Monday, December 26, 2011

Reasons to be Grateful

Our family had a lovely, peaceful Christmas, and I'm thinking about this past year and how much things have changed.

Some of that is small.  Today I took out recycling and didn't think twice about leaving Lily in the house without me.  Last year she would have wanted to be with me, meaning I'd wait until she had her shoes on before venturing out the door and to the bin.  Even now, Lily is upstairs in her room, enjoying privacy, not scared, not yelling at her brother to be quiet (he's talking on-line to his school buddies), not screaming at me to be up there sitting in her room.  It's a different life in so many ways.

The fall brought milestones that felt miraculous.  Lily attended a dance party, and when I went in to pick her up, she was laughing, dancing, and holding hands with other kids.  I can't even begin to express how meaningful that is. 

Laughing.  Such a small act that says everything about her state of mind.  She spent last year either sedated to a stupor, or depressed beyond words.  I missed her laughter, the sweet, gentle and silly sound of genuine happiness.

Dancing.  To modern music.  Uninhibited.  Joyful.  In a room full of people.  Normal - and so very far from the emotions how she expressed  last year.  My jaw dropped.

Holding hands.  The child who wouldn't accept a hug, a light caress, a pat on the arm.  I knew she needed to be hugged and held.  I've needed to hug and hold her. And this, happily, is becoming more common.  Lily wants me to sit close to her, not because she's scared, but because she's willing to allow herself to be loved.  That's how it feels.  She gets silly and wants to duck walk, or poke me playfully when we're out. 

And there's more.  She's willing to be silly, look funny, make outrageous sounds together when we're out shopping.  She's having fun.  And so am I.

Which doesn't preclude conflict or adolescent drama, but gives me some much needed perspective.  When Lily is grouchy, it's balanced a bit by good humor at another time.

And she still will have times when she's overstimulated and needs space, or a quiet break.  But she's easier to work with when this happens.  She calms down faster and is able to move on, and sometimes to rejoin the group.

Socially we're still navigating and exploring how to connect with genuine friends.  And how to deal with the disappointments that come with being left out of other friends' get-togethers.  Lily doesn't understand why girls will talk about going shopping together and then fail to call her and let her know when and where.   She's still learning how to be proactive socially, how to do the inviting and pull something together.  It's not so easy for her.  She gets her feelings hurt, and she feels it deeply.

But I know for sure, that this is one more hurdle we'll overcome.  Lily is incredibly resilient.  She has an iron will, and I believe in her.  I  believe she can be happy.  That she has tremendous things to offer the world.  That she will ultimately use her experiences towards a good end.  And I'll help her all along the way.

Friday, December 9, 2011

Cool Kids, Geeks and Blessings

Life has recently kept me from my keyboard, and I've missed writing, but life has also been so very good recently!  Lily is functioning, beautifully, mostly normally, and that allows our family to function normally.  I am so damn grateful.  Truly, gushingly, tears of joyfully, grateful.

Lily is managing school.  Since our last set-to about attending (see Drama Drama Drama) she has been ready to go each morning with little or no drama.  She's not always happy about it, but she's doing it.  And . . . she's connecting socially with other students!  Not just the group of girls she thinks she wants to be friends with, but other kids in her classes who, it turns out, are actually nice.

If you haven't yet been through this kind of social torture, adolescent girls band together and either let you know you're really cool, or let you know they're only letting you hang out with them as a favor to you.  Not in so many words, but by cell phone manipulation.  You call and they answer, you're in.  You call and get their voicemail, don't expect a call back in this decade.

Lily thinks she wants to be in with these mean girls.  And it ticks me off that they're callous.  But meanwhile, Lily is becoming closer to kids you wouldn't find in the cool kid lineup.  I love it.  These are not the kids you'll find partying on the beach Saturday night.  They're kids who have quirks not so different from Lily, or at least quite different from the average popular kid.  So, they're more accepting of Lily if she says something a bit off, if she misses the social cues that fuel the in-crowd.

So being a mean mom has allowed me to give Lily the gift of normalcy.  She can be aggravated, bugged, repulsed, or just embarrassed by my mere presence.  She can be at school where a shared experience makes allies of unlikely souls, banded together by totally having to put up with their uncool parents and the oppressive regime of high school.  They are a motley group of survivors in modern society.

Thank you Spirit, Lord, Universe, for the blessing of a kid who is not cool.  Viva la difference!

Wednesday, November 2, 2011

Drama Drama Drama

Or should I say Teens, Teens, Teens . . .

Lily is accustomed to getting her own way in almost everything.  That dynamic has been in flux since starting with the new therapist during the summer, and of course Lily is pushing limits to hold onto control.  I don't blame her, but it sure makes life interesting in some challenging ways.

She's in school (YAY!!!) and achieving good grades - fantastic!  She's so smart, so capable.  But it is hard for her.  Socially, she really struggles, so being around hundreds of other teenagers is uncomfortable.  We're just beginning to work on socialization issues, and I believe we'll make good progress.

But she's becoming more resistant to attending school.  She's getting up in the morning and complaining about being confused.  I don't think I really buy that anymore.  She knows me well and plays on my sympathy.  I love her, I want things to be comfortable for her.  But that's not the best thing for her.  Life can be hard, and she needs to be able to cope.  I can't, don't want to, always pave the way for her.  She'll never become more confident if I'm stepping in so she doesn't have to handle things.

So I'm getting better at holding a hard line.  Last week she missed a day of school after a morning full of drama.  Crying, refusal, pleading that she was incapable of going to school.  I was rushed, trying to get her brother to school on time, not wanting to facilitate Lily's behavior.  I ended up leaving her home alone, her choice, while I drove her brother to school.  I told her to get her things ready and I'd take her to school after I dropped her brother off.

She phoned her grandma to complain that I left her home alone and didn't care that she didn't feel good.  She wanted Grandma to rescue her.  To my mom's credit, she talked with Lily, reminded her that she's a strong, capable girl and that she'd be OK.  She also told Lily she could stay with her while I attended my classes.  I wanted to get to my classes, and I gave in and took Lily to my mom's.

Today was different.  I got Lily's things together, insisted she get her shoes on and insisted she get into the car.  She cried and yelled all the way across town.  I kept telling her she'd manage, that she could get through school even if she didn't feel well.  I told her she didn't have to be perfect, she just had to be present.  She yelled some more.

We dropped my son off first and drove on to the high school.  Lily spent her time trying to provoke me.  Tapping on my face, blowing snot indiscriminately, kicking the dash.

Worst mommy moment?  When I told her if she didn't leave my face alone I was going to smack her.  I wouldn't, but I can't say I didn't want to.  I've already called her therapist to ask for better ways to handle this one.

Best mommy moment?  When I told Lily that even though it had been a fucking hard year, I was still her mom and would tell her what she needed to do, where she needed to be, that she would attend school.  Yeah.  I said that.

I parked across the street from the school and got out to walk Lily in.  I pulled out her backpack and waited for her to climb out.  Yes, I was that angry mom standing on the sidewalk shooting her dear daughter mean looks while angrily exhorting her to get out of the car and get into school.  When I finally threatened to take away her computer privileges for a week she got out of the car.  Then she wiped snot on me and I took computer privileges away for a week anyway.

Lily still wasn't ready to go to class, so we went right in to see the vice principal and Lily's resource teacher.  Can I just say that this is an amazing team?  Amazing.  They were calm, respectful, and firm.  They backed me up and efficiently confirmed that yes, Lily needed to be in school if she had no fever and wasn't throwing up.  I clarified that spitting on the floor didn't count as vomit.  Was that petty?

Lily was sent off to class with a tardy pass, and I left, tired but victorious.  Not elated, not celebrating, but having won an important battle for Lily.

