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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:
Cowbells · 26/06/2021 23:05

I am so sorry. That sounds like a kind of hell. 2 hours a week is nowhere near enough.

I know you say you have tried everything and this may not be right, but have you looked at l'Arche Community?

MangosteenSoda · 26/06/2021 23:06

My ASD DS is very similar to how you describe your DC. Full on all the time, rigid, hates change and new things. It’s hard, hard, hard. I can’t offer anything other than sympathy.

I’m quite saddened by the number of posters who suggest residential care as the solution. Yes, this works in certain cases, but it’s a really personal decision, like sending DC to boarding school. It’s not a cure all, and if you’re not an SEN parent, it smacks of suggesting ‘offloading’ the problem to let the rest of the family get on with it. It’s hurtful.

SomethingNastyInTheBallPool · 26/06/2021 23:06

Another one who guessed what this thread was about before opening it.

No advice, as we’re in the same boat, but lots and lots of sympathy and hugs. You’re not alone. Flowers

Dinnertime22 · 26/06/2021 23:09

Again as someone has mentioned if the impact is on other children is huge have you considered residential care?
A close friend of mine was in a similar situation many years ago and made that decision. It was the right one for the family. It was not an easy choice to make. I am sorry you are having a hard time.

lolacola77 · 26/06/2021 23:15

Can you put him in a home/residential care? I think you need to before everything falls apart

stayathomer · 26/06/2021 23:16

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.
Same here and I hope you're talking to people in real life and letting them know how you feel. You sound like the loveliest mum, and all of your kids are so lucky to have you. Just huge huge hugs

GreyGoose1980 · 26/06/2021 23:18

I can’t offer any relevant advice OP but I just wanted to send a hug xx

Dobbyafreeelf · 26/06/2021 23:21

Where abouts in the country are you OP?

Honey12346 · 26/06/2021 23:27

I truly believe residential care is the answer

DeedledeDee · 26/06/2021 23:29

Totally understand,. I'm a carer 24/7. to bedbound daughter.

Me and DH have been looking after her with no respite 5 years.

We nap when she naps, it's exhausting.
Meals are interrupted,so are coffee breaks. We go walks separately as someone always has to be here.

This comes after 20 years of looking after 2 other learning disabled daughters who did get some help but both were excluded from school and we were outcasts because of the girls behaviour.
Finally they're now 22 and 23 and living independent lives with help.
Just when we thought we got our lives back the eldest daughter who is 31 became physically disabled.

Blue4YOU · 26/06/2021 23:30

Hi OP.
I hear you.
You are not to blame, just for wanting another child. Absolutely in no way.
I have a seriously disabled DD (physically and mentally). I am married and she’s my only child (our first DD was stillborn).
I have never had a moment relief from caring for her (she can’t walk but tries to, is full of beans, awake most of the night, very sweet but prone to body slamming and biting me from frustration - she once burst a blood vessel in my eye!).
I’m lucky she can go to nursery a few times a week. I struggle not to just sleep when she’s there.
She gets ill frequently and it disrupted so many plans.
She also hates new toys, new places, new routes (car or walks).
I don’t know the answer but for me I’d not be able to consider residential care (and she’s only little anyway) and I’m hoping for a lot from school.
Have you been in touch with Homestart- they may be able to do something for the other children.
You didn’t mention other family- can they get involved (my side live abroad and my DH’s side best left not discussed).
Pm me if you want to talk

Original poster
Defeatedbylife · 26/06/2021 23:33

Mangosteen
"quite saddened by the number of posters who suggest residential care as the solution. Yes, this works in certain cases, but it’s a really personal decision, like sending DC to boarding school. It’s not a cure all, and if you’re not an SEN parent, it smacks of suggesting ‘offloading’ the problem to let the rest of the family get on with it. It’s hurtful. "

Yes yes and yes,if i could i would have, long ago.i cant,i just cant.hes so vulnerable, he has no voice,like a baby in a almost teen body.think if this was your child,could you do it as easily as saying it is?

