Wednesday, January 26, 2011

Back to School!!!

Lily went back to school today!  She's been wanting to return, which is a great sign, but I really didn't know if she could handle it.  She's in the middle of IEP testing, and it feels like we're miles from the stability I want to see.  But part of what may help her is getting back to some sense of normalcy.  If I communicate confidence in her ability to handle school, or social situations, she's more likely to share that confidence.

So she's enrolled in only three classes - but that's a huge victory!  And she had a good day, she liked being in class and didn't need to be rescued - to leave early.  I was able to work a couple of hours, and I'm feeling good about tomorrow.

I don't imagine we'll progress without any hiccups, but I know I need to expect success so we have a shot at it.

Friday, January 21, 2011

Mutiny On The Good Ship Chaos

Every once in a while, we get a learning opportunity that won't allow us to pass it by.  When I was a younger mom, it was more about teachable moments.  But the tables have turned.

I've been so afraid of doing something that would cause an episode, another hospitalization, that our household has been set on it's ear.  We monitor the music we play, the television we watch, the words we speak and the sounds we create in all of our activities.  Lily becomes angry and agitated by typing sounds, words with "ck", certain rhythyms . . .  She also doesn't tolerate the aroma of meat.  We stay in almost all the time because Lily gets anxious and afraid outdoors or in the company of other people.

So, we're housebound and walking on eggshells.

It takes a toll, and I struggle with that daily.  How is this impacting my 12 year old son?  I know it's making me feel anxious and frustrated.

Some of the more common causes of conflict are Lily's intolerance of her brother's actions, words, sounds.  He tries hard to avoid aggravating her, and sometimes gets frustrated and does the brother thing.  He makes a snide comment, or a typical 12 year old boy sound, often something mimicking a bodily function or two.  We have competing needs, hers for control over her environment, his for some sense normalcy.

I've known for some time that we can't live this way for very long.  I've been hoping that Lily's meds and therapy would allow us to ease back into a more normal existence.  But the meds and therapy aren't doing it yet.

So things escalate.  Lily began some time ago to throw things when she's angry.  Usually she accomplished this without any significant breakage.  I can hardly believe I looked at it this way, but I have.  Then she began to kick or hit.  This has been rare, it's a line I've always held firm, and yet it's happening on the odd occasion.  I always administer a consequence, usually a time out in her bedroom and a letter of apology.  Her notes of apology are sincere, and I take heart in that, but like with throwing things, the bits of violence are escalating.

Two days ago, Lily hit her brother twice, not hard enough to cause injury, but enough to hurt.  Then yesterday, she threw a water bottle and broke the glass on a framed cross stitch piece I stitched before she was born.  I sent her to her room, where she screamed and yelled and banged things against the wall in her room while I cleaned up the glass.

What I see now, more clearly, is that this has to stop now.  We can't live this way, not one more day.  Whatever issues my daughter has, and I truly want her to experience peace and happiness, she has to find a way to live in our world.  She doesn't have to do this without help.  I have lots of patience, and her brother loves her.  But we can't keep completely bending our world to suit her.

I thought I'd still feel scared.  But I have this weird sense of peace.  Of course Lily isn't screaming right now, so who knows how this'll feel later.  But for now, I like the idea of reclaiming our lives.  I don't expect things to be easy or really normal.  But we have to move in that direction.  And the change has to come from me.  Lily's therapist hasn't done or said anything to support this.  Her psychiatrist doesn't say anything about behavior.  She just listens and prescribes meds.  Now that I get that, their contributions won't alter our existence, I understand that I really am in charge.  I don't necessarily feel competent in this capacity, but this ship needs a captain.

Friday, January 14, 2011

Grateful Perspective

I've been preparing a post about our progress, including the frustrations, worries and bumpy road we're on.  Then I opened this morning's paper and saw the feature about Christina Green's memorial.  I looked at the photo of Christina's brother wiping away a tear, and I got real.

Our circumstances are hard, and sometimes sad.  But our blessings are abundant.  Christina is the youngest victim of the incident in Tuscon.  An innocent victim of a disturbed young man.  Her mother, father, brother and friends have been denied the opportunity to play with, teach, resolve conflict with, cook, sing, dance, laugh with . . . love, that beautiful child.

So, today I'm focusing on the lovely quiet start to my daughter's day.  I'm thankful for the peaceful slumber she had last night.  I'm ready to lovingly clean our safe, warm home and cook a nutritious and delicious meal.  I'm going to try to get Lily out for a walk in the cool California sunshine.  Or not.  But I have good intentions, and a plateful of gratitude.  I'm sure I'll return to my own myopic ways in a day or two.  But I'll try to remember to revisit the world of grateful perspective once in a while.

And I'll say my own version of a prayer for Christina's family and all the survivors of the Tuscon tragedy.

Monday, January 10, 2011

Bunny Drama

One of the hallmarks of our life before beginning psychiatric treatment was that we were regulars at Urgent Care.  Lily rarely made it through a week without so strenuously complaining about physical discomfort (headache, stomach upset, pain in knee, leg, arm, foot . . . ) that we needed to go to the doctor.  Sometimes she had something treatable, often she didn't, and her symptoms inexplicably disappeared.  These days it's rare for Lily to need a doctor's care unless it's for her psychiatric symptoms.

