Sunday, November 14, 2010

Ridin' the Roller Coaster as a Family

Well.  I hardly know what to say anymore.  We had a horrendous day yesterday - just absolutely gritting my teeth to get through the day, hoping we didn't have to make another trip to the hospital, and we didn't.  But, my daughter was so agitated all day.  I spent the day putting out virtual fires.  Getting her brother to be quieter, managing the scents in our home, from the chicken I foolishly cooked, to the smoke from a neighbor's cigarette coming in through the window I had opened to vent the chicken smell . . . I didn't sit down until my girl was too tired to keep going, but too tired to sleep, and she was afraid of her invisible people, so I sat on her bed for about three hours until we gave up and climbed into my bed so we both could sleep.

My son was largely left to fend for himself, something he's not especially happy about.  So - I shuffled back and forth, keeping them as separate as I could to keep the peace.  When he gets fed up - and believe me, having a sister pick on absolutely everything you do, from breathing too loud to making too much sound pressing the buttons on the hand held game, all of the criticism and controlling behavior does wear on a guy - he makes whatever sound he can to bug her.  Setting off a firestorm.  He's not wrong.  And it's not her fault.  No one is right, no one is wrong, it's just impossible for me to effectively manage both of their needs by myself.

But I'm it.  So - we got through the day, and tried to get some sleep.  And then, somehow, and I have no idea how, today is better.  But I started out laying down the law first thing this morning.  We would all get some exercise.  We would all get out of the house, together, for an hour or two.  And we did.  It wasn't easy by any stretch of the imagination.  She was reluctant, and was adamant that there were places she couldn't go, couldn't stand.  He wanted no part of it.  But we found a compromise, at least she and I did, and I made little brother come along, completely against his will.  And then I made him have fun downtown. 

We walked, took photos of public art and random pigeons and ate baklava from the local maket.  We stumbled on an antiques street fair, looked at antiques from the 1960's and 1970's, hello old friends, and then we got takeout mexican food and drove home.  All in one piece, not much bickering.

What will our afternoon be like?  Or tomorrow?  I have not the foggiest idea.  But it won't be boring.

Tuesday, November 9, 2010

What I Learned Today

I have a very welcome feeling today, one I haven't had for too many months.  We're going to be OK.  Lily is going to be OK.

We're not out of the woods yet.  But, we're seeing our path a bit more clearly.  After a good visit with a developmental pediatrician, I came away feeling a little more empowered.  This lovely young and knowledgeable woman had us complete the first child behavioral check list I've seen.  In all these months, no one else has requested this.  While she had a conversation with us, her capable assistant scored the list and produced a report.  This didn't tell me anything new, but it felt like something, as opposed to a very few vague questions and ponderous silences we usually get from the psychiatrist.

The pediatrician suggested, in a subtle way, that we consider seeking out new mental health professionals to treat Lily.  This is an idea I've been struggling with for some time now, but didn't trust myself to go ahead with because I don't fully understand all the pieces of the medical side of what we're dealing with.  So - let me just say, the first thing I learned (or really, relearned) is:  Trust your maternal instinct.  I'll say it again because it feels so good:  Trust your maternal instinct!!  Whew, feeling better now thanks.

So - why does changing mental health practitioners make sense?  Because I haven't been able to get my questions answered, or even really adequately addressed.  Lily's psychiatrist looks and listens, but says little, even when asked a direct question.  Lily is making progress, but the major changes have been made by psychiatrists on staff at the hospital. 

Our LCSW, Lily's therapist, is a lovely person, but she's been resistant to my requests for implementation of cognitive behavioral therapy for Lily.  She is a support person, but even Lily doesn't feel like her therapist is helping her much, she just likes going to play board games with her.

The second thing I learned today is that a child's therapist, doctor, or psychiatrist has an obligation to treat the whole family.  What I mean is, a child cannot be treated without consideration of her environment.  Professionals must be amenable to answering questions from the parents.  A child's illness affects the entire family, she is not isolated.  This isn't a new idea for me, but it really crystallized when I dealt with a doctor who respected Lily but also was adept at communicating with me.

