Sunday, 4 December 2016






Katie had a rough morning.  She banged up her face pretty good.  I'm not sure what happened.  I've emailed her team leader because the staff who was explaining to me what happened has a very heavy accent and to be honest I'm not sure what he said.  I know Katie hurts herself.  She scratched her roommate while her roommate was still in bed this morning.  I know Katie feels a lot of remorse when she hurts people and I know that she will hurt herself when she's upset.

What I don't know is how to stop this.  It's not getting better, it just keep getting worse.  I know part of it is communication, or lack of it.  Part of it is her staff not knowing sign language.  Part of it is Katie not knowing how to express what she feels.  Her feelings usually come out in actions.  Part of it is anxiety.  Part of it is a fucking cape and wheelchair to protect the people around her.  Part of it is a brain that can't cope and is stuck in permanent fight or flight mode. 

I don't know how to help her and it breaks my heart.

11 comments:

  1. deb, i'm so sorry. i wish there was something i could say or do to make this better.
    is katie's community residence well regarded and well staffed and well trained ? i guess that's the first question.

    my heart hurts for you and katie. it matters how deeply you love her.
    love
    kj

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    1. The agency that cares for Katie is well staffed. Katie has two caregivers just for her right now. The problem is that the job doesn't pay well so the best people move on.

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  2. I am wondering why you can't try medical marijuana. I have several online Canadian friends who are using it with great success for their children with special healthcare needs. I can put you in touch with them, if you'd like.

    I feel so much sorrow for you and for Katie -- this is, indeed, heartbreaking. It does sound like Katie needs some intervention for communication. Is there no program or therapist that could perhaps design a communication system or augmentive technology for her? Forgive me if I'm suggesting silly things.

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    1. It's not silly at all Elizabeth and yes they are both good suggestions. Sometimes I just feel so overwhelmed I don't know where to start.

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  3. I have no words and I can't even imagine how hard it must be for you not to be able to take this hurt away from your daughter. You and your family are in my prayers and I am sending virtual {{{hugs}}}

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  4. I just cannot even imagine the level of frustration she must feel. So sorry.

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  5. This is heartbreaking - to feel trapped, both of you. The feeling of being overwhelmed stops our brains from finding answers and solutions, so I am very glad that Elizabeth is here to help you.
    I'll carry a bit of your heavy heart today and hope that helps.

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  6. You and Katie are both in an extremely difficult. Answers are so hard to find when you are not even sure of the questions.

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  7. Oh my goodness, that is heart-breaking. I can't imagine how helpless you must feel. I'm so sorry.

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  8. I'm so sorry. This has got to be heartbreaking. My suggestion - for what it's worth - is to print out a guide book - photos with words - of sign languages for the caregivers. I totally understand when you say the good ones leave because of poor pay. I know. At least as caregivers cycle in, they can look at the guidebook - big photos with the words underneath - for signs that are key to communicating with her. Also, does music or sounds of any kind - running river, ocean waves - help her calm? If you make the guidebook, you can put the pages in those plastic sheet protectors. I hope the Big Guy is giving you big hugs and that you will find some small and workable things that try that actually work and bring some relief. You are stellar in your willingness to hang in there. Much love.

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