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, April 25, 2010

rethink, rehash, regroup = reset

I must have an automatic reset button, like my hairdryer. When the hairdryer shuts off, I mash the reset button on the plug adapter and voila! Hair blowing resumes. I think I'm like my hairdryer. I get too hot and I automatically shut off. Someone or something has to mash my reset.

Lots of helpful feedback to my last two posts. Really, you gals are amazing women, do ya'll know that? Well, you should. You should walk up to a mirror and look yourselves square in the eye and say out loud with confidence, "I'm an amazing woman!"

Ordinarily, I wouldn't be so forthcoming with what would typically be considered Hippa protected information, but I have a sneaking feeling that what I post here is helping lots of other families and if that means you need a quick looksee into our med plan for Sissy, then so be it. My new mantra lately has been "why struggle with these battles if I can't help others?"

Our Pdoc appointment is on Wednesday (I'd previously thought it was Thursday and my day planner corrected me. Thank you day planner) We will be having a serious chat about some things. And now, for your Hippa protected full disclosure:

Currently, Sissy is on resperidol, immipramine and lamictal.
1. she's still having ADHD symptoms plus sleep walking and sleep talking with lots of nighttime wakefulness. We need to up the immipramine or switch to a different anti-depressant.

2. Sissy is delusional, irrational, and violent. She is volatile and unsafe in her anger. We are all nervous for hers and our safety. Daily. We need to up the resperidol immediately and/or swap some of that for lithium.

3. We need to have a serious discussion about adding an emergency prescription of Ativan for those occasions when all other interventions are useless to deescalate her.

4. at tudusamom's suggestion, we need to add Vistaril, a prescription anti-histamine, to the med cocktail

The biggest issue for me is to remember the frog-in-the-boiling-pot issue. I am perpetually convincing myself that I can "manage" it, that things aren't "that bad", that it's fine, it's no big deal, we've got it. Except when we don't. And at some point, if I can't get a handle on calling a spade a spade and being brutally honest with the fact that Sissy is unsafe, unwell, and needs serious interventions, I will eventually come face to face with a crisis that will super-cede my abilities. A crisis that could be physically endangering.

It's hard to do! When you've lived this insanity for so long, it's very easy to dismiss those circumstances that would make neurotypical families jump back and cry "Uncle!" Not to mention the fact that when you're trying to raise a non neurotypical family, your domain and range for "normal" is radically skewed. Our perceptions are permanently altered. What? Shopping after 10 pm isn't "normal" for families? Huh? That's the only time I've ever been able to grocery shop because I can.not.take.my.children.to.the.store.ever. What? You say that's "unusual?" How is that unusual when it's what I've done for nine years? What? You stay that it's "alarming" when I tell you I have to set an alarm every night so I can sleep without fear? Huh? Putting an alarm in the house was a GODSEND! How can that be a bad thing?

I know some of you are reading this and nodding your head and saying yep. that's us. but how does she know? Because I'm living it too, sistahs, I'm sitting in this boiling pot of water with you, unaware that I'm about to become frog leg stew. And this skewed norm is what I have to communicate to the pdoc. I have to put to words the very real and shocking truth that I live with a level of anxiety every day because I can't predict Sissy. Which means my kids do too, as does my spouse. We are all stressed out. We are not coping. Sissy is over the top. The therapists are at a loss. We are constantly in fear for her and our safety. We are suffering PTSD. We are coming apart at the seams. We can't deal with the 24/7 therapeutic demands Sissy puts upon us because of her overwhelming needs. I don't even think it's the RADs so much as a "rad component" to her mental health needs, a component that exacerbates her other mental health issues. (Thank you again to tudusamom for that phrasing - takes some pressure off when I observe that the typical RAD therapy is insufficient by itself to address Sissy's needs)

I think I might just print out this blog post and read it verbatim to the pdoc.

Last night we made a spur of the moment decision to play soundscapes music all night for Sissy while she slept. Before RTC, she listened to classical music every night since we got custody. But now that she's in the living room and her space is limited, she has no music player. I remembered though that we could put on a music channel from our cable TV, turn off the TV but leave the DVR box on, piping music through the stereo. Excellent. it was soothing and Sissy reported sleeping through the night. If you don't have access to music channels on your TV, you can get one of those white noise machines that play various canned soundscapes.

