Tuesday, February 28, 2012

35 hours


Number of times my daughter walked out of class/activity yesterday:  2
Number of calls from school yesterday:  5

There's a back story to all of that, one that includes missing doses of a major medication and zero sleep Sunday night (neither a wink nor a nod).   It also includes her putting off a major assignment -- one she really wanted to do because it was fun -- until the weekend, particularly until late Sunday night.  So yesterday on my way out the door to pick her up early from Drama Club (or rather, from the office, where she was currently having a meltdown) [Call No. 4], who gets off the bus and walks up but her brother, who is supposed to be at an after-school activity.  "Oh, yeah.  I forgot," he mumbled.

I dropped him off, continued down to her school, and found her totally blotchy and in high dudgeon because the principal and academic dean had the nerve to haul her to the office for walking out of Drama Club without telling anyone where she was going, a behavior [Call No. 1] that apparently appeared last Thursday and about which they were all "very concerned."  After seven runaway attempts and her disappearance from Sunday's cookie booth, I had no trouble seeing the concern.

After cursing out the school administration in the "privacy" of the exterior of the building and the interior of my car, my daughter asked, "So when are they kicking me out of Drama?"  I'd have liked to kick the drama out of her, but Call No. 5 addressed her question:  the next time she walks out of Drama without asking/telling anyone.

Call No. 2 told me that she had ditched the last two periods of the day for the refuge of the nurse's office where she may have rested, but given how "hyper" the nurse said she was, I doubt she slept.

And while I was on the line with the doctor's office trying to get a refill on the med we ran out of over the weekend (ran out of because she has had two dose increases of it in two weeks and because the on-line refill the doctor submitted seven days prior didn't go through), the counselor called me back [Call No. 3] to ask if she could share the meds issue with the teachers.  (Yes, share whatever you think is necessary!)

Though she did no homework, my daughter stayed up until 9:15 last night, alternating between ugliness and sweetness in the blink of an eye and rounding out her time without sleep to 35 hours.


Saturday, February 25, 2012

The latest

The latest:  Cutting.

The latest:  Crying at school and Tae Kwon Do.

The latest:  Almost no school work done at home or in class.

The latest:  Avoidance of school by refusing to get up.

The latest:  Outright rudeness and disrespect to our in-home person.

The latest:  "Obsession" with current interest.

Monday, February 20, 2012

Between therapists

My daughter started individual therapy in December, and we began family therapy with the same person a month ago.   Therapy was one of the recommendations coming out of her stay in the hospital in September, and it was something that our fabulous Children's Hospital doctor wanted to do weekly but understood that we couldn't afford the round-trip 6 hours/192 miles/10 gallons of gas to meet with her.  She recommended that we find someone "local" who could do the weekly therapy, preferably dialectical behavior therapy, but at a minimum, cognitive behavioral therapy.

I put it out to my local support group.  I got names from our in-home rehabist.  I talked with my friends.  And I factored in just how tired we all were of having to travel for services.  Even within county, most service providers are located in the county seat, which isn't that far but takes 20 - 30 minutes to get to depending on the time of day (usually rush hour).  I found that there's a practice just a few tenths of a mile from our house, and I heard about it from three different sources. I called, explained our needs, and was assigned a therapist from the group.

You know how sometimes you just know that something is right?  And sometimes you just know that something is wrong?  What do you do when it's nothing?  Nothing bad, in particular, just nothing.  I didn't feel the "click" with the therapist.  I figured building a rapport takes time, so that's what we gave it...  More time...  More time...

∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞

I spoke with my daughter's therapist today and told her that we're not a good match.  We don't seem to align.  The therapist said that she'd help us find another therapist in her office, but she called me back to say that everyone has a waiting list and offered me contact information for two other practices.  She wished us the best.

Now we're without therapy and are once again on the hunt.  Truly, I'd rather need a dentist and an ob/gyn than to have to find a therapist to match my daughter and my family.  I know we're odd.  I know we're atypical.  I know we're alphabet soup.  Where's the therapist who's up for the challenge?


Saturday, February 18, 2012

More, less

We've had our ups and downs this week: a few things that feel like breakthroughs (including signs of remorse and logic) and a few that are just the same old problems (variations and degrees of impulsivity and defiance).  

Meds are changing again, more vitamins are being added, dietary restrictions are in place, IEP testing has started... I still don't know where we'll end up or how we'll get there.

But tonight I heard my daughter singing, and I smiled.

Tuesday, February 14, 2012

Journeys

The journey of a thousand miles
begins with one step.

Last night, I asked for prayers.  My daughter was out in the cold and the dark, alone, and I felt lost and helpless.  Asking for prayers is not something I do easily, nor is it something I tend to do publicly, but as soon as I realized she wasn't home, I asked for them on Facebook and here.  I was overwhelmed with the immediate response, both of prayers and of her safe return.  

