anyone seen this? Child with CP in nursing home.

[lisad123isasnuttyasaboxoffrogs]

here

Im not sure why but feel very sad that this little lad will spend life in a nursing home. I know I cant judge as Im not in the position.

She trying to get SS to pay for carehome and not FC as she thinks they are doing it because its cheaper (they might well see it that way)
But I think I would rather my child be able to form close relationships in a family setting than a care home with countless carers :(

Im sorry if I have upset anyone posting this. I havent commented on OP as I dont think I would be flamed

I'm not sure I quite believe the 'our house cannot be adapted' or 'we do not have the money for my husband to give up work'. A lot of us have made sacrifices and given up work, moved, accepted less in life, in order to keep our children at home. Some people are not prepared to drop their standards.

However, I just feel - after two appalling days trapped in with a violent DS1 in the snow from which I am still reeling - that if help doesn't come at the right time and in enough quantity, parents in our situation get damaged and sometimes the damage is so bad, that it creates a deep gulf between us and our disabled children and tips us over the edge, where we feel we cannot cope. Other people cope with the same situation or worse, which must be very guilt-inducing for the parent who doesn't cope.

I wouldn't want to judge the decision she has made because I don't know exactly how she came to the decision. I can see she is happy with the care her son receives, and wants it to continue.

Sometimes I feel envious and resentful and jealouse of people who put their children in care, especially if I see them having a much better life than I do

I agree with you Donkeyderby (sorry about the difficult weekend DD) about the damage that lack of support can do to parents. 24 hour caring can takes it toll both physically and emotionally. My sons care is mostly physical caring (not medical) so mostly being a bit slowed down by illness does not endanger my child - but even so my health turning on me has impacted on my confidence to give ds the very best care.

Respite (monthly) was set up for ds after I got ill and I felt so guilty because I needed it - but now I see he loves the company and time to be independent at his sleepovers. Circumstances have changed how I see things. What I mean is we do not know what happened in this family either - perhaps they see that their son is happy well cared for and maybe his health more stable.

Far better a child be in a good residential setting then to be kept at home and resented by martyr parents.

Or getting to crisis point due to lack of support.

I totally agree we should not be judging this family.

we are all here because we have a Sn child (or, in some cases, work with children with SN)

I am sure that many people disagree with a lot of what I do with/for dd1.

Like Starlight, I have chosen to put her through an intensive early programme, often described by LAs as "child abuse". More than that, I have actively pursued getting her a full time place in an ABA school, and won't be changing that any time soon.

What is more, despite me being a sahm, we have recently employed a nanny. Mostly because, due to the intensity of the last 6 years of dealing with dd1 and "coping", I have been, and remain at times, close to cracking up under the strain.

It makes me feel shit that I cannot cope with my own child, and she doesn't even have medical needs. And she sleeps, and mostly eats well - so there's the 3 "major" issues out of the way, no problems, and I still can't cope with her.

I needed some space. Just to be me. Not constantly pushed around, badgered, tapped and poked (yes, I know it is part and parcel of having children), used as a tool for doing puzzles, endless rounds of fetch and carry, basically just being there for the sole use of my beautiful, funny, totally charmng and gorgeous girl.

If she were the child of a friend, I would look on with horror at what their life was like, as I know many of my friends do. There is a lot I have given up - tiny little things which all add up, and have slowly eroded who I am.

I can no longer listen to music, as it upsets dd1 too much, despite her being very musical herself. another thing I have done all my life - I am was grade 8 in 3 instruments, which I can no longer practice. I cannot participate in my favourite sports (ocean racing and rock climbing) in part due to the time I woudl need away, and also in the case of ocean racing due to the danger aspect - I cannot take the chance that I would die/be seriously injured as who would deal with dd1 then?

I certainly have no time to read, as I always used to. Once the children are in bed there is another legal document to go through, or another dietary issue to explore, another OT issue to research, another SALT issue to overcome. As there is for everyone. I honestly can't rememebr the last time I got to sit down and read a decent book, yet I used to be a voracious reader, and I sit in a house full of books that I can no longer look at.

And aside form the leisure stuff, i can't even go to to work, as dd1's school hours don't suit, and I won't leave ehr to the mercy of transport round here.

My dh also works very long hours, so for most of the week it is just me dealing with all of the above. he sometimes makes it home for bedtime, but that is not a certainty.

It is lonely and isolating, and we could never use babysitters, as they would never cope.

I have come perilously close to the edge in giving up dd1 - I have posted about it before. Because she has taken away all of what/who I used ot be. She has also brought so much with her - there really is so much I know/understand better since having her. But it is not always enough. I am me too.

And so we have employed someone to take the burden away form me.

So judge away - I have (not without agonising for at least 2 years) palmed off my children onto someone else, and thankfully we could afford that option, so i didn't have to take a more drastic step.

I cannot judge a parent for fighting for what they feel is best for their child. We don't know the full picutre - we are not in their shoes. SOme of us may have had similar issues to deal with, in whole or in part, but none of us has been thorugh every step that they have, to fully know the ins and outs.

Totally agree magso How on earth are they any worse than resentful carers plodding through life with a heavy heart, and it isn't just down to 'adequate respite' either. The child appears to be well cared for and loved, I imagine he is an important, central member of the family, they just didn't feel able to care for him properly.

