Autism-World

I am breathing heavily again, tugging at my chest. I am weak, anxious, nervous. I am constantly dodging panic attacks, flirting with collapse. I am worn. I cannot sleep. It seems that sometimes stress is my only companion, but it is not my friend. It has wounded me. I have suffered greatly in my battle with autism. My boy, Christopher, 11, has it. He is a loving friend, a strong young boy and a dedicated son, but as we parents know all too well, the issues surrounding autism can be very stressful.

Autism has forced me to become unyielding, unrelenting and undaunted…and exhausted. It can be a lonely existence filled with stress as I face constant hopelessness and desperation. I have fought for finances, therapies, programming and training. I have battled the school system, the government, the medical profession and the law. I have read hundreds of books, researched applied behavioral analysis (ABA) and other methods, and have spent thousands of dollars on various workshops. I have studied diet, bio-medical intervention and naturalistic teaching. I have sacrificed my marriage, my daughter’s happiness and my health. I have, as the saying goes, “begged, borrowed and stolen” to help my boy, all for a wisp of a kiss, a fleeting hug, the sound of his voice.

After Chris’s diagnosis, the physical and mental manifestations were severe. They, in some cases, still are. I gained weight, the lines in my face became deep and I was always, always tired. I could be angry and ill-tempered at times. My marriage sometimes felt empty. There was no time for romance or secret moments. The most time we had together was at our IEP meetings. We poured everything into our son. My teenaged daughter, even now, is expected to be strong and always helpful. She is forced to dance around therapists, doctors and teachers. At times it seems I have lost sight of her.

And then there’s the financial stress. I have just finished cashing in all our stocks, IRAs and mutual funds. I am working three jobs and have raised and borrowed tens of thousands of dollars. Still, the stress builds. We are always behind on our bills. We must find a way to pay for vitamins, speech and language therapy, supplements and school. We have been to DAN doctors, purchased secretin and attended dozens of expensive conferences. This isn’t even including amounts due for the rest of us. I still owe money for ?among many things ?oral surgery, testing and evaluations. None of this is cheap. The stress is overwhelming.
A Family Tragedy:
As If Life Wasn’t Stressful Enough

My wife and I worried constantly about Chris’s life down the road. What services would he need? What did the future hold? What would happen when we were gone? The thought of death brought on a heavy, foreboding feeling. Could my daughter handle the stress? Would the agencies intervene? Would there be enough money? Would Chris retain his comfort zones? We bought insurance, developed a trust fund and created our living will.

Then the unthinkable happened. My wife died two years ago after a horrible battle with cancer. Allow me to speak of her for a moment. She was a loving mother and dedicated advocate, she was a beautiful wife, she was my friend for 25 years. She stood strong and soothed me, attempting to keep the stress at bay. Since her death, we’ve established many programs in her name for those touched by autism: The Jae Davis Parent Scholarship sends 10 families every year to the Penn State Summer Autism Conference; the Jae Davis Intern Program at Franklin and Marshall College in Lancaster, Pa., allows undergrads to work with children with autism and receive college credits; the Jae Davis Parent Memorial Award honors parents of children with autism. On the anniversary of her death, Congressman Greenwood (R-PA) honored her before a session of Congress. She was our hero.

Without my wife, my stress has a different feel to it. I don’t travel by myself because I worry about something happening to me. I stay close to my son because his mommy isn’t here to comfort him anymore and I have had to come to grips with my own mortality.
Life Goes On,
Stress Remains

I am balancing on a tightrope: earning money, spending time with my kids and worrying about the future. The everyday duties of being a single father can drive me mad. Scheduling is ridiculous. I used to have someone to share the responsibilities with when taking Chris to school, shopping or doing the laundry. Today, though, I sit alone in IEP meetings. I have lost my partner. We were a team.

When we travel or go out for the day, there are so many things to remember. I must pack everything that Chris needs, the right foods, his favorite movies, things that make him feel comfortable. Before we leave, I must communicate where we are going, and decide whether I need to show him a social story to ease the transition. Of course going out in public is both tricky and stressful. Keeping him safe is an issue, but so is sociability. I am constantly preparing my son to face the world while respecting his privacy and personality. On the other hand, I am also preparing the world to meet and respect my son. People are tough on us. They stare, judge and comment. I wish the world could see what I see: my son is so angelic. I want people to know him, to greet him, to befriend him. I want them to simply say, “hi.”

Mind you, I am not whining. Everyone has difficulties in life. As the adage goes, life is not fair. There are many wonderful, positive things in my life ?my children being the top two ?but my message to parents is that adding autism to the day-to-day stresses can bury you…if you let them.
Do Something Nice for Yourself for Once!

I implore you to take time for yourself. I have learned to become a little selfish and not feel guilty about it ?stop for coffee, run an extra mile, buy a new shirt, steal a moment with my daughter, take time to remember my wife and pick Chris up early so we can shop in the mall for movies. I know I cannot do it all. I have learned to say “no.”

But as parents, we have a 24-hour-a-day, stressful job. We have to take care of our children, comfort them and be their voice, but also enjoy ourselves. Playing and laughing with Chris is the best therapy I know.

About the Author:

Bill Davis is the author of Breaking Autism’s Barriers: A Father’s Story and Dangerous Encounters: Avoiding Perilous Situations with Autism. He has three children: Danielle, 27, Jessica, 16, and Chris, 11.

This entry was posted on Saturday, March 31st, 2007 at 8:57 pm and is filed under Autism Stories.