To find it so hard to accept my life?

[Defeatedbylife]

My son is disabled, no chance of an independent life ever.Today im finding it so hard to accept.Im finding it so hard to watch other families around me planning trips, taking their kids to different places having fun with them.i cant enjoy my kids because of the restrictions my disabled son has put on all our lives.my son hates being outside and screams non stop after a few minutes, doesnt matter where we go,theres no calming him.ive tried everything, ive lost count of the amount of times weve drove somewhere as a family and drove home within minutes of arriving.ive lost count of the amount of times ive wiped away my other kids sad and frustrated tears.six long weeks of being cooped up indoors lie ahead and i feel like climbing into bed and never getting out.im so jealous of everyone with a normal life.
Not looking for anything by writing this post,just had to get my feelings out.

Are there any residential care homes available where you are? You do have other children and you owe them a duty of care and a mother who is involved.

@Twinmammaplusone

Hi *@Defeatedbylife* I’m so sorry things are so hard. I knew before I opened the thread what this might be about. I had a severely ill baby and felt the same as you for a long time. I longed for normal and some time off. I have no advice but wanted to send a hug from someone who understands. Can you pay privately for some respite help?

I too knew what this thread was about before I opened it as I feel the same. Can you get hospice support in your area for respite? Do you have a sen social worker who can assess you for care support needs? So sorry op. I truly know how shit this all is.

Hi, I'm sorry things are so tough.

I think you need to ring your social worker if you have one, or phone your council and ask to speak to one (the out of hours one if you need to). Tell them you need 24 hours of respite a week (or whatever you need) else your family is at risk of breaking down. Demand the needs assessment that you are entitled to. If you are not hapoy with any decisions complain and appeal in writing/ officially and strongly. Ask about the options for a residential school place.

I think there is help out there but unfortunately people have to fight hard for it and it's hard to access help while you are "coping".

I’m so sorry, OP. This sounds incredibly difficult. I haven’t walked in your shoes so I don’t have any advice to offer but I wanted to offer a handhold.

Are social services involved?

@Winter2020

Hi, I'm sorry things are so tough.

I think you need to ring your social worker if you have one, or phone your council and ask to speak to one (the out of hours one if you need to). Tell them you need 24 hours of respite a week (or whatever you need) else your family is at risk of breaking down. Demand the needs assessment that you are entitled to. If you are not hapoy with any decisions complain and appeal in writing/ officially and strongly. Ask about the options for a residential school place.

I think there is help out there but unfortunately people have to fight hard for it and it's hard to access help while you are "coping".

This. Your other children need it, and you do too.

This sounds so so tough. Is there any chance you could find him a residential home place? I wish you and your family luck, I hope you find a way through OP

I’m so sorry OP. I’m in a similar camp with my ds (he’s my 3rd of 4)

Have you had a carers assessment from the local council?

One thing that has helped us is registering the older children with the young carers Organisation. They get treats and (in normal times) trips out. They have zoom quizzes and parties and it’s something just for them. They were actually given the laptop from young carers.

I’m so sorry OP.

I’m sorry OP. No real life experience but I can only begin to imagine what this must be like - you are not unreasonable to feel like this. Looks like you have some good advice here, easier said than done but please make time for yourself to do something that you enjoy

You've been given some excellent advice from PPs. I truly hope things improve for you. Sending hugs

Could you ask SS about Link Care. That's what my ds2 had. A married couple took him for respite care for several years. The lady is still alive ds2 calls her Mummy 2.

You really do need more help. Have you tried relevant voluntary agencies? Have you knocked on the door of Social Services?

As a society we fail people in your situation because we do not recognise the toll that is taken on parents and siblings. I have been involved in the battles to get help for my nephew in similar circumstances and it really is like banging your head against a brick wall. It should not be like this no-one ion your circumstances has the energy to fight these battles.

Try SSD - if no go, then contact MP. You must be given some help - respite care etc. MP helped us.

@GeorgiaGirl52

Are there any residential care homes available where you are? You do have other children and you owe them a duty of care and a mother who is involved.

What an unnecessary and unpleasant comment.

You need more respite. The only way to get this is to tell social services that you are about to have a breakdown and need to place your child into foster care.

They will do anything to avoid this as they won’t have any foster carers who have the relevant skills and they will have to go to a private agency whose carers will be very expensive.

Don’t waste your time appealing to social services about the needs of your other children. They don’t give a stuff ( that’s putting it politely ) . All they care about is their budget.

...for you.🌈
Try not to look at other families and compare them you yours,appearance can be deceptive and those perfect looking families likely have their own problems too.
Two hours is not near enough,there's been some excellent advice on here so I hope it will come to getting you as much help as possible.Take it all,never feel bad about asking for help,you absolutely need it.
Best of luck.🌈

It's very difficult.

I have a severely disabled dd who has many health conditions and I have 4 other children and always have that guilt feeling like all parents /carers of disabled children.