She will attend school.

Tuesday, October 11, 2011

Family Functionality

I'm out of sorts this week, and it's my own fault.  Lily had a rough start to her week last Monday (Fun and Games with Law Enforcement) but we had a good session with her therapist on Tuesday and moved into a more positive mental space.

So what's the problem?  I was called out of town mid week, and planned to take Lily and her brother with me. My mom offered to take care of the kids so they could stay in school while I was away.  I had misgivings and talked with mom about her ability to handle things, but she reassured me she was comfortable with it.  So, I accepted her offer.

And it was awful.  Lily is worlds better than even a couple of months ago, but she has issues that will take time to address.  Mom exploded on Lily over an emotional incident.  Lily phoned me, and I talked through the event with her.  I calmed her down and suggested she approach mom with an apology and an offer to take care of kitchen clean up.  Before Lily could get to the apology, mom started yelling again, effectively shutting down Lily's efforts.

Mom wasn't able to regulate her emotions, even after she and I spoke on the phone.  Her tirade continued through the next day.  Lily was upset, but maintained her composure with lots of phone time with me, and lots of support from her little brother.  My older son was able to step in and care for Lily and her brother until my return a couple of days later.

So I have some mixed feelings.  On the up side, Lily did an amazing job of holding it together in a highly stressful situation.  I'm also really pleased that Lily and her brother bonded through this, supporting each other.  I'm so proud of both of them.

Then there's my disappointment over my mom.  When she's good, she's very, very good.  When she's bad, she horrid.  I was worried that she might not handle everything the way I'd like, but I didn't think she'd fly off the handle in such a spectacular way.  I need to talk to her about it, but things are especially hectic and it'll have to wait.

So I made a mistake when I accepted mom's offer.  We have enough history that I should have known better.  And sure, it brings up plenty of stuff from my childhood.  When Lily called and told me what happened, I knew just what mom sounded like.  That's not something I should expose my kids to.  But they love her, and there are times they can enjoy each other's company.

Am I teaching them lessons about acceptance, about our ability to handle faults and adversity?  Or am I teaching them to accept being treated unacceptably?  Will it make a difference if I ask mom to apologize?

The kids are moving on, but what are they taking from this?  Am I making too much of it?  I have no objectivity.  I wish I knew how a healthy family would handle this, but I don't think a healthy family would encounter this situation.  Time to get some professional advice.

Tuesday, October 4, 2011

Fun and Games with Law Enforcement

Lily and I had an interesting little incident last night.  We were in and out of urgent care, three times last week, for her headache pain.  After examinations, sinus x-rays and a CT scan, the doctors being consulted put their heads together and agreed that she most likely has a mild sinus infection being exacerbated by seasonal allergies.  She’s on an antibiotic and allergy medicine in addition to her regular meds.  Because the antibiotic is contraindicated with her acid reflux med, she has to avoid taking them at the same time.
As a result, her stomach is upset, compounding her discomfort.  I understand.  I’ve offered many home remedies in addition to the meds (saltines, flat coke, hot tea).   She won’t try the home remedies.
Last night she wanted me to take her to the emergency room at the local hospital.  I explained that we didn’t need to go, based on the test results and the advice of the doctors.  Lily became agitated and began crying and yelling.  Then she pulled out a previously effective tool, making crazy faces at me.  I realize this sounds insensitive, but here’s the thing, it’s nonsense.  She’s acting out, trying to convince me she’s going into psychosis.  This time last year, I was doing everything in my power to appease her and calm her down.  Which sometimes worked and sometimes didn’t.  Her new therapist has weighed in, saying she believes Lily does not have psychosis.  Does. Not.
Which doesn’t mean Lily doesn’t think she has psychosis.  But for me, it means we can, and are, working to get back to a normal level of relating and holding healthy family boundaries.  Which also means, Lily gets her way far less often than she did all last year.
But remember, Lily is the most doggedly determined being I know.  So when I refused to take her to ER and suggested she go to bed, she called 911.  Yeah.
The sheriff came calling.  Two deputies actually.  One spoke with Lily, one spoke with me.  I explained, clarifying the events of the last week and Lily’s medical and psychological issues.  Bear in mind, that while making her 911 call and speaking to the deputies in person, Lily was calm, articulate, and clearly not in physical distress.
So we had an evening of Lily drama.  Better drama than when I was terrified that she was losing her mind.  I’d much rather deal with a difficult teen than a child suffering from psychosis.  It’s just a lot less scary.  But that doesn’t mean I’m interested in taking on behavior problems right now.  I’ve missed three weeks of Monday classes because it’s hard to get Lily back to school Monday morning.  She is making progress, but as usual I want more.
I sound greedy, I am greedy, but I’m ready to have a life again, with moments that don’t revolve around Lily.  We’re actually pretty far from that.  But much of the time I spend on Lily these days is at least more productive.  I can help her with homework, facilitate a cooking project, or just talk and laugh together.  It’s mostly so much better, vastly better than even a few months ago.  But I still exist in a Lily centered household.  We need more balance.

Friday, September 30, 2011

Grief and Joy, Uneasy Partners

I have this tremendous, hard knot of grief trying to rise out of my chest.  I've been so low, and couldn't figure out why.  I'm in school, Lily is in school, my younger son is thriving, things are improving, dramatically.  But I need a good, ugly cry.  You know the kind, sobbing, snotty, cathartic.

I feel like someone who just survived a ten car pile up on the freeway.  Someone who walked away, not unscathed, but on her feet.  And after seeing things will be OK, I just fall apart, post crisis.

That's where I am.  I didn't know during this past year if we'd ever be OK.  I really didn't.  I was terrified that Lily would never function at her high level again, never regain her sense of absurd humor, never be open to affection, giving and receiving love, hugs, the small touches so important to close relationships.  I didn't know if she'd be able to function outside of an institution, if she'd be able to recognize reality, let go of her paralyzing fears.

I didn't know if she'd remember how much she loved her younger brother, how close they'd been in our super sized blended family.  How they were partners in crime when they were little, cohorts in mischief and silliness.  Would she ever stop treating him like an enemy?

I didn't know if she'd ever trust me again.  Let me in.  Listen and understand when I told her I loved her, wanted her to feel safe.  I've so missed holding her, like I love to do with all my children.  Encircle her with my love and protection.

And there it is.  That protective love that couldn't keep the demons at bay.  Couldn't protect her from her own tortured imagination.  Sometimes, too many times, I'd try talking to her and she'd just shut down.  Eyes open, but not seeing, not hearing the truth of whatever I was trying to get through to her.

I've had a hard time letting go of my fears about my own future.  Would I be able to return to school and finish my degree?  Would I be able to get off the couch we shared for so long because she was scared?  Would I ever be able to get outside and go for a walk by myself?  Listen to my music, cook with love and freedom, write more than a paragraph or two?  Would I end up spending my life providing daily care for someone who was suspicious and scared and unhappy, limiting my every move, practically my  every breath?  Someone I so love that it breaks my heart to see her and remember what she was before?

Before we were blindsided by symptoms of mental illness without a clear diagnosis.  Before we were held captive by a changing roster of psychotropic meds with life changing side effects.  Before our world stopped cold, in such darkness that I couldn't see how we'd get past it, regain any of the joy we all needed.

I knew I needed to keep putting one foot in front of another, but I didn't know where those steps would take us.  I knew I had to try everything I could to help Lily heal and to help my other children know I was still the mom who loved them and wanted to take an active part in their lives.  Even if no one else could see it.  I was, am, still me.  Still the parent who wants most of all for each of her children to be happy, healthy and well loved.

