The Search For Answers

Somehow, for some reason, I kind of thought that we had won the battle.  My son is now 11 years old.  Probably from the time he was 3 I kind of knew something was, well rather odd. His speech was delayed and while his pediatrician pestered me about it, I poo pawed it.  I was in speech therapy until the 6th grade.  I figured it was some genetic thing and I wasn't too terribly bothered by it.  It wasn't until my second son got to be a toddler that I started noting marked differences with their speech.  Then he started doing something very strange indeed.  He started flapping his hands.  He started kindergarten and even though I found out later his teacher had seen several red flags, nothing was ever said to me about it.  We had moved and had a different pediatrician by this time.  At one point in a Dr's visit my son started flapping his hands.  I thought BINGO !!  The Dr had seen it and I was going to get an answer.  The reply I got was even baffling.  This well studied, well educated Dr, who I had gotten rave reviews, about simply said, "Well that is interesting".  

That was not what I was looking for.  I wanted answers.  Why does my son does this?  Why does he shut down?  Why can he not act normal   Why can he not go from task to task?  Why why why?  I had so many Whys.  Later on with a different Dr I got a diagnosis of Sensory Integration Dysfunction.  Which made sense for all the sensory issues he had with sounds, smells, textures etc.   I got a referral to the autism research center nearby.  Then I got several cold slaps of reality.  I had pretty much been told my son was autistic.  But then I was told that until the center was done with him there was nothing more they could do for me.  I found out that health insurance ( at the time) was not required to cover anything autism related.  The testing that they wanted to do on my son would cost me several thousand dollars.  I didn't have ten dollars. 

So began 5 years of everybody knowing my son was autistic but not having a "formal" diagnosis.  5 years of dealing with a rural school district who had made it clear that in their mind my son didn't have a disability.  5 years of trying to find strategies online to help my son.  We had good years.  We had bad years.  Then this past year we moved to Texas.  In a matter of a few months my son was formally diagnosed by the school here.  He has a formal IEP with the school.  Things I had given up on ever getting before I got so easily here.  I thought PHEW.   My hard work is over.  Battle won!!!

Not so fast. I am not sure this battle will ever be won.  Because even though I finally have on paper what I wanted for so long, the fact is the issues my son faces every day are the same.  Same struggles.  Now we have different issues.  Is he taking advantage of the fact he is now officially autistic at school?  How much can he control on his own?    Now that is it all official where do we go in terms of doctors and the like.  I think I feel more overwhelmed now then I ever did before.  I thought a formal diagnosis would be the end of the road.  Instead I find myself on a new road.  Sometimes I feel alone on this road.  I am not sure my husband will ever want to educate himself on the condition our son has.  We don't agree on anything it seems now that we have this formal diagnosis.  Instead of giving us the answers instead we just have new questions.  So on this road we all go.  My son is learning about what it means to be autistic.  I am learning how to "officially" be a mother of an autistic child.   We will start the search for more answers together.  And maybe one day we will find them

Moki