The day I realized Tate
had autism, and for a plethora of days after, I was dazed and distraught. Tate
got an official diagnosis well before the age of three. We had decided to use the researched based therapy called Applied Behavior Analysis (ABA) before we even had the diagnosis and we had already begun our in-home therapy with a certified behavior analysis. The books I read said
we had a window of time, a fairly small window of time, in which to help Tate. I
was frantic. I could not get therapies in place fast enough. I wanted
everything done RIGHT NOW! I needed to focus. I forced myself to calm down, get
organized, and get busy. I was up most nights reading about how to teach Tate and
then trying to implement the best strategies all day long. Every waking minute
needed to be an educational one for Tate. There should be no down time because
he used down time to stim. I was exhausted. I saw time slipping away and I felt
like I was moving in slow motion. I was literally in panic mode. Why would
nobody DO SOMETHING?! Couldn’t everyone understand how urgent it was that they
help me save my baby and his future? We not only had to teach him to do things
he had never learned to do on his own, we had to reteach him how to do the
things he had stopped doing and we were in a race against time. I kept reading
how elastic and malleable a child’s brain is until about the age of seven or
eight. After that, we would the progress would stall, according to the books I
read.* So, I pushed and pulled, kicked and screamed, made phone call after phone
call, and appointment after appointment, trying to put all of the people and
plans in place that could help us to help Tate gain and regain what he did not
have. He had lost so much language and so much of his personality. He was
afraid of ridiculous things, including other children. He could not pretend or
play with toys appropriately. He could not communicate effectively. He spent a
lot of time lost in stereotypic self-stimulatory behavior.
Before the very first
therapist showed up to see Tate in our home, I had successfully eliminated some
of the stereotypic behaviors like the hand flapping. But, as fast as one
behavior was extinguished, another would replace it. I targeted behaviors one
at a time. Sometimes the replacement behavior was worse than the one I had
eliminated, although none were ever as awful looking to me as the hand
flapping. I had to be creative. Tate loved to look at his reflection. He would
stand in front of the blank television screen or the oven and turn his head,
watching his reflection with peripheral vision. I put a fitted sheet over the
front of the television and hung a big towel over the oven door to keep him
from spending long periods of time engaged in this. Tate liked to run without
purpose. That means he would run back and forth through a room, but only for
the repetitiveness of it, not because he was pretending or playing
purposefully. I blocked his paths. Tate loved thick books so he could fan the
pages over and over. I put all the books except his picture books up higher
than he could reach. Tate liked to push the buttons of toys, to hear the same
song or noise repeatedly. I took the batteries out of those toys.
 |
| Tate at Preschool, age 3 |
Those first months of
working so hard are sort of a blur. Even after we enrolled Tate in the early
childhood autism program through the University of Kansas (KU), I was still
exhausted. I’d never worked harder at anything in my life than I did trying to
bring Tate back from the autism that stole him from me. When Tate aged out of
the programs KU had to offer and entered public school I found I would have to
wear yet another hat (boxing gloves might be a better illustration.) I had to
learn how to fight and argue and scrap with the public school district. Not everyone who was to be involved with Tate’s Individualized Educational Program (IEP)
was educated about autism, cooperative, and friendly. We fought for four long years,
with very little progress made compared to the years before those and the years
since.
We saw a tremendous amount
of growth academically the year Tate was in fourth grade and he has done well
every year since. Tate recently began seventh grade. Things are going so well now that I can
sometimes almost forget about those awful four years of primary school. I can
also go days at a time now without remembering the day that I learned what
autism is. Back then, when I was working so hard with a preschooler that could
barely talk, and again later, when I had to fight the public school for
services, no one would have been able to convince me that someday I would say,
“It’s not such a bad life.” But, now I can easily say it. I can say it now BECAUSE
of all the early intervention we did back then. I can say it BECAUSE of all the fights I won
to get Tate the services he needed. Today we reap all the benefits of the
things we did back then. Tate is only 12 and the work is not over but it is so
much easier now.
It’s not such a bad life. I’m
not sure I will always be able to say it. Perhaps we will have bad things happen again in our future. But for now I can say it. I really can say, “It’s not such
a bad life.” Wait for it.... I can even go as far as saying, "It is a really good life!" Autism is what Tate has but autism does not keep us from loving or
laughing. It does not keep us from going and doing. We are blessed. We have a good life, autism and all. A similar post: What did I do to deserve this?
*I do not believe now that we ever saw a huge change in the rate at which Tate learned after age seven or eight like I kept reading. Tate continues to make gains.
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