And yes, I still wanted joy and purpose for myself, outside of my children's needs.  Even outside of Lily's tremendous needs.  I've been so afraid I'd be lost in that.  It sounds so horrible, because I love her so much, but I've been afraid that my identity would revolve only around caring for her.  And that I'd resent it because that's not enough for me.

Guilt, guilt, guilt.  The most important part of my life has been my children.  Will always be my children.  But I want more.  I do.  I'm intelligent and creative.  I want to do something with that.  I need to do something with that.  But in the face of my child's suffering, how could I even think that?  She's been in hell.

So have I.  So have my other kids.  And I wanted out.  I didn't want to abandon Lily to it, wouldn't have, didn't.  But I yearned for a day on the beach, a night of peaceful sleep.  A life out of the shadow of anxiety, mania, psychosis.

We're on the other side now. Seeing change I hardly dared dream of.  I see humor and affection and creativity in Lily again.  The rest of the family is moving on, doing well, living a good, happy and productive life.  We'll have more challenges, some of them will involve Lily.  But we're coming to the surface, we can breathe again.

So I need to process this grief for our hard year.  I have to make way for the beauty and surprise of what's in store for the future.  Time to let go of my desperate grip on the moment and reach for something else.

Sunday, September 25, 2011

One Day at a Time

I went into this weekend feeling like I wanted to focus on repairing our family.  We've gotten so far off track, we were living a sort of parallel existences, in the same small living space, but so separate.  Eating together was, still is, rare.  Being in the same room without arguments, yelling and tears, has also been rare.  Little glimpses of harmony, like our car trip to Southern California in August, made the typical daily grind all the more frustrating because I knew what things could be like.

But we have to find our way back, or how are my kids ever going to be able to function in an intimate family dynamic?  Family meals with conversation, game nights with some laughter, mellow outings just for fun  . . .  these things have to coexist with the arguments so that the kids know it's normal to disagree, to get angry, and then to reconnect, make up, love each other and move on.  Let some things go, by keeping perspective.  We don't always get our way.  And that's OK.

I've been trying to make everyone feel like they could get their own way whenever possible.  Meal choices, activity choices, separate from each other to avoid conflict (which it didn't anyway!).  Now I'm remembering and tuning in to the concept that I can make a unilateral decision for the good of all, or at least in my estimation, and be the parent.  Or put another way, they're not always going to be happy with my decisions.  Oh well.  They need the lesson in that.  You don't always get what you want, and you can still participate and have a good time, or even do something just so someone else has a good time.  That feels good, to do something for someone else.

Rome wasn't built in a day, and we won't become the ideal healthy family in a day.  Not that I'm expecting ideal, but a closer version than we have now.  So this weekend I settled for another round of communal housecleaning (rotating core list with an expanded set of responsibilities) on Saturday morning and sitting down to Sunday dinner at the same time and place. 

I really wanted to take the kids for a fun outing, and had made tentative plans for whale watching, but the weather didn't cooperate, which was just as well.  Neither Lily or her brother was all that interested in whale watching, and I realized I was creating more pressure than anyone needed.  We need more normal, low key.  We don't really need a forced fun event.  Special events will happen, but rushing that is a mistake.

So I think the goal of feeling more normal is good.  Our new life has been termed the new normal by our local NAMI chapter.  I understand it's beneficial to lower expectations when you're in crisis.  But I threw out all my expectations, and that's going too far.  I'm claiming some of them again.  It's good to shoot for a higher level of functioning.  We will do this, one day at a time.

Friday, September 23, 2011

High Drama, Good and Rough Times

Yesterday you could have knocked me over with a feather!  Heck, I would have somersaulted and rolled with it! Lila and I went to the market, both of us in good spirits.  When we got out of the car and walked across the parking lot, Lily put her arm around my waist and wanted to duck walk with me to the store entrance.  Seriously.  So we did, laughing all the way.

My daughter voluntarily displayed physical affection.  To me.  I'm still stunned.

Later in the evening she was stressed out about homework, and got teary.  She has one particularly intense teacher and she doesn't yet know how to deal with his energy.  After listening to him on back to school night, I'd say he's a bit different.  Eccentric, but not necessarily accepting of others' differences.

So, I helped her with her homework, rubbed her back and got her settled in bed.  This morning she got up and got ready, but balked when we pulled up to the school.  She had an anxious reaction, upset stomach and tight throat.  I spent a few minutes trying to reason with her  and get her to just go to class, but eventually I needed to drive to my son's school to drop him off.  Lily went with me, so I found a nice place to park after getting her brother to school.  I gave Lily some ativan to take the edge off the anxiety, and we talked through some of what's bothering her at school.  She couldn't pull it together enough to go to school at that point, so we headed home, with the understanding that she wouldn't have access to electronic entertainment until she returned to school.

I was so disappointed and frustrated.  Angry at myself for not getting her to go to school, frustrated with her for not just sucking it up.  I put on some music, one of my favorites things to do, and went home to clean house.  I missed out on my walk (I tried with Lily but she didn't feel well) and my peaceful morning to myself.  I canceled an appointment. 

Lily finally was ready to try to go to class after lunch.  She was going in time to sit in on the dreaded teacher's class, so I have to give her credit.  She's trying.

But I'm super sensitized to the fear of backsliding.  I can't go back and give up my classes, the dancing, the progress we've made on the home front.  I don't want her to slide back into depression and fear.  I want to see more of the laughter and affection.  I do realize she's made incredible strides.  That's all the more reason to want to see it continue.  I think we were mistaken about the level of illness and her inability to cope last year.  She can do more than we realized.  But I need more help keeping her on track.  I need a better game plan, so that we don't flounder before school.  I know our therapists will help with that.  Thank goodness.

Wednesday, September 21, 2011

Craaazy Tired (Yes, I used the "C" word!)

Things are still so remarkably good, I'm counting my blessings all the time.  The small danger with this is that I have my rose colored glasses firmly in place, and I tend to overlook warning signs and smallish issues that I honestly need to stay on top of.  So, this is me, trying to stay real while enjoying a completely different world.

Lily is doing well in school.  She doesn't always want to be there, and keeping her on track with attendance will be my challenge.  So far, I've been able to get her to hang in there, even when she calls me because she doesn't feel well.  That's a huge accomplishment!  Having the school on board with that is amazing.

The IEP meeting is coming up, and her therapist will be there, so I feel really good about getting what we need.  Her english teacher may not be a great fit, but that doesn't mean she can't handle it.  I'm keeping very close tabs on her school experience.

So, yeah, I'm tired.  Still trying to accommodate Lily and her brother enough so that they stay unstressed with homework and on track.  I bounce back and forth between them for homework help when I should also be getting some of my own homework done.  But that's largely an issue of time management for me.  I don't have tons of time because of the driving I do every day, but I can get more disciplined about what I focus on.  And the kids both willingly participated in sharing chores on the weekend for some collective house cleaning.  Awesome!

My time management challenge is about the fact that I actually have some now and I want to sleep and visit people and take long walks and shop and read and veg out and go to the beach and on and on . . . all the things I've been missing out on.  But it is time to get serious about my classwork so that I don't get too stressed.

Going to dance classes on the weekend has been absolutely fabulous.  I'm remembering how much I really love dance.  I learned the fox trot last weekend and had so much fun - I feel a little bit like the old me, before kids and other obligations.  I'm not wishing away my kids, who I adore with nearly everything in me, nor am I rewriting my awful childhood.  But I do remember having dreams and a certainty that I could accomplish whatever I chose.  I still have that core belief, along with an understanding that nothing worthwhile will come without a lot of work.

So right at this moment in time, life is good, I'm happy and grateful and feel like we're on a very good path.

Thank you, and goodnight.

Wednesday, September 14, 2011

I am a Weepy Mess!

