G’s New Job

School starts Tuesday.  G is very excited and asks several times a day if it is Tuesday yet and has us go over the days of the week between now and Tuesday.  I am very pleased with the school system so far, they appear to be eager to have G and have been proactive in making him feel welcome.  He got a great book from his caseworker over the summer introducing him to his school, his teacher, the supporting adults like the librarian, the principal and the school secretary.  The book had photos of everyone so he’ll be able to recognize everyone and feel less insecure.

Another example of how they’re working to include G came today.  His OT called, she and the group were discussing G and the difficulty we anticipate when he has to transition from one activity to another on a fixed schedule.  We already planned on printing out the schedule and taping it to his desk so he can refer to it throughout the day.  But they had an additional idea.  They asked us to buy G a watch to wear in school.  They’re going to give G the job of ‘timekeeper.’  It will be his job to keep track of the schedule and let his kindergarten teacher know when it is snacktime, art time, lunch time, etc. 

I think this is a fantastic idea.  It plays to his strengths in reading, schedules and process control.  It also has the added benefit of creating situations where he can interact positively with his classmates.  Last year in preschool, when a child wanted a book read his teacher suggested they ask G to read it to them.  G actually learned to hold the book with the pictures facing out while he read upside down.  His classmates started asking him for help with their activities.  It made him very proud and part of the group.  I have high hopes that this new job will do the same when it comes to facilitating peer relationships.

The Dreaded Cliche

As I tell people about G and our evaluation process, the one thing I hear most often is, “he’s still the same G he was yesterday.”  It is meant to be supportive and reassuring, I’m sure.  And yet, my immediate reaction is to leap over the table and choke the living shit out of the speaker.

First of all, nobody is always the same person they were yesterday.  That would be incredibly boring.  We grow and evolve, our challenges and experiences shape and change who we are.  Expecting him to be the same person he was yesterday is really not expecting much of him at all.

But the real point that is missed is this.  My son is the same awesome, loving, lovable, curious, intelligent, ever-evolving wonder that he has always been.  It’s the world he and I live in that has changed overnight.  It has suddenly become a darker, scarier place.  I don’t trust the world to accept him for who he is the way I do.  I don’t trust the world to welcome his contributions the way it should.  I now see the world filled with people who stare and judge, who exclude him by ignoring him, who will marginalize him because he is different.  I feel pricklier, more protective, ultra-sensitive to any slight that may hurt his feelings.

G may be the same person he was yesterday.  The world has become colder.

Moving forward

We’re making progress on the diagnostic path.  We’ve been contacted by the clinical psychologist who will administer the ADI-R, which is the interview given to parents of kids being evaluated for autism.  I’m hoping we can get the appointment set up for this week or next so we can get the ball rolling.  Once the interview is complete then G will have his ADOS evaluation.  The evaluation team will be comprised of a psychologist, an occupational therapist and a speech therapist (I feel like I’m forgetting someone) who haven’t met G before to ensure objectivity.  The autism specialist from the school is facilitating the appointments but is being very careful to prevent bias.  So I am very confident that the result of the evaluation will be correct.

Here’s where my personal crazy comes into play.  I am afraid – but I’m not afraid that G has Aspergers/Autism.  I’ve already gotten through the greiving process that comes from being told something is different about your child.  I’m comfortable with the idea and think it explains a lot about my child.  I’m not desperately looking for someone to tell me this was all a misunderstanding. 

Instead, I’m afraid they’ll tell me he doesn’t have autism.  I’m afraid they’ll tell me he is ’simply’ smart, energetic, introverted, quirky, just a boy or that he’ll develop emotionally slower because he developed intellectually faster.  All the theories we’ve heard from our well-meaning family and friends.  Then they’ll tell us he doesn’t qualify for services anymore.  They’ll take away all the great things in his iep designed to organize his day and give him breaks when he feels overwhelmed.  We’ll be left to muddle through on our own, we’ll be drug into conference after conference to discuss his social and behavior problems in school without ever having the understanding or resources that could help us all correct them.  And that is just my perspective as a parent.  I don’t even want to go into imagining what school would be like from G’s perspective without these supports.

How do you explain to someone that you want an autism diagnosis, without sounding nuts?