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.


  1. Your Blog is inspirational, truly!
    I see so much of me in your thoughts, what makes us tick is eeirly simular. Please, please take care of yourself, for without you Lily would have very few options. Re-read what you have written, you have the strength and you know what to do. Check out this site which I found on another blogger's site for a summer camp.

  2. Thanks so much V - we're working hard on new options. Your words of support over the weekend gave me some much needed perspective. I'll look at the summer camp website.

  3. That has got to be so difficult. I struggle with what "I want" for my kids vs. "what they need" at the time. And I imagine for you it is more than just multiplied. Hang in there!
    Big hugs!

  4. Honey, I want to say, "Good for you" for having the heart to heart with Lilly regarding boundaries and finding that means for her to adapt to leaving more functionally in all environments, not just the one's catering to her.... but I know exactly where you are coming from and we are not there yet either. There is NO living "normally" here with O either, as we all have to either live with her wrath (amidst the consequences I give her for such) or monitor everything we do and say and whatever around her. It sucks!

    She has such a tremendous need to control her environment in every way and has such a hard time dealing with anyone altering things, because they are just going about their business, that it is maddening. I feel like I am constantly mediating her interactions with others as a result and she feels I am constantly punishing her for the things that others do and that I hate her. It is sooooo hard.

    She is in individual therapy and we are constantly tweeking the meds it seems. The clinical trial is over this Wed. so I have to give quite the update on that whole thing as well....

    I wish you peace and grace my dear! (((hugs)))


  5. Thanks Mel - I'm grateful for your understanding and insight. We've had an especially tough week, due to an unfortunate med change. I'll blog about this soon.

    Did the clinical trial help? Hoping you have a calm week.