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Here are some suggested organisations that offer expert advice on special needs.

Original poster

Respite

26 replies

only1lucylocket · 20/01/2011 09:03

I agree totally on the need for respite for disabled children, but I don't agree using our children and holding them up to ransom. Would riven really put her child in care?
As the bereaved mum of harry (10.8.98-17.12.10) and mum to Tom(17..9.94-10.12.04) we had 2 severely disabled poorly boys and although we didn't ask for disabled poorly children, that's what we had. We loved our boys so much and we chose to have children. They were our responsibility and if we got help we were grateful, but it's not our right.
Sorry if this is unsympathetic.

OP posts:
Al1son · 20/01/2011 09:24

Riven didn't hold her daughter up to ransom. She commented on MN in desperation because she feels that she can't meet her daughter's needs without more support. She adores her DD and desperately wants to keep her at home. She is desperately sleep deprived and has other children who need her too.

Riven didn't seek this publicity. She posted for moral support because she was so upset at being denied additional respite. The media were contacted because so many people know that there are many more out there in dire need of more support.

I'm so sorry that you have lost two children. It must be hard to watch this sort of story but please don't judge Riven.

Original poster
only1lucylocket · 20/01/2011 14:11

I know I sound hard, I dont mean too. My gosh life for us was really tough, but I think if she really would give up her DD then that is one thing, but to say it is another thing. We must push for the support, which for us got better as the boys got older, for many years we had no support at home. I particularly found the school holidays hard, when the boys were in seperate pushchairs as my husband worked so i couldnt go anywhere.
Lets hope PM listens to all the pleas, and having met him whilst staying in Rainbows hospice with my son, it seemed that he understood,but whether he does amnything is another matter

OP posts:
tabulahrasa · 20/01/2011 14:19

It definitely wasn't a case of holding her child up for ransom

She asked for help was refused it and reached a point where she genuinely couldn't cope anymore without it

The media attention and what have you wasn't generated by her

meltedmarsbars · 20/01/2011 14:34

I disagree with you Lucylocket: we do have a right to help from society to care for our disabled children.

In many cases it is a near impossible task to do on one's own. Thats why we have social services.

Many disabled children are "given up" as you put it, and put in care - unfortunately caring for them in a family is just too tough. I am sure all of their parents genuinely agonised over the decision and only did it as a last resort.

bullet234 · 20/01/2011 14:41

Riven is/was at breaking point. The OP to this thread is extremely unsympathetic.
A society cares for its most vulnerable. That includes Riven's dd2.

AfternoonsandCoffeespoons · 20/01/2011 14:52

Did you read Riven's original post, Lucy? She didn't ask for the 'campaigning' etc. She wasn't holding her DD to ransom. She was posting as a loving mother who has run out of ideas - she really is at breaking point.

"Holding her DD to ransom".....FFS Angry

springlamb · 20/01/2011 15:00

Riven Vincent wasn't holding her dd to ransom. She was reaching out to friends she has been in touch with for years on this site (and has helped on too much occasions to mention) and her friends rallied round. She doesn't have loads of local friends to help her out. Her friends are all over the country and the world. So they did what they thought was most likely to get the help to Riven.
This is not the result of bad couple of weeks, or the January blues, this has been coming for years.

Ilona33 · 20/01/2011 15:04

To: only1lucyloket

I understand what you saying about the financial and other help, but I worked all my life ( through pregnancy too) and Id love to work again. My daughter is 5 with asd and she needs me as her carer. For us to get financial help means a lot. It takes some of the stresses of. But think about it, if we, carers would all go back to work wholl look after all these disabled children? How much would that cost the government? I would love nothing more, than to work and feel useful, be able to socialise and feel like a normal person. But I have to be there for my daughter, because she needs me! Its nobodys fault, but I`m grateful to get some sort of help.

