Meeting autism halfway

Tomorrow, I go for the very professionally-named "Parent Feedback Session" with the two highly respected neuro-psychologists who have been working with my kid.  They will discuss the hours of testing, record review, and parent input they've been given and present to me a picture of how A thinks.  This isn't even like the parent-teacher conference you go to when your 11 year old kid has been bringing home A's and B's, or to complain to the teacher about your kid  negotiating with you for phone privileges in the evenings because they have friends who are calling.  For my eleven year old, there is a certain element of dread.   I don't want to hear what the doctors have to say because it is depressing.

Arguably, autism has been a part of A since birth.  However, for years, with successful interventions, he was doing as well as could be expected.  He may not have had friends in the typical sense, but other kids, from school and church and certainly his sisters, loved him and accepted him for the quirky kid he was.  He was enrolled in a high-quality school program, off to speech and occupational therapy after school once a week, attending gym classes and swimming classes (we have fond memories of Mr. David from the Woburn YMCA), and going to play therapy with a peer or a sister.  There had been a girl in his class every year who nurtured him: Thank you April, Kaylee, and Kristin.  People loved A, included him in birthday party invitations, came to his birthday parties, and played with him.  He was just "one of the students" in his elementary school.

Then, he moved schools and arguably his rates of academic and social success started to slip.  He stopped being able to learn most things.  The new school didn't have the right tools to help support him.  He didn't have friends. When he misbehaved, they sent him home.  In a collective nutshell, they didn't help him.

Which all leaves us, three years and a whole lot of knowledge later about who Andrew is, trying to figure out how to turn everything around. I'm an advocate, I do this for a living. Let me tell you, it's a hell of a lot harder when it is your own kid.  I know the graphs are going to show regression and that makes me ANGRY.  Nothing like a school district who should have known better, and having the testing showing Andrew was not making progress there.  The bright side is he somewhere else now, no longer are there incompetent people to "advocate" for or "teach" him.

Mostly, what A needs is love and hugs and gentle care, care which needs to be firm a lot of the time.  Our lives are highly structured, designed around autism and its quirks.  I know all of this.  I just am scared to know the data: the numbers.  Will my kid test as mentally retarded?   In some ways, data is boring and meaningless when compared to an actual child.  In other ways, a lot of what will be said will guide me as to how to best advocate for A. What kind of school will he go to? Will he ever be able to go back to inclusion with success?  Will he ever want to be friends with other kids? Play baseball, or talk meteorology, with peers?

Autism is no crueler than many other disabilities. Some kids have it a lot worse. I get that. What I don't get is why the change in his developmental trajectory.  He was going to Sunday School with a helper (an "A's Angel"- thank you Lynda for that term), he was participating in typical peer activities. Now, he just wants to stay close to home. He hates his grandparents and one of his sisters. He doesn't have a church.

Please send some good karma tomorrow as the adults talk about what's going on with A and figure out some ways to help him as we move forward.  Maybe that is meeting autism halfway- not embracing it, but not ignoring it, either.  Just living, sometimes very sadly, with it.