I resent my disabled child

[Meandyou02]

Another day ,another handful of my hair torn out,a bite on my shoulder which has not stopped stinging since 4am this morning when he woke and inflicted it,3 hours sleep for me for 14th night in a row,non stop crying for reasons he cant tell me(non verbal) followed by non stop laughing .pinched arms all day long.hate that I'm still wiping his bum up to 10 times a day and hes far far to big for it and kicks me with his big string legs on my face or anywhere and gets muck everywhere in the process.theres no chance he will ever be toilet trained.SS have said theres no available respite.I hate it,hate that hes ruined my life and my other kids life.hes been a screaming demanding nightmare since he was born.no sleep no enjoyment, theres nothing about him that brings any happiness. I am at the stage I seriously think I need to give him up to social care.but I love him,what the hell can I do.im in a living hell.people judge those mothers who kill themselves and take their child but I completely understand why they do,sometimes there is no answer ,no help great enough.

@x2boys shocking. I feel you’re being let down 😔 xxx

OP has today been any better or have you been in contact with SS? X

Hows it going today OP?

Just checking to see how you're doing today OP?

I have read this thread several times and as a parent of a child with significant disabilities it's really upsetting so many poster,s seem to think the solution is just to put the child in care,this is a huge decision and I really wouldn't judge any parents of a child who feels this might be the best option but it's not that simple as the parent you have to decide what in the best needs of your child ,it's often a heartbreaking decision the blase attitude of so many posters is upsetting

I agree with you. It's a very hard decision to make to put your child in care and I'm sure most parents would rather not.

Also residential places tend to be offered to children with severe diagnosed conditions and children without those tend to just end up in care so foster care. There's a huge difference in those 2 settings. One is to care for children that need professionals to meet their needs and the other is just care, being passed from pillar to post.

Certainly best to ask for help rather than making threats like putting a child into care or not exploring other options first.

Considering the OP's child does attend a special school and it sounds like her has severe additional needs, a residential place may well be an option but that's different to putting your child in care

Unfortunately unless you have resources to get residential there seems to be a case of having to be rock bottom to even be heard. I get on well with my sons special school but I am well aware that when it come to residential they will obey the LEAs line and say the school is suitable even though it is school where he is most violent. It is school where I have to walk the walk of shame collecting him, the school that sends him home because of violence, the special school that requires 1:1 and 2:1 outside but still say they can cope. Residential generally is not about the parent not coping but the school not coping which closes the door for parents and they have nothing left but the option of the threat of relinquishing parental responsibility unless they have the money to fight. If you believe that your child will eventually need residential then gather evidence, get respite and don’t trust anyone.

It's sad to hear what you are going through and my heart goes out to you and your family.

Most of the time people will say to you I feel your pain, or I understand what you're going through but honestly it is wrong to say that because until you find yourself in that situation you don't really have a clue.

As a mother of a special needs child and who care for children with special need myself i have noticed that alot of parents are so locked in this dilemma of not being able to carrying on their lives as they normally would before having their child instead of assessing the situation differently.

So yes we have a child with special needs so what can we do about it? The more you dwell on the situation the harder it gets. I think every child is special in their own way and until some of us can accept that special needs child for who they reallly are our some parents lives will remain in turmoil.

Some parents need to wake up and accept the reality of what their life really is and not compare their lives to others.

Do not feel guilty about what happened to your child. It's okay to get angry, it's okay to cry but at the end of the day you just have to hold your head up, give your child a warm loving hug and things will get better.

I would also like to say this is especially about violence, up until puberty of my son the idea of care would be abhorrent even with all his needs but nothing prepared me for the violence, the fear of my DS2, the guilt for my other DCs, the guilt when he is violent at school. Violence is often brushed under the carpet, parents withdraw and hide their bruises and feel shame. Having a violent disabled child is a complete different experience.

