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.