I am, truly, but it's a good thing, really!  We had a family therapy session today with Lily's new therapist, at our house.  No kidding.  She comes to us, and she's amazing.  Smart, experienced, intuitive, thoughtful.  She is able to explain things to Lily in a way that seems to be breaking through Lily's hard shell.

It's no secret that this year has been hell.  Lily has suffered so much, and she is depressed and angry and fearful.  Not that she can articulate those emotions (except for the anger, but then that is misdirected).  She has been wanting answers as much or more than anyone else.  So she researches and tries to figure it all out, and when the current therapy or med isn't doing the trick, she self diagnoses with another ailment.  She doesn't trust that I can help her figure it out, she seems only able to trust herself.

But Miss M, the new psychologist, knows her sh*t.  She efficiently and clearly explains how disorders differ and what she looks for in a diagnosis.  And - she's on Lily's wavelength.  Lily has little patience for mindfulness tools that have directions.  She doesn't want to process something as simple as: stop, place your hands on your knees, take a breath for 3 to 4 seconds, slowly exhale, repeat 3 to 4 times.  She has a valid perspective.  When she's angry, frustrated or fearful, she needs something she doesn't even have to think about.  Miss M is on this.  She totally empathizes.  Even I didn't understand this.  I kept thinking, how do you know unless you just try? 

And get this.  Miss M, when I expressed my wish that she let me know where I can improve my parenting, said she thinks I'm a good parent.  I said, oh, well but I get impatient and grumpy sometimes.  And Miss M told me that even Freud said we all should be able to have our rough spots and lumps, that we don't have to be perfect.

So, wow.  That sums it up and yet doesn't even begin to touch this experience.  We have incredible therapeutic behavior providers coming to our home multiple times a week.  The school is frigging fantastic.  I even went to a dance class last weekend.  A dance class.  For me.  And I had fun.  How long has it been since I honestly had real fun?

So yes, I am just completely weepy.  For how amazing things are in this moment.  For how horrible things were the past year.  For the support I now feel.

Can I just say, I've been so scared.  So scared that things wouldn't get better.  So scared that I was to blame (even when I know better, I felt like she's my kid, I'm supposed to have all the answers and understand what she's going through).  So afraid that because I'm a single parent and don't have anyone to step in and share this responsibility that I could be handling it all wrong.  So sad that I didn't have anyone to share this responsibility with.  No one to really lean on.

I feel so relieved and exhausted that I could sleep for a month.  Not that we don't a boat load of work ahead of us, but I'm not doing it alone.

Thursday, September 8, 2011

Blissful Moments

Do you hear that?  The long, soft, quiet sigh?  That's me, breathing through the end of Lily's second week in school . . . aaaahhhh . . .

It's premature as tomorrow is Friday, but today was a landmark day.  I dropped Lily off at 7:40 this morning, and before I could get on the freeway, she called to say she didn't feel well and would be calling after turning in her work, to come home.  I asked her to hang in there, try to breathe deep and stick it out.  Then I phoned the school psychologist, who graciously informed me that they have a plan in place for Lily.

Oh - My - Goodness.  Really.  They have agreed to route Lily through the nurse's office to her case manager/tutorial teacher, who will then work with Lily to help her regain her composure and stay in school.  And it worked.  The last couple of years at middle school, the office always had Lily call me to come and pick her up if she came in with a somatic complaint.  I always felt I had no choice.  If the nurse calls, you go pick up your kid.

Until now.  They're on it.

So I went to my classes.  I admired the sun and mountains and reservoir on the way.  I got to campus early and nibbled on watermelon and read before class.  Then I waltzed and spun and laughed.  I sat through my philosophy lecture without dozing off.  I had a healthy sandwich for lunch and then went for a swim.

Is this my life?  I feel almost like I'm dreaming, but not quite, because I don't want to miss one moment of each blessed day.  I'm listening to music I like, walking, feeling a delicious sense of peace that I've so missed.

And Lily is cracking jokes, doing her homework, getting up and pulling her things together for her day.  She looks really good, happy a lot more, and less zoned out.

That's not to say things are perfect.  She can still have emotional outbursts and be difficult when she's upset.  But the periods of happiness and productivity are amazing.  This is so good for all of us.

Monday, September 5, 2011

We're All in School!

Making progress here - and it's feeling really good!  Lily ended up starting the year at the local public high school, and we seem to have a team in place that's invested in her success there.  It's so interesting, because the new team is working with the idea that we need to accommodate Lily less so that she adapts to the world around her.  And I love it.

Seriously.  After walking on eggshells for the past year, afraid I'd stress Lily out and she'd end up hospitalized again, I'm shot.  We were on an unsustainable path, stretched to the limit by trying to avoid anything upsetting to Lily.  Like "ck" words.  When our TBS therapist was here last week and I apologized to Lily for saying a "ck" word (the word back I think), the therapist looked at me like I was nuts.

Aha moment.  "Ck" words don't necessitate an apology.  They are not dirty words.  What were we thinking?  Every time we made a special accommodation for Lily, she upped the ante and needed something more.  Classic boundary testing.  And because I was traumatized by what I thought Lily was going through, those boundaries became only about physical safety.  She was missing out on boundaries that reinforced appropriate and courteous behavior with family, friends and the outside world.

So yes, I contributed to Lily's difficulties by confirming her belief that she should be accommodated in every possible way.  She has her own dining chair, most of the long sofa, her own dishes, pots, glasses, flatware and cupboard shelves.  Even I was wondering where it all would end.  Shared space has been shrinking as Lily's need for personal space has grown.  Want a good laugh?  Lily was even instructing me on how I should be washing her dishes.  Whoo Boy.  I created a total monster.

And general consensus is that Lily truly believes that she needs the accommodations to be safe.  She believes that she's not well and manifests symptoms that she hears about or reads about.  But she may not in fact have schizoaffective disorder,  She may well have Bipolar Disorder, but I'm not sure of anything anymore.  It's been a bizarre year.  From calling Dear Abby on me to our disastrous efforts to have her in school last year, through my retirement this year so that I could cash out my small pension and be on hand 24-7 to care for Lily.

So, did Lily experience psychosis, or did she just think she was experiencing psychosis?  I thought I witnessed mania, but was it real?  I think so, but I certainly doubt myself more than ever.

But that's OK because we have this super cool group of professionals helping to sort it out.  And they're tuned in to the family.  What affects Lily affects us all.  And what affects us all affects Lily.  Finally.  Someone else gets it.  I may be on the very edge of reason, but I'm not crazy.  Hallelujah!

Friday, August 26, 2011

Fall Fabulous Fall

We are busily interacting with a new care team, and getting a very different perspective.  The new team, consisting of a therapist as well as TBS therapists,  a psychologist and soon, a new psychiatrist, are offering an amazing level of support.  Our journey will be an uphill battle, but I'm holding out for greatly improved function for Lily and more balance for our family.

One of the keys to this new approach will be the guidance I receive so that I can more effectively help Lily.  Holding appropriate boundaries, helping her to see that she isn't powerless in her disorder, but that she is strong enough to effect a different outcome.  I've been working on some of these boundaries for awhile, and I have to acknowledge that it's hard for Lily when I change the rules. Still, I'll continue, and I'll keep explaining to Lily as we go along why I'm making the decisions that I am.  It's not a lack of love that influences my decision to enforce a boundary, rather it's the strength of my love that allows me to make a change that's hard, that makes Lily unhappy.

In the end I simply want our whole family to function in a healthy, more free way.  A better environment will help heal Lily's relationships with the family and will lower my stress level.

