It is selfish for parents with disabilities to have DC

[undecidedanduncertain]

Apparently one DC is okay (if the disability is not too severe) but more is really selfish.

A parent at a playgroup said this to me today. She has (I think!) failed to realise that I am registered blind and have 3 young DC.

It makes me wonder how many other think this, but don't say it in front of me.

But your point doesn't make any sense sad, with appropriate support children should not have to take on inappropriate caring roles. And it's been my experience with young carers that although they have limitations due to their caring role, the majority of them want to do that caring role. If they don't then we advocate for them and try and make sure all the services are in place to support the cared for person. You can't say all children don't want to care, in the same way that you can't say all adults don't want to do it. Protecting a child's welfare sometimes means helping a family stay together, even if you wouldn't consider the circumstances ideal. Children can be carers and still thrive.

And what happens in situations where able bodied parents have an able bodied child and then a disabled child? More than likely the child will provide some care for their sibling. More than likely they'll be the one supporting the sibling once the parents get older. More than likely they'll be caring for their sibling and their elderly parents, while also raising their own children. What do you think those parents should have done?

With appropriate support services and networks (if necessary), disabled parents have just as much chance to be good parents, as able bodied parents. There are plenty of shit parents out there, I'm not sure disability is really a good indicator of parenting ability.

If you're going to be a shit, neglectful parent, then you'll do it in whatever way you will. Some parents ignore their children in preference to their own interests, some actively hurt their children physically and emotionally, some just neglect them because life is hard and complicated and they're fucked up themselves, and some neglect them by pressuring them into caring when they don't want to or aren't able to. Those are not disability specific, all kinds of people are bad parents.

When I became pregnant with my eldest, my DP and I knew, mostly, about our disabilities but were fine. When my eldest was born, my DP had been asked to take leave from University and had a doctor's note declaring him unsafe to work after blacking out in a lab. It was a rapid drop that no one could foresee. Now, ten years on, DP has a full time job after years of being the main carer for the kids while my disabilities have taken greater affect on me. People can go on about knowing, but really knowing often only comes in hindsight and I think a lot of blame is heaped on people when really it is the systems that are unfit.

I tried to get my older children support, I felt guilty about the bullying and the trouble they had making friends especially with my legs going it's harder to take them places. I got them assessed as Young Carers, were told they weren't young carers (just kids with a few regular chores who had been socially isolated and bullied because of their parents disability), and we were put into a family support programme that was not designed to with disabled parents in mind. We got no real social support (we got a list of activities, most of which were for kids older than mine or religious groups not our own) and were instead pushed into renovating the garden and the house at an unhealthy pace for us (we were given a weekend to revamp three rooms, including building furniture). We did the rooms and are now behind my original slow schedule because of how long it's taken us to recover alongside work and caring for the kids. They were making our health so much worse and when this was brought up (that the project had left DP in a considerable amount of pain that made it hard to walk and I'd had to spend days with my legs up to ease the pain) we were literally laughed at and waved off as if we were joking so we had to stop the visits. Thankfully I have managed to help them socially, and hope to do even more in the spring when some activities they are interested in start, but that's more in spite of the system than anything else. And that's just one system, we've been failed by unfit systems so many times that I'm wary to deal with the professionals again.

I have a disability and have decided to stop at one child. This is my personal choice, I don't feel that I'd cope with 2 and my disability has a hereditary link so I feel it would be irresponsible of me to have anymore as my child may need financial support in the future which we couldn't provide if we had another.

I would never judge someone else's choice though.

Regardless of your personal circumstances, having children is a completely selfish decision, so I suggest a few of you upthread better quit while you're behind.

*we were given a weekend to revamp three rooms, including building furniture"

What do you mean by this? Is sounds like "do this, or else..."?

Several people have talked about disabled parents being selfish if they refuse help. It is important to remember that not all proffered help (whether by the state, or by individuals) is actually useful. Sometimes it is actively detrimental.

The choice must always remain with the disabled person as to whether they accept that help or not.

That is very true distraction. Some of the support we have received has been counterproductive too.

