Why I cancelled respite and what I learned

I don't think it was the fault of the staff, I don't think it was lack of information, I don't think it was the place where she stayed. But last time that Smiley came home from respite she was clearly traumatised. And I don't say that lightly. She was only there for one night. Lots of preparations had been made, yet something went badly wrong.

She came home early on Friday morning. She wasn't her usual animated self, so I assumed that she hadn't slept well, which often happens in respite.  But she just got flatter and flatter. There were no smiles, no interest in anything, and she even bit me, which she almost never does. She also refused to eat or drink, until in desperation I gave her a large glass of chocolate milk late afternoon. Luckily that was impossible to resist. I was desperately upset for her and guilty for sending her to respite, but when it works it's wonderful for her and for us!

More meetings with her service provider followed, and it was decided to try her in respite again for a few hours and not overnight.  She was well-prepared with a a specially written social story and she seemed okay when I collected her in the evening.


I'd enjoyed the break, even though I spent most of the time catching up with housework.  But when she came home, she badly needed drinks and then the toilet. Alarm bells were starting to ring. Smiley is partly toilet trained, unusual in someone so disabled, or so I've been told. Because of that, it seems almost impossible to find a toileting sling that works for her and can be used in school and the respite house: her occupational therapy department have been searching for several years for something suitable and there are regular appointments to try out their latest find.

She can't tell me in words how she feels about not being offered the toilet, but she can show me.

One day soon afterwards I was sitting with a happy Smiley bonding over Frozen and catching up on emails. The next minute she was was crying desperately.  I asked her what was wrong and she carried on crying.  I asked her if she needed to use the toilet, and she looked towards the wet room.  So it was Mum to the rescue with the hoist and the sliding doors and the sling and clicking the safety bar into place and then the sounds of giggly relief.

And I realised then that respite is not going to work until someone can find a new toileting sling for her, and help staff to use it.

I never want my daughter to feel that she has to go on hunger strike to let me know how much something has upset her. But knowing that she has a way to communicate her distress is useful too. It's a lesson to remember as I look at different options for adult services, because I will use this memory to assess which ones she likes. And which ones upset her. And it doesn't matter how much pressure is put on me, I will NOT accept a service for my daughter that she finds traumatic.



13 comments:

  1. I hope that I haven't shared this story before: I can't find it anyway! But the lesson learned is important to remember.

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  2. I take it you do have a toileting sling at home that works? Can you not get another of the same? Or is it not compatible with whatever they have at respite? Still, it shouldn't be such a hardship for them to get her onto the toilet; she cannot be the only partly toilet-trained disabled girl or woman they have ever come across.

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    1. Thanks for your comment Matthew: I don't know if the toileting sling problem is the only issue that she has with respite.

      I do have a toileting sling at home, but it is fraying and too small according to the OTs and it is no longer available to buy. New slings of a similar shape are now made of a different and much more slippery fabric so she tends to slide through them because she has poor trunk control.

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  3. Poor Smiley and poor you. You're amazing, Smiley is lucky to have such a great mum. I hope this situation gets rectified so respite can actually be respite. Xx

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    1. Sadly it's probably too late for respite now as she will no longer be eligible for children's respite from this summer xx

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  4. Poor little pet. Great she could communicate in her own way what was wrong. Very worrying that they don't have proper equipment to help her go to the toilet, I hope you guys find something soon x

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    1. I am glad that she can find some way to communicate x

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  5. What a shame it didn't work though. And what a shame they didn't think to put toilet arrangements near the top of the list. None of us expect to visit places and not be able to use the toilet, so why should Smiley?

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    1. She's just a name on a list to them I think!

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  6. You are such an amazing mum. It's amazing that you are so tuned in to recognise how she is feeling. That social story idea is a brilliant idea. Hope you find a solution for the sling. xxx

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    1. Luckily she is very clear about her feelings, which is great xxx

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