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SN children

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Original poster

Would you judge someone who couldn't look after their disabled child?

24 replies

extremepie · 31/05/2014 12:49

Just a hypothetical question really but it's been playing on my mind and I need to talk to someone about it as I don't have many people in RL I can confide in and no one who really understands as no one I know has disabled children.

Ds2 has autism, he doesn't have any medical issues really other than being a very fussy eater and not good at sleeping but other than that he's generally healthy.

He has lots of behavioural problems as I really worry that as he gets older I will become less and less able to cope with him physically. His dad (ex) has moved far away so I get virtually no help of any kind from him, I don't have many friends and only 1 family member nearby.

His dad is 6ft4 and he rapidly looks like he's going that way too, I'm only 5ft4 so he will quickly outgrow me. He's 6 now and I already struggle to lift/restrain him when necessary.

I'm wondering if he would be better off being looked after somewhere where they can care for him properly as I'm honestly not sure if I can in the long term :(

I worry that ds1 will resent his brother because there is so much I can't physically do with both of them because I don't have any help and I feel like they are both having half a life and it's not fair on either of them. Ds1 already feels like he is less important than his brother no matter how hard I try because the nature of ds2's needs mean he needs a lot more attention etc for his own safety.

The thought of him going somewhere else breaks my heart and I'm tearing up about it now just thinking it but I just don't want to look back in 10 years and have ds1 hate me for not giving him a 'real' childhood or have ds2 not progress and fulfil his potential because I can't give him everything he needs.

I'm so scared that if I 'give up' and I can't look after ds2 anymore that everyone will hate me and think I'm a terrible person, I mean, as a mother I'm supposed to look after him! I will feel awful, like I've abandoned him, but I don't know how much longer my body and mind can cope with it, some days I feel like I'm hanging on to my sanity my a thread and it's only a matter of time before I break completely and lose him anyway :(

Please help! Tell me your experiences with this :)

OP posts:

Ineedmorepatience · 31/05/2014 12:53

No one on here would judge you because we all know how hard it can be.

You have to do what is right for your family, there are a number of residential schools around the country for children with Asd, maybe a placement at one of those would be right for your son.

Take care and be kind to yourself

autumnsmum · 31/05/2014 13:23

I wouldn't judge you at all ! Dd2 has autism and i often wonder how it will cope when she's older as she has v violent meltdowns and she's only four

FriendlyFeatures · 31/05/2014 13:30

Yes, we have been in this situation when our ds was roughly the same age as yours so would never judge anyone!
What helped our situation was a very thorough carers assessment and core assessments on our two children to show just how massive our dd was being affected by having a severely autistic brother.
We now have a decent care package and although ds still lives at home he has regular stays at overnight respite and other support especially during the school holidays. I just thought i'd mention this as you dont say whether you get any support at all. Having all this extra support means that we aren't currently thinking of residential at the moment.

Original poster

extremepie · 31/05/2014 13:42

That's the thing friendly I feel like if we had more support I might be able to manage but at the moment there's virtually nothing! I feel awful saying it but I dread the holidays because then I have to care for both boys 24/7 with no break at all, the though of the summer is making me want to cry :(

We are trying to arrange respite (or 'short breaks') with a specialist childminder through direct payments but we only get awarded 8hrs a week at £5.50 an hour so realistically about 4/5hrs a week and it's not set up yet - even when it is it still won't make that much difference :(

I can't work because I can't afford the specialist childcare but if I just had ds1 I could because he could go to breakfast/after school clubs which ds2 cannot do. Not working means we constantly struggle for money, I can't afford to give either of them the life I want them to have and it's eating away at me :( If ds2 was somewhere residential he might have the chance to do days out, have holidays, none of which I can offer them as his own mother and it makes me feel like crap :(

Thanks for the support xx

OP posts:

LastingLight · 31/05/2014 13:58

Sending your ds to a residential facility is not the same as e.g. giving him up for adoption. He will still be your son, you will still be his mother and ultimately responsible for him and you will still spend time together. It's not the coward's way out and anybody who judges you have no insight into the situation you're in and can safely be ignored. Life is a balancing act and all you can do is try to create a scenario which is the best possible outcome for all 3 of you, given the circumstances. And it's not if you will send him away and that's it... if it doesn't work out you can always change again.

FriendlyFeatures · 31/05/2014 14:04

Social services really stepped in when I had a breakdown and told them I was considering residential for ds, suddenly the overnight respite could begin straight away when I was told he had to be 8.
does your ds have a social worker? I think our GP had some involvement in getting things set up as well for ds,mainly because I wasn't coping.
It is a horrible shitty situation and I really feel for you, you really have to be blunt and prepared to tell them just how bad things are, that's the thing I hated, I am a fairly private person and they wanted to know everything about us as a family BUT it has meant I don't know feel such a failiure of a mother because I know get the support ds needs xx

Firsttimer7259 · 31/05/2014 14:04

Hi this resonates so much w me because I wrestle w the possibility of residential care too. I wouldn't judge - I know we will need a lot of support and successful behaviour management and just luck to keep dd home w us. It's a hideous thing to have to think about and I really feel for you.
My dd is 4, severe asd and ld. We are still together which I'm thankful for but Dh is ill. I would inform as about your concerns And ask professionals working w you to contact ss and argue you need more respite to help you care for tour family. We are getting overnight respite now and that makes a huge difference. Plus can you apply for funding for a safespace? We are hoping to get one soon which will help in difficult periods to keep everyone safe.
My GPS and the various psychs involved w dd really helped us get the respite we needed - I felt like I was about to shatter a month ago. Now I'm mire hopeful but it's indescribably hard to manage a child w such difficulties esp if they are mobile healthy and just keep getting bigger

coppertop · 31/05/2014 14:12

No judging here either.