I was also described as being 'obstructive' because I refused to attend a parenting course too, for people with nt children when the behaviours we were struggling with at home actually needed a proper ld camhs nurse assessment. But hey ho

I was thinking more along the lines of situations where help/support was offered that would benefit the child, and the disabled parent refused it for their own personal reasons (such as not wanting professional help with toileting, when the young carer is extremely distressed at having to provide that care for their parent). In that situation, yes I am sympathetic to the parent and their dignity and feelings should be a high priority, but the needs and wants of the child, and their right to be protected, are also important.

Some posters have mentioned a lack of support. The Disabled Parent's Network (DPN) and Disability, Pregnancy and Parenting International (DPPI) are both great charities helping parents with disabilities to find solutions and support.

I have experienced "help" that was detrimental to me and my family. Part of the reason now my children are staying at their dads long term is because I had a "carer" who took it upon herself to judge the way I parented as being inadequate. This girl was a teenager and had no children, she had worked with elderly people and I was the first family she had worked with. When I tried to give her notice, I did notice a lack of support from my social worker and the care company who held my direct payments account and helped me. Not because they didn't care, but because of absence and sickness.

I was pretty ill, with impending homelessness, and this stress to deal with, so I sent my children to where they'd have a bit more stability until I could sort it out. It's been a year so far and I've just had to flee domestic violence as it turned out my ex partner though a disabled person was also a weak and easily controlled person. I am now rebuilding my life so that I can have the children back full time. I might not be able to work, or do everything able bodied parents do, but I am a great mum. My children thrive, do well at school and I don't believe my disability is detrimental to them at all. The way other people treat me can be detrimental to them, but I do my best to give them strength and confidence in dealing with this.

I don't believe I am selfish at all when it comes to my kids, they have given me a reason to fight, a reason to get up every day despite the pain. Before I had them both, I think I might have given up on life. Now I intend on being the very best I can for them.

oh good god fan that is shocking I have nothing to say really cant believe this happened to you

I'm strong on the inside mrsjay, so I will rebuild my life and have them back. I know how the system works now, and I won't be letting people walk all over me any more.

good for you stay strong

Go FFF, you speak the truth :)

FFT that should be, I can't spell :)

I've only read half the thread so not sure how it's panning out but wanted to chip in with a few comments

Firstly, this convenient meme that 'disabled parents refuse outside help' needs challenging. I'm sure it has happened in the past and will happen in the future... But I would raise an eyebrow if anyone tried to claim this was a common problem and the cause of child carers awful lives.

I can imagine (& know of) a number of situations where the 'help' has put so much pressure on the family that when that goes away, their situation is improved dramatically.

I wonder if that's where the idea comes from? The help doesn't help, therefore we can wash our hands of it, and blame the person that needed the help in the first place.

The outside help is often incredibly unhelpful in reality, with the poor infrastructure of the 'care industry', insurance issues and a total lack of qualified, all round help. Add in the bureaucracy of social services, and lack of flexibility and coordination between departments and the constant all consuming fear of having children taken away... Well, it doesn't take much to understand why people already hanging on by a thread might avoid this situation.

Adult social services are the unglamourous broom cupboard who has even less money than childrens ss. Adult ss mainly deals with the elderly, and then the amount of attention given to disabled but nt parents is about nil. They mainly get lumped in with elderly ss, which is bad enough for the elderly, and utterly unsuited to helping someone with a full and busy life as a parent, a worker, a carer to somekne themselves etc.

Although the laws around helping disabled people are based on need rather than finances (mainly), disabled people often have to keep their professions, community and active lives a dirty secret as it doesn't fit in with the disabled = useless burden attitudes which are rife.

Secondly, the local authorities have a statutory obligation to assess and meet the care needs of any individual, and not treat a family member as the designated 25/7 carer (slave) without supporting them.

Trying to get a council to abide by its laws and responsibilities is not an easy battle, varying from county to county as well. Trying to even find out what the legal situation is hard as councils don't know and don't want to know. Trying to educate a whole department about their statutory responsibilities is a nightmare, even if you were fit and able to deal with it. Then trying to convey your own specific needs and how they are best satisfied... Well, most people have given up a long time ago.