Towards that end, I returned to school this week and am still working on getting Lily's school placement organized.  For me, it felt amazing to get back to the university.  The drive over was beautiful, focusing on fine tuning my schedule and contemplating the material I'll be studying was great.  I even have a social dance class for my PE requirement.  I was intimidated, but it seems like it'll be low key and fun.  I love dance, and I have no illusions about being a competitive ballroom dancer, but I love the movement, rhythm and joy of a waltz or the hustle.  Two sides of a coin.

I'm going to consider this a move towards getting our lives back.  I know there will be challenges, but if I've learned anything this past year, it's that we don't want to stay on the path we were walking, and I refuse to believe we can't do anything to make it better.  Yes, we can.

Saturday, August 6, 2011

Wonder of Wonders

I was concerned about Lily's cycling early in the week - but things are markedly better.  Whew!  We haven't had to add in the Zyprexa, and I'm hoping that her current med cocktail is therapeutically building up in her system.  Because we went up to 50 mg of Lamictal, Lily is a little rashy.  We'll treat that with Benadryl and watch to see if she adjusts and that improves.  Fingers crossed here.

More good news is that we are scheduled to have therapeutic behavior services come in next week, and we are being offered family partnership services as well.  I may get some respite care, which would be such a welcome blessing.

More evidence of Lily's continued improvement:  Lily has been talking to her brother and doing fun things with him.  They're getting along better than they have in more than a year.  No matter how long it lasts, it's a great sign, and so healing!

Best of all, Lily has had these lovely periods of smiling and laughing this week.  At first it looked like it was tied in to some mania, but as that has subsided, the smiles and laughter have surfaced again.  Yes among tears, but still . . .

I am counting my blessings today.

Tuesday, August 2, 2011


We're suddenly in the midst of some big mood swings, seeing laughter one day and tears all day on the next.  We had cut out all Zyprexa and titrated up to 3 mg of Risperdal.  Lily is also having panic attacks multiple times a day.  I feel so bad for her, and once again so powerless to reach her.  When she's in this space, her health fears take over as well.  So - we're off to our family doctor tomorrow to reassure Lily that her heart is healthy and the scary symptoms she's having are only temporary and will be manageable.

I had an interesting conversation with DocD last week about Lily's transition to the new care team.  She shared what she most wants us to be able to share with the new psychiatrist, including tracking the psychosis with anxiety, indicating that the hallucinations may have been a function of the mood disorder as opposed to schizoaffective disorder.  I dearly, dearly hope so. 

I asked her for her thoughts on Lily's continued struggle with auditory sensitivity, and she said she sees that as an adhd symptom, not being able to filter out background noises.  I finally understand why she prescribed the Intuniv!  That sounds bad, and it's not like we didn't discuss the benefits of Intuniv before starting Lily on it, but her explanation at the time was that it would help with the anxiety.

I'm reminded again that this psychiatrist has been more in tune with what's going on with Lily than I realized, but her communication with me, even when I asked what she thought, was very limited.  I  think she was being cautious, wanting to see what would happen with Lily over a longer period of time.  The difficulty was that I was living with the fear and stress that came with trying manage Lily's illness while handling a life beyond the illness.  Work, bills, other kids, housework . . .  And nothing can compete with handling someone in full psychosis, so most of the regular day to day stuff went by the wayside.

So, my lesson about this is, treatment for an individual with mental illness has to include the family.  My ability to help my daughter has absolutely been influenced by the other needs and stresses in my world.  I need to be calm, strong, and not distracted, in order to take the very best care of Lily.  Family support is one piece that has been missing this long year.

Finally, I'm worried that these mood swings will interfere with the start of the school year, for both Lily and I.  I'm trying to get back in to finish my degree this year.  And I so want some normalcy for Lily.  I sound like a broken record.  The truth is that I want her to feel stronger, more capable, proud of herself.  She's an awesome, beautiful, talented girl.  I want her to be able to feel that.  And yes, I want to be able to move forward for my own benefit as well.

An option for Lily, if things destabilize further, would be to add some Zyprexa back in during this transition.  Lily is opposed to that, but I swear if she shows signs of mania, I'll force the issue before I'll leave her at risk to be hospitalized again.

Tuesday, July 26, 2011

Our Mixed Bag

We're transitioning to a new care team for Lily - and I'm very happy about our first contact.  We met with a fabulous district psychologist for an assessment in order to access mental health resources through our  public school district.  The end goal is to help Lily be successful in school.  She's extremely bright, and she has high academic expectations for herself.

Last year was so hard on so many fronts.  And yes - we're still struggling in many ways, Lily won't/can't stay alone, her anxiety is still sky high, her auditory sensory issues are worse, as are her fears about meat contamination.  But her psychosis symptoms occur rarely, and her mania is nearly non-existent.  Best of all, she hasn't required hospitalization since last October.

The transition to a new therapy/psychiatry team is long overdue when I evaluate Lily's level of functionality.  But like Lily's academic expectations, my expectations for therapy and psychiatry are high.  Lily and the rest of us still desperately need to make progress and develop a more workable day to day existence. 

I've left my job so that I can care for her, but will not be able to do that indefinitely.  Nor am I the best candidate to facilitate Lily's progress.  I can do my part on the home front, trying to keep things calm and help her feel safe.  But she needs, or maybe I need her, to be able to function in a world outside our doors.  And yes, the truth is that I very much need to have a life outside our home.  I'm suffering from cabin fever because Lily is still on crutches and hates to be outside.  I'm happiest outside.

So, my hope is that we can help Lily feel capable of attending school, getting out with friends, doing some of the normal things a 14 year old does.  Gain some level of independence.  I'm hoping against hope that's not too much to ask.  Please, please, don't let that be too much to ask.

This is where I have a small concern about the psychologist from the district.  In discussing options for school this fall, she kept going back to homeschooling.  That's not an option for me, not a good option for Lily.  Certainly not the best way for Lily to get a good education.  I understand many amazing parents home school.  Hats off to them.  But I can't do that.  I can't stay home, indoors, isolated, out of work, with an unfinished degree, and do a good job of educating Lily.  I'll crash and burn.

So, here's to hoping Lily's new team, with some calm and smart advocate action on my part, will help her make the progress we all need her to make.  If we fall short here, I'll have to find a way to get some respite time.  I've been fighting that, afraid of setting Lily back if she doesn't feel safe and happy, but I'm teetering on the edge, hanging on because I see relief possibilities with the new resources.

Thursday, July 14, 2011

Frustration, Resentment, Surrender

Just when I think things are good - I get a reality check.  I finished my sunshine post  earlier this evening and went into dinner/evening activities.  Feeding animals, getting the bunny out for his exercise, getting out the separate meals for the vegetarian and non-vegetarians . . .

Lily started too get sort of whiny - I imagine she's feeling frustrated and down, getting a little bored and feeling neglected by friends.  I get that, I can sympathize and problem solve.  We agreed to call friend A and set up a fun day for next week.  But then she started in on her brother.  She doesn't want him to clap, make funny kitty sounds, typical annoying little brother stuff.

OK.  There ideally would be some negotiating, some compromise.  But they're siblings, only 16 months apart in age.  She yells, cries, whines, he responds by doing more of what she doesn't want him to do, neither one listens to me, Lily works herself up into a case of hysterics.  At some point I get him to back down and her to calm down. 

By now I've chased the bunny around because he doesn't want to go back up to his cage, he wants to hang out and play with the cat - and - poop all over my living room.  As I'm working on luring bunny up the stairs with some fresh romaine, Lily is deciding she's hungry again.  About two hours after I've cooked a full meal.  I offer foods easy to get out, fresh peach, instant organic oatmeal.  Nope, she doesn't want those.  Saltines?  She doesn't like them.  She wants stir fried carrots.  It's going on 10:00 PM.  I don't want to stir fry carrots.  I again offer other easy choices.  Lily wants none of them.  Lily is hungry, and wants only stir fried carrots.  If she doesn't get her carrots she's going to fall apart.  Loudly.

