Here some suggested organisations that offer expert advice on SN.
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Feel guilty about respite(16 Posts)
Please don't feel guilty, no-one (who matters) would think that you are 'palming' your dd off, we all know how difficult it can be, and regular breaks will help you to get much needed rest which will enable you to carry on being a brilliant mum. If it helps, I am a 'respite' carer, and all the kids absolutely love coming to my house - it's like a bit of a holiday and they get absolutely ruined I adore them and look after them as if they are my own. Also, the kids get new experiences and, as they get older, it is good they are used to someone else looking after them and being a bit independent.
Thank you everyone. I think you are right, I should find out what options we have and then worry about what suits us/her. I think if I knew she was off having a special day/time somewhere that would help with the guilt as its an opportunity for her rather than me just needing a break.
My friend has just been through a 2 year process to become a foster carer and is really excited to be having their first child to stay for a weekend soon, as are her other children. Its been a really detailed process for her to qualify to have a child for respite.
Dear Moo you are not 'palming her off'...you are giving your daughter the chance to meet new people who will do fun things with her, give her new experiences and it will be great for her long term. don't forget that respite careers are doing it because they really want to, they look forward to having their respite children and can devote all their time and energy into looking after her whilst she is with them. it will give you a much needed break to,spend with your othe rchildren or, if at all possible , to have some time for yourself? this will all go to help you to have the energy to continue looking after your daughter the rest of the time.
also if you don't request respite, the government will think their,is,no need for it and will cut the already small funding for it further!
My DD has been going having respite of various types for the last 16yrs. We started with 3hrs a weeks of Crossroads carer coming into the house after DS was born. We then progressed to her going to the local Childrens Hospice for overnight care but for her 1st few visits, we stayed there too, whilst they got used to looking after her. We gained enough confidence to go away on holiday whilst she was in respite, but felt so guilty that we were having a holiday and DD wasn't, that we ended up going on a 2nd holiday to take DD. We soon realised that DD didn't like all the change and activities that we wanted to do with DS on holiday and resigned ourselves to the fact that her holiday was at the hospice where she had 1:1 care (whereas I had 2 children to look after) and had everything she could want to entertain her.
The thing I felt was important was to give time to DS so that he didn't miss out on fun things because of his sister's disability. Respite for us has never been a break - more of a full on, activity laden weekend/week.
Find out from your LA what the respite options are for your DD and think carefully about what would suit your family best. I found that having someone come to the house for a few hours really meant that I had to take DS out - whatever the weather! DD has had a mixture a respite from overnight, carers at home for when we want to go out somewhere and holiday clubs in school holidays so that she has an activity to go to.
Don't delay applying for too long as these things often take ages to sort out, and you will have your hands full when DC No 4 arrives. If you are successful in getting respite and it doesn't work out, you can always stop it - although I wouldn't necessarily recommend that .
Just think about the positives for your DD. She will hopefully get used to others caring for her from an early age, which will make her more independent from you. And I'm sure as your other DC get older, they will appreciate the opportunity to do activities that they are not normally able to do because of constraints of your DDs needs.
I don't think we ever get over the guilt - we just learn to live with it.
Thanks everyone for your advice and support, I am really trying to put the whole thing in to some kind of perspective and your replies have really helped.
Thanks for taking the time to reply x
Please don't feel guilty... We shouldn't underestimate the effect on our other children, so it's important they get some 1-2-1 time with us.
We get 80 hours a year... not a lot, but we are very grateful. We started by having someone take dts1 out for 3 hours every other Saturday to enable me to spend some time with dts2. However, this really didn't work for us as a family.
We now use the hours for a holiday club, one day per week during school holidays, he goes from 9-5 and loves it. The holiday club have know him since he was 2 and they always give him 1-2-1 support whilst there. Dts1 is very happy there and I get to concentrate on dts1.
Most councils don't have respite services for young children so chances are you will get direct payments to choose a carer in your home or an agency carer. We struggled to find anyone at the standard dp rate of £8-10 p/h so got rate changed to £16 p/h so we could use agency. DP means you get control of who comes, when and what they do with your child. We have a ex nursery worker who is about 25 and takes ds out sat mornings to park etc. It's worked well and I think ds will need support for many years ahead and poss forever so by starting at 5 he will never have known anything different and just thinks its normal. Sometimes when children only get buddies etc as teenagers they don't want them so actually I think there is a lot to be said for setting up expectation of having others help out early on. We got DP awarded to meet the needs of the other children eg so we could do activities as a family ds would not tolerate. I use other parents to help out with my other kids regularly and have their kids in return so really this is no different it's just I can't get anyone to have ds for free!
Please don't feel guilty .I am considering asking for help with dd2 who has autism . My older two are 14 and 8 so much easier ages than your 4
Are you able to claim direct payments? That way you could organise a carer to do a fun activity with your daughter whilst you concentrate on the others for a short time.
I would do some research and see what help you can access in addition to respite. Please don't feel guilty, it will help your family in the long term and your daughter.
The guilt will pass..I used to feel the same.
Now I see the benefit of respite to us but also to my DD ..she loves her carer who has come to be a friend to her and takes her fun places.
Hi, yes she has a statement. Currently she goes to a mainstream pre-school with the support of a one to one. I am a member of a local special needs group but its more of an activity based group (days out) and their children are all a bit older generally so the activities aren't really suitable to us. Hopefully we'll be able to join in more in the future though.
We still see our health visitor but on the sn side of things she isn't very experienced I don't think. Lovely lady and heart in right place but otherwise... She seems to think my sn Dd is easier because she isn't walking, talking etc and how I must be really hit by the challenges that come with my 2.5 yr old... If only she knew!
Has your dd been statemented yet? Does she go to a sn nursery, i'm not sure whether some are attached to special schools? Ask your health visitor, what support groups are in the area? Hopefully parents with children with severe global development delay/chromosome disorder will be on board later, and offer more support.
Please don't feel guilty, you will soon have 4 under 4. That would challenge most families, do you have a home start volunteer? They support families with children under 5. Do you have family who can help you? Maybe put in for referral for respite, they should be able to show you where they will place your daughter and i'm sure most other parents who use respite have similar pangs of guilt. Hopefully lots of them will post about how they feel/ and what a wonderful amazing time there child has.
I am not sure what I am after really but i'll post in case anyone has ever been in this situation and can offer any pearls of wisdom.
My daughter is 3.5. with severe global developmental delay/chromosome disorder. As time goes on her behaviour is gradually becoming a bit more challenging and this (based on others with the same syndrome) is likely to continue/increase.
I have been umming and ahhing over requesting a referral for respite. It has never been offered, and I know even with a referral you are not guaranteed to get it or if you do, much of it! But leaving that bit to one side...
Part of me just feels so terribly guilty for even thinking about respite at all. She is my DD and my responsibility and can I really be thinking about 'palming her off' on someone else just because things are sometimes difficult. I would like to say as well that from an objective point of view I think respite is very much needed for parents and it's a good thing and wholeheartedly support anyone that uses respite, but somehow when I come to think about it for myself/my daughter I feel sick with guilt and the worst mother there could be.
So do I just wait and in time the guilt will pass and then request a referral? Or will the guilt never pass and I either deal with that or not go down to the respite path?
I have 2 other younger DD's and another baby due any day, in some ways it would be nice to have time with them/to focus on them without the extra difficulties that SN's can bring, but then the thought of us all going for a nice day out and leaving my other DD behind...well, it just doesn't seem fair.
As I say, I really do support anyone else that uses respite, I am just struggling with the guilt when it comes to myself.
Has anyone ever felt like this? (off to go and get myself a tissue now)
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