Released On 30th May 2015

Justine: “It’s astonishing how it feels to have even 24 hours of not worrying”

If you’re going up a mountain, and you’ve got altitude sickness, you need some support. You need an oxygen tank. I needed some support and Short Break Care was my oxygen tank.

I’m Justine, I’m 48, and a single mum from Frome. I’m a parent carer for my 14 year-old daughter Ruby, who has Down’s Syndrome, and she has recently been diagnosed with autism.

The first time Ruby had Respite or Short Break Care, she was 10 years old. We’d been waiting for a very long time for the right person to come along.

We were so lucky that the first person we had – Sophie – was just brilliant. The only thing I would say is that it would take us 55 minutes to get there up the A303, which was quite stressful, as you have to do a lot of build-up, preparing Ruby to go.

Obviously Ruby was much younger, and much less confident, and had rarely been away from me overnight. That was a really big deal for us.

But this lady was wonderful, and so easy-going, and her family were so engaged; they were all enthusiastic.

She had a lot of experience, and that obviously gave her a lot of confidence, so she was very used to adapting to the child as an individual and their individual needs.

This is so important, especially when a child has Down’s Syndrome. We are all individuals, and there are particular characteristics associated with Down’s Syndrome. They perhaps need more support and patience to accommodate any idiosyncrasies.

So we built it up. It probably took about 6 months to build up to a full weekend. Our first ever respite started off at an hour, then two hours, then a full morning, then lunch. And this was all happening once a month.

First of all you have an induction or probation period to make sure everyone is on the same page and getting on, and I have to say we did almost immediately.

The thing that was so wonderful about Sophie was that we’d been on the list for a long time, because my daughter has double incontinence, and some people don’t want to deal with that particular side of things. It takes a very kind-hearted and particular soul to do that, I think.

It’s very, very nerve-wracking handing over your child to someone else; it feels unnatural, because I wouldn’t do it with my non-disabled son – he would go to a friend’s house, and that would be fine.

The first time I let go of her I felt guilty, really guilty. I felt I should be the one looking after her, but I was so tired by that time.

Ruby was very happy with her Short Break Carer, so we increased it. I’d drop her off on the Friday evening, and pick her up again on the Sunday afternoon. Ruby responded differently to Sophie; her attachment to me relaxed because she had somebody else to do things with. It takes her a long time to bond with somebody. She was very clingy with me before.

It meant I could relax. I’d felt I’d been on-call 24 hours a day, doing it on my own, dealing with it physically and emotionally.

It took me a long, long time to ask for help. I think there’s a lot of pride involved with us humans. It’s not like a job that you can go home and have a break from, and reboot and regroup.

I genuinely feel you are a very special person to be a Short Break Carer. Sophie has a big heart and a good soul. And the current wife-and-husband team who care for Ruby are wonderful – they look after her so well, it’s a delight to leave her there. She’s been going for several months now and really enjoys it.

I know lots of people who foster, and they are incredible people, and all of them genuinely lovely.

I have had a very good experience, and to me, it’s well worth doing. It’s astonishing how it feels to have even 24 hours of not worrying. It’s taken a long time to switch off, but I can now.

Click here to find out more about Short Break Care.

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