The Video
Around the same time as the IEP review meeting, Abby was
flipping through some old flash drives, looking for more space to store her
concert videos, when she came upon an old video of Coleman. She
called me over to see it. Emma and I
walked over and watched. I watched it
once, and asked her to replay it. I
stared quietly. Emma was looking from
the video to me and back again, trying to glean my take on the video. “Let’s stop watching this. It’s making you sad” she said. “No, it’s ok.
I’m not sad. I’m surprised a
little, but not sad.” In truth, I was
sad. The video showed Coleman smiling
and singing along to a Ni Hao Kai Lan video.
And despite a time lapse of roughly 6 years, Coleman looked and acted
very much like he did today. He was a
little smaller then (not much) but his expressions, words, mannerisms, voice,
even his guys – were all exactly the
same. And that translated to me that
our special guy was not making progress.
And that made me sad. And I
started to think about that little video all the time.
I’m not sure when we dropped the ball in ensuring we had the
best plan in place for Coleman in terms of Autism treatment. Maybe it was years ago. Maybe it was only recently. I tend to think, however, that we never
really had the ball to begin with. And
that was where we went wrong.
I remember Coleman’s original testing for Autism at
Children’s Hospital vividly. I stayed
beside him during the evaluation, watching him anxiously, willing him to choose
the right answer, to select the correct object.
Biting at my nail, I had to restrain from reaching over to help him, to
not show him the right answer and say “Like this Coleman.” Sometimes I thought he nailed it (overzealous
parenting?) and at other times I worried why he hadn’t been able to complete
certain tasks. And after two agonizing
weeks of waiting, we were brought in for the feedback session where the doctor
slowly went through the test results, and told us gently that Coleman was
autistic. Stunned and saddened, we left
the office silently, in our hands pages of recommended resources to find help. Billy and I remained silent on the car ride, both
of use unsure what do say or do next. When
we arrived home, Coleman was there to greet us as always, not with words but with
his big smile, and we both knelt down and hugged him, and I think we both had
the same thought: maybe they are
wrong.
The truth is, we simply were not ready for the news. I don’t just mean emotionally of course – I
suspect no one is ever emotionally ready for that news. I mean we weren’t ready for another
fight. We had just finished three long, hard,
emotional and exhausting years fighting Leukemia. We were tired. Coleman was tired. We wanted a break. We wanted Coleman to have a break. So we took the doctor’s recommendations to
the school, and tossed aside the list of outside resources, and instead put our
faith and trust in the program that the school put together. It seemed a smart enough choice - the school
had been doing this stuff for years – they knew what to do, how to do it, when
to do it. We knew nothing. And I think we were relieved, to be honest,
to relinquish that control, to be free from the worry. After all that Coleman had been through, we didn’t
want to push him. We didn’t want the
full day preschool. We didn’t want
additional hours with therapists at the house.
Dear God, we thought, just let him be.
Give him time to enjoy life without tubes, without medicines, without
being sick. Give us time to enjoy him. And,
we whispered in the back of our minds, you are wrong about him anyway. He is just delayed. He just needs time to catch back up.
Weeks turned into months, months turned into years. And Coleman remained largely the same little
person through it all. And we didn’t push
for more services. And they were
certainly never offered. And then I saw
that video of Coleman singing Ni Hao Kai Lan.
And I knew the time had come for change.
It was like coming out of a long slumber (except disappointingly
I was still me and not a beautiful princess) and suddenly feeling like you had
missed so much. We felt like we had to
make so many changes, look at things differently, try new approaches…but we didn’t
know where to begin. So I called a
friend I hadn’t seen in a couple of years.
She too had a son on the spectrum.
I was filling her in on Coleman, on his behaviors, on the months of
downward spiral, and the lifesaving BCBA that had helped change things, and on
how we were looking to make some changes.
She told me about some changes she had made for her son, and how amazing
things were working out. “You need an advocate” she stated. “Someone
who can provide some guidance about the best approach for Coleman’s future” she
insisted.
A week later I was talking to her advocate on the
phone. We spoke for over an hour and she
asked me more in that time than I could even answer. She was brilliant, and after only a few short
discussions, I knew she would be enormously helpful.
The first step, she thought, was to have a new neuropsych
evaluation completed. We hadn’t done one since
Coleman was initially diagnosed almost 5 years prior. “Let’s figure out exactly what he can do, and
what he can’t.” A neuropsych is like
ground zero in terms of a plan. It lays
out rather explicitly the child’s strengths and weaknesses, and specifies
exactly what kind of programming/teaching should follow to enable the child to
reach his potential. I was excited and nervous for the
testing: in many ways I felt like Coleman
had really made some solid progress. But
then I would think about the Ni Hao Kai Lan video. So I made the appointment for the
evaluation, and waited anxiously for the testing day.
(The end. J No mistake.
I didn’t accidentally copy in only part of the post. I’m breaking this into two posts because, as you
can see, I tend to blabber on and on, and this could continue on until page 200
or more so I will stop and take a breath and finish tomorrow. )
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