Most of the time people will say to you I feel your pain, or I understand what you're going through but honestly it is wrong to say that because until you find yourself in that situation you don't really have a clue.

No we probably don't have a clue, but it isn't wrong to have some empathy, show support or have some kind words.
Most of us haven't been in this situation, but we are human, know how it feels to feel hopeless, distraught, lost, frustrated sad and all the other feelings that are common is situations that overwhelm us.

So we can feel empathy for the OP, and others in similar situations. Which I do. - because I am a fellow human being.

OP

Not sure if you're already doing this but having video recordings and photograhic evidence of what happens duiring your son meltdown can help you to get the right help for you and your family.

Most of the time when children are at school they are well behaved until they get home then they explode.

If this behaviour is not shown at school then professionals will not take it seriously and instead brush it off.

My previous message was not to make anyone feel bad but to show the reality of what life is.

You speak a lot of truth @Boulshired my son is only ten and tiny for his age and is no where near puberty he can be aggressive but main!y pinching and biting God knows how violence will manifest itself as he gets older ,but I just get frustrated at posters who clearly have no idea of what it's like to have a child with severe learning disabilities saying they couldn't cope and would just put their child into care ,it's just such a massive decision and what ,s the right decision for one family isn't the right decision for another .

x2boys I completely understand, I do not know your circumstances but what I can advise is ensuring you get respite into place now. Unfortunately I have seen families destroyed trying to get residential school as of course that is most parents choice rather than care but depending where you are determines the fight. But my council will not even entertain the idea until they have exhausted respite. It’s a game I do not want to be playing and I am still not ready to admit residential is the only option but I know that I have to be prepared. I want to be able to have input into what happens to my son and to do that I need the evidence of need and the mental health to fight.

Hello, I just wanted to say stay strong, you will get through it, you need support.
My son is 10yrs old with severe learning difficulties, he is non verbal. It has taken its physical, mental and emotional toil on me raising him. Please reach out to family, friends and Social Services ( for a Carers Needs Assessment of your family). Raising a child with a disability is very hard and impacts all aspects of your life. Its completely understandable the range of emotions you feel, from anger and resentment, the violence towards you is unfair and you need respite and help to get you to a better place.
Stay strong in yourself and you are not alone

My son is 25 now. He has severe learning difficulties and autism. He has also had very challenging behaviour for many years. He lives in supported living now and he is the only service user in the house. There is a main carer who is there 24 hours a day and another day care staff member. Normally there is a main carer handover once a week but for the first 6 weeks during lockdown, one main carer locked down with my son for all that time. When I face timed with him and my son, the carer looked completely exhausted after a couple of weeks. He was not coping. He struggled and gradually he was starting to be neglectful which made things worse and he got pulled out.

I really feel for you OP. You have this huge struggle but not the luxury to just walk away from this. It is tough enough during normal times coping with caring for your son, but trying to do this during lockdown is a huge challenge and no-one can blame you for how you are feeling right now.

It was so hard bringing up my son from about the age of two. He was hyperactive too and would never sit still. Always on the go. My parents had to lock all their ornaments and valuables away in a room before we visited as he would constantly grab any object within arms reach and throw them. I had to hold on to him constantly if out anywhere for his safety but also to prevent disruption to others. He was very loud when out in public. Doing anything at home such as cooking a meal took three times as long because of constant interruption. He would be awake often during the night and up early in the morning. It's really hard to create a picture on here of how difficult it was. This was not just being a difficult toddler. He has been a difficult toddler for 25 years! There were times I wished he hadn't been born and felt awful for thinking that. There is a lovely side to him though. He can be quite sweet and fun and he laughs and smiles alot.

He went to a special needs school from the age of 4 which was a big help. My wife and i split up when he was 6. He stayed with me most weekends and alot during the school holidays. I don't think the school did much to develop any independence skills. He was still in nappies until he was 12. He came to stay with me for 3 weeks over the summer holidays and I was determined to train him into going to the toilet. I bought him lots of cheap underpants from primark and trained him and within two weeks I could take him out without nappies.

