I don't usually write quite so personally about my children.
I try to keep some distance between them and the World -even here. But I feel this is an important
post. I told Joe about his diagnosis recently and I wanted to share that with you. I don't claim to be an expert or that my approach will
work for everyone (anyone!). But I wanted to post this experience and my way of
handling it, so maybe those that come after may learn from me; -whether I did
well or not!
Every parent of a special needs child eventually asks themself: "Should I tell him (/her) of the diagnosis?" " ...How?" and "What if... and then ..."
This is something that had been going back and forth in my
mind for some time. I had always planned to tell Joe that he is on the Autistic Spectrum when
he is "ready". Of course, the
trick to that strategy is defining and determining readiness, and then -for us-
in picking the right time and the right things to say. Joe tends to process things in phases. You
can tell him something and he will take it in, not say much, and then over the
next couple of days or weeks, he will ask questions about it. By the questions
he asks, I know he has been thinking deeply about it. It can take Joe weeks or
months to become comfortable with a concept.
So recently, I figured Joe was about ready to know the truth
about himself. I reckoned the summer
break would be a good time to tell him; a time which would not interfere with
school if he took the news badly, and telling him early in the summer would give him a few months to get used to
the idea before starting Middle School in the Fall (can you believe he is
starting Middle school already?).
It is funny how opportunity presents itself. The wednesday
before school broke for the summer, Himself announced that he would need to be
away for the weekend on family business and he could take one child with him if
they so chose. Grace so chose, Joe declined.
The kids finished school on Friday morning. After saying our goodbyes,
we went home with report cards in hand. I read Joe's report card, which he had
been stressing about for months. It was OK. Not great, but OK. He is on grade
level for most everything except writing. I sat down with him and we went over
it, me telling him I thought he had done a good job, but obviously he needed to
work with on his writing, something with which myself and the teachers would help him.
Joe got upset. He
went up to his room and shut the door. I
followed a few minutes later. He has a loft bed and when upset, he goes into
the space underneath it to get away from the world. So I sat on the floor on the
other side of the ladder and we talked through the ladder. During the
conversation he said a lot of things about being different and he referred to
himself as 'ghost': "I'm a ghost.
I'll always be a ghost and there is nothing you can do about it". He has
done this once or twice before, and I
didn't (don't) know exactly what he means by it. I figured it meant he knew he was different
in some indefinable way. I knew then,
sitting on the floor that I needed to define it for him. I also realized that
the weekend would be the perfect opportunity;
with the teasing, attention hogging Grace out of the way, we could talk about it openly
with time to process, without fear of embarrassment for him.
I told him. "We need to talk. I need to tell you some
things about yourself, which I think will help you to understand better. We'll
do it tomorrow after Grace and Daddy leave" I saw his eyes get curious, but he just
nodded. And looked a little more
hopeful.
I dug through a bunch of baby pictures that night. Pictures I had put away, because they are
painful for me to look at. Because you can see the change in the pictures.
There is a definite difference in Joe Before Autism and After Autism. I have hardly any picture of Joe at 2/3
years old because that's when the Autism was most evident. I'm sorry now, of course, but I can't un-ring
the bell there... (Unfortunately, my
scanner is on the fritz, so I can't post these pictures right now)
The next day, after brunch and cartoons and some of the usually
Saturday routine, I sat Joe down with the pictures.
I told him the whole story.
I told him that when he had been born, he looked like a tiny
old man with huge feet. That he had been a happy, curious baby. And that when
he was about 19 months, he changed and lost all his words and skills. I told him that I had taken him to the
doctor, and my concerns had been ignored. I told him that I had not given up,
and had seen other specialists and sent him to school to help him, had
consulted yet *more* doctors and
specialists, had tested his hearing and vision and had taken him to the university
for evaluation where finally at 5½, they had told me he was on the Autistic
Spectrum.
I told him what I had been told by one specialist when he was
about three: to "prepare myself" because my son "may never talk
and would probably never read or write or go to a regular school". I told
him that most kids who lost skills like that (i.e. had a full scale Autistic
regression at that age) never came back to join the world again and that he was
unusual for how well he did. I told him
that I had always believed in him -have never believed that one doctor. I told
him that I had fought for him and that I always would.
We went back to the report card and looked at it with new
eyes. I explained that for him, a kid who had lost roughly three year's worth
of skills, to be on grade level for most everything was a terrific achievement.
I told him to look at it this way: "In six years of grade school, you have
made almost nine years of progress. That's why I am proud of you"
And he glowed.
I knew he had more questions, the main one being the label.
I told him what they had told me at the university "he is on the Autistic
spectrum (and I explained a little bit what that is), but we are not sure where. We are calling it Asperger's syndrome (because
he is so high-functioning)" of course, he had a giggle that his mom had
used "the 'A' word" and I told him "so you're an Aspie"
"I'm an Aspie?"
"Yes."
He thought about it for a second, decided that was OK and
then started with the questions:
"Is this why I get Speech Therapy?"
"Yes"
"Does this explain my stutter?"
"I think so, although there are plenty of kids who are not Aspie, who
stutter too"
"What about my synesthesia?"
"Yes. It's connected. Some Aspies and Auties have synesthesia, but
not many. Synesthesia is still pretty rare."
(sorry I know this is the first time you guys are hearing about the synesthesia,
I had kept it under wraps until now, out of respect for Joe's privacy. I may
post the full story another time. Or I
may not)
We talked for a long time and then he floored me. Joe
clearly has inherited his opportunistic
mother's sense of timing, because he saw that we were being open and
talking about conditions and stuff and so he took the opportunity to ask a question of
me:
"Mom, do you have a condition that causes you to pass
out?"
*gulp*
"Why do you ask that, sweetie? Has there ever been a time you couldn't wake
me (I asked, terrified)?
"No. But I remember that time at the park... Remember?"
Of course I remembered. I had taken them to the park after
dinner, had started to feel seizure-auray almost as soon as we got there, and
had told the protesting kids to get in the car after only a few minutes ("But we just
got here!"). I had told them then
that I "felt dizzy" and needed to go home and they complied. Even though it was several months ago, Joe had remembered and had waited for the
right opportunity to ask me about it (see what I mean when I say he processes stuff?)
I was honest with him.
"Yes. I have a condition that causes me to pass out and take funny
turns. I have had it for almost three years. That is the reason why I was in
the hospital so much a few years ago. But it is not dangerous and I am not
going to die or anything"
Joe nodded.
"I thought so"
He thinks a lot, that boy. This is a good thing.
Time will tell what he thinks of all this.