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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

To find it so hard to accept my life?

130 replies

Defeatedbylife · 26/06/2021 19:42

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.

OP posts:
Ihaveaskedyouthrice · 26/06/2021 21:58

I understand how you feel. My oldest son(9) has alot of special needs and is getting more and more demanding. We're facing into 9 weeks of summer holidays and I know it's going to be a struggle. My 4 and 6 year old want to do days out etc but I just can't manage the 3 of them on my own. My parents used to help but they're getting older and DS is just gone too physically strong for them to manage. I put his name down for overnight respite recently and was told the waiting list is 4 years 😭😭(I'm not in the UK).

I do despair sometimes when I think to the future. There is no likelihood of my DS ever living independently and where I am supported living or the likes aren't really a thing until the parents are too old to manage any more.

Rosebud100 · 26/06/2021 22:06

Sending you hugs, it sounds super tough. Support for sen parents is such a joke ☹️
My autistic son is 3. He's reasonably manageable now, between me and my husband at-least, but I'm still so sad for the life we have versus the life I'd hoped for and lockdown easing is just showing even more clearly how different things are for us. Everything is such hard work with him and I just dread the future 😞

NoProblem123 · 26/06/2021 22:07

No advice only hugs and best wishes Flowers

Is he any better with cans or earphones on ?
Or with a screen ?

IceLace100 · 26/06/2021 22:09

You sound like a wonderful mum who wants the best for all your kids.

Sending love ❤️

crochetcrazy1978 · 26/06/2021 22:11

This is very similar to my situation with my son. I told social services that I just couldn't cope anymore and they gradually increased his care package. He's now in residential care 4 nights a week and it's made a huge difference.

In the years before he had this care I met other sen mums via local groups run by charities and it made a massive difference to my mental health. Didn't feel so alone

I totally get you when you say it's impossible to go out and how that impacts on the other children. I got my daughter involved in young Carers groups and a group for siblings of a child with disabilities. These were fab for my daughter. She met other children who understood what it was like for her and they also did lots of excursions and day trips with them so I felt less guilty and she was getting out and having fun

Big hugs xx

Pinot4evs · 26/06/2021 22:16

@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.
This.
HarrisMcCoo · 26/06/2021 22:16

DH and I just had an argument this evening about me always bleating about how tough it is with youngest two having additional needs. DH just can't stand hearing it all over and over. We have older DC too and I feel they miss out at times. Seven weeks of this.

OP I hear you 💐

Omemiserum · 26/06/2021 22:16

If you haven't got a social worker did you know that you can refer yourself to Children and Families? You may then be able to get some respite in place. Someone I know did this and gets about 24 days and nights respite per year. Really helps when you've had no let up.

Original poster
Defeatedbylife · 26/06/2021 22:19

So much helpful advice and kind words, reality is ive knocked on all the doors and bottom line is unless i request residential im pretty much on my own.i just couldnt.i wish there were centres open to help with cares of special needs kids that you could pay for at reasonable costs which parents could use and be supported at.im existing not living,the only thing i look forward to is being asleep.

OP posts:
NeverNotChasingDreams · 26/06/2021 22:35

I'm so sorry, OP.
Is there any chance of social services finding respite foster carers for a weekend or something?
It must be very hard.

RelaxedRed · 26/06/2021 22:39

@Defeatedbylife I read your post and knew that you would have already been knocking on all the doors.

I want to post something that recognises you as an individual person. I’m not sure what to write. When sleep is the only thing you look forward to it’s time to go back to the GP. Talk to someone about coming to terms with a life unexpected. Whatever the future holds for your child you need a leg up right now.

Thewiseoneincognito · 26/06/2021 22:40

I’m so sorry OP, I don’t have much to offer only please take some of the advice the other posters are giving who are in a similar situation to yours. Please vent away

Womendohavevaginasnick · 26/06/2021 22:41

It's shit sometimes isn't it. If your northern, have a look into bendrigg in Kendal area for a respite holiday x

Couchbettato · 26/06/2021 22:41

You cannot pour from an empty cup.

Get on to social services, and keep getting on to social services until they offer you more respite care.

Tell your doctor you're not coping. Tell any one who will listen you're not coping. You are not coping and that's ok to admit. It might just get you a bit more support so you can enjoy life, enjoy your children and feel more able to look after your disabled child too.

queennotififi · 26/06/2021 22:47

I'm so sorry.

You said that you couldn't do residential. You sound like a lovely mum who is trying to do everything for her children and it isn't working. Do you have anything to lose by giving residential a try (even if it is still difficult, but in a different way)?

BrilliantBetty · 26/06/2021 22:48

How old is your DS?

It would be worth exploring residential. If not for now, perhaps the future.

It isn't abandoning him to send him to a (nice) place where he can be taken care of, his need met and many facilities for him to benefit from. Week day residential might be a good balance? Your other children may need this break from their sibling too.

Supersimkin2 · 26/06/2021 22:48

Love, vent away. Get it all off your chest.

A lot of people don't have the faintest idea how gruelling and damaging severe disabilities are to cope with. Patient or carer, it's hard to tell which is worse sometimes.

Never, ever feel judged. Cos the only people who would are those who know nothing about it, and their opinion really, really doesn't count.

Maggiesfarm · 26/06/2021 22:50

I am so sorry you are feeling this way, most of us would at times in your position.

You can't go on like this indefinitely, op, there must be some help available from people who have the training and experience to look after your son. I think two days a week, maybe a night, to give you a break and so you can do things with your other children.

Please look into it, approach every care agency you can find. As others have suggested, there is respite care too.

Perhaps someone on Mumsnet will have a solution. I do hope so. I can feel your pain, it is time to put yourself first.
Flowers

Summerdayshaze · 26/06/2021 22:52

I’m so sorry. I feel very similar, except it’s my own disabilities limiting my life and my children’s lives. Would something like a residential school be an option? X

AnneTwackie · 26/06/2021 22:57

God I wish I knew you in real life and could help in some way, I really hope you’re not being brave to friends and family because I’d like to think someone else feels like I do. You sound so kind and like you’re doing your absolute best.
There’s a great little place called Children’s Adventure Farm Trust that offers respite holidays for children and their siblings, I’m wondering if they could help.

Jjjayfee · 26/06/2021 22:57

How hard for you. There is a community home for teenagers with autism near us and the staff there seem to be doing a very good job of giving the young people a quality of life. I think you need to talk to someone about how hard things are for you and also how it is affecting your other children. You need more support. You are doing as God a job as you can. You are a good mum!

Jjjayfee · 26/06/2021 22:58

good not God

omgthepain · 26/06/2021 23:02

@Defeatedbylife

My friends do respite fostering for families to give them a break - perhaps that could be something to consider but if it's that awful and is making you ill maybe a residential setting is the way forward for some of the time

I know your the mum but you need a life
Too and you need to not be feeling like this

Pls speak to your GP/ social worker/ health visitor and get something in place

Haffdonga · 26/06/2021 23:02

It won't solve your problems but try the charity Sibs might have some suggestions for your dc www.sibs.org.uk . Or is there a Young Carer project locally to you?

Maskless · 26/06/2021 23:02

You can't go on like this for the rest of your life. It would be sacrificing your life. If he's never going to progress, honestly, I think you need to place him into residential care. Sorry. Hugs. Being realistic x