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.

1 comment:

  1. Oh honey, I'm with you in thoughts and spirit. I know you will advocate for her to get all that she needs. You really are a loving and wise Mamma who will do anything for her children, including banging down the doors to appropriate treatment if need be. You know homeschooling wouldn't be the best for either of you and the school can't push services off just because that is where she has been. They are REQUIRED to provide the services she needs once your team can narrow down what they are. (((((hugs)))))