By Guest Blogger on July 30, 2009

Our Family’s Journey with Autism

By Tracy Fox

When my youngest son Ethan turned 18 months old, I told my husband Charlie, we’re going to have a problem. I had just called the pediatrician to make Ethan’s 18 month checkup appointment, and in my gut, I knew that something was wrong. I didn’t know exactly what, but having a 3 year old son Ben helped me see what Ethan should and shouldn’t be doing. And at that moment, I saw, really saw how far down the rabbit hole we had gone.

At that time, Ethan was not sleeping more than 2 hours a day, and never in a row. He walked early, around 8 months, and now would run around the house in circles, jumping on and off furniture for hours until he collapsed from exhaustion. He refused to go to sleep, so at night it would take at least 1 hour of holding him still, with him fighting and biting me, for him to pass out. While he had been a good eater for the first year, by 18 months Ethan had stopped eating everything but bread, french fries and milk. He couldn’t tolerate the feel or sound of water, and would bite me at least 50-60 times per day in frustration. He did not speak at all, and the only time I heard his voice was when he would scream in the middle of the night. He eschewed the childhood toys I bought him and instead lined up all of my bath and cleaning products. He loved to draw with crayons, except he drew all over my furniture and walls, making my home look like some strange modern art exhibit.

Most of all, Ethan had no eye contact and did not respond to his name. I would spend hours trying to get his attention, yelling, whispering in one ear, then the other, banging doors and pots and pans, to no avail. I could not hug or kiss him, as he hated to be touched. As a baby he smiled and laughed, but now I never saw any emotion out of him except frustration and anger. He would not look at anyone for more than a few seconds, as though it hurt him to focus on anything. He did not recognize that I was his mom, or that he had a father and brother who loved him. My son was in his own world, and I was not a part of it, no matter how I tried to enter.

I had become very depressed, trying to get through each day. My life has always been busy, working full time as an attorney, raising 2 young boys, teaching aerobics and yoga and enjoying family and friends. But now I couldn’t sleep, eat or do anything for myself, because taking care of Ethan overwhelmed us. It was impossible to leave him with anyone, as he had often tried to run away and needed to be watched constantly. My husband and I took turns trying to keep a happy environment for our older son Ben while trying to take care of Ethan. My worst moments would be on the drive home from work, alone with my thoughts. I would cry the entire time, both from exhaustion and also not knowing what I would face when I got home.

I went to a variety of doctors and therapists, but no one could tell me what was wrong with my son. I was told he might be PDD-NOS but I did not know what that was or how to help Ethan. I kept asking if he was autistic, but none of the professionals would give me a straight answer. My mom instincts told me autism was a possibility, but even more importantly, I knew that I couldn’t help my son if I didn’t know what was wrong. Eventually, I went to the McCarton Center and after a full evaluation, was told the words that I knew in my head but still broke my heart: Your son is autistic.

Once I had the diagnosis, I researched for hours online and bought every book I could find on autism. I learned that intensive early therapy was crucial, and after countless phone calls and arguments with Early Intervention officials, Ethan received ABA therapy, speech therapy and occupational therapy. We had 6 therapists a day in our home, from morning to night, each one working to help Ethan. Each therapist had a special skill and all were trying to break through the haze to get through to Ethan.

Still, no one could address the internal issues plaguing Ethan. Traditional doctors did not recognize that his refusal to sleep, constant diarrhea and zoned-out look might be related to diet issues. No matter how many times I said it was unhealthy to have such a self-restricted diet, my pediatricians claimed that it was typical and normal to have a child only eating two foods. While I knew many children limited their diets to a few foods, my gut told me that Ethan’s diet was unhealthy and was hurting him.

Little did I know that the Agut had everything to do with it. With luck and God’s grace, Charlie came across on the internet a website called Defeat Autism Now. These DAN doctors thought outside the box, looked at the symptoms each child had and discovered a profound connection between autism and diet. They found that by eliminating certain foods and including significant vitamins, many autistic children saw dramatic improvement in their social, cognitive and functional skills, and some even recovered completely.

Armed with this research, now I was on a mission to find the best doctor to help my Ethan. It wasn’t that I didn’t love or accept my child as he was; it was because I loved him and would love him no matter what. I knew Ethan was locked inside himself, and that it was my job as his mother to do everything I could to give him the best life and health possible. Ethan deserved nothing less.

I found Dr. Kenneth Bock, a DAN doctor, during my internet research and called his office. His kind and patient staff asked me many questions but informed me that Dr. Bock had a seven month waiting list. I knew I couldn’t wait that long. Through tears and outright begging, I managed to get an appointment. Meeting Dr. Bock was one of the best days of my life. He spent hours with me and Ethan, asking hundreds of questions about my pregnancy, family history, and Ethan. Dr. Bock never promised me a miracle, but said he thought he could help my son and that was what I needed to hear. I told Dr. Bock that all I wanted was for my son to be happy and for him to say I love you Mommy. I left his office and for the first time in a long time, felt hopeful.

From that day on, we looked forward and never back. Ethan was put on the gluten-free, casein-free diet, and three days after beginning it, he slept through the night for the first time. I woke up the next morning, shocked that I had slept so long, and ran to Ethan’s crib. I was terrified that something was wrong with him. What I saw was my beautiful boy sleeping peacefully, a sight I had never, never seen, and my heart was ready to burst.

Three years later, we have continued with the gluten-free, casein-free diet, incorporating vitamin therapy and chelation, to restore Ethan’s gastrointestinal system. He thrives on his diet of healthy proteins, organic vegetables and fruit, and rice and potatoes. I am thrilled to say that he is one of the happiest, smartest, most well-behaved boys in his pre-school class and will be attending general education kindergarten in September. He has lost his autistic diagnosis, meaning that he longer exhibits any of the indicia of autism. Most of all, he is a loving, happy, fun little boy who enjoys life and his family and friends. People who meet Ethan have no idea that he is autistic, and often don’t believe how severe his condition had been. To this day, Ethan only eats foods on his diet, and will often ask if a new food will ‘hurt his belly’ or ‘make him sick.’ Thanks to the ever expanding availability of gluten-free, casein-free foods, I can make Ethan the equivalent of any foods his friends have at school and parties, and he truly does not recognize any difference.

When I look back on the struggle we have endured, I thank God for giving all of us, especially Ethan, the strength to be positive and overcome our obstacles. Everyday isn’t easy, but the joy on my son’s face is infectious, and pervades every aspect of my life. People ask me why I always seem happy, why there’s always a smile on my face. When I hear them, my smile gets bigger and I say I have 2 happy, healthy boys who are the loves of my life- how can I not smile? This fall, I am running the ING NYC Marathon on behalf of Autism Speaks. I know this will be an incredible challenge, but if Ethan can fight as hard as he has to overcome autism, I can run 26.2 miles in his honor. I am the luckiest woman in the world, and I know when I cross the finish line, my little boy will be there smiling, with his thumb up, saying I love you Mommy.

 

 

   
 

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