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

Monday, October 4, 2010

Charting the wango tango

on placement - waiting for the PRTF and have stalled out finding a suitable facility. All are 2-3 hours traveling distance and all require weekly family therapy visits. The Dad has requested I post the following question:

To those of you that have placed in the past or currently have children in RTC, what have you done about the required weekly therapy, especially since many of our RADlets don't gain anything from those sessions? In addition, what accommodations to these rules has your family been able to set up if your child is a distance from your home?

Still on the warpath to get Sissy an IEP. I'm really hoping we have this nailed down BEFORE placement. We know that the likely event will be that she will get approved for another short term placement and be sent home again while we try to find long term and without an IEP in place, that makes me very nervous. One of the plans at our last RTI meeting discussing Sissy's need for an IEP was that I would document her behaviors before and after school to see if there was a correlation between school day events and her rages at night. We had two key points of interest in this chart. One was to determine if Sissy's behaviors were better on the days she had small group with the school counselor. The objective was to prove that with appropriate supports in an academic environment, Sissy would do better overall, both at home and at school. The other point was to see if Sissy's behaviors on Sunday night and Monday morning demonstrated anxiety about the new school week.

Score! The charting demonstrates exactly that. Our hope as parent/educator team is to quantify the link between Sissy's wango tango and school. I can tell them all I want to that Sissy was excellent all summer, that it was the best time of her childhood to date, that we thought we were turning corners in her RADs, etc. but without proof, it can't be used in the documentation that will be submitted for an emergency IEP referral[1], especially since Sissy hits academic benchmarks regardless of her wango tango.

In addition, during a rare cognitive moment at group this past Thursday, Sissy admitted to the school counselor that she rages at home, is "very good at that, knows all about it and how to do it" but that she doesn't do it at school because "she would be embarrassed for everyone to see." And yes, Oh yes indeed, the school counselor documented the crap out of it. Finally! Sissy is admitting to the school professionals that she is one way at school and another at home. MONUMENTAL!

It's been very interesting to get an objective view of Sissy's behaviors and to observe a pattern, in particular because Sissy can not voice her anxieties for herself. She's still very sporadic, unpredictable and wobbly, curses to the wango tango! And if you're not already using it for your bipolar babies, I highly recommend moodchart dot org. It was the tool that garnered us a clear picture of Sissy's 15 day rage cycle.

To save post space and the eyes of readers that do not care to read through all the drivel that I charted, I will not put it all on here. However, if you email me directly, I will very gladly email the document so you can use it as a prototype for any charting you plan to do for your rager. Just click my profile page and on the left side bar, click the "email" link. In your subject heading, please put - "Sissy's chart" so I don't delete your email as spam.

Included in the chart was my definition of a "rage" I felt it was important to delineate what I perceived as a rage and how it affects Sissy and the rest of the family. Just sending off a chart to some PhD's desk with notations that said "rage" didn't give a clear picture. Here's how I define "rage" Sissy style:

We define a "rage" episode with Sissy as having one or more of the following attributes:
1. no clear reason for her anger/ no identifiable trigger
2. immediate onset, no chance to circumvent her anger with a time out, talking it through or using a coping skill
3. primal rage screaming
4. jumping, hitting self, punching, kicking, destruction of property, threatening others
5. flat out defiance - usually she screams in our face with a raised fist that she is "NEVER GOING TO DO IT!!!" (whatever we've asked her to do)
6. unwillingness to take a cool down or a coping skill
7. screaming that lasts for 5 minutes or longer
8. crisis team is called if she continues for longer than 30 minutes
9. usually after a rage we try to talk it through. 50% of the time Sissy cannot recall why she raged
10. 25% of the time after a rage, Sissy is physically exhausted and sleeps it off
11. 10% of the time after a rage, Sissy has a psychotic event - talking to voices, hearing or seeing things that aren't there, wetting or soiling herself, catatonic-like or overly silly behaviors, sexually acting out or odd seemingly cognitive moments in which she says off-putting things for the sake of unnerving the listener

When Sissy rages, there is very little we can do other than to wait it out. It disrupts not just her life, her social, emotional and academic time, but it disrupts the entire family socially, emotionally and academically. There is very little the rest of us can do without a respite provider to watch Sissy, because we can not predict her rages. This includes any innoccuous family activities like going to a park, riding bikes, playing in sporting events, going to the library, going to church, going to a movie, going to the grocery store or w.almart, going out to eat, etc. We are all prisoners to her emotional behavioral disability. It has cost us relationships with family and friends because they do not understand the severity of her needs and what we are required to do to keep her and others safe

It is my hope that despite the eventual plan for Sissy to return to placement, which we now really do feel certain is the best plan (there is a whole heck of a lot that happens IRL that isn't blogable), that if nothing else, our story, our plans and our strategies will net success for other families.

[1]"emergency" what a joke. It takes 3 weeks to get the documentation to prove it, then another meeting, then the referral sits on the PhD's desk in the board of ed office until she gets to it and either approves or vetoes it. THEN we call another meeting to determine IEP classification and what, how, who, where, when and why Sissy should be supported and if it can even be done at the school she currently attends. NO WHERE in those events do I register "emergency"


missjenngirl said...

To address The Dad's question. My hubby and Step daughter have done weekly sessions in regular counseling via skype.

missjenngirl said...

Talking about the moonchart, reminded me of something. Have you ever noticed a corrolation between barometric pressures and her behavior. When I was still teaching at the behavioral center. We could literally tell when a big storm was coming, be it snow, rain, etc... because the lower the barometric pressures got the worst the kids were. Many of them had no idea what the weather was going to be.
Or guess is that the pressure somehow effects the pressures in their brains as well.
I also noticed this when working in the ER too.
Full moons, low pressures brought out the "crazies".

Integrity Singer said...

@missjenngirl - I've never noticed Sissy being sensitive to barametric pressure but gosh almighty, is AB! That and moon cycles. AB is very sensitive to both.

Linda B said...

We did it weekly with video conference. We drove to another facility and used their set up. DQ was 2 hrs away and I have to tell you driving the 60 mins round trip for the video conf. took up a chunk of the day. Most times it did feel like a waste of time as it wasn't working (therapy)but we did it and could say we tried everything. We were thankful that we didn't have to drive the 4 hrs round trip when quite a few times DQ refused to cooperate or got violent.

GB's Mom said...

When my eldest was RTC, we did weekly session over the phone and once a month, on a Friday, we drove 4 hours to the RTC for in person therapy.

Bren said...

We did our weekly stuff through video too. I went to a local mental health clinic and they had cameras and we live counseled through the tv screen. This was 8 years ago so I am sure they have come a long way since then.
Still praying for you~

Corey said...

Given that our son is 3000 miles away, we do therapy by Skype. I know Villa Santa Maria (in NM) which specializes in RAD kids also does therapy by Skype.

radmama said...

Oh my, the 'rage' describes my 5 year old! I just did a phone interview with a new psychiatrist who said in the end that "it doesn't sound like he needs a higher level of care; I think that we could institute a modified behavioral program". I think I may have actually growled before I hung up.
Still looking.