I'm trying to hold this boundary.  I've been fetching and cooking and doing for Lily all day.  Since she got up at 8:00 AM.

Lily says she'll cook the carrots herself.  I say fine.  I'm going to get ready for bed.  But Lily can't slice carrots while she's on crutches.  I grudgingly slice carrots and announce I AM GOING TO BED.  Lily crutches her way into the kitchen and asks me to get out the garlic press.  I tell her to get it out herself because  if she can stir fry she can certainly get out the garlic press.  I'm regressing into my own adolescent huff.  Ugly.

Lily gets out the garlic press and tries to manage it while balancing on her crutches.  She does not want to do this.  She wants me to give in.  She cries.  She drools on the floor while crying.  She's very good at this whole routine.  I know, because I was also very good at it once upon a time.  See me, I'm sad, I need someone to care enough about me to do this for me.  If you don't do this, you don't love me enough.

I do realize Lily's mental illness issues influence her distress.  But again, there has to, has to, be a way to hold appropriate boundaries so that her brother and I maintain some sense of sanity.  I've written about this many times.  We keep coming back to it, because when I do try to hold a boundary and I see her falling apart, I do give in.  But not graciously.  With frustration and resentment and then, with remorse that I wasn't gracious and cheerful about meeting needs beyond what my energy level seems able to support.

So I stir fried carrots and complained and scowled.  I vigorously brushed my teeth and made my displeasure known as I got ready for bed.  And I felt awful.

I gave in, and then proceeded to make Lily feel bad about my choice.  Some days I manage with so much more patience.  I love this kid.  And some days I'm the last person she needs in her space.  I would never intentionally do something to hurt her, but my frustration and inability to maintain rational actions on my tired days do hurt her.

I spent a few minutes on my bed, trying to be still and regain a sense of calm.  I went back out to talk to Lily, just to remind her that when I get upset it doesn't mean I don't love her, that I do in fact love her.  I make sure she's settled in and I gently touch her soft brown head before heading back to my room.

Tomorrow morning I'll again ask the universe to give me the strength and patience to be a good parent to Lily and her brother.  I gave up my childhood Catholic prayers many years ago.  My belief system fell apart.  But I have a huge need to reconnect with that part of myself that could find comfort in surrender.

Some Sundays I'm sorely tempted to drive up and park outside a church just to hear the music.  I can't bring myself to walk in and declare a belief I no longer hold.  But I sure don't have any answers now, so why not take comfort where I can find it?

A Good Week!

Considering this is my first official month of retirement, it's been awfully busy.  But we're getting so much done - it's both exhausting and exhilarating.  I have health benefits through the end of the month, so all medical, dental and vision check ups have been in full swing.  Vaccinations, fillings, crowns . . . we're happy to be getting that stuff done.  Strange, I know.

But the best news for now is that I had an intake with the county psychiatrist to push through an evaluation for Lily in connection with her IEP.  This professional was wonderful - insightful, patient, thorough.  She indicated she'd push for an extradited process because she knows we're trying to get Lily's psychiatric care set up for continuity as we change health plans on August 1.  She offered to help.  Offered.  I went a little crazy and got a mocha frappuccino to celebrate on my way home!

Being busy has been a blessing in some ways.  Lily will be on crutches for another 4 weeks, she needs to be kept occupied, and I'm dying to get out of the house.  We've been so busy running off to appointments that we haven't had time to dwell on any of that.    I still have creative/summery things I'd like to do before we're all back in school, but I'll have to be patient about fitting in those fun projects.

Lily is more calm these days, perhaps a result of the introduction of Risperdal as we titrate down on Zyprexa.  She still gets anxious about what school she'll go to this fall, she wants answers now.  Gee, where'd she get that?

What I know for sure, is that in this moment, on this day, we're OK.  I'll take that.

Monday, July 4, 2011

Freedom As Motivator

Well.  We're floundering again.  Lily sprained her foot and is prohibited from putting any weight on said foot for 6 weeks.  We're halfway through, but the restrictions are making all of us bonkers. 

I was able to get a used wheelchair for longer treks as Lily can't manage crutches for more than short distances.  I imagined long walks on the cliffs, museum visits, getting out and about.  But it's out of Lily's comfort zone.  When outdoors, Lily becomes hysterical if she sees bees or other flying insects nearby.

Lily likes shopping.  She's up for a trip to the mall, and loves to go to the market.  Here's the but.  She doesn't like to wheel herself around in her wheelchair.  It's not easy, so I've been pushing the chair when we're out.  Which is mostly okay, unless I also am managing a shopping cart.  I'm a Dr. Seuss push-me-pull-me, live action model.  The other shoppers don't appreciate my predicament.  I'm in their way. 

My crankiness meter is on the upswing.  My bad mood doesn't help Lily.

So it's easier to stay home.  But, here comes another but, I'm lousy at setting healthy boundaries for my kids.  So, I fetch and open doors and turn lights off and on all day and well into the night.  Crutches plus OCD equals a level of disability I'm not prepared for.  I'm awful at this.

It comes down to expectations.  I had expectations of afternoons at the beach, excursions to the public tennis courts and swimming pool, visits to the library and lots of walking.  Notice that most of those activities are outdoors, because I love being outside.  I'm an outie.  Lily is an innie.  These expectations are unrealistic.  I do however, believe in the power of negotiation, and an occasional parent directive for the well being of all.

Positive expectations for Lily's behavior are also in order.  We're working on putting those boundaries in place.  She can't carry something heavy while navigating on crutches, but she can open household doors and turn lights off and on.  She has disinfectant wipes and rubber gloves to manage her germ phobias.  She's trying.

The efforts include modifying behavior towards others.  Lily is always hardest on her younger brother.  I've been consistently stopping her when she's unkind or unreasonable.  She gets pretty angry and needs an outlet, so it's time to get creative again.  Lily is extremely verbal, so a new journal may be in order.  I obviously believe in the power of the written word when the need to vent arises. 

Because she's fourteen, I run the risk of discouraging her by suggesting something, but I don't know how to manage this without being direct.  But this is a great tool, and she can be in complete control of what she expresses on the paper, no limits.  Maybe that will appeal to her because it would be private and uncensored.  Let freedom ring.

Saturday, June 18, 2011

Didn't Lose It

Fighting back after our recent difficulties.  The layers of what goes on are sometimes baffling, but interesting.  Although I'd like clear cut answers, I am beginning to accept that there are none.  Part of that acceptance comes from understanding that I need to forge a middle ground between professional advice, or lack of advice, and my own instincts.  For the past year, I've been too afraid to recognize or follow my instincts.  I'm not a professional, my knowledge about these issues is minimal.  But in the absence of clear directives, we have waffled about and the uncertainty goes against my maternal nature.  Or maybe that's really just my personal need to have a greater level of control, maternal or otherwise.

I'm ineffective when I'm uncertain.  That doesn't serve Lily, or the rest of us.  So I'm making changes.  Pretty big ones.  But the actions feel so good, and I hope they're the right moves; I'm so happy to be deciding something and forging a plan.

Lily is still too unstable to leave alone, and I have been unable to find adequate care in our small city.  We're buried under rising debt.  Having to make daily decisions about calling in to the office because I can't be there undoes me.  My amazing manager knows I won't be in, but I feel the obligation keenly, and not being able to meet my work obligations frustrates me to no end.  It feels like an unending failure.

So I'm taking the pressure off, I'm retiring.  My small cash out will be enough to keep us afloat during this next year.  Having the means to deal with creditors means a great deal to me.  I am determined to meet my obligations.  And by handling those two issues, my feelings about work and debt, I free up energy to deal with Lily's health, my own health, and family relationships.

