Thursday, April 16, 2015

No Deodorant Miracles, Just a Lot of Sweat and Tears

(Originally published Saturday, May 19, 2007 on Tales from the Crib blog.  Noe was 5 years old).

A couple weeks ago I dreamed that my four-year-old autistic son, Noe, was strapped down to a hospital bed while being examined by Dr. House. If you haven't seen the television show, House is an eccentric curmudgeonly genius who solves impossible medical cases in an hour. While House was examining Noe, something caught his attention and he started sniffing around the room until his nose landed under my armpit.

"What kind of deodorant do you use?" he asked.

"Secret, I think," I replied with a puzzled look.

"Switch to Dove and your son will be fine," he instructed in his irritated, know-it-all voice. And then he turned to leave, off to solve his next case.

Of deodorant was causing Noe's autism! Why hadn't I thought of that in the first place? It all made perfect sense....until I woke up.

It has been two years since Noe's diagnosis. Two years full of anxiety and research and therapies and more anxiety and lots of medical bills followed by even more anxiety. We have attacked his autism using a variety of approaches. We are treating him biomedically, taking advantage of supplements and keeping his diet free from gluten and casein, which often exacerbate autism symptoms. We have a private ABA program, which relies heavily on behaviorist theory to teach him new skills. He has speech therapy to increase his language. He attends a special ed preschool program, which is preparing him to be integrated into a regular elementary school.

Every time we start a new therapy, I try to be realistic. I tell myself he will make progress, but it will take time and patience and hard work. But a small part of me still holds hope for a "deodorant cure"....that a particular therapy will click with Noe and rid him of his autism forever.

It is possible. More and more kids are recovering from their autism.  Some kids respond amazingly well to certain biomedical treatments, and other kids, if they start young enough, can essentially be cured of their autism through hours and hours of behavioral therapy. Noe has hit a lot of developmental milestones in the last couple of years, thanks largely to his therapies, but he is far from cured.

Most days, I am ok with it all. I know that even if we never find that quick cure, Noe will still find his niche in life and be happy and productive. Most days I feel lucky to have Noe in our family. He is a sweet, affectionate, beautiful child who does a lot of normal 4-year old stuff: He rides his bike like a maniac, loves to swim and hang from the monkey bars, he whines about eating his fruits and vegetables and fights with his younger brother. Most days I say to myself that if this is our family's cross to bear, I consider myself blessed.

And then there are the other days. Days I spend on the phone with our health insurance, trying to figure out why they won't pay Noe's claims. Days I spend looking for qualified therapists for our ABA program, or trying to convince the ones we have to stick around even though we can't pay them what they're worth and they have no health insurance. There are evenings when I spend 4 hours getting Noe to settle down for bed, only to have him wake up every hour during the night. On his worst days, Noe can't focus enough to play or learn and reverts to his own world where he spins his toys or claps his hands or laughs hysterically at nothing in a corner by himself. On those days, when no amount of coaxing or bribing will bring him back, I go to my bedroom and scream into my pillow. I curse his autism and ask God, in all of His power, why He won't bring Noe back to us.

I am learning that some miracles come fast, others slow, and I'm redefining what Noe's miracle will entail. It will be the sum of the resources, energy and time we put into his therapy regiment over many years. It will encapsule all of the hard work Noe puts into his own therapy sessions. It will be amazing teachers and therapists along the way that find ways to motivate him to learn.

That said, I still wish all I had to do was change deodarant brands.

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