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Anything is Possible if you Dare to Dream

January 1, 2008

Welcome to my World . . .

If you are a parent of a special needs child, then I'm willing to bet that you've heard some version of the poem "Welcome to Holland," which has been adapted over the years to fit many special needs children and parents. Nearly 6 years ago, I found myself on a plane to "Holland," except that it never seemed to land. I felt like we were circling Siberia.

My son was premature, had severe reflux and was allergic to "everything on the planet." He survived on specialty formula until he was 16 months old and then goat's milk, until we finally found the gluten free/casein free (GFCF) diet.

I met an angel, in the form of another special needs mother, who gave me a wealth of information on the GFCF diet, directed me to web sites where I could learn more about living with the GFCF diet in a milk, bread and potatoes world and gave me a cyber shoulder to cry on when my son passed another birthday without a cake.

Imagine spending three days with your child in the pediatric ward of your local hospital fighting croup and asthma and they have no food to feed him. They had no dye-free jello and looked at me like I was crazy for asking if they could make a scrambled egg without milk or butter.

Welcome to my planet!

I spent the first two years of my son's life in a holding pattern over "Holland" trying to find a safe place to land. Then, just when I thought it was safe to exit the plane, my then 9-year-old daughter was diagnosed with high functioning autism. In reality, she is high functioning only because we learned very early on in her life that we had to live on a very strict schedule with her or our entire world would come crashing down on us. We used to think she was a "difficult" ADHD toddler.

If I'd only known then what I know now.

Hindsight is not always the best sight, however. It turns out that we instinctively helped our daughter function on a higher level by involving her in sports (gymnastics & soccer) at a very early age to improve her coordination and by enrolling her in a Montessori pre-school and elementary where she could learn at her own pace and in her own space. To this day, after years of speech and social therapy, my now 6th grader still has trouble sitting at a desk, raising her hand and answering questions. Imagine what she would have felt like in public Kindergarten when she was practically non-verbal.

Austim used to evoke an image of a child sitting in a corner banging his head against the wall and I have a hard time explaining to people, who don't know much about autism and who don't really know my daughter, that an autistic child's behavior can have varying degrees. My daughter seems quite "normal" on the soccer field, as long as she knows the exact time and place of the game, the exact color scheme of the uniform she has to wear and whether or not both her parents will be able to attend. But, a sudden change of plans can send her into a meltdown worthy of the terrible twos. Try and explain that to spectators.

So now you have a brief introduction to "My World." We live on a different planet in our house. A planet where it's safe to be on the autism spectrum, you can always find something gluten free and casein free to eat, Mom knows how to make an "edible" GFCF birthday cake and we don't rush to the ER for a middle of the night asthma attack. Mom knows how to use a stethoscope, always has the asthma meds and nebulizer ready and knows when to say UNCLE and head for urgent care.

Our lives may be hectic, but we've long since landed in "Holland," learned the lingo and learned how to navigate the back streets.

Nianya