Thaddeus Howze discusses both the obstacles and extraordinary rewards of raising a child with autism.
I am a father of a beautiful seven-year old son. He is autistic. You can absorb that while I tell you how great a child he is. He is warm and friendly. He is generous. He can be very, very silly. He is a vegetarian. He is serious at times, particularly when he is getting into trouble. He is so very intense. He is polite, except when he is being rude. My son is a contradiction in every sense of the word. But I think what people will remember most is that he is autistic. And that is too bad. You would be missing the very best parts of him if you did.
Statistics for autism say 1 of 62 children will be born with some levels of autism this year, and if it is a boy, chances are as high as 1 in 38. Recent research says nearly one percent of the nation’s children are autistic. These numbers are simply staggering. The lives of these children can be affected with early detection and early treatment. A question rarely asked is ‘What does this do to the parents of those children?’
When we began to notice things were different, we were concerned but once the doctor confirmed what we suspected, we were devastated. All of the things I thought I would do with my son were gone. He was my only child and at my age, I wasn’t likely to have another. I waited late into my thirties to be sure I could have a good career and be financially stable before I had children. My doctor told us he might never smile or show strong emotion, he might never speak, he might never develop any social interactions, he might never develop any real control over his bodily functions. With the pronouncement of my doctor, my worst fears were realized.
I told no one of these fears. I am a man. We do not acknowledge fear. It simply isn’t done. As a tiny child, I watched his development with trepidation and realized I would have to think differently about him. If I could not acknowledge his condition, I certainly could not overcome my fear. If I could not rise to the occasion, I certainly couldn’t expect him to rise to the challenge. I would have to be something more than I had been up to this point. Fatherhood would force me to make changes I never knew I could.
I asked myself what experiences did I have I could use to work with this challenge? I had discipline from the military. I knew how to organize resources, manage my time, and endure hardship. I had been to college, I could do research on the condition, train myself in how to recognize his behaviors and what they might mean. I could document observations and take them back to his doctors for interpretation. I had been a school-teacher, so I could work with him trying as many different learning styles as I knew and could learn to find those things that might work best for him. I was a technologist; could I use computers in a way to give him different ways of seeing the world and exposing him to novel things? But I had one more thing in my arsenal, my secret weapon that, up to this point, I had revealed to no one. I was autistic as well.
For my plan to work, I had to admit to myself, all of the things I had spent a lifetime learning how to disguise from other people. These habits were now the tools I would use to teach my son. I now had a plan. Could it make a difference? Had my denial caused my son irreparable harm?
Part II: The Father of Reinvention
When my son was four, he was still not potty-trained, could not effectively communicate beyond echolalia, a condition where autistic children repeat part or all of what they hear without understanding. He would ‘stim,’ a condition where the child engages in a repetitive activity to calm themselves and was still unable to effectively interact with anyone in a meaningful way. But I was not convinced he could not learn. He showed signs of unmistakable intelligence. My doctors wanted to be giving him attention-modifying medications. My wife and I did not allow it. How could we know what he needed if we saw him relating to us through a medicated haze? We decided there was only one thing left to do. We doubled-down on our bet.
I intensified his training, expanded his range of activities, increased his stimulation, and made him engage in things he refused before. I exposed him to the virtual world of computing and computer games. I taught him martial arts and thought about his world through my own experiences with autism. I slowed down. Used to moving fast, thinking fast, reacting fast, I tuned myself to his speed. Sat down with him in the yard. Looked at the things he found interesting. Really looked. I listened to my wife when she said shout less, talk more. Really listened.
And we began to make progress. But I was the one changing first. We refused to give him anything without him making an effort to speak to us; no words, nothing happens, speak and you are rewarded. It was terrible at first because he was so frustrated. So were we. This process caused more than one fight in our household. We spent two years struggling and right when it seemed nothing was going to happen, we made a breakthrough. I was learning how to make music on my computer when he came to me and wanted to sit with me. We talked simply at first but I had his attention and he learned with me.
I learned to paint watercolors and draw images on the sidewalk in chalk. I am not artistic, at all. We sang. He has a lovely voice. I can’t sing a lick and he forgives me anyway. We played games with flash cards, disguising learning as fun. I learned to make music using computer software and he learned with me. He loved it. I put words on all the doors so he could learn to identify them and relate to their importance.
We watched movies and read books, while I described to him contextually what was happening in the movies and books we read. We did martial arts. I made him cry a couple of times, but he was fierce and did not stop fighting. We hugged a lot. Spent a lot of time at the park, letting him socialize in his curious way. For a kid without language, he did not have any problem playing with other kids, and for the most part, they did not seem to mind if he didn’t say much. He was without fear, climbing to the top of everything in the park. I hovered. I was over-protective. I got over it.
My son is seven now. He can dress himself. He can brush his teeth, he is potty trained and can bathe himself. He is in the second grade. He spends half of his time in a special needs class, and the other half in a mainstream classroom with a support teacher if needed. He is a movie buff, and has an extraordinary memory. He can remember the lines to almost every movie he has ever seen. (So can I.) He has a knack for technology and has broken at least three VCRs in his quest to learn about it. He watches his DVDs in French and has begun to learn the language. He studies Chinese with me, and has a natural facility with any language. He is utterly fearless in the park and has even participated in a skydiving simulator with an utter abandon and complete joy, something I had never learned.
My life as a parent and my work in information technology changed as I worked with my son. Sixty hours a week was not ideal if my goal was to help my son reach beyond his current experiences. I was hiding from my pain by staying at work. I decided to stay home with my son more. I opened my own consulting firm to stay home and used my experiences in IT to create new tools for him to learn with. I began to write my first novels and finished one of them last month. I embraced living more in the moment and realized life is not about how many breaths you take but the moments that take your breath away.
My son has taken my breath away every time we work on something new that neither of us knew we could do before. My work/life balance has been altered. Instead of living to work, I now work to live. My family has taken a new level of importance. I am not advocating leaving your job if you love it. I am advocating loving your family before the time passes you by and you realize what was really important to you. No one goes to their deathbed thinking “Boy, if I had only worked a few thousand more hours before I died.”
Is my son Kimahri better now than when we started going to work together? Yes, he spends his summers at work with me and my clients. Yes, he talks now, sings and is an all-around affectionate child. All the time. My wife laughed because she said there would be a time when I would want him to shut up. But I don’t. Not really. Is he out of the woods? Not yet, he still has a long way to go. And if I keep changing with him, I think we will be just fine.
Photo — Thaddeus Howze