ReclaimingMyInnerPeachy · 20/01/2011 15:08

Lucy

i;ve met Riven and her DD and family

That girl gets so much love and care; i doubt for one moment she had a clue wahat was being said

What teh media missed was that Riven is also disabled, with MS. As anohter carer who thank goodness has children with non life limiting disorders (Riv's dd'd form of epilepsy often is) I cannot even imagine how tough it is for her.

I also disagree we don;t have a right to help; this right to help is why we paid into the state willingly and without complaint until I no longer could (DH still does). It's called insurance for a reason.

I am sorry for your losees; my Harry (I also have one) will need lifelong care (ASD) but it could be so much worse as I am well aware

jackofalltradesmasterofnone · 20/01/2011 16:31

I also have a disabled son in a wheelchair who will be 33 years old this year i can honestly say that we have never been offered respite care by our local authority.I can honestly say that the local authority have never been of help, only in being able to pass the buck and say no money available.

ReclaimingMyInnerPeachy · 20/01/2011 16:38

jackof: have you had a fullc arer's assessment done?

tribeleader · 20/01/2011 16:45

Unfortunately, there are thousands of families who are at breaking point

Todays story is heartbreaking, of course no one wants to hand a child over to someone elses care but how else do you get the world to listen and take note

I don't know the family involved personally but I do know they have used up every little bit of theirselves - something has to give

It's great you coped but most of us don't and we shouldn't have to

2shoes · 20/01/2011 16:47

beware of first time posters mentioning the R word

borderslass · 20/01/2011 17:31

I have a 16 year old DS who has [as yet undiagnosed ASD] ADHD, extremely challenging behaviour and complex needs, we reached breaking point a week ago tonight when he violently attacked me and we had to call the police out to him. I phoned adult services on Friday but his SW wasn't in until Monday when I phoned her she came straight out to see me I told her I was close to looking at residential care as I could no longer cope.The first thing she mentioned was that she'll get regular weekend respite and to get funding in place, he was down under chad for respite from the age of 7 but we've never had any.It shouldn't take a parent to reach this point to get offered help.

Original poster
only1lucylocket · 20/01/2011 18:32

I am sorry, I really feel for Riven and her family. I have only just joined the mumsnet and I think am very raw from losing my son. I do know how hard it is caring for disabled children.
The very good thing that the media is giving this the airing it needs to get people out there who don't have a clue how difficult it is.
I really don't want to upset anyone. Sorry for that

OP posts:
bibbet · 20/01/2011 18:59

people wit children do need help at times, i have 2 sons which it would be lovely to be getting some help. however nathan is now 21 and callum is now 17 and we have never had any respite.people mention it to us but never has any options materialised.a break is so revitalising to parents and carers.

WetAugust · 20/01/2011 19:01

seen this
www.mumsnet.com/Talk/_chat/1130302-Riven-her-Councils-response

Don't know what's worse - the Council's crapor the views of 'fellow' MNers Sad

Original poster
only1lucylocket · 20/01/2011 19:14

My trouble is in the past I have met someone who said to me that they do not celebrate their dd birthday because that is the day things went wrong for them. She also said when filling put her DLA forms that she would like to 'dump' her DD on them so they know what it's like. This family never had to struggle for respite
These comments have stayed with me.

