I am writing for myself and strangers. This is the only way that I can do it... Gertrude Stein

2/07/2005

A Long Day

I got up at 5:50 a.m. today and got Christian up and ready, and then drove sleepily 90 miles for our doctor's appointment. As I was navigating buildings and parking lots, I thought to myself, "Signs, People. It cannot be that hard." Christian actually had ridden down with the Ex who came to pick him up, and so I found them in a waiting room, Christian watching Green Acres on Ex's laptop.

It was 8:55 a.m., and they had just gotten there as well (we shared pleasantries about how ill-labeled everything was).

We were there until noon, and saw, intermittently: a speech therapist, a nurse practitioner (Christian's and my favorite-- he was very nice and funny-- everyone was nice); social workers; and finally, the doctor. In the meantime, we filled out inventories and answered questions, "Does he refuse to eat foods of certain textures? Some children will eat only yellow foods." "Uh, no."

And at the end of our time, we did finally get a diagnosis, thanks in large part to the dedication of Christian's teacher putting together such good records for us, so we didn't have to repeat a bunch of testing. I found out some surprising information about how high Christian's IQ is-- I had looked at the composite, not separate components before today. I hope that he got that from me.

Fortunately, this has been a slow and long day coming. I knew going
down that the diagnosis would be either Asperger's or Autism, and so
it wasn't a surprise. Christian has Asperger's. And the doctor actually said a lot of the same
things you did: why do we need a diagnosis? How will this benefit the
child? And I was the one who said, "Pardon my ignorance, but isn't
this diagnosis relatively recent? I don't seem to remember hearing
this term when I was a child." Truly, they have been using this
diagnosis only for about 15-20 years, and are still trying to
understand it.

Basically, they look at speech development, developmental delays, talk to the child, look at IQ tests, and they say: Okay, does this child exhibit behaviors, some ritualistic behaviors, that make him/her stand out from other children? And to what degree? Christian flaps his
hands, hums, tips his head to the side and spins (during his entire
recess, which bothers his teacher more than it bothers him), and
dances and hums. And right now he is beeping a little bit. But he is
easily brought out of it-- it has just been mentioned the past couple
of years at parent/teacher conferences, so we decided to nail down a
diagnosis for his IEP (he has one, for speech, but he almost doesn't
qualify anymore, and we want safeguards through high school and
college because it does take him longer to complete his work than
other children). He does also tend to say inappropriate things at inappropriate times (which Selina once told me that I do, when I asked her if she thought I had Asperger's and she said, "Yes, a little bit.")

So, as the EX told the doctor today, "I don't want you to think we are
using you, but basically, what you have given us (her diagnosis) is
exactly what we came down for today." And it was-- I fully expected
to walk home with the diagnosis in my purse, and indeed I have.

But I was really a wreck BEFORE the appointment-- I was told to
possibly expect MRI's, further referrals, blood draws, talks with a
dietician (possibly about a gluten-free diet), and weekly appointments
after this, etc. etc. etc. I really thought that this had the
potential to open a huge can of worms-- and time will tell. He is
eight. But he is so high-functioning (outside of the behaviors I
described, and social isolation, he really doesn't have any transition
problems, doesn't prefer only foods with certain textures, makes
transitions easily, has some social skills and makes some eye contact,
has empathy, is affectionate) that we said, "What is our next step?"
And she said, "Well, talk to the school and get the IEP revised."

That's pretty much it. Find an OT in this little place to do the
sensory integration therapy.

But I will cop to feeling significantly sorry for myself that I
overrode my partner's explicit No Kitty wishes to get a kitten today. Christian and I went out to lunch at the mall, picked up some Calvin and Hobbes and Vampire smut at the bookstore, and then I drove straight to our kitty shelter, did not pass go, did not collect $200, and adopted a 9-week old black kitten, whose name is either Shadow or Sirius Black (we'll see who wins: children, or Mommy).-- I have been having New Kitty Urges for a couple of months (since we lost a kitty)-- and today I indulged. Which is, I think, symptomatic of some need to self-indulge. Saturday evening, walked into that party (I think I
mentioned this on the blog), and literally walked back home to call
Mommy. And then yesterday during a super bowl party at my friend
Bob's house? They hadn't even kicked off yet when I went upstairs to
use the guest bathroom, saw the cozy guestbed and just kicked off my
shoes and lay down. Got up in time for my second favorite Beatle, a
beer, and then left. Hmm... Sleeping during other people's parties
when I'm sober-- does that suggest a little bit of shutting down and
avoidance?

But it's over now, and I fell asleep tonight with the little boys, and woke up to find their arms stretched out beneath my head on the pillow, which has never happened before and brings me almost to tears as I am writing, and also makes me think wryly, "Aren't their arms going to hurt?"

This should be an indication of how relieved I currently feel: I have meetings tomorrow at work and then other stuff that usually makes me so p.o.'ed with frustration that I am tempted to step outside for a smoke. And I don't even mind.

Sirius Black is trying to help me type, so I am going to take him to bed with a book and call it a night.

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