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.
Mother's Day and Harry Potter Studio Tour - You know me, honest all the way, so I have to say that despite our hugely successful visit to Harry Potter Warner Bros Studios in Watford, my Mother's Day ...