Then, after supper this evening I had the cognitive moment to say to Sissy, "do you know what a headache is?" Because it occurred to me that some of the reasons she might go straight from feeling fine to blind rage might be sensory-driven issues, like pain. So I explained to her the different types of headaches she might get, what they feel like and how she would know if it was a headache. I told her it simply required some tylenol and that she'd know it was working because she'd feel better right away. I gave her Aspie Boy's example. See, when Aspie Boy has a headache, he tells me it feels like his brain is coming out of his skull or he asks me if his blood is coming out of his forehead. When I give him tylenol, he always says, "wow mom. what is IN that stuff?! It works so good! Anyway, it might have been a wasted five minute talk because she was getting anxious[1] and losing focus, but I figured it was worth discussing. If she was an NT 10 year old, she'd be able to tell me things like "mom. my head is hurting so bad"

And yes, Aspie Boy uses very strong language when he describes things and ordinarily, that would set Sissy off except when it's Aspie Boy, it doesn't. They have a shared brain. OK, not really, but some days it's like they have one mind between them. I need to use time with him or his anxieties and fears about Sissy's issues as a living example for Sissy of how her behaviors are impacting her family. If she understood how Aspie Boy was feeling about it, she would be very likely to listen up. (can't claim that little nugget either. Still tudusamom's wisdom! Ya'll need to friend her, btw. she's awesomeness incarnate)

Thank you all, again and again. Without this support network, I would surely have crumpled into a heap by now. xxoo to all of you and here's some happy hippo power to help you muddle through your week's pending dooms!

-[1]do any of your RADishes get overly anxious about any body-related thing that is seemingly benign? Sissy gets really keyed up about body issues. to the point of wretching, crying and getting very physically wiggly and fidgety.


GB's Mom said...

I think your idea of printing out this post and reading it to the shrink is a good one. I hope the shrink can redo the meds so you get better results and I hope you are on the right path to getting Sissy the help she needs. {{{Hugs}}}

Anonymous said...

Have you ever read a blog writer called Whispering Writer? She has a son with Asperger's. Though his seems totally different from Aspie Boy but I think, since you two are both writers, you'd get a long some. *shrugs* dunno. just a thought.

waldenbunch said...

Don't you sometimes believe you are in prison? That you can't escape, not breathe, want out? In the worst of our years with B, especially before RTC I thought I would die from that prison. If I hadn't had my birth kids to affirm me and encourage us with their strength I don't know how we would have made it. Even though today M and S are so much better I still feel like it rises up to slap me in the face. It's no longer just RAD behavior, it's normal kid stuff at times, though immaturity for their ages. My physical health went downhill 6 years ago when B left, the after effects of constant stress, anger, isolation, triangulation. I've never recovered from insomnia, possible fibromyalgia, migraines, etc. This life has repercussions for all of us. I asked M today if we would have to protect him from his older brother J and he said no because J's not a RAD kid. I told him he had no idea how we had all suffered and sacrificed and been heartbroken these last 10 years. No one in our family got a free ride. So protect yourself, you're doing beyond what any normal person could do. We have all been given a divine assignment from God. There will be rewards one day.

Ashley said...

I think it's great that you're starting to teach Sissy how to recognize pain.... Have you tried something like a pain scale with different smiley faces?


Maybe it could be good for all of your kiddos- Just a thought.

Cyndi said...

As for scrapes, bug bites, and all the rest of the body aches and pains lets just say you have not seen nothing yet, until you daughter hits puberty. I know, I know you do not even want to think about it but it is insane!!

J. said...

May there be peace today, may you find some clam while they are at school and have a few minutes to recharge.

Tudu said...

The Ativan and the Vistaril would basically do the same thing. Compare the side effects and go with the best one first. We found that getting them to take them when they were already upset was too difficult. There is another med that can be placed on the tongue and instantly works. Of course, our insurance wouldn't cover it.

Jules said...

Tuda, you are probably thinking of the buccal version of clonazepam (also known by the brand name Klonopin). I'm confused as to why your insurance would not cover it as it's available as a generic now in addition to the brand name Klonopin "wafers". While we're on the topic, I'd also like to mention that Abilify, Clozapine, Lamictal, Remeron, Risperdal, and Zyprexa are available in the same form, although I'm not sure which are available in the US aside from the clonazepam.