying just a few words at 18 months and finally using his language around age 2 1/2 (though I now know that Jacob was only using his words for his wants and not because he was trying to communicate), but Jacob's pediatrician never thought it was a problem.  And he was married to a behavioral pediatrician, so I would have thought he would have at least made a referral for a consultation before Dr. Kaler's diagnosis when Jacob was 3.  There were a few minor things that I'd noticed but never concerned me.   Instead of watching the magician or listening to the musical entertainment at birthday parties, Jacob preferred to play by himself in the host's bedroom.  I had to constantly monitor him in public because he would easily walk or run off without me.  I now look back on his developmental milestones and I can see there were signs.  As the saying goes, hindsight is everything.  But he was my first (and it turns out to be my only) child, and I had no reference to typically-developing childhood behavior.

Fast forward 13 years later.  He's now a typical teen in many ways.  He's a tall, nice looking young man though he still needs some prodding to properly shower and wash his hair, which is typical for a lot of teenage boys.  I've been working with a consultant for about a year and a half in a program called Relationship Development Intervention (or RDI - there are literally hundreds of initials in this world; it's kind of like it's own language, let's call it autispeak) and this has greatly helped improve our relationship.  He has some friends, not the type that call him often to make plans to do stuff, but he has a couple guys that he enjoys spending time with.  He has typical (thought limited) interests like movies, You Tube, Yugioh, and video games.  All in all, he's doing fairly well.  But the statistics for young adults with autism isn't great, so I'm working very hard to be sure he becomes a success story.  Time will only tell how well I have done and he will do.

So here I write about a world of which I have come to know very well.  And I have to say, and it may sound strange, that it has enriched my life in ways I never imagined.  I've met may wonderful families.  I've found that more times than not, that if parents are dedicated to their children, a disability will bring out the best in the Mom and hopefully the Dad too (though I mostly met Moms doing the work with their kids when I was out there with Jacob).  I came to appreciate a lot of things in life that I may not have valued quite so much if I didn't have a child with a developmental disability.  It influenced my employment choices, first as a behavioral consultant (which is a fancy word for a one-on-one aide in the classroom) and now as Principal of a small non-profit private school that incorporates the RDI program into it's curriculum.  None of this would have happened without Jacob.  If someone had asked me before he was born, "Would you like to have a child with a neurological disability that will last his entire life and will require countless hours of intervention and amazing amounts of money", I would definitely not have said "Sure, sign me up".  But I don't regret one moment of my life with my son.  In some ways, he has taught me more than I will ever teach him.

So, if you're the parent of a child with an ASD, you are definitely not alone. The Centers for Disease Control estimates that the incidence of ASDs in the general public is 1 in 110 individuals , so you there are plenty of families experiencing similar challenges.  You are a member of a community of Moms and Dads with the same responsibilities and worries.  For most parents with this responsibility, they don't know what they need to do or where to go to support their child.  It's a responsibility that is daunting, and scary, and exhausting, and overwhelming all at the same time.

For a long time, I've wanted to write about my experiences and what I've learned in the world of Autism.  I guess it's a desire to share my knowledge and help educate others so they can better help the people in their life with ASD.  I'm so much wiser now and my wisdom is something I wished I'd had 13 years ago.  If my knowledge is something that will help in anyway for anyone, then I know that the time I spend blogging is well worth it. 

2 comments:

  1. Welcome and best of luck with your new blog.

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  2. Welcome to the blogging world! I look forward to reading more of your posts.

    ReplyDelete