The battle that a disabled parent or a carer faces would be too much for a healthy or unexausted person, and mainly, people don't have enough health or other resources to fight.

Totally, when I first asked for help from social services I had an experience that almost put me off entirely. From the beginning they made sure I knew they didn't think they should have to help, because at the time the disability was thought to be temporary due to pregnancy.

I was given care from an agency, most of whom were shocked to find me not elderly, and who said they couldn't do XYZ for my children because they weren't allowed, which in my situation wasn't helpful at all because I needed help as I was immobile due to hip and pelvic problems brought on by pregnancy and had a toddler to care for.

This care was applied for from sixteen weeks pregnant, and not given until after I had the baby at thirty eight weeks. So I ended up living on and off with family to help me, despite it being extremely awkward for them and uncomfortable for me as I didn't have the adaptions at their houses to help me get around.

The agency staff were extremely unreliable at turning up, to start with I'd sit waiting for them to come, but months in when I knew people were more likely not to turn up that to be there, I started going out to feed the children, instead of waiting for someone to come and help me.

This resulted in a very unpleasant interview with a male social worker who told me I'd been given a service I didn't need and if I wanted it to continue I had to be there when the staff turned up (with the manager of the care company sitting beside him) and that I had to persuade him as to why I needed the care in the first place. With my mental health as poor as it was, I asked them to please leave and had to ask several times with this man repeating his question over and over and making me feel more and more backed into a corner and panicking because I was alone with these two people criticizing me and basically making me out to be a liar and ungrateful.

My care was stopped, and I struggled on by myself for another couple of years, until I began to get kidney problems as well as the joint and muscular problems.

It took a lot of bravery on my part to call back and ask again for support. I let my situation get to the point where I was near to breakdown before I did get the courage to ask, and I made sure first I knew my rights by reading up on what the council had to provide, how the system worked and what my rights were.

I specified no male workers, which helped a great deal, until one lady I knew well left to work elsewhere and was replaced with a man, who didn't understand my anxiety and need for support, this was unfortunately at the time that my carer was not being very caring, and I was left to sort it out by myself basically. That left me going to live with a man who was abusive (though he presented as caring and supportive initially when we were dating), handing my children over to their father and leaving the town I'd lived in for the past ten years to somewhere I was completely isolated and vulnerable.

Now I've got a long way to go to get back the homelife I want, there is definitely prejudice in the system if you are a younger client and not acutely disabled and incapable of most things, simply disabled and wanting help to lead a normal active life. And they definitely try to force caring positions on people in your family rather than sparing their budget to allow you the dignity of independence. They questioned me as to why my mother didn't do my care, despite her spending half her time in another town with her partner, and working full time and studying also. They also asked about friends who might do it and other family, and I had to be very firm with them and say I had no one able to take on that (free) role for me.

And I want to add that people in caring roles have a right to assessment too, this provides support and respite for them too. Not everyone is aware of it, I found out because I was a disabled mum caring for a daughter with behavioural issues which can be classed as a disability. I had the right not only for my own care, but support in my caring role.

I wrote my post not having read the last four pages, and am saddened to see we re still on the same topic :(

So many stories that illustrate exactly my points, I could have written some of them myself :(

We do need to have the one central fact acknowledged on which everything else rests, using another posters words:

"with appropriate support children should not have to take on inappropriate caring roles"

That is the fundamental so all this 'oh think of the children' stuff is being aimed at the wrong people. It's easier to blame the selfish disableds than to look a little further afield.

My dad didn't agree - he was a below hip amputee at the age of 22 following a motorbike accident and I am baby number 9 who arrived when he was 63

What I learnt is that all parents are different, have their own parenting style and it doesn't matter what they can or can't do, it is te time spent being with you that matters.
Yes, I spent more time in hospitals with him and eventually helping my mum nurse him at home than my peers did as a teenager, but he was my dad and I loved him.

