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.
Donna dear:
ReplyDeleteThat was a brilliant post. I am so sorry about the hospital stay. I always feel very small and totally out of control when family enters the institution of hospital. I hope at least you came out with more answers than questions.
I miss you all. Maybe one of these years (yes, it's been three at this point) we'll get back to LA for a visit. How is Evyn? I wish she and Kevin could get back in touch. Kevin doesn't suffer fools gladly and refused to go to our top high school because of all the homework and competition, even though he had only one real friend here who did leave their 6th-12th grade school to go to the best school. He moved to England yesterday. When he introduced Kevin as his best friend the other day at his farewell party (a picnic in Central Park, I helped Kevin carry over ice and soda on my way to a run there), I wanted to cry, because I knew how profound a loss this would be for him. His summer program, an internship at Cooper Union (he'd love to get in there for college), has been disappointing in terms of making friends -- smart but arrogant, private school snobs, etc. -- is ending on Thursday. I don't know what he will do for the next month.
What is Evyn doing this summer? Looking at colleges big time now, I presume.
Kiss and hug to my amazing friend,
Robin
Hey Donna,
ReplyDeletehope this email finds you well.
Wanted to follow up on this with you. The diet appears to be most succesful with certain kinds of seizures and as you read in this it is pretty severe. Not only is food measured but even sunscreen and toothpaste. I don't know if you remember but Dr. Chez actually discussed this diet and thought that for some kids the GF diet was successful because it eliminated carbs and was "neuroprotective" . (But most GF diets are still high in carbs anyway). This kind of thought has lead to looking at variations of the diet that might be helpful.
There has also been some research using a modified Atkins diet, basically eliminating as much carbohydrate as possible. If you go to UCLA or CHLA they both have dietitians to work with for the diet. The diet is only used through centers NOT through "on their own neurologists" as they usually don't have dietitians to do this.
thank god knowledge of autism amongst doctors, teachers and general publis is improving
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