We Had No Road Map

This story first appeared in the Northeast Mississippi Daily Journal and was written by the reporter Emily LeCoz. It is reprinted here with her permission.

Lucas is now 7 years old and attends second grade in a mainstream classroom. He no longer sees Dr. Goldberg and hasn’t since age 3. The family credits his achievements to Applied Behavior Analysis.

My autism story is, in many ways, similar to those of other parents who were thrust on a strange journey with no map and one hoped-for destination: normal. What is different, perhaps, is that in my case I found help early and am now headed down the road towards recovery.

I first realized something was wrong with Lucas when he was seventeen months old. While all his peers were pointing, clapping, waving and babbling, Lucas was simply staring into space or repeatedly opening and closing doors.

He fussed often, cried a lot and made very little eye contact. It didn’t happen suddenly but was rather a gradual progression that had escaped my notice until one cold day in January. He was ill and home from school. I was alone with him and decided to check his progress against a list of developmental milestones he should have reached by that age. My heart sank as I realized he failed every social and language checkpoint on the list.

I shared the results with my husband that night, who told me not to worry. Boys are slow learners, he said. Lucas is fine. But we took him to the pediatrician just to be safe.

The doctor was less than encouraging. He agreed our son was “off” and referred us to an ear specialist to see if the problems stemmed from hearing loss. The ENT specialist found fluid in Lucas’s ear and installed tubes. We felt sure things would improve after the procedure, but they did not.

So, we went to the Regional Rehabilitation Center, where our son was evaluated by a team of experts for two hours. They confirmed he had several developmental delays and attributed it to Sensory Processing Disorder (SPD). This was my first clue Lucas had autism. Although not all kids with SPD have autism, all kids with autism have some form of SPD.

After the evaluation, we began twice-a-week speech and occupational therapy for Lucas. And I began my quest for information about autism. I scoured the Internet and the bookstores, hoping to prove to myself that my son didn’t have this horrible condition. But every site I visited and every book I read only convinced me more that Lucas was indeed autistic.

Luckily, though, my research also provided me hope in the form of concrete actions I could take to lessen the damage. Action No. 1 was removing wheat and dairy from my son’s diet. According to the research, kids with autism have leaky guts from gastrointestinal issues. When the proteins in wheat and dairy – called gluten and casein – pass through the leaky gut and into the blood stream, they travel to the brain and attach themselves to opiate receptors. In essence, they get kids high.

Although skeptical of the information, I tried removing the foods nonetheless. I was willing to try anything. And to my amazement, it worked. Lucas stopped fussing and crying. He made more eye contact and started playing with his toys. All of this happened within one day of removing dairy and wheat.

That was the first day since January that I smiled. Our next step was finding a doctor – someone who wouldn’t dismiss our success with the diet as bogus or laugh off emerging science about autism as quack medicine.

Thanks to Regional Rehab Center Director Kay Mathews, and Shona Jordan, who is the mother of two special-needs kids, my husband and I found a great doctor to help us. In his opinion, most kids being diagnosed with autism today don’t have autism at all. They actually have an autoimmune disease that affects the way the brain functions. He calls it Neuro Immune Dysfunction Syndromes – NIDS. And he says it’s treatable.

We took Lucas to see Dr. Goldberg in June and have since learned through blood work that our son indeed has a weak immune system. The doctor prescribed two medicines: Valtrex for a virus that was active in Lucas’s brain, and Nizoral to combat an overgrowth of yeast in his gut that was compromising his immune system.

Lucas, who turned two last month, has responded well to both drugs. Since we started the treatment, we have seen the following milestones:

– He has begun to use a few words, such as apple, up and outside.
– He sometimes imitates us, which he had never done before.
– He can sit still for circle time at day care.
– He plays with other children.
– He understands what is said to him and can follow simple commands.
– He can even count to ten (though he skips the number seven).

These might seem like simple tasks for most kids at this age, but for our son they are miracles.

Of course, we still have a long road ahead of us and don’t know if Lucas will ever be “normal.” But we feel more hopeful now than we did just a few months ago. My biggest fear before was that my son would turn out to be like Rain Man, my biggest fear now is that he’ll need special education classes throughout his academic career and might always have to fight harder in life than his peers. I hope I’m not jinxing myself by writing this so early in my journey through this strange terrain and when so much could still change – for better or for worse. But with so many children being diagnosed with “autism” now, I think we need to talk about this as openly and as often as possible. Maybe then we can focus more attention on this medical mystery and
get our kids the help they need to recover.

 

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