Friend's Negativity Over 'Respite' Care

[jakbrown]

Right, another query (got so many things stored up to post on here!). My friend has reacted really negatively to my dd having 'respite' care (she's got a newly appointed 'link' carer, I believe the correct term now is 'short term foster carer'). Have tried to explain that I'm trying to take a longterm view, that it will be great for dd to have somewhere else to go (and vital in an emergency)that she knows and another key person in her life etc etc. And that dd is going to get older and whilst we absolutely adore her, her difficulties aren't neccessarily going to radically lessen and need to think of wider family etc. (Have spoken to a mum with a 13-year-old boy with SLD and autism and she now has somebody coming in every day to help as she has another ASD son who's 4 and two other children and it's just too much to cope with in the mornings. They can't get out of the hosue! Plus they have one weekend a month and she says it's a lifeline). She literally sat there with her mouth open when I told her the 'good' news and said she didn't understand why I would put dd in 'respite'...
She has a 7 month old baby and has been very supportive up until now. She's said she has 'learnt' alot from my dd etc etc...
What to do?

JB, I don't know your story so forgive me if I repeat anything or am not very useful. I used to do a fair bit on respite years ago when I worked at Mencap, and have written a bit about it since...

One way to rephrase 'respite' is 'a break' which might work better with your friend? I think you are so so spot on with your whole point that you all need a break from each other (not just you from your dd) and that she needs other people in her life. Would that help in any way? 'Somewhere else to go' or suchlike?

jakbrown,

firstly, dont feel guilty. I am seriously considering this for my dd, or hopefully will be able to pay a carer for the 6 week holiday as this one was a COMPLETE NIGHTMARE, honestly.

secondly, my friend is a foster carer but she has special needs children on a full time basis for quite q while (sometimes 6 months, sometimes less) She has been used as 'emergency' foster care where she will have the child for a couple of days up to a few weeks. She is lovely, doesnt judge and i would be happy for her to have my dd needs be.

thirdly, I think you are being very realistic about the future, your fears may be unfounded, but if not you have the foundations there to make your life easier. It is bloody hard work looking after a severly disabled child/adult. you deserve a bloody break for your own sanity.

Fourthly, (hope i am on the right number here! ) your friend....I would say give her time for now, but I have lost (or forgotten) alot of friends because they just dont understand how my life is with my daughter. I have 'friends' judge me, even saying i do not 'do enough' with dd. i do evrything I p[ossibly can for her, she is my daughter. At the end of the day you have a choice whether you stay friends or not. She may just need to get used to things, or just doesnt understand how much you have to do for dd. Hopefully your friend was having an off day

HTH and i havent just waffled for ages!

JB- I also don't know the backgroud but had a cousin with sn who used to go into respite. His parents and siblings needed the break desperately plus as you say what if there was an emergence- far better that she's used to going somewhere.

Your friend is so new to motherhood that the thought of being away from her 7 mth old is probably too much for her to understand but surely as a friend she should understand your situation.

i was a care worker a few years back and worked in a respite home for people with sever disabilities. i totally understand your need for a "break", every mother needs a break now and then and especially if your child require mork attention than others. a break for you and your child is so benefical to both of you, they get a change of scenery to meet new people and do different activities and you get a rest and get to spend quality time with your family, when your child is reunited with you they are welcomed by a refreshed and happy mum! what is so bad about that.

i just think your friend was not thinking straight. as motherinferior said, a break sounds much better and that is exactly what it is and why not - you deserve it!

I meant emergencY not emergence... duh....

Well I'm in a foul mood today- so will be blunt

You friend hasn't a clue. Ignore her. If she's good in other ways then forgive her for this, but just tell her she doesn't understand your situation. I don't think you need to spare her feelings on this one.

And we're in the process of arranging respite at the moment. (via direct payments). Like you I feel we need more backup (think that point is made in George and Sam as well). Brought home to me by the fact that when baby number 3 is born we are going to be stuffed if its born before xmas as the only person who can actually manage ds1 except for ourselves is my mum. She works full time and will struggle to help out before xmas so I'm looking at being in having a section by myself whilst dh looks after the children. That's the reality of having a SN child- we need respite as we can't just book them into the local playscheme or find the nearest teenage babysitter.

Oh ffs! Everyone uses respite care but for those of us with NT kids this means dropping them off with their mates or family. Not saying for one minute that SN kids can't have this too but it is a damn sight harder to sort out. Forget what your friend has said, she doesn't know her arse from a hole in the ground!

And if she only has a 7 month old she doesn know how much work any child can be yet.