Professionally, I don't know of many disabled people (or parents who are also carers perhaps for a sibling or grandparent of the younger carer) who deliberately refuse help because they don’t care about their children, though that doesn't mean it doesn't happen. Sometimes the nature of the disability means that people are reluctant to accept help or struggle to accept help, and people can feel very ashamed to even admit needing help. Carers services should be working with families to break down these barriers, and advocating on behalf of the carers to make sure the whole family is being supported. SS is such a mixed bag, and even the good social workers and staff are working within an awful, complicated, system. It does not surprise me, sadly, that people have had shocking experiences and been treated with so little respect and that people are afraid of what will happen if they seek help. It doesn't help that the media portrays social workers as either evil child snatchers or totally useless, and equally implies that disabled parents are neglectful.

If caring is not negatively impacting on a child’s education and wellbeing, and their aspirations and hopes for the future, then there is no reason that it has to be seen as this awful thing for them to do. A good young carers service will help children unpack their feelings on caring, help them balance their school, social life and caring (if they continue caring) and advocate on their behalf with their family, professionals and their school etc. For children who want to care (in an appropriate way) for their loved ones, caring is just part of the rich tapestry of family life, and can equip them with valuable skills and experiences for the future. A teenager who can happily and confidently complete their own basic housework, keep up with homework and social activities and keep a track of when another person is taking their medication and going to appointments has already got skills that very many adults struggle to get to grips with.

And as for ‘disabled people choosing to have children = being selfish’. Well. Aside from all the previous points about having children being a selfish choice for anyone, and disabled people still being people; that so many other posters have phrased much better than I could. Any single one of us could become disabled in the blink of an eye. Any one of us could have another child with a disability. Any one of us could become a carer for our spouse, for a relative, for our elderly parents. And all those things can lead to children becoming young carers. If there is adequate, appropriate support for the family, this doesn't mean that carers become house elves and domestic slaves. And even when there isn’t adequate support, most parents are acutely aware of their children taking on a caring role and what this could mean for them and their future. So just stop with talk about being selfish. It’s damaging and hurtful and not true. We aren't giving anyone enough credit.

Anger or frustration at disabled people having children is misplaced and nonsensical. Be angry at a system that doesn't support disabled people and their families to live full lives. Be angry that services and financial help have been cut to the bone and that local authorities have been forced to cut spending on vital services. Be angry about entrenched disablism in society. Be angry about the media and their portrayal of all disabled people as either scroungers or Paralympic superheroes rather than just people, who come in all shapes and sizes. There is a shit load of stuff to be angry about, there’s enough to go around.

Um, sadoldbag, in many countries kids look after younger siblings and do other chores.... I'm sure they would have done the same in the UK not so long ago.

This idea that disabled parents refuse help is often an outright lie, put about by social workers to shift responsibility.

I fought for support to look after my DD, only to be firmly told there was absolutely never going to be any help available because it wasn't the job of adult social services (lie). Children's services said there was no help available unless my child was at risk (another lie). I was told that I could be assessed if I wished but it would definitely be a waste of time and no one had training to assess disabled parents. There was no point wasting precious resources on a useless assessment so I had no choice but to say thank you and goodbye.

Later, after learning that all the information I'd been given was fictitious, I wrote to the Chief Executive or whatever he's called. That great man read my notes and declared himself 'reassured' that I had chosen to withdraw from a care assessment and so had refused further help.

In the end, I was able to access a 'temporary care package' only because I made it known that the Equality Commission was monitoring social services' response to my situation. And my MP was putting some pressure on, too.

I'll remember that medic, I'm in the middle of the very slow process of getting help now. I'm incredibly lucky that my mp as well as being very far left labour, also suffers from RA. In my case though, its my own situation though that makes me think if someone was getting this (proper, actually helpful, not the examples given here) help that i'm fighting bloody hard for, and turning it down, then they are selfish though.

Thats nothing to do with their disability, I'd say the same to any parents situation that affects their children. That doesnt mean I have no empathy for them, and i don't know how hard it is, but your child always comes first. That said, I would guess it would be incredibly rare, and agree that to say it is common sounds like antidisabled propaganda, by people trying to cover their own backs for not helping.

As one of the very first responses here said, some people are selfish and always put their childrens priorities last. To say none of them are disabled would be silly :)

miscellaneous can you help at all with the laws around the "25/8" carer? My dh was basically told tough shit for him when hes home, nothing about access to support or anything. Hes not even entitled to carers allowance :(