Friday, January 25, 2013

Congratulations, your child has Autism!

I remember quite a long time ago,  reading an article about autism, and in it the author made a comment that has never left me.  Unfortunately, I can't for the life of me remember what article it was, as a mom of a kid with autism, I can't even begin to calculate how many books, articles, television clips, utube videos etc. I have watched on the subject. So if these are your words, please let me know, so I can give you proper credit.  In the meantime, I shall paraphrase....

"Imagine how different it would feel, when you are sitting in your doctor's office, anxiously awaiting to hear why your child is acting the way they are....imagine if the doctor said to you "Congratulations!  Your child has autism!"

Back when Limefreckle Jr. was diagnosed, at the tender age of 18 months (actually, he was officially diagnosed at 2, but at 18 months we started the process) I remember feeling completely shell shocked.  I really didn't know very much about Autism, Dustin Hoffman's character in "Rain Man" was pretty much what I expected Autism to be.  I was told that Limefreckle Jr. "possibly" had what is known as PDD-NOS.  Pervasive Developmental Disorder - Not Otherwise Specified".  It was a brief doctor's visit, I had been referred to a Developmental Pediatrician, who turned out to be a wonderful doctor, but that first visit was scary, I'm not gonna lie!  He basically said "this is what I think it is some information, come back in 6 months..."  and off we went into the world.....a brand new world I knew nothing about!

It was a scary time.  People around us had tons of advice, some not so helpful.   There was an urgency from some, that we had to DO something......Early Intervention is the key, don't you know, and we must start that immediately!  I remember telling myself so many times...."he's the same little boy he was the day before you walked into that Doctor's office....he hasn't changed, your perspective has.."

Imagine if the doctor had instead said "congratulations, your child has Autism!  You are in for one wild ride, hold onto your seat!" 

It's not been an easy ride, that's for sure!  The earlier years were the hardest, the meltdowns, the difficulties fitting in.  But the harder part to deal with was external......the judgements and opinions from other people.  The difficulties obtaining the right services and interventions that would help him.  There's lots to choose from out there.....some good, some not so good.  There are also a lot of people out there the purport to be experts in the field.  They aren't all......or at least, in my opinion, they weren't experts on MY son.  They had book knowledge.  They had read a lot.  But when it came right down to it, they didn't know any better than me why Limefreckle Jr. was behaving the way he was, or how we should go about dealing with said behaviours.  I quickly learned that if you put your faith in the wrong "expert" you will be sadly disappointed.  Some of these experts painted a very bleak future, and I later realized that was because they really didn't know HOW to help him, or exactly WHAT the problem was...but better to focus on the worst case scenario, rather than be honest, and admit that they don't know!

He's now 11, almost 12.  We are still immersed in the world of Autism, but it's a much happier, much calmer time.  We have finally found experts that actually KNOW him, and understand him, and allow him to be who he is!  He's thriving....the future is bright......and it all happened in HIS own good time.  I don't regret any of the interventions that we tried, but if I could change anything, it would be to have given myself a little more credit, and to understand that I'm as much an expert on Limefreckle Jr. than anyone else.  I think I've gotten better at that.  As the years went by, I learned to trust my gut, and if something wasn't working, don't waste time on it.....accept that it isn't going to work for our son.  There are SO many different ways to approach learning for any child......not all Autistic children are the same, and they aren't all going to learn the same.  Once I realized that I needed to find the right way for Limefreckle Jr. to learn, not try to pigeon hole him into a spot that other people felt was right for him, everything all came together. 

I wonder if I had felt that the Autism diagnosis wasn't something to be feared, but rather something to be embraced, if I would have been a little more relaxed during those early years! Imagine if his diagnosis was viewed as something to be proud of, rather than something to be feared.  How would the world be different?  How would the external forces look upon him? Would that have an effect on his outcome?  Hard to say, but it's an interesting concept!