Talk to me about 'respite'

[UsedBySomebodyAlready]

Hi,
We have a 5 year old daughter with quadriplegic cerebral palsy, epilepsy, GDD, and is certified blind. She is beautiful and joyous but she is full on, intense and can be really hard work. She doesn't engage with screens in any form, she can't entertain herself or be left alone. Weekends are really hard as she misses school, and she needs someone with her one to one which is quite draining and means there is no down time. It feels like we are never a 'normal' family and our older 7 year old daughter misses out on a lot. There's no cinema or cosy times chilling in pyjamas like I see on FB, which I know she would love! We have to do the things we have to do, around the accessibility that is available for her sister. Our older daughter is incredible, loving and patient with her sister and misses out on a lot, I feel, but uncomplainingly. She's not having the childhood she would have had, and she doesn't seem to mind right now but I do and the guilt for me is strong. But before I get into too much of a pity party...

We've finally been assigned a social worker (a lot of things seem to kick in when they turn 5...) and he mentioned respite. My DH was very resistant but I think it is important not just for us as a couple (we haven't had a night out in 7 years) but also for DD1. He has asked us to think about what we ideally would want and I honestly have no idea about what is acceptable to request. He said that they could provide carers to come to our house or they can fund us and we employ them. What do other people do? How do you use the respite service? We don't want her to have to go anywhere overnight, we want her here, but we don't know how it works. Do carers need a bed? I feel so stupid because I don't know these answers. We've just been surviving up til now and this is our normal. It's hard to imagine getting time for ourselves or to spend with DD1.

[UsedBySomebodyAlready]

I finished that post really abruptly. Sorry. I'm trying to get my head round things ALL THE TIME and it feels so overwhelming. Sometimes it's like I'm drowning. I don't think I am coping very well. It seems incredible that we might get some respite. I feel so guilty for feeling like this.

[spader1987]

Hi usedbysomebodyalready,
I didn't want to leave your post unanswered.
Ds 8 gets 3 hours a week respite term time and 5 hours during the holidays as well as 12 nights a year overnite respite.
The overnite respite is something i said defiantly no way to until i went to the place. Ds loves it and loves going on a sleep over with his friends, that's how we look at it. Ds had no contact with children outside of school so it's been really good for him. He is older than your dd (nearly 9).
As for his other respite we have tried groups attached to an agency and also agency workers. It didn't work out for us so we have gone down the route of employing someone via direct payments. This has meant i am more in control and have found someone who has experience dealing with the needs ds has. We are early days with this as it is still going through but the early signs are positive. I must admit becoming an employer scares me a little but managed accounts are apparently available, i can't give any further info on that currently.
I would do some research to see what is available in your area. Check for agencies, specialist groups/after school clubs, holiday clubs and consider employing someone yourself via direct payments. Does your dd have a ta at school who might do it? In our experience finding something/someone was totally up to us, social services don't give recommendations.
It's a difficult decision admitting that you need help but in my experience it has probably benefited ds more than it has me. He enjoys doing things with others and doesn't understandably want to be with me constantly! You absolutely shouldn't be feeling bad and you sound like your doing a great job! Be kind to yourself op.