This blog is my place to vent and share resources with other parents of children of trauma. I try to be open and honest about my feelings in order to help others know they are not alone. Therapeutic parenting of adopted teenagers with RAD and other severe mental illnesses and issues (plus "neurotypical" teens) , is not easy, and there are time when I say what I feel... at the moment. We're all human!

Saturday, July 13, 2013

Attachment Challenge Day 10 plus Circadian Rhythm Sleep Disorder

Kitty had an appointment with her psychiatrist and we got the news that we really have to change Kitty's sleep patterns and right now.  Both Kitty and I have Circadian Rhythm Sleep Disorder.

Circadian Rhythm Sleep Disorder - a family of sleep disorders affecting, among other things, the timing of sleep. People with circadian rhythm sleep disorders are unable to sleep and wake at the times required for normal work, school, and social needs. They are generally able to get enough sleep if allowed to sleep and wake at the times dictated by their body clocks.
Kitty and I both have the sub-type
Delayed sleep phase disorder (DSPD), aka delayed sleep phase syndrome (DSPS), characterized by a much later than normal timing of sleep onset and offset and a period of peak alertness in the middle of the night. Like babies who get night and day mixed up!

When Kitty did a sleep study in April, we realized that sleep medicines don't work, and were told that the only treatment left was Sleep Phase Chronotherapy (SPC), which progressively advances the sleep time by 1–2 hours per day.  The idea is that it's almost impossible to make yourself get sleepy and go to sleep early, but it is possible to stay up a little later every night until you move your bedtime all the way around the clock to the right time.

The doctor told us that few people attempt this treatment, because it's so disruptive to real life (how many people can miss 3-6 weeks of work?) and of the few of his patients that do attempt it, a substantial portion fail.  Even worse, if something happens to disrupt the process then Kitty's sleep schedule could end up even more horribly distorted.  At the time, we decided that all of Kitty's compliance issues would make this treatment impossible.

So now I'm stuck with doing it anyway, and we're going to have to do it together, because Kitty can't do it on her own.  I'm nervous about doing it because I'm sure she's going to be dumping all her anger, frustration, grumpiness and sleepiness on me.

Attachment Challenge Day #10 -
10am Pdoc tells us we need to do the SPC.  Kitty agrees.
1pm Kitty has senior pictures the next evening, so we did a natural facial scrub that I'd found on the internet (raw honey, cinnamon and nutmeg - smells great!) - we had a little eye contact (although she limited it) as I put the concoction on her face and shoulders and then took it off.
3pm I show her the time schedule I wrote, and she begins to insist that she HAS to work a new Monday night shift, quickly escalating to a meltdown.
Kitty  had finally told her job that she wanted more hours (my suggestion since we felt she was finally comfortable and ready for more hours) and they responded by adding a Monday night 5pm to 11pm shift (she's been working 5pm to 9pm shifts on Friday and Saturday nights, which is disruptive to family life and defeats one of my biggest reasons for her getting a job, which was to keep her busy during the day, but we are dealing with it).
I told Kitty I understand that she wants to try working until 11pm and that she was uncomfortable talking to people over the phone, but that she needed to explain to the scheduler that her doctor said she couldn't work this week and she couldn't have shifts that ended after 9pm, because it's disruptive to everyone else's schedule, messes up her food and meds, and now that she's supposed to be in bed by 11pm (after this sleep shift).  I also explained that by missing this ONE day of work, and telling them not to schedule her for next week, then we can do the SPC at a fairly leisurely pace without disrupting a lot of our planned activities, and she can still work her regularly scheduled shifts on Friday and Saturday (and the following week, she can pick up more shifts again).  Kitty INSISTED that she didn't care and wanted to take the Monday shift, even knowing it meant she couldn't work all next week and it made life very inconvenient for everyone, including herself.  She then threw down the "if Bob wanted to do this you would let her."
I started to argue with her, but finally just left the room before my frustration overwhelmed me and I said something I'd regret.  Hubby was working from home, and had heard most of the conversation.  He called Kitty in and reprimanded her for dragging out the tired, old "you love the biokids more than me."  We talked (for the millionth time) about how she has different needs from her sister and YES we're going to treat her differently.
I allowed Kitty to make the choice, and I'm trying to get rid of the resentment that she chose to work on Monday night and push up the timeline of the SPC for us both.

4 comments:

Anonymous said...

Circadian Rhythm disorders are a research interest of mine. I am not surprised that your daughter has this problem. As you probably know, this is likely in part due to her being blind. Almost everyone's internal, natural circadian rhythms are slightly over 24 hours. These rhythms are kept in check by bright light every morning coming in through a person's eyes. This turns off a person's melatonin production (the sleep signal). She is likely not receiving this signal. A more effective treatment would be for her to take .3 mg of melatonin every day at 6PM. This very small dose would signal her body that nighttime was coming. This would keep her regular and in phase with the world. Also, the protocol you are currently using is not only difficult but hasn't been used with blind people.
Good luck.
Colleen

marythemom said...

Ummm... Kitty is not blind.

We've tried melatonin and it had little to no effect. Her sleep issues are possibly more related to her PTSD, which might be why meds don't work, so don't know if this chronotherapy will help.

Mary

Anonymous said...

light therapy may also be an option... if you haven't tried it already.

Anonymous said...

Did u have to wear an actiwatch and when you took it off did it show up on ur results?