Email transmission at 3:00 pm Friday: Sissy's discharge date is Friday, 3-5-10.
This is not a discharge from RTC that she has completed her therapy successfully. This is a discharge from insurance that says she no longer meets their criteria for in patient care (but they still haven't told me what that criteria is).
In phone conference on Thursday afternoon, the therapist admitted:
1. Sissy is not better
2. Sissy will reescalate
3. Sissy is still a threat to her siblings
4. We have not had enough time to recover from Sissy's trauma
5. Sissy is not safe in a home setting
6. Sissy will probably end up back at RTC
1. CBAY waiver
2. Pay privately for group home or continued stay at RTC
3. Foster care (which goes on our criminal record and ruins any future plans we might have dallied with for adopting again. but right now? I'll scream it from the top of Stone Mountain, "NEVER AGAIN!")
4. IFI program
we've opted for CBAY and IFI (but I'm cringing about IFI because I'm really anxious that we'll get some fresh-out-of-college rookie that is still gung-ho about saving the world one psychotic kid at a time)
Plans in the works:
1. emergency IEP for EBD placement if and only if RTC cooperates and releases her records in time so we can avoid her going back to mainstream classroom on 3-8-10. but I'm not hopeful. Keeping her at home until appropriate placement can be arranged = me getting a criminal charge of truancy
2. calling the deputy that patrols our area, again, to let him know she's coming home and to anticipate dispatches to our house
3. getting back on the calendar for weekly therapy with the RAD therapist and monthly appointments with the psychiatrist
4. getting insurance to extend the waiver for her anti-psychotic med (she's not diagnosed as ASD on paper which is the only way resperidone is approved by FDA for children her age)
5. determining if a dual diagnosis on paper gets her MORE services or makes it harder for her to get them. (of course, it gets her resperidone - see #4)
6. stocking up on alcohol? OK. maybe not. but right now, altering my state of mind sounds like a really good idea
Things we need that we're not getting:
1. respite care
2. a safety plan for Aspie Boy and Wonder Girl
3. prevention from family chaos and crisis (because three one-hour weekly visits from IFI is not sufficient to prevent chaos and crisis if in 12 hours last weekend Sissy could completely upend three months of recovery)
4. financial assistance
Things we're getting that we don't need:
1. chritian rhetoric and placating phrases like
- "god won't give you more than you can handle" or
- "God gave you these kids so he knew you could handle it" or
- "god can heal everything" or
- "we rebuke Sissy's illness in the name of Jesus" or
- "we bind all generational curses" or
- "this will all be behind you soon and Sissy will recover and be just fine" or
- "we're praying for Sissy's healing" or
- "god is in control so don't worry"
I know that people don't know what to say or how to respond and that they feel really inadequate to say or do anything that is helpful. I accept that. I know that for some people, God is their rock and hope and the first thing they run to and that I should probably do that too. I accept that as well. But it's like being slapped in the face with a cold cod fish when all of that rhetoric is spouted off, it feels dismissive of my pain. It doesn't acknowledge that Sissy's illness is progressive and that she is a sinking ship that robs us of joy, hope and a future.
If people could imagine their successful children and all of the joys they've had raising those children being turned upside-down, inside-out in a second and then being told that it's all broken, forever, it would begin to help them understand the pain we're enduring. Hearing about their child's school projects or their BFFs or they A+ they got on a math test or their academic trips they get to take as a select group of excelling students, or their missions trip plans for the summer to help inner-city kids, all of it is a sucker-punch to the gut.
My parenting experience has been a downward spiral of chaos, crisis, hopelessness and despair IN ADDITION TO knowing that I have one child that is not impaired, who is capable of doing all of those wonderful normal childhood things but who will continue to suffer because of Sissy, Sissy who will be sent home on Friday even though she's not better, Sissy, who has injured her sister in the past and without a 24/7 watchful eye (impossible!) will likely hurt her sister again.
If people, in their efforts to make me feel better with their feel-good christian rhetoric, could keep these thoughts in their back pocket before they said anything, it would prevent the cold cod fish slaps I keep getting.
And because I'm telling my readers, which includes non-virtual family and friends what I DON'T want and need, it requires that I tell you what I DO need. I can do this best with an analogy.
I'm in a hole I was forced to dig because of my child's needs, a hole that may or may not eventually lead to a brighter future and potential success for my child but because I love her, I have to try. I've been digging the hole by myself and with my spouse, 24/7 for 9 years. As I've dug the hole, I've been isolated from the things my peers have done: going out with their spouses, going to their children's events, enjoying the financial rewards of a career, going to sleep without worry, etc. As i've dug the hole, I've had only God to talk to for comfort and hope. God and I have a very intimate relationship because we've spent a lot of time in this hole together.
My hole is now too deep for me to get out of without help. I can see the top of the hole and some sunlight but that's it. I'm covered in dirt, mud and muck. Scraped knuckles and aching muscles from endless digging, I have no fresh water, a worn out shovel and only a rope/pulley system to haul up buckets full of earth debris at a time.
People stand at the top of my hole and look in on me and my progress. They inadvertently kick dirt and rocks back in as they stand there, shouting at me, "hey jennie, good job! nice hole you got there! you'll be finished soon!" then they walk away and I'm alone again. I can see nothing but walls of earth, rock, bugs and hours of toil.
Then, a ladder comes down the hole. A bright happy face and rested body shimmies down the ladder. This person is laden with canteens of water, protein bars, an mp3 player synced with my favorite tunes and a cache of fresh batteries to keep it working, head lamps, wash cloths to wipe myself clean, a belt loaded with useful gadgets, and two fresh shovels.
"wow!" says the unexpected helper. "you've gotten a lot done! Did you do this all by yourself?"
I nod my head like a bobble head on a dashboard.
"Phew, girl! that's impressive!" then my helper hugs my filthy, stinking body. "you're amazing!"
we pause for a minute and take a swig of water, surveying the progress. "So," says my helper. "mind if I help?"
I hand my helper a shovel and we keep digging but my helper takes my shovel from my hand and says, "go up for a little while," nodding toward the ladder. "take a breather. I've got this. Come back down when you're ready."
This is what I need.
This is what I seem completely unable to find.