Agree to Disagree

Prologue: two weeks ago, it was decided that, for two weeks, I would not be allowed to attend my day activities center in the afternoons. The reason was three new clients would be joining us and that would mean there’d be less support for me – at least while they get used to the day center. This made me quite unquiet. I wrote about this for Five-Minute Friday last week too, struggling to write a long enough, contextual enough post to be search engine-friendly within five minutes. Then I saw that people did prologues and epilogues to their posts that apparently do not count towards your five minutes of wrting time. So I decided to do this too. Here is my actual piece.

Yesterday, my staff asked me if I’d been feeling calmer now that my day activities hours were cut. I didn’t respond initially. Later, I did, assuming she had said, not asked, that I was calmer now.

I told her I feel awful each afternoon. Of course, the group is quieter without me, so I could see where she’d be coming from if she wanted to keep me out of day activities longer. I didn’t assume she had my best interest in mind – or at least the manager, who decided on these matters, didn’t. I’m not intellectually disabled, so I’m not the day center’s primary target population. As such, if there’s a disruption in the group that involves me, I’m the one who is out.

Indeed, today, I was informed that my day activities hours will remain as they were for the past few weeks. It was all in my best interest, the staff tried to say. Well, agree to disagree.

Epilogue: I was quite distressed by this whole thing during the day. Then I remembered someone’s comment on my FMF post from last week, that God never closes a door without opening a window. On Thursday, I will have a meeting with my day activities and home support staff, my community psychiatric nurse and the local authority social consultant. I hope this meeting will yield some positive results.

Linking up with Five-Minute Friday again.

8 thoughts on “Agree to Disagree

  1. Hi Astrid – I’m next door to you (#45) in the FMF linkup today. Both my kids (19 and 15) are on the autism spectrum. Wait … have I commented on your blog before? I think I may have. I’m sorry you felt not quite heard at the day program. It is hard when those “in charge” see things differently. I appreciate your point at the end about God opening a window in this situation, and I hope the meeting is helpful.

    By the way, I think you should write your five-minute post however you like! I usually set up my image and my introduction to the FMF linkup first, then I start to write – and if I go over 5 minutes I don’t beat myself up about it. It’s good to have the “rules” if we need them, but they CAN be broken!

    Liked by 1 person

  2. I am sorry Astrid you feel unheard by them. As their task is to support people with special needs, their attitude towards you should be more helpful, I think, and they should at least help you find an alternative if they can’t support you by themselves. Hope the meeting will make things look better.

    Liked by 1 person

  3. How terribly unfair! It’s so common in Dutch care.. You’re too smart for them so you’re too difficult. And you have to behave more professionally than they do. Happens a lot. You’re not allowed to have issues, to have behavioral issues (actually being angry seems like a normal response when people do unjustice to you). But the staff does lash out and has behavioral issues. I wish you could go somewhere else, because clearly they don’t care about you and don’t have your best interest in mind. They just want to do their jobs as lazy as possible. But you probably aren’t able of going somehwere else or the same thing would happen.

    Can you write an e-mail to explain? Don’t know if it will help, but at least you have proof that they know how you feel about this and how the staff treated you. They shiuld give you one-on-one though.

    Liked by 1 person

    1. Thanks so much. Well, my staff, as in the direct support staff, are okay. They try to help me but are at their wit’s end. The manager made the decision and I think I should’ve seen this coming. At our meetng with him in October, he said more or less “We’re a place for intellectually disabled people, we have taken you in but if you need more care, too bad, we can’t do that”. I think though it’s rather ironic, since there are lots of people with an intellectual disability *and* severely disruptive behaviors (like more severe than mine) and this manager goes to great lengths to get them extra care (like for one, one-on-one at his home throughout the day).


  4. No, don’t assume they have your best interest in mind unless they have actively shown this or offered an alternative you can all live with.

    Good luck with the Thursday meeting, Astrid.

    I notice that Emilia and Mel have made points up above that I would have said. Mel, your revelations about the Dutch system and how it treats intelligent vulnerable people. And of course anger is a natural response to injustice!

    And that whole “common denominator” thing.

    Jeannie – thank you for the #fiveminutefriday tips.

    Liked by 1 person

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