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

Sunday, March 7, 2010

day 2

I think she's officially asleep. This living room/bedroom arrangement is challenging. It means that once Sissy is asleep, the living room is closed. no TV, no mom/dad time, lights out, the house is dark. Pbft. We are toying with the idea of making it more permanent by building a false wall so our living room will still be usable past 8 pm. Right now I'm sitting at the kitchen table which is murderous because my back hasn't recovered. I need my recliner. and the only other room in the house I can go to is the bedroom. 1200 sq ft is all we've got to work with. I might be putting a tent in the backyard ... or an old camper? nice.

Another very long day. Church first and I had Sissy stay with me in Sunday School. I may not be able to have a say about where she goes for school but I sure as heck can say that she doesn't need to be in a sunday school classroom with a volunteer teacher that isn't trained to deal with psychiatric kids, particularly one that hasn't been home for a 24 hours yet.

After sunday school, we met up with HER. ugh. This is a nice woman. She means no harm but she's fast. Needs ritalin, fast. And she's the intern school counselor at the kids' school so she thinks she knows my kids and their needs inside out. She starts spouting off all this stuff, blah, blah, blah and I was just sweetly nodding my head because I didn't want to be rude but darn, she drives me batty. and holy crap, she doesn't know anything. She might be learning how to be a school counselor but she isn't parenting kids with special needs. and she's certainly not parenting mine and furthermore ... I better stop. *holds tongue* She really is a nice woman and she really is trying very hard to be helpful and supportive so i just need to leave it at that.

The IFI team came again, met us at the door 10 minutes after church. They did some role playing therapy to navigate tomorrow's potential trouble spots with peers asking Sissy where she's been. I'm so nervous about her being in the main stream classroom. She is exceedingly off "norm" for average fourth graders. Whatever. Rules are rules. I keep telling myself, if THEY make the rules for Sissy despite what I say and she sinks, it's not my fault. I can't buck the machine. It's bigger than me. And all they'll say is "you're not the first momma with a child like this." (see also annoying school counselors that think they know my kids and what their needs are inside out) i may not be the first momma to walk down this block, but I AM walking down this block so that has to count for something. It doesn't of course, but it should. Now if I got a PhD in this stuff ... nah, they'd still hold their hands up and say, "mommas don't know jack"

[aside: my therapist and I talked about this conundrum this week. why do professionals, even those that are still training, think that mommas don't know their babies' needs? We went back and forth and settled on the notion that 30 - 40 years ago, so little was understood about mental health issues that clinicians were the only ones that knew ANYTHING. Not only that, they were learning a wealth of information rather quickly and being called upon to educate everyone else. It seems the stigma that clinicians are the only ones in the know hasn't been erased with the same fervor as parents have been interested in therapeutically parenting to keep their children out of institutions. well, it's a supposition at best, but it does give me something to chew on when I get my panties in a bunch about it. and my panties are bunching up.]

After the IFI team left, we went to the school playground. I needed to walk, I knew the kids needed exercise [1] and I had to clear my head. Too much, too fast. ugh, ugh ugh. Momma needed to employ a coping skill. I chose walking. Sissy faked a twisted ankle and tried to boss Wonder Girl around. Wonder Girl wasn't having any of it and opted to put on my sunglasses as her "deflector shield protection" from Sissy's "alien deflector shield" that disintegrated anything that came near. I didn't miss the very clear analogy - wonder girl using an item of mine to protect her from Sissy's imagined game of destruction? yeah. can't miss that one.

Then we came home to the chore I'd been procrastinating. The stuff. OMG, the stuff. When I picked Sissy up yesterday, the staff had literally thrown all of her things into two enormous trash bags. Trash, dirty laundry, broken toys, school papers, all of it shoved into bags that were unceremoniously heaped into my van. I cringed. Her space is limited. VERY limited. It took us 4 hours to weed through it all. Sissy's mind is so scattered. Redirecting, rephrasing, cutting off the lies and the fake illnesses at every turn, fending off the manipulations which came in rapid fire succession, it was exhausting. I'm not so sure she's on enough of one of her meds because her brain just got faster and faster and more and more scattered. We stopped in the middle for food (thank you church food pantry for fixing our supper this evening!) Sissy has a very limited number of items for two reasons: 1)limited space and 2)limited brain ability to keep track of stuff.

The Dad and Aspie Boy have been violently ill too boot so it's been a difficult day. It's all been on me because The Dad is incapacitated and has to rest because I absolutely I can't do the ladder work that is required for tomorrow's job. Otherwise, I'd just let the two of them fend for themselves in their misery and I would work. At this point, being on a job washing windows would be a welcome respite.

As far as behaviors go for today, Sissy's not been impossible. Although there were about 10 times when she had to show me up in conversation and we had to redirect her. Right now, it's not that she can't be managed, it's that she demands so much, there is no energy left to manage anyone or anything else. She's exhausting. She's 24/7. Nonstop, demand, demand, demand. She gives nothing back. She drains the very life from me. And then she lies and manipulates and has fake illnesses and talks nonstop and if I'm not paying attention SHOUTS her nonstop chatter and she has to one up me over and over and over and over. It's not been 48 hours and I already want to cry. At this point, I'd welcome her screaming fits because then I'd have a reason to call the IFI team.