This is not so for her bunny.  Lily has transferred her health worries to her bunny, Moe.  And the fun is increased by Lily's access to the internet, where she reads posts about improbable issues like bunnies getting ulcers from having their nails too long. 

A few weeks ago, Lily was beside herself about Moe's poops, and whether he was drinking enough water.  Round and round we went, as I explained that he seemed normal and healthy, and Lily insisted that Moe needed to be seen by a vet.  She emphatically and tearfully stated that Moe wasn't drinking his water, and that he surely would die.  I finally took Moe's water bottle and used a sharpie to mark the water level, explaining to Lily that we could check the level later in the day to know how much water he was drinking.

That sharpie became my new best friend.  Lily was able to watch the water level decrease, alleviating her distress over that issue.  We carefully tracked his poop output and determined that he was indeed pooping.  Yay!!  Problem solved, right?  Wrong.

Lily's fixation this week has been over Moe's poop again, which is softer and clumpier than usual.  More tears, and adamant demands to phone the emergency vet on the weekend.  Mind you, Moe was running, frolicking and hopping about the house, depositing poops and being his delightful self.  I phoned the vet and she agreed that if his behavior and eating habits seemed normal, he needn't be seen, but we should monitor his poops over the next few days.  Lily still isn't overly happy with the decision, but I'm not willing to expend the time or money on a visit to the vet if it's not necessary.

Just call me a mean old mom.

Thursday, January 6, 2011

Lifelong Prognosis?

I find myself wondering what my daughter's future will be?  She's intolerant of many sounds, and especially words with the "ck" combination.  She's been experiencing more psychosis, possibly linked to an increased use of an inhaler for asthma symptoms.  Her newest tendencies are violent, and as a household, we're struggling with that.  I know stress influences her symptoms, and yet I'm unable to provide a completely stress free environment - we'd need to maintain complete silence, never bring meat into the house, and basically live our lives . . . her way.  Her music, her entertainment choices, her television shows, never venturing out of the house to places she's not comfortable, an impossible task.  She's often afraid, so she can't be alone.

On the flip side, I've been advised to treat her like a normal kid.  Holding normal boundaries, administering normal consequences, or "normal" as typified by our family practices.  But the level of conflict that arises when I do this is horrible.  Screaming, throwing things.  And, the resultant hallucinations?

I'm stymied.  And wondering if she'll always be difficult.  If she'll be able to find enough calm and peace to build healthy relationships.  She can be very sweet and giving.  I've seen it, even as recently as Christmas as she made many gifts for family and friends.  Are we in a very temporary period of trauma?  Will this be a longer period of adjustment, or a lifelong struggle?  I almost wish I believed in psychics and could access someone's crystal ball.

Wednesday, January 5, 2011

More Psychosis

Lily had a scary hallucination this morning.  She woke up and saw a ghost like figure sitting on her bed and reaching out to touch her.  She screamed for me - and I went running up the stairs.  I'm grateful she wanted me to soothe her, but so discouraged and sad for her.  I can't imagine how that must feel for her.

It's frustrating that she can go along for several weeks and be fine, and then the meds stop working as well, or perhaps the disorder, her psychosis, becomes stronger and . . . beats the meds.  I don't understand the changing nature of her symptoms.  We are sorely in need of a brilliant, guardian angel who can wave a wand and make it all better.

Monday, January 3, 2011


We've had a few very hard days with Lily becoming increasingly more agitated.  Last week she had two days during which her hallucinations returned, and her auditory sensitivity has become worse, resulting in her yelling and throwing things around the house.

Being cooped up with her high energy little brother for the last two weeks certainly has made her situation harder.  They get on each others nerves and argue constantly.

This evening, I became impatient, yelled at  her and put my arms round her to hold her back when I thought she was going to hit her brother.  So she hit me instead.

We don't do this.  I don't hit my kids, and I don't tolerate physical violence between them.  I was so angry, and then I felt so bad.  She's having a hard time.  And when I try to hold a boundary, things escalate.  I don't know how to handle this.  I want to help her, to soothe her, but I also really, really want a home that isn't in constant turmoil.  I want my sweet little girl back.

Saturday, January 1, 2011

First Hospitalization, Part I

In my post of October 12,  When Things Became Even Worse, I explained how Lily ended up in an adolescent psych ward an hour away from home.  The event was traumatic for our close knit, sheltered family.  I was devastated and afraid for my daughter, and guilt ridden because I wasn't with her, soothing and protecting as I'd tried to do for her whole life.  It hadn't yet sunk in that my parenting methods weren't adequate for Lily's needs, that the situation was beyond me.

After phoning my mom, feeling every bit a bereft child, I wandered the unfamiliar streets again, in hopes of finding a place to get coffee while waiting for mom to make the long drive.  I walked for what felt like miles, finally finding an open Safeway with a Starbucks.  I was pitifully grateful for an overpriced latte, but tried not to look the barista in the eye in fear that she'd know I was a negligent mom with a child in the local mental health ward.  Exhausted, cold and ashamed, I walked back towards the hospital and stood in front of a Target store, an easy landmark for my mom to find.