As he got into his teens, the aggression came along. He became too much to handle and his mum got him into a residential special needs school. He came home every other weekend and during the holidays. His time was split between coming to me and go his mum but also he would go to respite centres either for a day or a couple of nights. When he got to 18, he was getting more aggressive and I had to call the police on one occasion when he smashed my house up and was punching and kicking me. His mum also had to call the police a few times. He was given medication to try and control his behaviour. When he left school at 19, he went into residential care. The first care home he went into was with 5 other service users. Last year he went into the home he is now. It has been challenging for him during the pandemic and he has smashed windows in his home and been hitting his head against a wall and breaking other things in the home and hitting the staff.

Im too old and not in good health and would not be able to look after him any more. I really feel for you OP with how tough it is for you. This is such an awful time to cope with what you're having to cope with. If you want to talk about anything, please PM me if you want to

Hi op were you able to access some respite? I hope you were able to some support.

Oh I feel you. I'm on stage when I decided the only way for our family is to place my daughter into residence care... can you let me know how are you and how is going now? I contacted social worker but they are not helpful. They actually said my daughters need are fulfilled so they don't see why would they place her somewhere else and I should think about consequences about it because if I will say I cannot look after her anymore why would they think I can care for my son ... I'm lost. The difference is my daughter is walking "disaster" like she constantly breaks things around like furniture, toys, walls etc, she is screaming day and night, she kicks, bits, pinch, scratches, slaps herself and us, she pulling her hair out and banging her head over the concrete, walls, floors .. how that can be compare with healthy full of you little boy... I cannot handle it anymore... I just burn out and I can't see myself doing it anymore...

@MotherOf2children - I would start your own thread as after 2-3 years the OP is unlikely to return. I am a mother of a DD with complex needs and amazed your social worker said that about your ability to care for your son - you need to complain and need a new social worker. No matter how hard it is you cannot just say 'she has to go into residential care' but you can demand (and loudly in writing) the need for more help. People on MN and on this thread often think that you can insist on residential care - you can't but they will (if pushed) help with other things.

Agree i was on this thread and tried to.tell, posters its not just as simp!e as requesting a,residential.school.,there are lots of factors to be considered and ultimately it has to be agreed by all.its in the child's best interests
Yes social workers can help.with respite and our respite which was one day a,week in the school.holidays at a special needs plays scheme has increased to one day a,week in the school.holidays and every other Saturday at the same scheme
It has also been agreed for two night ,s a month overnight respite ,although
That unfortunately hasn't materialised yet due to.lack of staff and recruitment so unfortunately social.workers can only do so much.

@x2boys
We are in a similar position - we have a good social worker who gets the support plan agreed and funded but there are no carers. We got direct payments but no one to employ - We now have an agency.

Yes it's a totally different world now - there is no residential on demand no matter how desperate you are. However my ds (19) is about to move into supported living soon so it can be done but you must start early and make it very clear to Social Work that you will not provide care after age 18. It sounds harsh to those who do not understand but it's the only way. Mobilise everyone GP, CAHMS, School, Councillors around your case - not easy but keep going. Make it clear that you will not 'compromise' on a stay at home care package as we all know where that leads - not enough hours and no staff available anyway. Also make it clear that it's about your child's needs - that you cannot do for him what a full support team can do. Your child has a right to a stimulating and enjoyable life no matter how disabled - and you as age stressed parents cannot provide that.

Also about the social worker's comment. I would ignore it for now but if it is mentioned again, you should clarify with her that your concerns are to have your disabled child's needs met and that these needs far exceed those of a typically developing child and that this has no bearing whatsoever on your actual parenting skills. Point out that you or almost anyone could look after 10 typical kids a lot more easily than one with complex autism

You can get residential care. DD has been in a residential care home for the last 5 years. There are around 120 people where she lives. It depends on the circumstances.