I always remember some wise words I read on here once about how doing the best thing for someone doesn't necessarily mean that it has to something that's done within your own home.

Sometimes the best thing really is to let them move into a new environment with all the opportunities that this may bring. You may well find that this is actually a really positive thing for both you and your ds2.

bluebirdonmyshoulder · 31/05/2014 16:04

No, I would never ever judge someone who felt they couldn't look after their child with SN / disabilities. I've almost been there myself and maybe I will in the future.

I don't think anyone on these boards would judge you either.

Firsttimer7259 · 31/05/2014 17:56

Btw while I currently find the thought of residential care hideous, I think it's hideous for me because I want to much to have her at home w us. In the right place my logical head thinks it could be good for dd and even for us. But I'm not ready yet or know what's available near us etc

Upandatem · 31/05/2014 18:57

This reply has been deleted

Message withdrawn at poster's request.

littlemiss06 · 31/05/2014 20:42

Its noones place to judge you, i work with severely disabled children in a school and we have children in our care whose parents have been unable to cope and these children are in residential care, it isn't down to anyone to make judgement you must do what's right for you and your family. I also have an adopted child who has asd and its hard and she's high functioning so must be extremely difficult for you.

Original poster

extremepie · 31/05/2014 20:58

Thanks you for all your support :)

I honestly didn't think anyone on here would judge me as you all know what it's like, I guess I'm more worried about wider society judging me. Even my own mother I feel would be like 'he's your son he's your responsibility you have to do it because you are his mother' kind of attitude, much as I love her I'm just not sure she would understand :(

I wasn't to post this in Aibu to gauge responses but I was too scared! of people like Happymummyofone

The other thing I suppose that worries me is if I say to SS, I can't cope with ds2 anymore and would like him to go to residential care would they think of that as a red flag and feel that I was no longer able to care for ds1 (nt) too? I know that sounds like a stupid question I just have no idea!

OP posts:

Original poster

extremepie · 31/05/2014 21:01

Also, ds2 is currently at mainstream primary, he is on the waiting list for the local SN school but it's felt that he is coping at the moment so it's not progressing any further.

I have no friends and only one family member locally who can help me out so really don't get much chance to be alone with ds1, that was mainly what the direct payments were for :D

OP posts:

autumnsmum · 31/05/2014 21:14

I don't think social services would assume you couldn't cope with your other chold

Ineedmorepatience · 31/05/2014 21:39

extremepie don't post on AIBU, you know that is not the right place for sensible opinion!!

I would stay right away from there if I were you!

Be kind to yourself you dont need to make your life any harder than it is already

500smiles · 31/05/2014 21:46

No judging from me. No-one should be judging you.

It is bloody hard and thankless sometimes looking after any child, let alone one with SN. Add in that you are a lone parent and have another child to care for...you need support and help and SS should be stepping in to give that.

Flexibilityiskey · 31/05/2014 21:47

I don't know what its like, as I only have one DS, and he is NT. I certainly wouldn't judge you though. You are clearly doing the best you can, and that is all any of us can do! It sounds really really tough. give yourself a break.

MyFabulousBoys · 31/05/2014 21:49

No I absolutely wouldn't judge you. I would understand what a terribly hard decision it was for you and feel for you. People will judge no matter what you do but people who care and understand will not.

Take care of yourself. X

ProudAS · 31/05/2014 23:24

A friend of mine had to put her severely autistic DS in a residential school. Tough decision but definitely the right one.

Kleinzeit · 01/06/2014 09:43

One of my friends' sons goes to a weekly residential school so he's home for weekends. That works very well for them, and for him too.

SS wouldn't judge your ability manage your NT son by how difficult it can be to manage a challenging child with an ASC. Two different things, and SS are aware of that. And for what it's worth, here's a bit of advice I was given by my Mum - SS probably wont do anything at all to help you with your DS2 unless you tell them you really can't cope with him.

So it's OK to ask for help.

Greyhound · 02/06/2014 11:53

No judging from me. My late dsis had learning and physical disabilities and did not grow up in the family home. Obviously, it wasn't how my parents planned to bring up my dsis, but there really was no other option. I'm sure other people did judge but that's their problem and their ignorance.

ouryve · 02/06/2014 13:26

I wouldn't judge at all. We muddle along nicely with the boys, most of the time, but if I were left on my own I wouldn't be able to do it. I would most likely need to seek a residential placement for at least one of them.

mscoolandthegang · 02/06/2014 13:55

My DS goes to a residential autism special school. The primary reason he is there is because no other schools could manage him and there are no suitable schools nearby, so he was funded by the education part of the LA, not social services. SS have been extremely unhelpful/judgemental here tbh - but of course it varies hugely by area. It is hard to get a placement though on the basis that you can't cope - it's easier to argue that he needs a particular school because he needs a specialist autism-specific education. Sometimes you can get SS and the education dept to jointly fund a placement.

As for other parents - yes, there is a bit of judginess. I've been told I'm not really a 'hands-on' parent now that he's in residential (but home most weekends) and even from other parents of disabled children, I have to be careful what I say. I think people feel a sense of unfairness that DS has such a high level of funding compared to their child, and that they're having to struggle 24/7 while I get at least the term times/weekdays free, also things like getting a taxi to school, not worrying about school meals/respite etc.

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