It took me 12 years to say yes to respite for Smiley. When she was little we were offered Respite in this sad little house with a group of adults. So that was a 'no'.
Nor could I see the point. Smiley is just such a sweetheart, and while she was small and portable, you could bring here (almost) everywhere. It seemed unnatural to be parted from your child, and so it took years of nagging from my social worker before I reluctantly agreed to try Respite again. This time with a gang of residential kids she knows from her school: basically she was just wheeled upstairs, so she knows the staff and the rooms.
And Smiley has grown up in the last three years. She's now the size - and weight - of a small adult. I know that looking after babies is a 24 hour job, but you don't expect to be doing the same stuff when your baby is 13.
Between showering, dressing, feeding, toileting, physiotherapy, the dreaded hoist that you need to use for every transfer, strapping her wheelchair into the car, not to mention outings and entertainment, her care takes up a very large chunk of my day. I adore her, but looking after her is physically very tiring, and as we both get older, it gets harder. In common with all parents who have children with special needs, I’m trying to deal with challenges that I never expected to face.
She’s in Respite for one night right now. And for the first time ever I was looking forward to it, and I don’t feel guilty about saying that. After 5 weeks of caring for her 24/7 while the school was closed, we both need a break. She needs time with friends, which I couldn’t provide over the summer. Her brother and sister need time with me, and the chance to do stuff that we normally can’t. I organised two activities today. We had lunch on the run: no need to track down somewhere that both served mashed potato and had a decent-sized disabled toilet. Yes, some are smaller than others!
A few weeks ago parents, carers and their children took to the streets of Dublin to protest about cuts to respite. I went on the march, but now I understand much more clearly how they feel, and I wonder how long some of them have been caring: 20, 30, 40 years? Caring is relentless. You have to get up and do it every single day. Except when your child is in Respite. Tonight I feel light, like I have lost 2 stone. I also feel privileged that Smiley has somewhere to go for Respite that works pretty well. And that’s the key to it : you do need to be happy with the Respite arrangements. If you are, then saying yes to Respite can be a really good thing, for the whole family.
I wrote this post last night as I had a lot of spare time! Respite did not go as well as I would have hoped: yes she was well looked after, and yes I was told that she was happy. But when I arrived to collect her at 4pm she was asleep and gently snoring. Apparently she had stayed awake and giggling until 3am. From checking the notes it looks that thought no-one looked at her communications book or the step by step instructions on what to do if she can't sleep that I had included in the carefully packed bag: I don't think it was opened except to take out clothes. I've told them before to ring me at any time as this is not the first time she has struggled to sleep in Respite. Also I was told that she seemed to be constipated. Explained this one before as well. It's because she likes to use the toilet, and did so very enthusiastically shortly after arriving home. Mothers are always right aren't they? No wonder it's so hard giving over the care of your child to some one else...
Just a small note: I know that I have written on this topic before, but that was a long time ago when I had almost no readers. Anyway my view of respite is changing over time, so I reserve the right to write about it whenever I want!