At one point I said to her, "I have other family members that need me." This when Aspie Boy was puking his little brains out and she was asking for ice cream, about 15x, loudly. To be fair, I said she could have some after she finished her supper but that was 10 minutes before Aspie Boy got ill and seriously? She couldn't think to herself, my brother is ill, my mom is taking care of him, i can go without icecream? The school keeps telling me how friggin' smart she is but she can't figure out THAT? For crying out loud, Wonder Girl was shouting back at her, "SISSY! Aspie Boy is SICK! GEEZ!" Which resulted in Sissy pouting because Wonder Girl corrected her!

I'm not cut out for this. It's not chinese water torture. It's a battering ram against my head without ceasing. I can know all the friggin' therapeutic parenting tools in the world but none of them help me address this swirling toilet bowl of doom energy draining effect! I'm not kidding, I would take 10 more spectral kids over this. Aspie boy is a cake walk compared to Sissy. One on one, if there is no one else that needs me, she's moderately manageable. But throw the whole lot of 'em together and it falls apart. And guess who takes the biggest hit? Wonder Girl. Every time. Gosh darn it, it makes me so mad! And I'm friggin' exhausted and my back is killing me and i can't even sit in my friggin' recliner to get some relief because Sissy is friggin' sleeping in the living room because she's friggin' not safe and she doesn't return ANY emotional energy in the parent/child relationship and HOW ARE THE POWERS-THAT-BE MISSING THAT THIS DOES.NOT.WORK?!?!

30-40 years ago when those clinicians were learning all of this wonderful stuff about mental health, their patients and their patients' families were living in the institutions together getting 24/7 help. I want the best of both worlds. I want to be given the credit for knowing what the clinicians know so my family doesn't have to be in an institution but I also want the 24/7 help from the clinicians that know what they're doing but aren't stressed because it's not their child and they get paid to work 12 hour shifts.

maybe I just want to get paid to work a 12 hour shift.

[1] Sissy's resperidol causes weight gain. She's added 2 pounds since she was gone but only grew 1/4 inch so those 2 pounds are obvious. She can't wear many of her clothes. At the RTC, since it was set up like a camp, there was a lot of walking from one building to the next, probably 1.5 miles worth every day. So Sissy gained 2 pounds with an estimated 10 miles of physical exercise weekly. Yikes. That means exercise must be an immediate part of her therapy plan at home or she'll blow up. Switching the meds is out of the question. Without the anti-psychotic, she can't function. Forget RTC. She'd be in a state facility for life.

5 comments:

GB's Mom said...

Jennie,

I am so sorry you are going this alone! People do mean well (usually), they just don't understand. MK is an energy black hole right now, so I know a little of how you feel. But I understand the difference- MK IS going. You have no end in sight. You are in my prayers and thoughts. Sending {{hug}} your way.

Laurie

J. said...

yep, the mama not knowing anything drives me a little bit crazy as well. We do know things, a lot of things and we are not just Mama's in many cases. I wish others could hear that.

hannas_kiwi said...

My understanding is that the part of the brain that allows for the prioritization of others' needs (such as Aspie Boy's illness) over one's own (desire for ice cream) functions differently in Sissy's case. That is the same part of the brain that responds to and returns empathy (emotional energy). For her, Aspie Boy's illness is no more a legitimate competetor for her desires than a comercial on television or bird song. She can't experience or act upon empathy any more than a quadrapalegic can hug.

You are dealing with a system (and self-view) that rejects the posibility of Sissy being unrecoverable. That is influencing everyone's assessment of the situation. The focus on what it takes to succeed in her recovery, without seriously considering no-recovery options, leads to excessive investment of personal resources and an avoidance of factors that would imply greater difficulty or failure.

Everyone is prone to this when children are concerned, especially parents and social service providers - we're all supposed to protect and provide for the kids, right?

Linda B said...

wow-what an exhausting day! And that's just one day-I understand the sucking life out of you part. My 17 yr old always wants more. I can never give her enough. Then she tells her staff at day treatment that I am so busy with the other kids that I can't find the time to take her shoe shopping. She doesn't need shoes for crying out loud! So then she complains that I won't let her wear mine. Leave my stuff alone! It's like she is under my skin and I can't get a break. (sorry, think I needed a mini-vent)I hope back to school isn't too difficult. It would be nice if you could get a break. We had to put up a wall in our downstairs so DQ could have her own room-just didn't finish it off so there wouldn't be a fire hazard. I'm not giving her enough for that too because I won't hurry to paint her walls. Ain't gonna happen because of the graffiti and crap she wrote all over them in the past. Bug hugs to ya-

Debbie said...

Jennie, please know that I am praying for you! And I'm so glad that the IFI gal is on your side!

I am seeing many of Sissy's behaviors in my daughter, though my daughter doesn't make them her way of life...unless she's in a pattern of descent.

Please keep sharing, and I'll keep praying!!