OP posts:
joolz70 · 20/01/2011 21:32

I am new to MN after reading the newspaper today. I can totally understand what Riven and her family are going through. I also have a severely DS with epilepsy and tubefed etc etc. I am a single parent and he is a twin. He is now 3 years and 5 months old. I can honestly say he did not stop screaming for 3 years. I could not put him down , I could not sleep, it was absolutely horrendous. I was so exhausted I felt that I could have collapsed at any point. ( I am sure this sounds familiar to many of you)
My sons community nurse tried in vain to get me some sort of respite but i was told over and over that there is nothing available in our authority for children under 3 years old unless they have a tracheostomy or are on oxygen machines!!!. Eventually my sons consultant wrote to Rachel House , the local hospice ( which is CHARITY run may i add). They came out to visit and luckily offered me 12 days respite per year. They have been wonderful and given me extra days as they obviously saw that i needed more help.I cannot thank them enough. I think it is disgusting that I have to depend on a charity for help. God knows what would have happened to me if they didn't step in.
The fact that my sons consultant noticed i needed help and could not offer it through the NHS is disgraceful.
My son was the christmas face of Childrens Hospice Assosiation Scotland this year and has raised nearly 60K for the hospices. Although I have a busy life it was the least i could do for them.
I noticed other threads and people are emailing David Cameron. Perhaps it would be better if we gave him a visit.!!!

sabster · 20/01/2011 22:39

I have four children aged 15, 13,11,and 9. my youngest child have severe development delay and severe learning disabilty as she has no speach, no mobility and no way to tell us how she is? she has found a way of communicating in form of hitting herself and banging her head on hard surface. No one ever wants to put thier child in care unless it becomes necessary. I have been working as wel as caring for my child (staying in hospitals with her for weeks and weeks) and still going to work in the morning. But now we are at that stage that if i dont send her in respite (if we get any)i will have serious break down due to no sleep at all. So asking for help is not wrong and its better that they ask for help then go and kill temselves along with the child like so many has in the past and then we all sit around and feel sorry for the families like us.My heart goes out to Riven and her family because i know like many of you how it feels. May we all find some solution to our needs and get better support for our children to make thier lives better.

cory · 21/01/2011 09:51

What others have said. I have been in touch with Riven on this forum for many years and know how dedicated she is to keeping her dd in the family and giving her the best quality of life she can possibly have. If somebody like her has got to the point where she feels she can no longer cope, then things must be pretty bad indeed. She did not ask for help- people offered because of what they know about her situation.

OffToNarnia · 21/01/2011 10:05

Having been in close contact with a family with who had a son with severe learning and physical disabilities, their main concern always was the quality of respite care offered. They wanted/needed support [desperately] but only if they felt he would be happy and safe. This was some time ago but I imagine the issue still remains. Yes respite must be on offer but it must be respite that a family feel able to accept/ feel safe with.

wendihouse22 · 21/01/2011 10:12

Desperation does mind altering things to otherwise loving and caring and dedicated parents.

When my son was tiny, before his diagnosis and my GP and Health Visitor used to come to the house and smile and nod and say, he'll probably grow out of it, I used to think my son would GENUINELY be better off without me. I wasn't suicidal; I wasn't a bad mum; I wouldn't have handed him over to social services but, I really believed that I couldn't cope with him (as a single parent). If he was "normal" then surely, it was ME?!

Now, he is ten. He has a diagnosis of autism, he has OCD/Tourettes and I do the best I can but, it's all been a battle and there have been times when I've thought, I CAN'T DO THIS ALONE! All we want and need is help for our kids.

I don't condemn Riven. I know where she, and others like her, have been emotionally and physically and it's hard. And it's constant. And David Cameron DID promise not to make cuts that adversely affected the disabled. I promise to do the best I can for my son, and he IS my responsibility but, when someone promises to help, and you believe them, and they change their mind? That's enough to tip you right over the edge.

jackofalltradesmasterofnone · 21/01/2011 10:57

yes we were statemented but not worth the paper written on especially the "housing trust" side of authority concerned after placing 27expressions of interest in properties as they became available all were turned down and told no money available for adaption work to be done we felt after trying for some 5 years and being stuck in a high rise block of flats the lift breaking down for 3months at one point struggling up the stairs with a wheelchair through dog and human mess enough was enough we moved into private accomodation in a different county and are still awaiting social housing some 3years later

wendihouse22 · 21/01/2011 11:37

Christ Jackofalltrades...... That's appalling.

Some of these MP's have NO IDEA how people have to live their lives.

I'm glad you're out of that.