Oh jak- that sounds upsetting. Stick to your guns though because I think your reasoning is spot on. Good respite provision can be absolutely wonderful for everyone in the family, IME, and isn't always easy to find. Yours sounds great and I think you should hang onto it with both hands.

I agree with mummylove that your friend is probably so bound up with her young baby that she just can't empathise atm. It also sounds like she is very fond of your dd and maybe that has distorted her perception of how hard it is for you to look after her 24/7. This a real trap for friends/professionals who like particular children with disabilities, IME. We have not had the 24/7 close emotional and caring experience that you parents of children with special needs have and it is very easy (but very stupid!) to think that your fantastic and exhilarating hour playing with the child/watching a really skilled parent manage difficult behaviour with seeming ease is indicative of what life is like all the time. Doh! Doh! Doh! (er... I've done this before, in case you haven't guessed. But I didn't mean to and have seen the error of my ways... )

Give your friend some time by all means, if she is not too desperately annoying, but in the meantime remember that you are the expert on whther your family need a respite service, not her.

OH, thanks SO much for your replies. You are right- she just doesn't bloody 'get it'.

I know this because we went round to her house a couple of months ago for a wonderfully 'middle class' lunch (she lives in beautiful, elle deco style home, not that I'm jealous or anything) and as she made homemade homous and marinated vegetables with her husband she left me, dh, dd, ds and THEIR DS in the garden. DD totally started spinning out (very bright sunshine- tends to do that?) and dh and I got very stressed as dd was very stressed. We were literally running after her as she span around on the edge of disaster. Loads of danger- rusty wheelbarrows, beautiful artefacts etc. We said we would have to leave as dd stressed. She said, 'She seems fine to me, she's not screaming or anything'.

Er?

Obviously no understanding of autism or dd. But then I'm being unfair. Why should she?

Agree with all comments- dd will only be going for one evening a month and her link carer is her therapist who adores and loves her. And you are right jimjams, you NEED SUPPORT as you can't access mainstream childcare.

Rant over... Large glass of wine awaits...

I can remember when I first mentioned to a group of my friends that I was thinking of contacting Crossroads or Homestart, just to help ease the situation of juggling ds and dd around.
They just couldn't understand WHY I was even thinking about getting in a stranger when they were there to offer me help.
Trying to explain to them that I am just not the sort of person that wants to take advantage and I would more likely just struggle along on my own rather than "put someone out."
By getting outside help it was someones job to help out and not have to rely on the favours of some very good friends!
Does that make sense??

Absolutely

I have one excellent NT friend- brillaint friend- but I still find going to her house a bit stressful with ds1 (a dream with ds2) just because its not "autism proof". He can let himself out the front door/back gate/climb in the stream etc. This freind does "get it" though so she doesn't bat an eyelid when I'm up and down checking all the time.

I don't think people realise how much help is needed at times either dingle.

Message withdrawn

Jakbrown - everyone has said it before but just thought I would add my voice. Don't let your friend's reaction make you feel bad. You are being sensible about your family's needs and you are being considerate about your dd, making sure that she is comfortable and happy with someone else. Why is that any different to someone who leaves their child with their mother or sister or friend? It's not. And I am sure your friend would not question that, so why should she question this?

As someone who has two NT children can I just say that I absolutely DO get respite care! Your friend needs to wake up and smell the coffee.

I think it's appalling that so many people in this country are desperate for respite care and it's such a lottery as to whether you get it or not. I'm pretty much with JimJams here - maybe she's a good friend in other ways but she ought to try walking in your shoes for a while before being so quick to pass judgement. It is good news, JB, and I'm pleased for you and your dd.

I get why you need it as well. my sister mieow, has just been told they should be getting respite for her dd1, and understand why she needs it. I wouldnt be able to cope with everything mieow has to deal with, and seem in awe of mums with kids with major disabilities. my neighbours get respite care for their 3 kids, and understand why as well.

some mums of NT kids do understand, just some dont, and probably never will untill they have to deal with it themselves or see someone else struggling.

Thanks for all your supportive comments . I am seeing her today and I've got a leaflet about Link Plus to give her and hopefully that will give her a greater understanding. Jimjams- so know what you mean about going to friends' houses and them not having a clue. I'm perpetually anxious whenever I go anywhere with DD. Our house may not be Elle Deco standard but it's most definitely autism-proof!

I think Jimjams sums it up v well.

People with sn kids can't always understand how different our lives can be in comparison. I'm waiting to talk about dp's for ds so we can get some respite care.

Good luck Lou...
I can see why mums of SN kids end up with virtually all their friends having SN kids.

Their ears must have been butning, I've just had a call rebooking it for 8th november

or burning even