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, November 13, 2010

Hello!!!

Sorry for the hiatus! I'm officially back to a general audience. I felt the need to read through my posts to weed out anything incriminating. So tedious. There's just too much going on with Sissy for me to avoid caution. Please note the new url for this blog if you bookmark. I've also been lurking on my follower's blogs clicking my blog link and discovering that it is a deadend. I think if you'll need to re-add me in your "blogs I follow" gadget with the new url: http://peaceinpuzzles.blogspot.com/ Or you can re-follow me. I changed the url because we realized that I told Sissy's therapists about the blog and gave them the link and we are terribly alarmed about tudusamom's nonsense.

Sissy self-inflicted wounds for the first time in her rage on Sunday. I took pictures as proof and texted her therapist immediately.

No therapies seem to be working, the therapist has documented that Sissy will manipulate sessions, parrot phrases she thinks others want her to hear but will not use her therapy tools in real life situations. In addition, she takes out her frustrations, anger, anxieties and mania on her family.

Wednesday night she was sent to shower. half way to the bathroom she announced she was having trouble with constipation again. I explained she needed to let me see her 'bloody poo" and she got angry. She always "forgets" to show me her stools so I can see for myself what is REALLY going on and give an accurate report to her physician.

I explained that since I couldn't see her BM, I had to assume the worst and she'd be going back on Mi.ralax and Apple Juice immediately. She got angry, ran to the bathroom, locked herself in and got in the shower to rage. I couldn't get in and knowing she'd self-inflicted on Sunday, I was very alarmed for her safety.

I called the crisis number for her therapist and ... ugh. that is crap. That's as useful as sitting on my ass for 10 hours in ER to get sent home with a child that reports she is afraid she will hurt someone.


Now the therapists are saying that her scores on the PRTF aren't sufficient for RTC placement, that it all goes before the review board, that we have to have a meeting "sometime in the next few weeks" to discuss alternatives to RTC, blah, blah, blah.

The recent escalating behaviors are insufficient. She has to demonstrate LONG TERM (30+days) threatening behaviors.

In addition, the pdoc says the state budget for mental health is about to crash. If kids are not actively demonstrating homicidal and suicidal tendencies, they are getting kicked out of RTCs. One of the local entities to provide support for youth and adolescents has closed due to budget constraints, dumping hundreds of families on their butts without alternatives.

Took Sissy off the Klonopin we started last Friday - pdoc thought it would help with the mood swings, rages and sleep issues. Nope. We think she's had a paradoxical affect. Monitoring her for the weekend. She was rapid cycling yesterday: manic to crashing in 3 hours cold. Today she's pretty even keel. She's 36 hours since her last dose. Tonight I'm going to give her an aromatherapy bath using peace&calming essential oils in the hopes that it will soothe her and avoid a bedtime rage.

Have contacted 18 programs with your help. Keep sending any links you find. I haven't had a duplicate yet! I called McLean hospital in Boston. They have a children's psychiatric hospital that is affiliated with harvard. They aren't doing any bipolar research BUT, he referred me to Massachusetts General. Mass Gen is doing a bipolar research program for youths that have two bipolar parents. Score. That is Sissy. It would be great if I heard from them.

I've also heard from a longterm factility in VT that has a youth program in HOUSING, not hospital or dormitory. Score. That would be MUCH better for transition back to home. Essentially, it is run like a group home/therapeutic foster home but it is actually an RTC with on site staff 24/7. (thanks Fosterabba - that's the battleboro link you sent me)

as for distance, travel, etc. I really don't care. As my IRL friend told me last night when she dropped by, the system here is failing our daughter. Another RTC guy I spoke to told me straight up, state programs are NOT going to help Sissy. Private pay or grant funded programs are the only ones that make any lasting change. He also said Sissy needs long term (duh) but based on the story I told him, she is too severe for their program. Story of my life.

At this point I'm thinking, forget addressing the RAD. Where does the RAD end and the bipolar/psychoses begin? Which illness treatment will have the most success in helping her? I don't think it's going to be straight RAD therapy. I think if we pursue a course for bipolar treatment we may uncover that she's more attached than we give her credit for. I've been investing my research solely on bipolar and have discovered that the early onset kids mimic RAD, instead of the other way around. Or perhaps the severe bipolar in children makes it impossible to attach? Not sure.

Bottom line, we're at a cross roads again in Sissy's care and our family's survival. My immediate plan is to get her to a placement that will adequately address her enormous needs because it's not me. Plan B is to keep the rest of us safe and flying under the radar of the watchful eyes of agencies that could tear our lives apart and in lieu of tudu's recent fiasco, to keep this blog safe.

In the meantime, patron saint of mental illness, Dymphna, is hanging around my neck where I think it will stay for a long time. My IRL friend brought for me when she stopped by. I'm not catholic and don't know a whole lot behind the liturgy and ritualism of these medals and patron saints, however, I know that it is great emotional comfort.

I leave you with words from Erma Bombeck:
Mothers of Disabled Children, by Erma Bombeck. Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how these mothers of handicapped children are chosen? Somehow I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation. As he observes, He instructs His angels to make notes in a giant ledger. Armstrong, Beth: son; patron saint, Matthew. Forest, Marjorie: daughter; patron saint, Cecilia. Rudledge, Carrie: twins; patron saint.. . give her Gerard. He's used to profanity. Finally, He passes a name to an angel and smiles. Give her a blind child. The angel is curious. Why this one, God? She's so happy. Exactly, says God. Could I give a child with a handicap to a mother who does not know laughter? That would be cruel. But has she patience? asks the angel. I don't want to her to have too much patience, or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. But, Lord, I don't think she even believes in you. God smiles. No matter. I can fix that. This one is perfect. She has just enough selfishness. The angel gasps. Selfishness? Is that a virtue? God nods. If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a spoken word; She will never consider a step ordinary. When her child says 'Momma' for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations. I will permit her to see clearly the things I see-ignorance, cruelty, prejudice-and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing my work as surely as she is here by my side. And what about her patron saint? asks the angel, pen poised in midair. God smiles. A mirror will suffice. 

6 comments:

Kristin said...

I'm so sorry, sweetie. In a couple places, you've used Sissy's RN. Might want to Ctrl + F to replace those out.

*hugs* you tight. If you were close, I'd help if at all possible. Even if it was just a meal you didn't have to cook.

Integrity Singer said...

@ kristin - thanks! edited

Patricia said...

I was under the impression that McLeans has a great juvenile bipolar unit - I'm surprised you were told otherwise - Cambridge Hospital also has a good Children's unit, but it's not specific to bipolar and it's acute - not long term.

Ranger said...

I'm so happy to see you back online, and glad that you've made the adjustments to feel more secure with the blog. I first saw the Erma Bombeck quote years ago and enjoyed reading it again. Have you ever run across the 'wecome to beirut' essay?

Tara - SanitySrchr said...

I've just begun reading here. Just in reading one posting, we have a lot in common. I look forward to reading and learning more through your posts.

Angela said...

I am sorry you having so much trouble with your states mental health services. I know that doesn't help you much, but I truly am sorry.