Mom made record time and drove up before I finished my latte.  I got in and asked her to drive to a remote corner of the parking lot, knowing that I was about to lose it.  As she put the car into park, I let loose, sobbing and explaining what had happened.  She held me, like I wanted to hold my daughter, and listened, murmuring her love and support.  My mom and I aren't always close, but she was just what I needed in that moment.

We drove home and I hugged my younger son before crawling into bed for a few hours sleep.  During those hours, my family marshaled forces.  My two older sons set up to tag team care for my youngest.  My sister got on the first flight available to be with us.  My oldest daughter, a child therapist in Southern California, arranged her schedule so she could fly up mid week when we expected Lily to be released.

After a short rest, I rose and made plans for the evening.  The facility allowed visitation only from 6:45 to 7:45 each evening, and I wanted to leave early so we wouldn't be detained if there was a problem on the road.  I packed a change of clothes for Lily, her toothbrush and vegan toothpaste, and my mom and I started out, stopping by the airport to pick up my sister on the way.

Lily didn't want to see anyone but me, but my sis and mom provided some much needed moral support for me.  I signed in with the security guard, surrendered earrings, cell phone and keys before being allowed into the building.  I waited with a small crowd to be let into the locked ward.  During the wait, we could hear disturbing yelling and crying from the ward, along with the unmistakable sounds of someone banging on a wall.  I grew more tense and worried, but worked to appear calm before being admitted for the visit.  I knew that if Lily sensed my distress, it would only add to her struggle.

Lily was happy to see me, and I got a good hug before we settled down to visit.  We sat together in the hallway, on adjacent chairs, as specified by the facility rules.  I asked Lily about her day, and as she began to tell me what her day was like, she grew increasingly upset.  One of Lily's compulsions before being admitted was her head tapping, lightly tapping on her head nine time with a pen every time she heard a word with "ck" in it.  Because pens were considered contraband, Lily was denied that particular coping method when faced with anxious feelings.  Adding to her discomfort, she was in a coed adolescent ward with numerous angry seventeen year-olds.  The word of choice on the ward was of course, fuck, repeated frequently with an escalating emphasis.

Teens have an amazing communication network and their stories were shared in boasts of violence, drug use and promiscuity.  Part of Lily was intrigued by these tales, and part of Lily was frightened by them.  In spite of her struggles, or perhaps because of them, Lily was a young thirteen, very sheltered.  She was gaining an accelerated education I wasn't happy about.  One of Lily's other discomforts was the lack of vegetarian options from the institutional cafeteria.  So she was hungry, frightened, and just beginning to understand that she'd rather be a home.

Lily began to cry and ask to go home.  I put my arms around her thin shoulders and explained that I was legally prevented from taking her home because her admittance was involuntary, a decision made by the emergency room doctor after Lily's 911 call.  I reassured her that the staff would take good care of her, and we spent a few minutes speaking with the evening charge nurse, a warm young man who promised to look out for Lily.  She calmed a bit and told me about her roommates before our hour was up.

When the parents were asked to leave at the end of the visitation hour, I gave Lily one last hug along with a brave smile that even I didn't believe, and told her I'd see again tomorrow.  I blindly exited the building and asked my mom and sis to get me to the car.  I couldn't speak without breaking down and knew Lily might be able to see me through the windows.  I had to maintain a confident facade for her benefit, or I'd never to be able to leave her there.  And I didn't have a legal option to take her home yet.

I was furious and horrified by the chaos of the yelling and underlying feeling of violence on the ward.  I would have to trust the staff at the hospital, but had no trust in anyone's ability to care for and protect my daughter.  The truth was, I didn't know how to help Lily during a state of mania induced psychosis.  I knew her med regimen wasn't working, but had no idea what would work.

We got back to Santa Cruz and I took a sleeping pill, knowing that I'd never get any sleep if I wasn't medicated.  I fell into bed and slept soundly until my ringing phone woke me up after midnight.  The ringing stopped before I got to the handset, but I saw from the caller ID that the call came from the hospital.  I called the number and was eventually connected with the charge nurse who said Lily was upset and wanted to speak with me.  My heart sank, but a brief conversation with Lily somehow resulted in calming her own.  I again reassured her that I'd see her the next day.  I waited until she disconnected before hanging up my phone and crawling back into bed for a restless night's sleep.

Happy New Year

We had a rough time around our home this week.  The combination of post Christmas let down (when does that end?) and too much time cooped up together in a small house did it's dark magic, with the requisite arguing, yelling, accusations and the more recent addition of throwing objects at the closest sibling.

I witnessed a return of Lily's hallucinations and wondered how much of that was due to the stress of the arguing, etc.  But she was quieter during the last day or so, giving me hope that we're not headed towards a fullbown episode.

As promised, I've been trying to write about Lily's hospitalizations.  I find it difficult to return to those traumatic days, but feel it's important to have a clear record of what we've been through.

I'm ready to post the first part of the story of Lily's first hospitalization in the mental health hospital.

May you all have a peaceful new year and blessings of joy and enlightenment in your households.