Thursday, July 31, 2014

It's Not Such A Bad Life

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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  1. Thanks for sharing - I love reading other families stories and to know that I'm not alone in this outer universe we call Autism. Life is what we make it and every day challenges are often big enough but we all seem to draw extra strength when added challenges come our way. Awesome work mum, you are an inspiration to me and to many others. Love ya work!

    1. You are so welcome and thanks for the kind words. I hope that a others can be encouraged. It is so much work but so worth it.

  2. Thanks so much for sharing. I am the mom who wrote the article about the two young boys in Texas receiving ABA with the new child-only insurance plans. Right now, I feel smack dab in the middle of the frantic, crazy nonstop busy years. Dawn to dusk therapy, trying to make the most of every moment. Stories like this give me renewed energy and hope :-)

    1. Jill B, I liked your blog post as well. I am so glad you are doing all the hard work because it will pay off. Keep it up!

  3. Hi Lisa,

    Just happened on this post on my FB feed from a fellow ABA practicum student. We both had the wonderful pleasure working with Tate in those early years at KU. I have so many fond memories with Tate! Thank you for the update, they grow up so fast! THANK YOU FOR BEING SO AWESOME!


    Lindsey (Baker) Noblot