What respite means to me

I wanted to share with you what our respite weekends mean to me, which might interest those with special needs children who do not have respite and those parents without children with special needs. Our short breaks allocation is one weekend in four and they make such a difference to our family life :

1. On respite weekends we can choose activities to suit only us, we don’t have to take Joshua’s likes into account or worry about whether he will tolerate something. So for instance, we do not go near ‘Donald’s ‘ when Joshua is not with us – though I know they took him for supper last night! We do not have to worry that a restaurant has steps so access is difficult or if a car park is too far away. Choices are simply easier on respite weekends.

2. We can sleep when we want to and so we can have as much or as little sleep as we want or need. Yesterday after a busy time shopping and sightseeing, we came back to the hotel and had a siesta . I slept longer than I’d planned but I felt so much better for it. It is rare that Joshua wants to sleep when I do!

3. It is possible to truly relax as you do not need to be on red alert , with eyes and ears open, 24/7. This weekend Joshua having a seizure is not my responsibility , there are professional carers who will take care of him for us

4. Joshua requires a lot of attention. He does not generally have behaviour issues but he will not be ignored these days. Respite weekends allow us to focus only on ourselves and on each other. Usually when my husband asks something of me, my reply is, ‘ I’m just feeding/ changing Joshua’ or ‘ Joshua has just gone upstairs so I’ll be back in a minute when I know he’s safe’ On respite weekends there is simply more time for each other.

5. Joshua has fun during his respite weekends. He is fully entertained and he has a range of professional carers looking after him so he loves all that attention. This short break is not just for us as his parents, but also he needs a break from us. He gets to do something more fun than go to Tesco’s on a Saturday morning and the activities are tailored around what he likes to do.

6. The best part about respite for me is that it is only temporary. I know that I will get him home again on Monday after school and normal life – no matter how crazy it is- will resume. We will however be topped up and better able to cope with it, until the next short break.

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