I once posted One step, about the rings I had bought for my daughter and me, hers saying, "Love" and mine saying "The journey of a thousand miles begins with one step."  Shortly after I found mine in October (in the bottom of the car snack bag, of all places), I lost it again.  I figured that it would turn up again somewhere since I hadn't left the house between seeing it on my hand and losing it.  I wasn't particularly worried.

Today, as I was again picking up dog toys in the back yard -- Milo and Daisy carry them out daily, Milo to his favorite chewing spot and Daisy, well, just because -- I looked down and saw my ring in the grass.  Finding it again, reading the inscription, makes me think that maybe I've taken another step on my journey with God.

Monday, February 13, 2012

Prayers

Please, please, please, pray for my family.  Now.  We are in a dangerous crisis right now.  Thank you.

Friday, February 10, 2012

We seem to have every ball that could possibly be in play for my daughter up in the air at once.
  • I've put out requests about the process for hospitalization, whether a one-week crisis calm-down or a two-month diagnostic clinic.  The latter includes involving a county agency and switching her to receive Medical Assistance. A residential treatment center could follow that.
  • I attended today's IEP meeting and signed off on just about every test under the sun.
  • This morning we added a third vitamin to her new vitamin therapy.
  • As of tonight, we're starting a meds change, increasing one, coming off another, and, as soon as the script is called in, starting a new one.
  • She's now in family as well as individual therapy.  All of us have to make changes.  Consequences have to be thought up and consistently implemented.
  •  We are continuing with our in-home help from the rehabist.
  • We're "cleaning her out" from some major gluten-, casein-, corn-, and soy-scarfing at Space Camp last week, and we'll be on the GF/CF/SF/CF diet for quite a while longer.
 And we're praying, always praying.

Wednesday, February 8, 2012

It's a whole lot easier if you just get up

Well, that was awkward.

My daughter refused to get out of bed again, missed her bus, missed two rides, and opted to sleep on.  Since this is unacceptable as well as illegal, I called the school and asked them what to do about it.  They sent the principal to pick her up.  She is not happy.  However, she is up, dressed, and on her way to school, and she is without her cell phone for the day.  I'm thinking she's also grounded.

I wonder how much she'll blame me for this.  I wonder if she'll even get on the bus to come home.

Tuesday, February 7, 2012

Fluff 'n stuff

So apparently, because my mother had Borderline Personality Disorder, my "Love Tank" is close to empty and I have set up a codependent relationship with my daughter, which I now have to break.

Knee-jerk emotional response:  BITE ME.

Rational response:  Sure, makes sense.

Likely response:  Yeah, I'll get right on that, while I take her to doctor appointments, cram her full of vitamins, start the IEP process, dodge her next meltdown, keep her from running away, investigate diagnostic hospitals, and mix up a batch of GF/CF/SF/CF marshmallow fluff.

Wednesday, February 1, 2012

Broken record

What I said to the Board of Education at tonight's public input on the budget meeting:
This is my sixth year attending the Board of Education’s Budget Input Meeting.  In the past, I have talked about budgeting for students with special needs as well as budgeting for the needs of highly abled students.  I have most recently talked about budgeting for twice-exceptional students, to meet their academic needs for rigor/acceleration and their need for extra services, including special education services.

During each year’s budget cycle, I have tried to be respectful of and informed about the budget process.  I have tried to be sensitive to the financial needs of all students, and I have tried to show you that it is not just about my two children but is about numbers of children in our school system who pattern similarly.  At the same time, I’ve tried to be cognizant of the fact that there really is only so much money.

However, just because there is little money doesn’t mean that my children and children like them stop needing.  Their needs are great:
  • They need the misunderstandings about and prejudices against them to be abolished.
  • They need school system staff and administration to be trained in appropriately educating them.
  • They need appropriate programming, not making do with what is available.
I respect all the steps forward that I have seen in the past several years.  I respect that despite being stretched so thin, you have tried not to sacrifice quality.  I respect the analogy that though the pie is smaller, no pieces have been removed.  But at what point are my children’s slices of that pie so small that they are crumbs with little power to sustain?  It is not enough to say that no programs are to be cut; my children and children like them need the formation of different, appropriate programs.

You have an unenviable job.  To do it, I wish you could walk a mile in my shoes.  I wish you could see the impact your decisions have on my children and children like them.  Please budget for twice-exceptional students.  Help them to reach their potential.  It’s not just important; it’s vital.

Thank you.
Maybe something will come of it.  I really don't want to be "publicly inputting" the same comment for the next six years.