The choices we have to make…..

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  • Post last modified:March 24, 2011

As special needs parent I have to (along with my wife) make some really tough decisions. Honestly, we have very “easy” decisions to make anymore.  Right now we have a problem and we are trying to figure out a way around it.

Emmett is scheduled for the sleep study tonight form 8pm-5am Friday morning. We then will have to leave the hospital, kill time for about 3 hours and then be in Cleveland for more Emmett related therapies. Akron is about 25 minutes form my house and Cleveland is about 1.5 hours from my house. We will be doing all of thins on ANOTHER night of no sleep. The other issue is I think the sleep study will be a waste of time. Not because I don’t want to spend the time there but because I don’t think there is a chance in HELL that Emmett will tolerate it. He will have a bunch or electrodes glued to his head. Emmett won’t wear clothes most of the time and screams if he gets sticky, dirty or wet. How is the world will he tolerate this? Think about your child would they? Emmett has rather EXTREME sensory issues and I think would be an all out assault on them. So I called the Akron and they are supposed to call back to discuss it.

We are at a crossroads with Gavin as well. The hallucinations are getting worse each night. He are increasing the anti-psychotics right now and see if that helps. It will likely just make the movements worse. We are getting backed into a corner right now. I really fear that we are going to have to return to Cleveland. A psych hold at Akron isn’t going to cut it. He needs “REAL” help like inpatient care. We need to figure out that the hell I going on with him once and for all. We owe it to him get to the bottom of this or at least make the hallucinations go away.
I don’t know how we are going to do this….

Rob Gorski

Full time, work from home single Dad to my 3 amazing boys. Oh...and creator fo this blog. :-)
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Justin

Rob, I am not sure how you handle such a stressful life while updating and supporting a custom rom, but I hope the rest of the XDA readers that have used your rom will help you through the toughest of times. Please accept my $50 donation for your hard work and contribution toward improving everyone else's lives through the creation of a great Epic 4G rom =P

Michele

let them do the sleep study, if nothing for the fact that they will get a good insight into AUTISM and sleep, there would be no know way my son would have tolerated this, FYI he now sleeps beautifully…things can change.