Friday, November 21, 2008

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


Tim and Djamila said...

alison. really beautiful writing. I wish i could do something to grant you your christmas wish. Both of your children are so lucky to have you as a mom.
Love djamila

Alyea said...

Dear ALison,

I;m Djamila's sister Alyea..I live in Los Angeles
and I read your blog about your son---I JUST wanted
to thank you for a wonderful written piece and
I wish i could do more to help...most People, including me
can't understand how hard it must be to have an
autistic son---I hope your holidays are
more than you hoped Alyea RIker
and thank you for telling us how hard it is to
be in your shoes-People whose kids don't have such worries waste their time I think i such lame

Hummingbirder said...

Thank you for sharing. Us mom's (with children with autism) understand what you're going through...{{{hugs}}}

~Zurama~ said...

I feel the same way you do. Just know that though we can't go live on an island, there are many going through the same frustrations-not that it makes it any easier.

Thanks for sharing! :)

Anonymous said...

Hi there,

Can I ask you how you feel about birth drugs? Do you feel demerol or something similar played a part in your son's outcome?

DaxMom said...

My son was diagnosed as severely autistic at the age of 3. He is now 13 and considered mild, in regular classes, an A/B student who is beautifully learning the violin. I have learned more from him then he will ever learn from me. Parents autism is about patience and learning on your own what works for your child, not just waiting for doctors, therapists and schools to do it for you. Two things I find essential are B vitamins, and Melatonin. There are others that can help like magnesium, L-Tyrosine and acidophilus. Just remember when starting any supplement to add one at a time for a month or more before adding another so you can gauge the response. Discipline is also important. I have always told my son "Autism is NOT an excuse for you to do less. It is the reason you MUST do more!" No bad behavior is accepted. Insistence on routine is also changed because the world changes and children must learn that they do not control change and adapt. Melt-downs are okay, let them work through them as long as they aren't harming themselves. I sometimes wonder if autistic children are angels sent from God to test humanity!

andrew said... Parents Blogging website for all. Vaccine damage link


Had you child stolen ?
Had your child suffer after childhood vaccinations ?
Is your child in care ?

Does your child have adhd autism aspergers allergy or a moderate learning difficulty ?
We have been created by the need to fight widespread social care injustice and abuse of draconian state power. Children are being ripped from their parents simply because they are considered “unconventional” or even single.
Just like pigs we rootle under the surface to find those golden nuggets of truth hidden beneath half truths, targets, idealised aims and a “not my decision” culture. In fact, we are the truffle P.I.G.S. of the social care world.

Our aim is to help and support parents who have lost their children through spurious reasons. Low income, untidy house, learning difficulties,Vaccine damage, bad diet, disorganised lifestyle or a perceived non cooperation with social services.
We don’t claim that these are fully acceptable but if the money wasted by the legal and social system was spent helping families with these difficulties there would be no need for their abusive and draconian behaviour.
The whole system cannot be seen to have made a mistake, so they cover up any dodgy decisions. Everyone has seen how government and bankers squirm out of responsibility for their actions. Even sympathetic solicitors have little chance against this state conspiracy.
The worst thing about the whole rotten business is that the children pay for the rest of their lives. And it doesn’t stop there. Their children end up suffering too. Three generations affected by inept decision making, it’s beyond criminal.
So please get in touch however hopeless and battered you feel. We can and will make a difference to you and your children