To me it means we still are listening to the flawed yet loud and powerful lobby who swears it is vaccines, regardless of how often this has been disputed, instead of looking at other potential causes with our time and money. It may be a catalyst for some children but it is not for the majority. It means we are no closer to understanding how our kids keep getting these disorders. It means that we are more vigilant and that spectrum now is more all encompassing (a host of developmental disorders are on it that used to be on their own). It means many parents are still worried, still wringing their hands, still looking for answers in an industry that is run by quacks who promise much when promise is all these parents have. It means so much and yet it means so little in terms of next steps.
I am vocal about my son's special needs...a part of me hates that term. He is special, both my boys are, for the smiles he has, for his sense of humor, for his kindness, his ability to make friends wherever he goes and his intelligence. He is needy because he is a child, a child who I watch like a hawk to make sure that the world doesn't hurt or diminish the special due to his quirks.
I remember when we first got him evaluated and the doctor told us that his flapping, the primary reason we saw a developmental doctor, would eventually morph to something else (it has). I remember crying on the floor of my kitchen and with my friends, not because he had some fine motor skill issues but because I pictured the children who may hurt him for these things. I remember standing by the milk in a supermarket flapping with him so he did not feel that people stared at him and the way he learned to control this in public. I close my eyes and my heart is back at the moment when my suspicions were confirmed... and how I had so wanted to be WRONG!!!!!! I cannot imagine how I would have gotten through without the generous open support of my friends who too had boys .. beautiful and unique boys who also had found themselves on this spectrum.
So here we are 6 years from his initial diagnosis, well non-diagnosis in some ways since he is a non-specified spectrum disorder sensory integration child. He no longer flaps, he has crap handwriting and uses his very smart brain to distract teachers and other kids when writing assignments come by. In 6 years he has learned not to flap in public, to hold in that need to get his hands which are weak the stimulus they need, only at home because he knows the world is hard to deal with when you are not the same as all the others. He excels in school and with friends and comes home and let's loose with things he holds in.
This month as we think about autism awareness we should think about the staggering numbers of children and even if the count did not go up it still reflects more children whose parents are sitting somewhere wondering how in this ever competitive world will their child fare. It means that there are still people who consider themselves "experts" who offer simple syrup with a promise of miracle cure and scientist scratching their head. There are those who now want to tell me that children only have these disorders in developed countries, with a dismissive nod of agreement to those who say that even children from Russia and the former Soviet bloc nations do not have these...how dare you ? How dare you judge any of the parents who look for help for their children? How dare you dismiss the possibility that those children may, with a little help, learn to shine with their special needs and not be defined by them? It is not ignorant it is downright cruel and false!!! I do not know if medicine helps all but it helps some, if changing diets helps 1 or a million but who cares if you are that one, as long as the therapies (holistic can be deadly at times just as much as prescriptions) do no harm.
My child is special ...just like yours is. My child has needs to become successful ...just like yours does. My child is on a spectrum and it does not define him.
I do what I can to make sure my son knows that his differences do not make him less but like a rare orchid just make him unique. I write stories for both of my kids, where they are the stars along with their friends. My son was thrilled when I wrote this poem for him... he smiled and said "I knew you understood"...I am grateful for everything he is. He and I talked about this blog and sharing the poem.., he said if it helps another kid's parents understand and help that kid well then he is ok with me sharing... now that is SPECIAL!!!
I CANNOT STOP MY FLAPPING SAID THE BOY ONE DAY
WHY NOT HIS PARENTS ASKED? JUST PUT THE TOY AWAY
I CANNOT STOP MY FLAPPING IT IS WHAT MAKES ME …ME
I WILL NOT STOP MY FLAPPING SAID BIG BOY WITH LAST NAME B
IT HELPS ME TRAVEL TO WORLDS BEYOND MY OWN
TO PLACES THAT HAVE BLUE SUNS AND CARS THAT ARE FLOWN
THERE ARE MONSTERS I MUST TACKLE THERE ARE BEASTS I MUST PUT DOWN
THAT IS WHY I WILL NOT STOP MY FLAPPING HE SAID WITH A SERIOUS FROWN
I WILL NOT STOP MY FLAPPING IT MAKES ME A HERO THAT CAN FLY
I CANNOT STOP MY FLAPPING ‘CAUSE I LIKE IT I WON’T LIE
THERE ARE STORIES THAT I WRITE WHILE I FLAP AND FLAP AND FLAP
THERE ARE ADVENTURES I AM ON WITH EVERY SOUND AND EVERY SNAP
THEY LET HIM FLAP THIS BOY WHO COULD NOT OR WOULD NOT STOP
THEY LET HIM FLAP AND FLAP AND FLOP
BECAUSE IT MAKES HIM DIFFERENT AND UNLIKE THE REST
IT ALSO MAKES HIM WHO HE IS A BOY WHO IS THE BEST