It's certainly a bit scary to let go of my connection to work and my benefits.  But I have a plan, have been receiving good advice, and believe this can work.  What we've been doing doesn't work anyway.

Control may be an illusion, but it's one I hold dear.  Viva la Control!

Tuesday, May 31, 2011

At What Point Do You Lose Your Mind?

Am I done yet?  I'm sure getting close.  Lily is still very unstable.  Day to day, she can bring up invisible people, auditory or visual hallucinations, periodic anxiety, and always, always, the feeling of spiders on her skin.  She freaks out, forgive the layman term, and wants me to look and make sure there are no spiders there.  Some days are calmer, some are much more distressing.

So, at what point do I lose my mind?  I'm in week four of twenty four - seven care.  I'm getting little sleep.  I don't always shower.  I'm suffering from  a deficiency of adult contact.  No work.  No paycheck. No control.  I really hate that last part.  Control has been a close friend through the challenges of my life.

Do I sound callous yet?  Lily is suffering.  But several people, some of them professionals, have suggested that we examine the possibility of manipulation.  Not that some of what she experiences isn't genuine, I absolutely know there is real suffering going on.  But why does she pull it cheerfully together when we're doing what she wants?  Like shopping for her.  Or setting up a get together with her friends.

And why does she have a rapid deterioration of well being and an uptick in symptoms when we're doing something she doesn't like?  Is this part and parcel of her illness?  On what level?  How can I know that?  When I'm trying to explain to her that we need to approach a situation differently, that I need a short visit with a friend or that I'm going to cook a meal with meat, or watch  or listen to something she hasn't chosen, why does she immediately start having a frightening hallucination?  Does positive motivation truly allay her symptoms, and does any level of stress truly put her at risk of a psychotic episode?

I realize I'm revisiting a topic I've touched on before.  I suppose I'll keep coming back to this until I have a better understanding of what the hell I'm doing.  Or absolutely lose my mind.

Monday, May 23, 2011


Lily is calming down, after a storm of psychosis stew.  Yeah - mixing metaphors again, chalk it up to fatigue.  I hang in while we're in crisis, and then I sort of fold in on myself for a day or two or three.

Lily is still feeling spiders all over her skin at various times throughout the day, but her disorientation is waning, as are the confused thoughts about strange and random things.  She is taking a bit more Zyprexa - not preferable in many ways, but better than experiencing high levels of psychosis.  She hasn't complained about her feet and hands since we reduced the Topomax, and I'm not going to ask because I don't want to remind her and stir up the symptoms.

I still feel so stymied about resources available to help us manage on a more normal level.  I've focused my search on our town, but clearly need to push to find services in neighboring cities.  The services I'm finding in our small city seem to be geared towards probation support for juveniles.  That's not what we need.  As long as I can devote my time, 24 - 7, I can keep Lily safe.  The difficulty with that is that I also need to work, take care of our home, shopping, paperwork, and care for my younger son.  I can't do it all.  How does anyone manage this?

I don't have a way to pay for respite care, if I could find anyone here qualified to provide it.  I know, I'm whining, but I need to find a way to get on an even keel.  For the first few months, I kept thinking we'd get Lily's meds balanced so that she was functioning pretty normally, but 11 months in, we aren't there.

I'm telling you, I'm about ready to call my congressman.  Think that will help?

I suppose I really just need to knuckle down and figure it out.  I've been making calls, but just not to the right folks yet.  Perseverence - perseverence -perseverence.  I can do this.  I can.  Just one more call, and then another, until I find what we need.  It has to be out there.

Sunday, May 15, 2011

A Turn for the Worse

Something's wrong - and I don't know what it is.  Lily is getting worse every day - agitated, burning and itching on hands and feet, and strange thoughts she can't control.  She says they're not hallucinations, but the thoughts are disturbing and upsetting to her.  Tie dyed circles dancing in her head folllowed by tie dyed rain, looking for support for a baby and not being able to find it, all manner of mixed up events.  She's feeling spinning tunnels in her head, dizziness, akathesia.

I'll call Doc D in the morning.  I'm scared.  Is this a downward spiral into psychosis, is it neurological, is it a brain tumor?  I'm afraid to sleep, I want to be right there if she needs me again.

Update - Monday, 8:45 AM

Of course it's not a brain tumor - that was my dark of night mother worry.  I am worried about her.  She got up and was still confused and experiencing thoughts about Invisible People.  She's also confused about small tasks, like how to put berries in a bowl for breakfast.  She had a rough night, anxiety, spinning feeling in her head, akathesia.  I've left a message for Doc D.

Friday, May 13, 2011

Ch ch ch changes . . .

Well there is change, and then there is change.  In my last post, I ended saying it was time for a change.  Be careful what you wish for.  We really did, do, need a change, but the changes we experienced this week were not what I had in mind.

In a session with Doc D last week I expressed my desires for therapy and/or med changes to help Lily become more functional in the real world.  We agreed to pursue a more focused approach to dealing with her OCD issues, including an effort to modify her meds.  Lily wanted to try Abilify again, becuse she wants to get off the Zyprexa due to the appetite/weight gain issues.  My vote is for a moderate increase in the Lamictal, but we agreed to honor Lily's request and re-introduce Abilify.

On a Wednesday evening we added  5 mg of Abilify to her med regimen.  Over the next 4 days, Lily became increasingly more agitated, until the psychosis returned and blew us out of the water on Monday.  Lily fought with and was frightened of Invisible People all day.  She wanted to flee the house because the IP were pushing a nearby industrial building into out townhome and she was afraid we'd get crushed.  What can sound like a comedy sketch is so unfunny in real life.

After a phone conversation with Doc D, we agreed to discontinue the Abilify.  During the last few days, Lily's psychosis has lessened as the med has gradually left her system.  We've used more Ativan than usual, and resorted to Klonopin one day, but she is improving.  She is having some discomfort in her feet and hands, and we don't know if that's related to any of the events of the week.  It could just be one more somatic issue, but it is adding to a stressful week.

I'm having a hard time letting go of my illusions about normalcy.  I get so tired of hearing Lily's many complaints, and then I'm ashamed because I think about how horrible it all is for her.  We've made progress, Lily is better than she was last fall, but I want so much more, for all of us.  I want 30 minutes to take a walk in the sun, an afternoon at the beach, the freedom to go to a restaurant for dinner, with no drama.

I want to listen to a song without having Lily flip out because she doesn't like the beat, or she hears "ck" words.  I want to be able to be in the yard without Lily yelling every couple of minutes because she wants me inside with her.  I want, I want, I want . . .

I know that Lily wants too, different things than I do.  I'd wish her OCD stuff away.  Lily would like to have the anxiety inducing stimulus disappear.  No meat, no "ck" words, no typing sounds, no bees, no dirty hands on her younger brother, no sounds from her younger brother.

I know Lily would love to have peace, positive interactions with family and friends, physical comfort, more laughter.

I know it's my job to get her enough help to be able to participate more fully and comfortably in daily life.  It also happens to be my job to get in 20 hours a week at my job, provide healthy physical and emotional care for her younger brother, get the bills paid, and maintain relationships with my other wonderful children, who aren't children any longer.  But they're no less important.  Less needy, but not without need.  Even grown kids need mom, thank goodness.

So clearly, I'm not at peace about where we are in this process.  But I'm trying.  Just like Lily.

Monday, April 25, 2011

Another Wakeup Call; Hello, is anybody home?

Hello.  Queen of denial here.  How many ways can I spin the incoming data so that it looks how I want it to?  Lily has returned to school, and I have bent myself into a super pretzel, making accommodations and demanding accommodations from the school in order to try to keep Lily stable.  Some of that was perfectly reasonable.  But perhaps not so realistic.