I'm in a different country than you but I do understand the lack of services and help available. People not in the know think it's as easy as picking up the phone and making an appointment to get help. I'm sure you've done everything, that's what we do, fight.... I'm 4 years waiting on respite, we're only looking for one night, it's to get dd use to staying overnight in the unit before we need it more, as I have a fatal disease and I don't have long to live so I need to know before I get bad and die that this is in place.

Is your ds on any meds? The reason I ask is because dd is on alot of meds, she has 2 types of epilepsy and her combo changed as she was having more seizures and it turned out the new medication did not agree with her and caused aggressive behaviour, we had to wean her off it and onto another one which took nearly a year so we had a full year of bad behaviour. It wasn't her, it was the medications. We find this happens when a medication is increased as she grows or one changes or is added.

The thing we try to do or at least did when all the kids were younger was work days out around what she liked, she would nod off in her wheelchair and that's when we'd go for food or do something the other kids liked. We're different as dd likes being out so I don't have it as bad as you where your ds doesn't like it.

It's difficult, it's tiring and people will always try offering advice but sometimes all we just want is to vent without feeling judged. You aren't failing your other kids, you are all adapting to a different life than what you planned or imagined and while it feels we are neglecting them it's usually the other side of the coin, and we over compensate trying to make it up to them.

If you have a liason nurse maybe you could have a chat and tell it how it is, we do tend to smile and say we're fine but if this is a possiblity it could be the start of the ball rolling into getting you help.

I have an adult disabled DS and life was pretty grim when they are younger, it is absolutely draining and there's very little understanding and an awful lot of judgement from others. I can't imagine how much worse it would have been during a pandemic.

DS went to residential special school when he was 11, which was brilliant for both of us - he had specialist staff 24/7 and a group of peers, and I was finally able to focus on my own needs, at least during term-time. He has left the school now and is home all the time, but although he needs support, it's no longer constant as he does have some life skills. So I would definitely look into the option of residential school. Our LA funded it through an EHCP.

Any chance you could access local shared care or similar? It's short term foster care, free to parents. I am a shared carer, I get my expenses paid, not really a salary. I take one severely learning and physically disabled teenage girl for one weekend a month. Also please look into residential care for when he is 18 plus if not now. You owe it to yourself your son and the rest of your family. There is nothing worse than it happening unplanned when the parent becomes ill or passes away xxx

OP it sounds so so hard and I think anyone in your situation would find it difficult to accept.
Are you in any support groups at all? In contact with people who might be able to advise on how to get more help?

I have a friend who has a child who will need lifelong care, I would absolutely help if she needed it even if was to do practical things. Please reach out to people.

Are there any residential care homes available where you are? You do have other children and you owe them a duty of care and a mother who is involved.

What an unnecessary and unpleasant comment.

Personally I found it neither unnecessary nor unpleasant. Sometime residential care is the best option, for everybody including the disabled child.

Oh bless you @Defeatedbylife

I always read threads like this with a heavy heart. DC3 has a rare genetic condition, is registered disabled, will never live independently and has / will have a whole host of physical and emotional difficulties as she grows. It's taken me a long time to grieve the child and life that we now won't be able to have.

Thankfully I have a good support network and DC's needs are currently manageable but I know we face many challenges and battles and I know that I won't always feel strong and positive.

Please reach out for anything and everything you need. There have been lots of suggestions (sorry it's all still quite new to me so I'm not sure of exactly what help is out there for you)

Tomorrow is a new day and I hope it brings you a little more hope.

Never could I have imagined the life we are all now destined to live, but we'll muddle through x

Get in touch with local council about their young carers support for your other children.

You may not be able to do things as a family but this may help you feel less anger and frustration so they can still do things with other kids like them.

I know it’s not much but short term it may be the little help your other kids need

for you @Defeatedbylife you are not failing. You are doing the best you can in exceptionally difficult circumstances. You couldn't have known things would end up this way.

Do you have a partner or parents who could help? Perhaps not with your disabled child but by taking your other children out? I know that you would love to go with them, but at least this way, they could go out.

I have no doubt you have already explored support options but,as someone else said, please get in touch with your social worker and emphasise that you are on the verge of a breakdown and need more help. Let them know that you simply cannot manage anymore. Unfortunately, ime, councils will do as little as they can possibly get away with so don't be afraid to really stress how you feel.

Longer term, residential care may be worth looking into. Caring 24/7 for a person with severe disability is hideously difficult and there is absolutely no shame in seeking a residential place for them.

@Beancounter1

Are there any residential care homes available where you are? You do have other children and you owe them a duty of care and a mother who is involved.

What an unnecessary and unpleasant comment.

Personally I found it neither unnecessary nor unpleasant. Sometime residential care is the best option, for everybody including the disabled child.

You're missing the point. This: You do have other children and you owe them a duty of care and a mother who is involved.

...is fucking unpleasant. What do you think sen mums are doing? And that is breaking them.

Where are you OP? I assume Scotland if you haven't broken up?
I worked in a ASN school and a lot of the teaching assistants looked after kids out with school. Private arrangements with the parents. Could you ask one of them?