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22 December 2009

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emma

Well handled, the memory was difficult for both you and Charlie, really, well done!

Regina

My dear, not a little thing and not "making big deal" at all. Good, excellent - wonderful for you both.

Warm regards.

Jill

I'm sorry you won't be with your parents in Calif. this Christmas.
It must have been awful for you and Jim and Charlie when Charlie had his first episode near Seneca Road. You've written before about fears you and Jim shared shortly after your son's diagnosis that he would be taken away from you by some nebulous "authorities." I'm sure that's a common dread for parents of kids like Charlie but there's no need to worry. No one can override your authority as Charlie's parents and legal guardians unless he were to commit a serious crime or be judged to pose a threat to himself and/or others.
You and Jim are wonderful, attentive parents. Fortunately the days of whisking disabled children away from their families and tossing them into some Dickensian "home" are long past.
In reading about Charlie's "neurological storms" I wonder if he's been tested for epilepsy? The fact that the disturbances happen at the same location make me wonderful if there is some power source nearby that disrupts his brain function. There have been studies indicating that the presence of electrical power lines combined with large underground deposits of granite can play havoc with brain function, causing seizures, migraine headaches or anxiety attacks in sensitive people.
It's just a thought but I think you're wise to keep Charlie away from The Spot, at least for awhile.

karen d

Stopped traffic in a familiar spot caused Pete's most sad/scary neurological storm ever. Oh, it's so hard sometimes, these situations where we have no control.

I'm sorry you had to cancel your trip to CA. My younger son gets really motion sick on airplanes and I give him dramamine right before the flight -- he sleeps through the whole thing (for a short flight, anyway). Have you considered this to get Charlie through a flight? I'm not advocating randomly medicating kids on a regular basis! but it could be an option...

Unrelated but I dreamed last night that I met you and Charlie! I think I read about the cancelled trip right before bed. It was a good dream. :-)

Kristina Chew

@Jill, Charlie's been tested for epilepsy but his EEGs don't suggest any seizure activity. But when he's in the grip of something, it feels like it's more than just a "behavior."

Thank you regarding those "nebulous 'authorities.'" The ABA consultant for the school district and Charlie's former teacher repeatedly mentioned Bancroft as a "temporary residential placement" for Charlie last year and they were really serious about it. Still feel shaken about the whole experience.

@karen d, you met us! hope it wasn't an unpleasant meeting---I was thinking about something like dramamine, certainly melatonin, for Charlie. But wasn't sure how it might work on him (he sometimes has unusual reactions to medicines) and suspected that 30,000 feet up would not be the time to find out!

Club 166

Difficulties strengthen the mind, as labour the body.

Seneca

Looks like the difficulty in the past has strengthened Charlie's mind, as the swimming and biking have strengthened his body.

Joe

Jill

Don't worry. They can "recommend" Bancroft or whatever other residential placement is the flavor of the day. You and Jim are the parents and you have the final say.
As an attorney I've been GAL for several children whose parents were frequently missing somewhere on the streets. Even in those cases, the parents' wishes were taken into account, up to a point. Stable, involved parents like you don't need to worry about your children being taken away. Really.
But realize those moments when the authorities get involved in your private life are beyond scary.

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