Scripting the Night Away.....

A friend, who also has a child on the Autistic Spectrum, told me recently that she’d like to move to an island where there were only families with at least one child with Autism. I offered the password; ‘Scripting the GPS’. If you don’t know what that means you can’t come on the island.

Where does the desire to further isolate our already isolated kids and families come from? A part of it is the protective maternal wish to shield our kids from a world that doesn’t understand them yet. But for me, it is also about protecting my feelings.

Children not on the Autistic Spectrum are referred to, by the Autism community as ‘Neuro Typicals’ or ‘NT’s or ‘Typicals’ for short. There is a slightly pejorative note to this. It’s not that we hate these children (I can’t, I have one of these too) but, we do hate how their effortless normal development highlights all the things going wrong with our kids. In truth my son needs to be surrounded by kids with healthy functioning Nervous Systems and social skills for modeling and perhaps friendship. But it is so painful for me to watch him not be able to do it. At the playground I watch children a year younger than Nick create imaginary worlds in the sandbox and I wilt glancing over to see my little guy repetitively parking the same car in perfect line with the swing set. At birthday parties Nick stays on the edges where he can safely navigate the sensory input while other children join in, giggle, tussle over games or toys. Again, my heart aches. Nothing is coming effortlessly for my son. Nor for me. For a social gathering I have to plan for the possible diarrhea explosion, pack foods he’s allowed to eat, stand guard that he doesn’t grab a forbidden goldfish cracker, and observe as the mother’s of typical kids witness my pain.

We’re going into the holidays with Autism again. This is fraught for me. GFCF everything free Thanksgiving dinner – where is the joy in preparing that? The prospect of buying toys he’ll never touch. The Christmas tree we can’t have because he is allergic to it. Explaining that to his NT sister. Memories of sadness from the two previous Christmas’s with Autism. I hate having to answer the cheerful questions; “How was your (insert holiday)?” All I want for Christmas is for my son not to have Autism. If I can’t have that, I’ll take an HBOT.

Our upside down country places so much hardship on such little children. A child is diagnosed with Autism every 20 minutes in the U.S. That’s 67 kids a day. If you have a boy in New Jersey their chances of having Autism are 1 out of 60 something. If you are a Somali immigrant your child’s risks are 1 out of 28. We better get a bigger island.

Have you seen the old Far Side cartoon with the crisis clinic, on fire, going over a waterfall? That’s the state of Autism in this country today. Perhaps my cheerfulness-fatigue is coming from the bizarre reality of living that daily while the world eats fruitcake.

What I really want for Christmas is not for all of my loving friends of healthy children to feel our fear and anger. It is for this new administration to quickly open and solve the Vaccine-Autism link. Obama is welcome on my Autism island if he can grasp the enormity of the Autism crisis in America and get to the bottom of it.

In the meantime, I will be gearing up to sit in front of our plastic Christmas tree with a drink with an umbrella in it. Hell, perhaps I’ll even rewrap some of last year’s Christmas presents. Makes good sense in this economy. But I will also go deep into the magic and possibility a child finds in Christmas, and wish hard on the good tidings of this season that by next Christmas these children will matter and the world will be turned right side up.

Yes We Can! (have a good Christmas)….Cheers! Alison MacNeil