On a good day, parenting will test the integrity of your character. On a bad day, parenting will test your will to live. Parenting children with trauma histories will cause you to test the integrity of everything and everyone you thought you knew, for the rest of your life.
~J. Skrobisz

Saturday, February 27, 2010

discharge

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

Our options:
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
5. hope

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.

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.

This is what I need.
This is what I seem completely unable to find.

11 comments:

GB's Mom said...

I am sorry you are so alone with this. I am too far away (NY) to offer physical help, but I wanted to tell you I have been there with a kid like Sissy. Unlike Georgia, NY offered a social worker, who was on-call for crisis and respite, at least until MK's 18th B-day. There was never any hint that MK spiraling out of control was my fault or that I should be able to handle her myself. I am sorry Georgia as such an antiquated view of adoption. Do you know another special needs family close enough that you could swap respite with them? Sending (((Hugs)) your way. If you need to vent, feel free to vent at me. I am sorry I can't be more useful.

Laurie

Linda B said...

Jennie, You've worded this perfectly. I'm sorry that you are having to experience this too. DQ was discharged from RTC because of insurance too. She didn't make substancial enough improvement to warrant further treatment. In other words, she wasn't fixed on their timeline. RTC said she wasn't ready too. I hate seeing how it affects the siblings too. It's so not fair to them. I'm sick of doing it all alone and it hasn't helped. You're analogy was spot on. How about this statement: I don't know how you do it. Ever get that one? I'm not doing it people! I do what I can but obviously it's not working! Ugh, Ugh, Ugh! This system is such a failure for the kids and for the family.

Jane said...

If we were to get a call telling us that Toots was being discharged to home in a few days, we would be having the same feelings. All I can offer is a prayer for safety for all of you.

FosterAbba said...

You are definitely in an impossible situation. If you refuse to let Sissy come home, you end up with a CWS case against you and a criminal record. If you let her come home, and she hurts her sister, you'll end up with a CWS case against you for "failure to protect."

Damned if you do, damned if you don't.

And of course you can't just build a big cage in the back yard, and keep Sissy in there, either.

I'm sorry. There should be proper supports in place for families who adopt troubled children, but they simply aren't there.

Jeri said...

Can you go to CPS (maybe it's called DFPS there) to go into co-conservancy? That's what we had to do so that the state pays for his care. It's only supposed to last up to 18 months but all concerned know we'll end up getting a waiver because there is no way he'll be healed or ready or able to be in our home without being a threat. It was our last resort but we had to do it to keep the rest of us, especially our daughter, safe. Praying for you. Email me at beemommy58@gmail.com

onceachild said...

Hi Jennie,
I wish there were a way I could go and help you--I mean that! I can't imagine the stress, the fatigue, the worry and concern not only for Sissy but for the other children. And I surely didn't realize you could be brought up on criminal charges if you refuse to bring her home! It's NOT because you don't WANT her it's because you want what's BEST for her and clearly, right now, being at home isn't it! I'm not saying you are thinking of doing this because I have no idea but IF a person were to disrupt an adoption when all else was exhausted and they'd tried for years with no improvement, would a person also face criminal charges then even if they did it so that the state would HAVE TO step in an get the child some help? I'm just curious as to how that all works. And what if I may ask is IFI? Just curious! Keep venting Jennie... and let us know if we can do anything. Lori

Jennie said...

Jeri - don't know anything about co-conservancy. Maybe that's an option for us but I don't think so. I only know that if we refuse to take her home and can't afford the bill privately, we'll be asked to release her to foster care which goes on our criminal record. and if she comes home and hurts one of the other children, we'll get a criminal record for failure to protect.

onceachild - IFI = intensive family intervention. A "trained" professional comes to our home for one hour three times a week to make sure Sissy is getting the services available to us in our region and to help deescalate crisis. They can call the cops for us, they can put her in temporary treatment for 1-3 days if she's suicidal, they can contact social services if she harms her siblings. but we as parents have to demonstrate that we're following all of the guidelines and suggestions too.

if we disrupt, a criminal record is created on us in addition to possibly being forced to pay child support to the state.

the only way Sissy and we get help? Sissy commits repeated criminal acts and lands her butt at YDC.

waldenbunch said...

I know the place you're in is very dark and impossible. I've been there. Just know that you are loved by many even when it seems you are all alone. I don't have any answers to why and how and what to do. When we put B in a RTC we never knew she wouldn't be coming home. I'm grateful she's grown even though we have no contact because of her behavior towards us and her siblings. But I will say that it made our family stronger, especially our bio kids. They have to deal with so much at a young age. But they are stronger and awesome kids. Things will get better. Maybe just a bit at a time, but without hope we are lost. Praying for you.

QueenB said...

God IS in control, this WILL pass, and His grace is sufficient. That being said, life is unbearably hard, it has always been hard, and we know from the Bible that man from the beginning of time has endured horrific circumstances, some incredibly painful, many resulting in excruciating death, and seemingly beyond what anybody can endure and still keep going. And yet, as believers, we know that this world is not our home, yet live in it we must until we remove to eternal life. Jesus said to "occupy until I return", but the work I have before me is not what I expected and is often impossible at every turn. Obviously for you, also not what you expected or deem as even possible to bear. None of what I am saying offers any consolation, or peace, or practical advice. Life is just hard, everybody has their own story some seemingly easier, others even worse, and it is getting harder. But, you will not contend with this forever, hard as that may be to live with through this extreme trial of fruitless nonsense of bureaucracy, and dizzying mental illness. But, I am praying for you. Don't give up hope, hold on a little longer.

Debbie said...

Oh, Jennie! Does no one offer to come help out just in the day-to-day? I wish I could do that! Also, have you looked into respite care for Sissy, where she would live with an experienced family to give you a break, as long as it takes to be ready to welcome her back home? I know someone who can help you find a family should you wish to go that route. We are also looking into the role of the gut (digestive system) in behavior for our 14-year-old daughter. We had such a horrible day yesterday, and we know that her brain is affected. What we're looking into is called GAPS (Gut and Phychology Syndrome), where you use food to help the gut heal. Here are some links: http://www.gaps.me/ and http://gapsguide.com/. We haven't started her on it yet...and I hate to think we may have to wait until summer vacation, but God knows best, and He'll give us wisdom. I pray for you often and want to help so much!

sweethoneydoo said...

i say call the cops on her everytime she becomes violent or talk to Wonder Girl and make a deal w her that if Sissy does hurt her, that you will call the cops so that Wonder Girl can report Sissy.