Friday, 30 March 2018



I went to a meeting Wednesday with the managers of the agency that provide care for Katie.  It wasn't good.  They have provided care for Katie for the past seven years.  I trust them.  They really do care about Katie's wellbeing.

Last year this time, Katie moved from a rental unit into a home that the agency owns.  There had been many noise complaints in the rental town house because of Katie and the agency didn't have much choice.  So Katie moved into a half duplex with her old roommate and one new roommate.  

Things have not gone well.  Katie attacks her new roommate who is in a wheelchair and this woman's mother has made complaints about Katie, and rightly so.  To be honest, I didn't know it was an issue as I wasn't told.

The cannabis worked for awhile but when I switched vendors, it didn't seem to work as well.  And it only helped a little.  I was hoping it would be a miracle drug.  When Katie attacked me two weeks ago I asked them to increase the cannabis oil dose which just made things worse apparently.

So at the meeting Wednesday, the managers suggested that another agency could better care for Katie, at which point I promptly burst into tears.  They don't want to do this but feel like they have no options.  Staff are afraid of Katie and don't want to work with her which means higher staff turnover which causes her more anxiety which increases her aggression, which causes a downward spiral in her behavior. The agency has two other women in that home that they are responsible for and Katie is attacking them. When Katie attacks them she gets upset and her behavior again spirals downward.

Katie's aggression started when she turned eleven.  It has only escalated over the years.  Nothing has really helped.  We've tried many different medications, behavioral therapy, animal therapy, consequences, positive reinforcement, nothing has worked.  Katie now abuses herself as well, smashing her head against walls and floors and hitting her face with her hands.  Attacks on others have worsened over time, in part because Katie is much bigger now.  She is 5'7" and weighs 150lbs.  When she grabs your hair, she drops to the ground and takes you with her.  While Katie expresses regret over her behaviors, she also laughs too.  Katie is not stupid.  She is mentally handicapped but definitely not stupid.  She knows what she is doing.  It's part of how she expresses herself but it is also how she manipulates her environment.

I have always resisted using more medication with Katie.  She twinkles and I never wanted to dim that twinkle in her eye.  Until now.  

The options for Katie are much more medication where she lives now, enough to stop the aggression and the twinkle sadly.  If she moves to another place with this agency, it will be a rental and she will be alone with staff which increases the risk of abuse on both ends and the risk of noise complaints, so she would need to be more heavily medicated.  If another agency cared for her, it would be a change of everything in her life.  Her behavior would deteriorate again and she would need to be more heavily medicated.  If she ended up in Alberta Hospital on a psych unit, everything would change and she would be more heavily medicated.  All paths lead to the same place as far as I can see.

So yesterday I took her to see a doctor and explained our dilemma.  I told her I wanted to double Katie's dose of Nozinan.  I had researched the dose, the side effects, the daily limit of the drug, the side effects and decided this was the best option.  The doctor wanted time to do her own research and I agreed that was best.  She came back awhile later and agreed to double the dose.

So now we wait and see.

It's been almost twenty-six years since she was born and still I grieve for her.  I wanted Katie to grow up as normal as possible but I think what I wanted even more was to have a normal daughter.  I have resisted have a disabled daughter all these years.  I want her to look normal.  I want her to live normally.  I want her to be normal.  And I wonder if all these years and trials and shit have been about me not accepting her as she is, not seeing her as she truly is which is a danger to herself and others.  Because really, how can my sweet little baby girl be dangerous?


And in reality, even way back when this photo was taken, Katie could and did hurt people, including myself.

She lives in my heart this girl.  It's so hard to accept reality when I only want the goodness in her to shine through.  But this is my problem and now I need to do what is best for her, even if means dimming the light in her.

9 comments:

  1. My heart is breaking for you both. I trust your judgement.

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  2. This just aches. I cannot even imagine...cannot walk in your shoes. But I am in awe of you and how you are Katies champion. Hugs to you both.

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  3. It sounds to me as if you have made the best decision possible and that your thinking is very clear here. May this be the solution which works for Katie best.
    I am so sorry you have to make such a decision in the first place.

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  4. My heart is heavy for you and all you have been through, all the decisions that break you a little more each time. Wanting your beloved child to be normal is, well, normal. All your decisions have been made because of love.
    Holding your hands.

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  5. By taking care of Katie by doing what you decide is best for her, you are also taking care of yourself and all others she comes in contact with. Maybe it will be one of those hard loving decisions where everyone involved will benefit. That is my hope in this difficult situation with no easy answers.

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  6. I just ache for you and for Katie. There is truly no good answer here. I'm holding you both in my heart.

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  7. You have thought this through from all angles, and though the decision is hard, i believe you are doing the best most loving thing you can. trust yourself, dear lily. sending love and angels to you and katie.

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  8. It is very hard to come to terms with what "is". It sounds like this is Katie's normal. Please don't blame yourself. You did what mother's do, and you now have to do what mother's do again. It's all hard, my friend.
    There is peace in surrender. Hold it up in your hands and surrender it.
    Love to you,
    Liv

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  9. Sending you a hug for your post that you deleted. I’m so sorry, LC. Holidays are especially stingy, aren’t they?

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