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1 o clock Radio 2 today........

(13 Posts)
lottiejenkins Mon 27-Oct-08 12:58:29

Jeremy Vine is asking for peoples experiences looking after a disabled child!
I managed to get through but dont know whether my comments will be read out........ I told them that parents arent told what they are entitled to and that there isnt enough respite care for parents!! Am looking forward to hearing it!

amber32002 Mon 27-Oct-08 13:04:35

Just caught the end of it - they were saying that the new benefits rules mean that it'll be even harder for those with a LD to get work, and this is after 9 out of 10 already find it impossible to find a job. Didn't hear enough of it to know the whole story. Drat.

amber32002 Mon 27-Oct-08 13:06:01

Ooh, still on...

lottiejenkins Mon 27-Oct-08 13:06:14

Noooooooooooooo not that! A whole hour or there abouts now....... after the news!!

lottiejenkins Mon 27-Oct-08 13:12:31

This doctor sound likes she knows what she is talking about!!

amber32002 Mon 27-Oct-08 13:34:50

Trying to write this up as they speak...apols for any grammatical weirdness...

Doctor Sarah: There are expectations that baby will be ‘normal’ and ‘perfect’, you map out the future and family’s future, it’s so cruel when something steps in the way of that, and of course you love this child, and hate the though of what they are going to suffer. Half term is when so many parents take it for granted that you can keep them occupied, e.g. cinema and of course you can’t if there is one of them very disabled. Other siblings suffer too.
Next time you see someone, if their child is acting in a way – e.g. autism, screaming, shouting, do think and have some compassion. Don’t stare or judge.

There is sharp anger, grief, it’s a bereavement – you’re losing your dream of that perfect child, you might want to suffer it for them rather than have them suffer it… then there’s reactions of other people. We put off having babies, then plan to go back to work, and suddenly the world turns upside down, ‘why was it me’, etc.

Mothers can be intensely competitive, “My child is reciting shakespeare’ etc, and when you have a disabled child it feels like others can do anything and yours can’t.

In couples one parent is often very overprotective, another says let them get on with it. That lack of unity can do terrible things to a family.

Samantha, a mum, speaks: It’s a difficult way of life, isolating, stressful, emotional, physical. Middle one brain-damaged when born, needs 24 hr care, we get on with everyday life, but wouldn’t wish this on anybody. We learn to accept what we’ve got, we’ve had to work harder at our relationship as you have to get on with it. The other children have suffered, but we’re proud of them. Son 15, doubly incontinent, gastro tube, some nights really bad, we take it in turns, e.g. one of us can go out on own with friends whilst partner stays at home. No spontaneity, can’t just go to pictures etc, respite care, need to catch up with normal jobs though, not how I’d imagined my life being, but now I’m stronger, and proud of family. Learn acceptance. Get over the guilt, the grieving, then find strategies for how to cope. Learn to ask for help – very hard to do. Can’t have a job, career, or intellectual pursuits. I do get disability allowances.

Doc – LA had to provide more help with childcare, etc, but someone may be there for only a short time, leaving you to do the rest.

Joan: 13 yr old son epileptic, ten fits a week, going on holiday or meal so difficult, but we get some support from the NHS/SS.

Doc: Social services are seen as a failure, but now they have disability teams. Long term disabled child means ‘this is it’, and of course as parents get older, they worry what will happen. They might have thought child would look after them.

Care package terrible for one family, had to beg, borrow to get by.

Sibling of LD individual: It doesn’t get any easier, you have to find your own way, it’s a lifelong situation and something that is always there. When someone dies, they gone, but if they’re disabled but living it feels like a half-life, you see what they missed out on. Impact on family is huge. I would never have imagined having a sibling was as hard as it has been. Sister acted and looked like a normal able-bodied child until age 7, became very violent, if you have 13-15 yr old throwing things it’s harder for public to accept it. Incredibly difficult, particularly at that age when you want to have friends over.

Doc: Important to recognise effect on siblings. Stop and think, don’t be judgmental if you see that sort of situation.

Sibling: who cares for the carers? Only ones who understand are the family themselves. People may mean well but they don’t truly understand what it’s like.

Doc: we’re increasingly aware of this, you are entitled to a carer’s assessment every year.

Janet: Twins who are 14, CP and GDD, both motor skills problems, learning delays, autism.
Doc: Respite care?
Janet: Ex husband has them every other weekend, that’s respite. Diabolical getting any sort of respite, Married couples get hardly any help at all. Intolerable stress on the marriage broke it up. SEN school has just had a meeting to start helping as there’s extra money. Had to have counselling myself....

amber32002 Mon 27-Oct-08 13:49:11


Joanna: No matter how disabled they are, you will always love them.

Doc: That’s what makes you hurt so much for them, people can be so cruel.

Shirley: 13 yr old son born prem, CP, pneumonia, weighed 2 lbs, ended up disabled, 24 hrs a day carer. 16 yr old is wonderful, so is husband. Never easy but want to say there is light at the end of the tunnel, son is joy to be with, laughs, giggles, can’t do so many things but we just get on and do things. You have to accept what you’ve got, we have transport, scouts group is brilliant, beavers interact with them, he’s just Edward not ‘disabled’.

Doc: ..and those children will see them as a child, not a disability.

Shirley: I go into local college to talk to childcare course people about how it is to bring up a disabled child. Husband and her had doubts right at the beginning, knew he was going to have severe difficulties, had already decided that I would be a full time mum so hadn’t worried about work. One night a fortnight respite care which he loves now, but used to hate. It is easier.
Sandy: Daughter 13, in a wheelchair but I would not change things despite life being very hard

Doc: Attitudes need changing. You could make a real difference. Just stopping and having a kind word can make all the difference.

Seems to be the end of it...
Well done Radio 2! And everyone who took part, too.

lottiejenkins Mon 27-Oct-08 13:50:52

Have just finished listening and i was crying while it was on.........My comments werent read out but im so glad i happened to switch the radio on while i made lunch. Dr Sarah was a breath of fresh air and im so glad she asked to cover the subject.. her reasons were because people with special needs children find half term that much harder than other parents!

lourobert Mon 27-Oct-08 15:15:24

Anyone know if you can listen to this again anywhere...might be worth checking the internet for a podcast?

Would have liked to listen to this.

melmamof3 Mon 27-Oct-08 18:18:59

I listened to a lot it while in the car. Some very good points made by Dr Sarah, she talked a lot of ense.

glitteryb6 Mon 27-Oct-08 21:26:20

you can listen again on BBC iplayer

glitteryb6 Mon 27-Oct-08 21:32:16

I'll try that again!

time4me Sun 02-Nov-08 22:06:52

Thank you very much to everyone who contributed to this thread.I will listen to it with interest.Our son is 20 and severely disabled.I often listen to Jeremy and he is sensitive to parents of disabled children.Special thanks to AMBER.

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