Saturday, October 15, 2011

No title

We have had quite possibly the worst couple of weeks ever.  That includes my son's 2nd-grade year, which we don't talk about.  That also includes our home life when my son was in STEM6, not allowed to have a disability (like that restriction made his Asperger's go away), with homework taking 4-6 hours a night and someone having to be with him every minute of those hours (not because he didn't want to do the work but because by then, he'd had enough and just couldn't do it anymore).  That was the year of his first Science Fair, too.

I've been having flashbacks.  Really.  Flashbacks.  I had no idea that a person could have flashbacks to one's child's childhood.  So much of what's going on now has similarities to what went on then, but the biggest one is the stress.  I have never, ever, felt this much stress in my life.  Not even last month when my daughter was in the hospital.  That was awful.  This is worse.

She went into the hospital for a week, but when she came home, I feel as if we were left high and dry, without the tools we needed to effect a change.  The discharge summary gave me little to go on, just a bit of "why we saw your child" (I know why; I brought her there.) and a computer-generated monograph of generic diagnoses' descriptions.  We were supposed to have in-home help within 5-10 days of returning home.  Twenty-six days later (yesterday), we had our intake meeting.  We instituted a behavior modification plan that was working until yet again, she found a way around it and got a response out of us, reinforcing her negative behaviors and ramping them up to the point of no return.  Our fabulous doctor at Children's is still 90.6 miles away.  I called the meds doctor, but he needs to talk with our fabulous doctor before getting back to us.  I tried to get a parent-teacher conference last week but can't get one until this week.  (Had the school budget not been cut, resulting in furlough days, I would have had an automatic conference on Columbus Day.)  I put in a request to a special education supervisor to see if these issues can be addressed; she's out of the office until this week.

We're living moment to moment.  How can we get through the next half hour, the next few minutes, without it all falling apart, without losing our daughter?

We need help.  We need it now.  We need solutions, not more getting through.

What are we going to do?  We hold on, stressed beyond belief, but holding on.  And we ask for your prayers.


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