Finally, my third lesson was a reminder that offbeat or even slightly inappropriate humor can be healing.  With a long car ride, Lily and I had a wonderful opportunity to talk, and to laugh.  We had a couple of silly conversations, starting with her gentle adolescent critique of my singing.  The song was Animal by Neon Trees, one of Lily's favorites.   It went something like this:

me:  "Oh oh, I want to know, oh oh what are we waiting for . . . "
Lily:  "Mom - it's 'Oh oh I want some more . . . ' there are lyric websites you know!"

Result - we laughed and laughed.  It can be great to be the mom and be wrong when your daughter gets to be normal and just a little condescending.  I loved it, this is the normal we've been missing for such a long time now.

Second scenario:  Lily has a compulsion, just a bit of OCD, but she can feel really angry and agitated when triggered.  Her compulsion is to tap her head nine times with a pen when she hears words with "ck".  She gets angry when someone says a word with "ck".  Do you have any idea how many words we say every day with "ck" in them?  Duck, quack, track, rack, jack, lack, package, packet, pocket . . . you get the idea. 

I finally suggested a compensation that she might use with or without the head tapping.  I thought she might feel better if she thinks a silly thought when this happens, sort of like picturing the audience nude if you're nervous about public speaking, right?  But she's thirteen, so it has to be interesting, and maybe just outrageous enough, for her to enjoy using it.  So I told her, "why don't you just think in your head, now don't say this out loud, sh*t booger head!"  Lily cracked up.  Even if she never uses it, the real laughter was priceless.

Friday, November 5, 2010

Forging Ahead

I haven't posted in awhile.  Lily is home, and we're skating on thin ice.  I don't want this blog to be a pity party, and in my heart, my suffering is second to Lily's, but I have to give voice to this state of being, a parent of a child with mental illness.  I'm doing everything in my power to help Lily live a healthy life, trying to find some measure of peace and joy in her days.  There are three people in my household, and the remaining two also need some measure of peace and joy.  We're lambs on the altar of Lily's illness, and it has to change somehow.

The last couple of days have found us battling colds, or maybe the flu, as we navigate Lily's emotional storms.  She gets so distraught, worrying about her bunny getting ulcers from his too-long fingernails (thank you internet!), or about the multitude of side affects she's certain she's experiencing from her new meds.  And because she's in a depressed state, she can't be reasoned with, I have no credibility with my kid.  She wants "to talk to a doctor!!!"  So, to keep the peace, at 9:30 pm on a Thursday night I dial the psychiatrist's number and leave a message about Lily's possible side affects.  Or do I?  I'm at a new low, lying to my daughter in order to deal with her unreasonable state of mind, anything to avoid another trip to the hospital.

A trip to emergency means, among other things, no sleep, Lily getting hysterical when she's hungry and no vegetarian food can be found, and having to get someone to stay with my son, most likely all night and possibly the next day.  It's horrible, really.  Last time (3 weeks ago?) Lily screamed so loud and so long that her heart rate raced to 195, setting off equally loud and upsetting alarms.  I couldn't get her to calm down, all I could do was sit there and cry.  I don't like to cry in front of people.  I'm strong, in control, capable . . . except that I'm not.  Not when it comes to handling Lily's psychotic episodes.  When the ambulance came to transport her to the psychiatric facility, an hour away, it was a blessed relief, for me and for the nurses who were witness to Lily's rage.

It has been suggested that Lily is not just a child with bipolar disorder, that she has schizoaffective disorder.  Which makes so much sense, after these long three months of medicating for bipolar and still having her be in an unmanageable state.  The treatment is generally with the same meds, but acknowledging that she may have schizoaffective disorder helps me to understand the continued level of distress.

Lily did not get into the Stanford study I was hoping for, but the psychiatrist did phone me and discuss Lily's illness, and it was he who suggested a possible diagnosis of schizoaffective disorder.  I'm working on getting her in to see him for a consulation which will serve as a second opinion.

Last night was awful, but tonight has been - knock wood - better, calmer.    For today, I'll go ahead and post this mish mash, gibberish.  In the days to come, I'll try to get back to some kind of routine in regard to household, personal health and blogging pursuits.