Tuesday, May 18, 2010

Would it have made a difference?

It has taken nearly 17 years but today there was finally an official diagnosis of "high functioning Autism".

When he was two his pediatrician said sweetly to me, "have you ever heard of Autism?"
But we never heard anything after that one question.
We have asked so many questions over the years.
When he was four, the pediatricians partner said to me, "every child develops differently and at different paces."
Of course they do. He's the youngest of four. We already knew that.
But something was different.
Last month when I was talking to his doctor about some of his struggles that she has been following for years, she said something about him being Autistic and went on talking...
Dumbfounded, I asked, "Do you think he's Autistic?"

We had paperwork from his previous doctor (who she replaced because the previous doctor retired) sent to her office (she also changed offices).
We had some paperwork from the school sent to her office.
Today she sat with the three of us and went over the reasons for the diagnosis.
He meets 9 out of the 12 criteria.
He only needs to meet 6.

I've always said that we really don't NEED a diagnosis because we have tried to deal with the symptoms and what challenges he faces everyday (he's had multiple generic symptom diagnosis).
But we really could have used this information years ago.

We could have had him in special programs since before kindergarten.
We had to take him out of school twice (for half a year each time) and then have him in half day school (for half the year), twice (he really struggled with hearing voices at the time and struggled with attending regular classes).
And no one told us that there was any help for him until right before he started the 8th grade.
And we asked. 
I know, I should have fought harder to find the right options for school but I really didn't know what to do.

I had the school principal say to me when he was in the fourth grade, "We can't handle kids with problems like this".
With the school psychologist's office right across the hallway.
And he didn't offer me any help even when I asked multiple times, "What help is available for him?"
I did have another school principal make changes so he could attend her school (boundaries had changed even though we lived in the same house). She tried to help him but still she didn't even know of the programs that were offered in the district.
We still had to take him out of that school.
I guess I really did fight for him.
I just didn't know what I was doing but boy did I fight for, work for and love that boy (and all my children for that matter---I know I didn't and still don't do it all perfectly---no one can---no wonder I have struggled so).

Would it have made a difference?
Would we have been able to get him more help?
Would people have been more patient?
More understanding?
To him and to us?

Would it have made a difference if we could have said, "This is what he has" or "this is what's going on".

I could have used more understanding.
Would it have made a difference if other parents, family and friends knew there was something wrong and that it wasn't just a parenting problem or that he wasn't just a troubled child?

Would it have made a difference?

It can make a difference for him in the future.
Even at 16.
He can be eligible for special services and special support that he may need in the future.

He has worked so hard to be a regular kid.
He has struggled with so many things throughout his life which includes pervasive anxiety and episodes of psychosis (the doctor explains that sometimes kids with Autism have a difficult time dealing with reality).
He has struggled with kids not being nice to him.
He has struggled with not being able to handle being in a regular classroom.
He has struggled with so many things.

He may not be regular.
But he really is quite spectacular!

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