Cuts to My Day Activities Hours

And again I really didn’t get to write as much as I’d like to have done. The past week was quite busy. I had my first session of movement therapy on Tuesday and a meeting with my nurse on Thursday. Actually, I would’ve had a session with my CPN, but she’s off sick. I was so grateful that my nurse asked whether I wanted an appointment with her instead, as I really needed to talk.

I’ve not been doing well lately. I’m very irritable and easily overloaded. I switch a lot between being completely in my “rational mind” and feeling terribly emotional. I try to use my DBT skills, of course. Not that I’ve come far on the formal DBT course I do with my CPN, but I’ve been doing it by myself. I do an okay job when I’m not overwhelmed, but once overwhelmed, all my skills go out the window.

I mostly find that I can’t handle this huge, gaping split between my (verbal) IQ and my emotional, practical and behavioral functioning. At day activities, this is becoming more and more problematic. The staff are telling me that my irritability upsets the other clients, who are “like a baby” and can’t understand. I tell them that I don’t understand stuff myself, either, but because I’m not intellectually disabled, I should somehow be able to be more capable.

Because I’m too much of a handful, my day activities are being reduced. I won’t get additional home support in exchange. This upsets me greatly. It feels as though, when I need more help the most, I’m punished for it by getting less. Again, the main reason is my IQ, because other people with significant behavioral challenges at my day activities, get more care.

“We don’t do psychiatry.” That’s my day activities staff’s reasoning for cutting my hours when I’m too irritable. The other staff even mentioned finding me another place to go. I don’t know where. I mean, day activities for mentally ill people cater mostly to those with psychotic disorders. I have experience with that and I run into the same crap I get here there. After all, people with schizophrenia can’t help reacting to their voices either.

For clarity’s sake, I’m not saying that people with severe intellectual disabilities or those with actively psychotic schizophrenia should just be able to hold it togehter. I know they can’t, but I can’t always hold it together either.

I know my staff try their best. The staff who decided to cut my day activities hours, got angry when I told her they’re expecting too much out of me. I know she’s never worked with a person of at least average intelligence who still has signiificant sensory issues and challenging behavior. I know the manager probably told her to prioritize her main focus group, ie. those with severe intellectual disabilities. It’s interesting that she refers to the other clients as “the clients”, not “the other clients”, when she talks to me.

However, I can’t keep from being reminded of all the great lengths to which the staff go to accommodate their other clients with challenging behavior. For one person, a staff goes to his group home to provide him day activities one-on-one. Two at my group get several hours of one-on-one too. I don’t ask for that, but I don’t ask for the other extreme, ie. being cut off my hours, either.

One thought on “Cuts to My Day Activities Hours

  1. Hi Astrid:

    hope your CPN is feeling better soon. Unless it is a longer-term thing?

    We all want to be cut the right amount of slack – not underestimated or overestimated. And when this doesn’t happen we get overwhelmed.

    I believe the nurses are underestimating the irritability which babies understand and absorb each day especially from their key caregivers and their peers.

    Yes – there is a difference between “can’t understand” and “doesn’t understand”.

    The capability doesn’t have anything to do with intellect. After all, people with severe intellectual disabilities understand things you can’t and don’t.

    That is a big gap in the Dutch services – psychiatric services mostly doing “psychotic” disorders. I suppose psychological services do neurotic and borderline as well? And BPD does have “transient psychotic states”.

    And, again, this is her first go-round.

    “However, I can’t keep from being reminded of all the great lengths to which the staff go to accommodate their other clients with challenging behavior. For one person, a staff goes to his group home to provide him day activities one-on-one. Two at my group get several hours of one-on-one too. I don’t ask for that, but I don’t ask for the other extreme, ie. being cut off my hours, either.”

    Grrr! And I would be roaring too. Creates jealousy and envy and feelings of abandonment. And that constant sense of punishment and of being/doing wrong for existing and daring to have needs and wants beyond the system and what it and its individuals can provide.

    Liked by 1 person

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