More damaging is that I've kept Lily so sheltered that other people, even people we love, have a hard time being around us.  Lily freaks out about so many things, sounds, smells, touch, proximity to any animal product.  And her reactions are loud and emotional.  No one can be normal around Lily, we're all on guard lest we upset her.  And I've allowed and encouraged that.  Because I don't want her institutionalized.

So her fragile friendships are suffering, and our family relationships are suffering as well.  Everything in our life is subject to the Lily question.  Will this upset Lily?  I've written about some of these limitations before, and I've addressed our need to live a more normal life, with appropriate boundaries.  But as I've tried to support Lily's transition into school and her social world, I've given her lots of slack.  In retrospect, that has been damaging.

So we had a heart to heart today.  We can't go on like this.  She has to try to learn to live in the real world, or she has to live in an environment more regulated than I can provide at home.  It's not just about comfort level or relationships, I have to be able to work a regular schedule, and I'd dearly love to return to school to finish my five classes to graduate.

I have to believe Lily can function better than she is now.  That she can participate in cognitive behavioral therapy to more successfully handle her OCD issues, and that she will allow us to adjust her meds to help her feel calmer, more in control.  It's time for change again.

Monday, March 21, 2011

Step by Step

Things have been considerably better around our house recently.  I hate to even acknowledge that, on the off chance old superstitions are true and I'm tempting the fates, but it's true.  So I suppose I feel it's even more important to take note of our progress.

Lily is back in school full time.  Public middle school, 6 classes.  And it's going really well.  Even better, she's doing things with a nice group of friends.  I'm driving a lot, but I'd drive all day to facilitate those friendships.  I'm so happy!

I've been able to get in a lot of work hours.  I owe so much to my managers.  They really stood by me and protected my job and benefits far longer than many bosses would.  They're wonderful people and have made our journey so much more manageable.

We still face plenty of struggles at home.  I suspect Lily is working so hard to hold it together at school that she's pretty stressed by the time she comes home.  That's when she acts out, yells, and has some borderline meltdowns.  I'm giving her lots of space to work through those emotions, but calmly let her know when she needs to back off and apologize.  Sometimes that works.

She'll be fourteen in less than 2 weeks.  It's a reminder that she's growing up fast.  But I tend to think she'll be with me a long time.

Wednesday, March 2, 2011

Yeah But . . .

Still on a huge learning curve here.  Lily's psychiatrist was out for a week, but available by phone for emergencies.  But we didn't know any of that.  Lily needed a refill for her Zyprexa, and I phoned it in to the pharmacy.  They faxed a refill request to our pdoc, who didn't get the fax because she was off.  I finally phoned at the end of the week and got things figured out, but meanwhile . . . I screwed up Lily's meds.  I had 5 mg tablets of the Zyprexa, and gave Lily 3 each night for 4 days, until I realized she should be on 20 mg,  or four pills. 

That wasn't bad enough.  We also ran out of Intuniv.  I thought, no big deal, it's a small dose of a mild ADHD med and we're set to see the pdoc next week, so we'll get a refill then.  Wrong.  Lily experienced increasingly higher levels of mania and anxiety and went into a full on panic attack by mid week.  We ended up in urgent care (not ER thank God!) and her heart rate was in the 150's and 160's.  She hyperventilated, and was finally calmed with a Xanax.  We also administered Toprol to bring her heart rate down and we were able to go home.

And really, it was my fault.  No matter that this was the first time I've messed up her meds, she wouldn't have had to go through any of it if I'd been on the ball.  My lesson is, no med is too insiginificant in this equation, they all matter.

So we managed through it and learned the lesson, and had Lily's IEP meeting this week.  She has good support at school and I appreciate the team involved, but I did feel the undercurrent of an adversarial attitude.  Much was made of the fact that Lily's attendance has been poor.  She was out all fall semester because she was too fragile to attend, and she did have a truly miserable time of it last year.  But I'm also the  mother of another kid at the school who has perfect attendance and straight A's.  So why do I feel like they were censoring my parenting?  Was it really about my own feelings of inadequacy, should I just blow it off and move on?  Probably.  What's important is that Lily will get some much needed support on campus, and I may get to return to my regular work schedule. (and maybe be able to pay some bills . . . )  But it nags at me that the principal, et al, don't understand or acknowledge how hard I've worked to help my daughter.

Time to get over the need to please.  I have more important things to handle.

Friday, February 11, 2011

Home is Safe

I've had a blissfully quiet morning, a gift in a hectic life, and a great time for reflection.  The monster in the room these past several months is my fear that I haven't been a good enough mother to keep Lily safe.  I have an uber case of mother's guilt - even if I don't exactly know what for.

Was I too impatient with Lily?  Have I expected too much?  Did I push too hard?  Did I cause and/or make worse her mental illness?  Am I blowing it on a daily basis even as I scramble to keep it together and help Lily and my son get through each day?  Should I expect more, less, nothing at all?  Am I asking all the right professionals all the right questions?  Am I documenting Lily's daily symptoms and meds adequately?  Should I also be tracking what she eats, how she sleeps and what she's feeling in every moment?  Can I just video tape it all?

I make myself that much more crazed.  The questions don't stop, my head is constantly spinning.

And I need a moment, this moment of quiet, to try to objectively evaluate what I'm doing, what I've been doing all this time.

To my surprise, I can see that I've managed the one thing that's always been most important to me.  We're together, and we're safe.

I grew up in an unsafe household.  I didn't want that for my kids.  I've done everything in my power to protect my kids.  I've been an overprotective mom for almost 32 years now.  I'm not saying that's the best parenting practice, but it was a goal born of my experience, it was what I knew to do.

So while my blog clearly indicates my distress and uncertainty during this scary time, I'm finding a bit of compassion for myself and my efforts.  We're struggling financially and emotionally, but with a little help, I'm successfully providing shelter and basic necessities, along with the best medical and mental health care I can find, for Lily and her brother.  I probably - absolutely - have made mistakes during the past 8 months, hell, during the past 32 years, that impact my kids.  But we're here - we're safe, in our home. 

We're together, and we're safe.  Home is safe.

Monday, February 7, 2011

grumpy grumpy mom

Lily did great her first week at school, and really, really well the second week!  Yay yay yay!!!

So why am I so grumpy?  She's making progress, and I'm back at work for a few hours a week - which I'm thrilled about.  The difficulty is that Lily has had a few hallucinations over the past week and a half, maybe due to the stress.  But she's also getting more aggressive with her brother, bordering on violence with definite physical threats, and that worries me.

I spend my nights imagining horrible scenarios, trying to figure out the logistics, if A happens then how do I handle B, and - oh my goodness, the worries escalate.  So, I'm borrowing trouble, but also trying not to get caught completely off guard like I have been before.

Our meeting with Dr. Chang at Stanford was so great!  He's brilliant and personable, and Lily spent an hour with him, disclosing things she hasn't brought up before.  So in my book, he's amazing.  On the other hand, it's becoming more clear that we are probably not talking only bipolar disorder at this point.  Continued psychosis, including sensory hallucinations like spiders crawling on her skin, and new delusions (super powers) point to a darker disorder and I find that scary.

I need to sort through my waning expectation that things will return to normal - not that I haven't had a clue, but I do tend to hold on to my unrealistic expectations a tad too long.  I suppose it's because I long for a return to an innocence we won't ever have again.  So yes, I've heard we'll have a new normal, and I am often able to focus on our good moments, knowing that they're precious in a way I didn't understand even a couple of years ago.

But I'm not in the positive and accepting place that I see in the writing of so many incredible special needs parent blogs.  Those lovely folks just humble me in their grace and perseverance.  I can only hope it's an example I'll eventually come to emulate.

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.