Labels

Today Brother and I spent a few hours with a doctor and a psychologist.  They had reviewed all of the forms I had sent in, the forms his teachers had sent in, his medical report, his current list of diagnoses.

We talked about his medical history, his birth, his meningitis, his brain bleeds, his shunt.  We talked about his behaviors.  We talked about how he plays.  We talked about his lack of communication.  We talked about his social interactions,  I showed them all of the reports from JCPS. He was examined.

We talked about how his labels cover some of who he is, but there are still questions.

Why isn’t he speaking?

Why does he play the same way now that he did a year and a half ago?

I wondered where their thoughts were headed. And then the psychologist gave Alex a bell and he played with it.  He would have played with it for hours if we had let him.  She asked me if Alex would ever bring that bell over to me to show me – as in “Look Mommy!”  “Look at me!”  No, he has never done that.  And that was the moment I knew what they were going to tell me in another hour.

Autism.

I thought we would get some generalized something.  I figured we would get Autism eventually, years down the road.  But no, we have arrived.  Do not pass Go, Do not collect $100.

They suggested I get on the waiting list for a Medicaid waiver for future therapies.

They suggested notifying JCPS and bringing in an Autism specialist.

They recommended ABA strategies.

Alex has a lot going for him, they said.  And he will continue to develop – but it will be in his own way and in his own timetable.

I asked if an ID label (intellectual disability, used to be Mental Retardation) would be thrown at him one day.  Yes, they both anticipate that by the time he starts school.

I’m grateful he is at VIPS.  I’m grateful for all of the therapies he gets now and will get in the future. They felt he was in a good placement for him at this time.

Autistic and Blind.  What a combination! 

How will I feel six years from today?  What will I wish I could tell myself today?  That the emptiness will go away?  That my snuggly boy who interacts differently with the world will be alright?  Will you be alright, Alex?  How? What is alright, anyway?

Lead me Alex. Teach me Alex.  Let’s find our way together.