And if I could afford a nanny i'd bloody have one !

Me and dp have had one night off in 12, and even then we were almost let down at the last minute with such a blase attitude I locked myself in the loo for a few hours and cried

There are rewarding aspects to being a carer but such a lot of it is damn hard work and utterly soul destroying.

I get four hours a week, no overnights, nada.

The one time we got a night off was when ds's respite carer took pity on my eyebags and had him overnight for free. I was then going to arrange for dd to stay with my aunt when my sis offered, then with literally hours to spare asked if she could cancel.

At which point I threw a HUGE raging temper tantrum then cried

I get four hours a week, no overnights, nada.

The one time we got a night off was when ds's respite carer took pity on my eyebags and had him overnight for free. I was then going to arrange for dd to stay with my aunt when my sis offered, then with literally hours to spare asked if she could cancel.

At which point I threw a HUGE raging temper tantrum then cried

My sister gets overnights but she two non verbal, one of them having seizures which are out of control AGAIN (she's convinced it's causing more damage) and the other confined to a wheelchair, partly mobility and partly safety issues.

But the place she uses is not suitable for my ds, it's for children with severe learning difficulties, which ds does not have, he has severe autism, he does attend a sn school (for safety reasons) which is excellent for catering to his needs, in fact my friends 14yr old son attends the school and is taking his maths A levels soon !

If he attended the respite place he would be frustrated with nothing to do, i'd rather keep him at home where I know he's safe.

Silverfrog your post rang many bells for me too ( given up music, climbing reading being who I am - fighting constantly). I have no doubt that the decade of caring for ds on the very edge of my endurance led to my illness - which nearly finished me off! So look after yourselves properly!
Apocalypse - ds respite centre plan around the needs/ enjoyment of their guests so they put active children together - go out on trips or for nature walks. Ds has never been bored but he does have Ld and ASD.

Pah, he wasn't offered a place anyway! But don't think it would be the place for him.

And the respite is supposed to double in the hols, mine dosen't, haven't seen my social worker for two years, waste of damn space.

Yup-who would have thought it would be like this-haven't been for a night out with dh in 7 years,as we have no-one who can look after ds-we do separate things-I couldn't go to his works do.I keep thinking ,next year (every year)

I am not remarkable, I am just dealing with daiy life, as we all are.

Starlight, you put it so well, just existing with dd1 is exhausting.

Honestly, if we hadn't managed to find her current school, fund it while we fought, and now have it named on her statement - I don't know where I'd be. But it could well be somewhere without dd1

I really was at the end of my tether.

aside form all the little things in life that I have given up/changed, we have moved house and areas twice now for dd1, so yet again we know nobody where we live.

even dd2's drop-offs and pick-ups at pre-school are arranged to fit in with dd1's timetable, so I don't see other parents then either. It is truly isolating having a SN child in your life.

I know what you mean re: pyjamas, Star - I have been known to dress dd2 in dd1's stuff. Not too bad, at least they are both girls, but dd1 is about 4 feet tall, and dd2 about 2 feet tall

It isn't all bad, of course it isn't, - some of you will have sen the video I posted of dd1 a little while ago. She is a total sweetie, when she isn't dictating my life, demanding my sole attention, making sure I don't talk to anyone else, at all, ever, controlling so many situations that I lose count after 15 minutes (seriously - school wanted me to do a baseline on how much she manipulates me. I lost ocunt after 15 minutes...)

But the system doesn't work, and it really needs changing - everyone who has posted here has als been at the ned of their tether, sometimes leading to health implicaitons. It is not right.

Must admit I had a chuckle the other day, went into town with 2 friends, we all had prescriptions to pick up for the dcs, I was only getting ds's movicol but into me friends bags go epilepsy pills, stuff to help em sleep, stuff to calm them down, stuff to help with pain caused by tight limbs, all stuff they didn't think they'd need when they had children.

Then it was our turn, pills to keep us sane, pills to help us sleep, caffeine tablets to wake us up, pills for my friend for her arthritis which is getting a lot worse from lifting her grandson, all stuff we didn't think having children would leave us reliant on. Am tellin ya, we cleared out BOOTS, then we left, swaying merrily and my friend swirling Valium round her head in triumph

It is an absolute fucking nonsense that only by putting our children into care do we receive the necessary amount of respite to have a good family life. Absolutely crazy and utterly obscene. Those who stick with their children get the worst deal!

NO WONDER it brings up strong emotions - and expressions of those emotions - on here.

I hope we don't turn against each other and this can continue to be a really fantastically supportive place (which I think it is).

I think my friends son is very similar to your dd riven, the constant screaming really gets her down, I took him for a walk round town on Saturday to give her ears a rest, she does ok for respite tho, but a lot of that is down to family.

Riven, that IS a really difficult combination of impairments. Maybe the boy in the care home appears just as happy there as he was at home. That could be sort of demoralising as a parent, but also much easier to separate from your child, whereas you are faced with your DD's deep distress at change and strangers.

I have found it much harder now that DS1 expresses his desire to be at home much more forcefully and I know he'd rather be here than anywhere else