Wednesday, July 28, 2010
The Curse of the Autism Mummy
We’re home and Nicky is wrapped up, hooked up and ready for another 24 hour EEG.
With all the hospital visits I almost forgot about the benefits of the home/mobile EEG’s. For starters, Nicky is not confined to a bed, I’m not confined to observe him so we are freed up to go about our usual routine, but better. Better because when Nicky’s head is wrapped up like a mummy, and he is bandaged in gauze life is easier.
Sadly, people don’t understand Autism, but they understand bandages! Bandages signal hurt and pain, something humans are familiar with. It’s incredible, with his head wrapped - like he just had brain surgery, or was hit by a car – he attracts compassion, kindness and concern. People want to know what happened. They ask "Is he gonna be okay?". Instantly people, who typically pretend not to see us, acknowledge us. Under the Curse of he Mummy we are no longer invisible! Magically, his tantrums, repeated phrases, loud talking, jumping, grunting and crying that typically fetch glares, judgments, criticism and unsolicited parenting advice, disappear. Poof!!!
When non-mummy Nicky goes out I am seen as the bad parent who needs to toughen up and get her kid under control. With mummy Nicky it’s the opposite. I have to be careful not to be to firm, as people think I’m abusing the ill child. LOL.
Oh yeah...It’s much easier to go out with mummy Nicky. Maybe I should wrap his head when we go to Disneyland it'll be easier on everyone.