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

Wednesday, March 2, 2011

So what DO we know?

Crap has gone down this week! If I stop for a second and try to assess everything that has happened my mind goes blank. The last eight weeks I've lost time: days, weeks. I have trouble keeping track of who, what, where and when. It's all just been one big blur of rage hell and it has exhausted me. I don't like being this tired. It feels pointless. Exhaustion due to mental and emotional stress is not cool.

So I'm going to try to recap the last 8 days.
1. Last Tuesday we were told that PDD-NOS Dx meant Sissy was being dropped from her therapy team. It also meant that she could not reauthorize for CBAY waiver. The reason being that neither agency is licensed nor certified to work with spectral children beyond doing skill building activities. After much panicking, phone calling, emailing and texting, both agreed to stick with us until they had successfully handed our case off to the next capable agencies.

The conundrum is that there are no other agencies in our region that we could work with.

2. I panicked and sobbed and then decided to just wait and see. My therapist reminded me that although it sucks that EVERY.SINGLE.DAY I never know what is going to happen and that I have absolutely no control over any of it, that typically things change on a dime and sometimes for the better.

3. Friday through Sunday, Sissy raged crazy crap. OMG she was blitzed.

4. CBAY team called and confirmed I will meet with our state's parent support network coordinator to begin training to be the liaison for our region.

5. Yesterday morning pdoc was sympathetic and apologetic but said his clinical opinion is to agree with the other documentation: Sissy is PDD-NOS in addition to everything else *roll eyes*. This kid is going to have every freaking Dx in the DSM before we're through.

He said he had a few other ideas to research that would get her some support and assistance when she got to her CBAY anniversary date.

6. Yesterday afternoon Sissy's therapist texted that her PRTF was approved. We texted back and forth and I put in a plug for our first pick RTC which is more of a hospital setting. CBAY team agreed.

7. This morning Sissy raged crazy psycho crap and the therapist got confirmation that a bed would be held at the RTC we requested until next week when I return from Orlando.

8. This afternoon, Sissy raged crazy psycho crap and after a nine month wait, we finally got to take AB to Sissy's pdoc. HOORAY! He is on the board to start a local private school for autistic children K- age 18, projected opening date is fall 2012. The first ever for our region! WOOT! In addition, he has a bunch of other ideas to address AB's mental and physical health issues beginning with addressing AB's rapidly advancing early onset puberty, his GI and IBS issues and his developmental Dx. I left with no med changes (for now) but a blessing to dose Vistaril as needed, a lab order to check a bunch of hormones and blood levels adn a promise that he would call AB's developmental specialist to staff his case. There are some evasive tests on the horizon for AB but for the better. I was reminded to be alert for seizure activity with the introduction of puberty as all three of AB's Dx have a proclivity for seizure activity.

Right now I think I'm more elated about the help for AB than I am about Sissy's placement or going to Orlando. AB's needs have long been subverted by Sissy's nonsense that it has made me angry. Of all the things we've been through and endured with Sissy's challenges, the inadvertent neglect of AB's challenges is what has made me mad as hell. Every time I've sat through a meeting to discuss Sissy's case I ended EVERY SINGLE ONE reminding the agencies that I still had AB's needs to contend with, that his health concerns were being ignored because hers were so polarizing that they became paramount.

The timing can't be ignored. Hot on the heels of Sissy being out of the house, AB will finally get the medical attention he has long needed.

THIS is what has made me the happiest. Finally, my son will have his day.

On a side note, WG got a white board for her bedroom for Christmas and every night I write a "secret message" on it when I tuck her in. Tonight's message said Very soon life for our family will be MUCH better. WG said, "yeah, but mom. Sissy will NEVER get better. She's always going to be this way, forever."

"You're right."

"So... how can it get better?"

"She may never change but that doesn't mean she'll be home the whole time."

A slow smile crept across her face. "So she's leaving?"

"When I know, you'll know. But it will be soon. OK?"


So what DO we know?
1. March 6, 2010 was her discharge from RTC last year.
2. She'll be gone next week directly after I return from Orlando. Just a few days past her anniversary discharge date.
3. She'll stay at RTC according to her medical need (ideally).
4. The dollars game will have a huge impact on her length of stay and according to her therapist it may not be much longer than three weeks.
5. CBAY may or may not reauthorize for another year after Sissy discharges from RTC pending her Dx and psych eval at discharge. If PDD-NOS is still on her chart, the gig is up.[1]

[1]there are still a few cards left in the deck for us to play. She'll qualify for skill building therapy with her current therapy agency, 1.5 hours/week in home. We can also opt to work with LIPT, an interagency that works with all professional levels of mental health support. Apparently using LIPT, it gets us past the "gate keepers" for NAMI and MHDADD. There is still the option of declaring her ungovernable, seeking long term placement or group home. Without an agency working for us, pursuing the legal loophole for abandonment is not likely.


Robin said...

Great News, for AB! :) wooo hooo!!

kisekileia said...

That is great news for AB. Also, I don't know what you've tried for him meds-wise, but I have found that a tricyclic antidepressant, clomipramine, is the most effective treatment for my IBS.

It's nuts that there is NO agency in your area that works with autism spectrum kids.

Lindsay Mama to Nine said...

Your post made me cry. I am a lurker. I KNOW the pain of the polarizing child that takes everything and leaves crumbs for the other kiddo's...your an amazing Mama.
Have a great time in Orlando...I so sooo wanted to go.

Congrats on the school for your son! That. is. FABULOUS!!!

FosterAbba said...

It sounds like you have some good news. Hang in there, my friend!

Johanna said...

Your comments about how angry you get realizing that AB's needs weren't getting addressed because of Sissy - I know exactly what you mean! On his own I can handle my son's behaviors, but when they start affecting my daughter, that is when I get so mad. I'm glad AB is getting some help and I will keep praying that you can get some real help with Sissy.

kisekileia said...

So does your region have NO agencies that work with kids on the autism spectrum beyond 1.5 hours of skillbuilding per week?!

Miz Kizzle said...

I'm sorry things are so rough with Miss Sissy but I had to laugh at your use of the term "spectral children."
I know you were referring to children "on the spectrum," as they say but "spectral children" put me in mind of ghost kids.