08/22/2024
Had anyone witnessed this morning’s activities, I would imagine it would not have appeared too challenging.
Yet, had anyone without a deep understanding of my daughter's needs provided the care, the outcome would have very likely included property destruction, more self-injury, injury to the caregiver, and elopement. Any of those can quickly result in police interaction, hospital trips, and the like.
I was not frustrated, concerned, or scared. I don't mind providing her care. I am grateful to know how to meet her needs. I would do it forever if I could.
But we aren't here forever, are we?
I refuse to turn her over to a CLS group home to share a room with a stranger and live with other strangers and have strange staff revolving in and out.
I will never believe staff reading a set of papers could possibly have the knowledge to provide her nuanced care in a manner to keep her (and themselves) safe.
Her need for silence and space and no movement in the room when overwhelmed certainly sounds like it might clash with roommates, housemates, and staff all around.
It takes her a long time to accept new things, big and small. New staff historically has needed a couple months to build rapport. Daily common transitions may take hours sometimes. Familiarity is extremely important for her feeling of security.
Person-centered support for this person is unquestionably living here. CLS homes may work great for thousands of others. I have no judgment against those who choose that setting. A group home is not an appropriate placement for this individual. Period.
So, I am pushing her waiver to provide a fully staffed team of supports for waken hours in our home. The issue isn't the budget. They agree to provide her an annual budget well above what I'm asking for, but only if I place her in one of their CLS homes. They say I'm being “uncooperative.”
I can't stress enough how much I recommend all parents be “uncooperative” with unacceptable coercion to place our children in harm's way. I'll wear that term as a badge of honor. They can call me whatever they want.
This morning actually involved countless microdecisions made with pinpoint accuracy in both option and timing.
- Starting with extra time before I knew I'd need it.
- Attempts to move to next task, her resistance, immediately backing off and coming back after some time in a new way.
- Breaking down tasks into easier and smaller bits.
- Giving more time (again and again).
- Not reacting to some displays of aggression (voice raised, scripted speech, stomped foot, etc.)
- Redirecting some displays of aggression with my own contrasted tone of urgency, attention, positivity, etc.
- Waiting some more.
- Intervening in self-injury.
- Two layers of clothing on her arms to protect her skin from her biting them.
- Calculated sensory inputs.
So much more!
That's just the safety and supervision support, also, not including the skilled care of ADL assistance, medication administration. etc that would have needed to be provided by a CNA and nurse.
It would have appeared smooth and uneventful to other eyes only because she was properly supported.
She never made physical contact with me with aggression. She did not break any property. She did not break her own skin.
She loved the dress she wore yesterday. She loved it so much that she declined a bath last night, as she did not want to take it off. She slept in it. She was wet when I went to wake her this morning.
Staying in that dress today would not be an option. She needed a lot of support and time to process parting with the dress temporarily for it to be washed.
By the first photo, I had convinced her to get out of bed and sit next to (not on) the couch. She was not ready to go near the bathroom, as she knows that's also where she gets her clothes changed.
I used the time I gave her to wait to strip and clean her bed, throw the linens in the wash on a sanitizing cycle, and redress her bed with fresh linens.
Now going back to bed was on the table, but first, dry clothes. Still I had to wait.
That's all this was about. She was not trying to make my day difficult. She was not trying to herself be difficult. She had no intent to harm me despite the raised voice at times and scripted displays. She had no intent to harm herself despite repeatedly biting and slapping her arms. It's not what it seems on the surface.
She cognitively cannot distinguish between 2 hours and forever. Time is hard. She cannot say, “I'm feeling very overwhelmed right now and afraid I will never see this dress again. I need space. I need time. I need choices. I need kindness. I need comforted. I need autonomy.”
All the right decisions, responses, tones, body posture, and more meant she moved through all needed tasks this morning on time and happily waved bye to me as she got on the bus this morning, completely recovered from her grief about the dress and excited to be heading to see friends at school.
She never articulated anything about the dress. She required a person able to understand the real cause of the symptoms of behaviors in order to provide effective support.
I won't be here forever, as much as I want to be. I am not pushing for staffing because I want freedom. I am pushing for staffing so I can help them learn all the nuanced parts of her care. I am pushing for a solution that will provide her sustainable stability that can outlast my own time on this earth. I am pushing to build a team around her that has the time to get to know who she really is - all the silly, fun, kind, loving, curious parts of her - so that when she has hard moments, they too feel grateful to help her work though them instead of misjudging those moments as intent to harm herself or others.
I do use my words (lots of them…clearly), and yet the waiver administers misjudge my stance as me just being difficult. I am supposed to trust they will provide *her* compassionate appropriate care 24//7/365 outside my view if I just place her in their CLS group homes?
I think not.
Truly,
Uncooperative Mother