OP posts:
Gemma2019 · 26/06/2021 23:38

So many people suggesting residential care without realising how incredibly difficult it is to get or how long the process takes. Also it's a very personal thing to send your children away - they might be very disabled, disruptive to the family and a total nightmare but you still love them immensely and feel fiercely protective towards them. It's an agonising decision to send your child away, particularly when they are non verbal and can't speak up for themselves so you have no idea what is happening to them when they aren't with you. It's not like rehoming a dog, like people seem to think.

The OP is at breaking point now, so the suggestion of a long drawn out fight with the local authority for a residential place is probably a bridge too far at the moment. Plus the well meaning people telling the OP to tell the authorities that she is struggling, as if the LA is some sort of benevolent Santa Claus figure handing out help and assistance, have no idea about how the LAs actually treat parents of disabled children.

Willwebebuyingnumber11 · 26/06/2021 23:38

@MangosteenSoda it made me really sad too. I could never even consider residential care for my child. He is my son and I will not get rid of him to make life easier.
If he doesn’t have me then who does he have. Nobody will love him like I do, care for him like I do, understand him like I do. If his own mother doesn’t want him, who bloody will.

He is so vulnerable and loving and needs me. I cannot imagine packing him off because his disabilities, none of which are his fault, make life less straight forward for the rest of us.
He might make us have to think and plan harder but he is amazing and also brings so much positive to our lives.
I don’t think parents who don’t have children with disabilities really get it.

Doodlebug71 · 26/06/2021 23:39

The poster who says that mu has a duty of care... how tone- deaf is *that?

Otherwise, those suggesting residential care: you have no idea what you are proposing. Pack the kid off to a mental health unit or equivalent. That means fighting to get them back out again. inews.co.uk/news/health/autism-learning-difficulties-locked-unit-mental-health-mencap-271626

Willwebebuyingnumber11 · 26/06/2021 23:40

I can’t even send my son on transport to school because the thought of him going on a bus with complete strangers breaks my heart. I can’t explain to him who they are, where he is going and why I am not there and he can’t ask me any questions or talk to me about it so it isn’t happening. He would be so distressed and heartbroken and even that, never mind residential care!

Willwebebuyingnumber11 · 26/06/2021 23:41

OP where in the country do you live?

bellsbuss · 26/06/2021 23:47

As hard as it would be to do it , would you consider a residential school for the sake of your other children. My friend has just had to do this as it was impacting on her other children's lives too much. She was worried about being judged but I said to her I don't know how she managed for so long and there would be no judgement from me.

thinkingaboutLangCleg · 26/06/2021 23:50

Sending you hugs and sympathy, OP. Life is so randomly unfair to some people. I hope the suggestions here can bring you some help. Flowers

Opalfeet · 26/06/2021 23:53

@Defeatedbylife I have no advice and nothing to add I am afraid. I'm sorry you are going through this. It is not your fault though, this could have as much been your first baby, as it was you last.

junipertree2 · 27/06/2021 00:11

Could someone mind your son in the family home while you go off with your other kids for the day? Assuming he is autistic, isn't he entitled to help with care?

You cant possibly be expected to cope with this alone.

NoTruckWithFrontedAdverbials · 27/06/2021 00:17

How old are the other children?

Stillfunny · 27/06/2021 00:17

I have a severely disabled cousin that my Aunt eventually had to send to a supported residential placement as she herself was now quite elderly.
The whole family agonized over this decision as they too , felt like they were abandoning their child . However , the nature of her disability meant that as long as all her needs were being met , she was actually very content and happy to be part of her " house friends " . The family realised that they had been projecting all their own fears .
Perhaps you and others might also think differently as to what residential
care can provide . I know that this particular home offered short weekend visits for quite some time before she became a permanent resident . Just wanted to relay this as positive outcome .
Nobody , unless they have a disabled child or teen also , can understand how very difficult life must be for you and your family. I personally have enormous respect and admiration for the many mothers that face this challenge on a daily basis. It is a disgrace in the UK at the moment that these families are left so unsupported and have to fight authorities for their children's needs to be met.

You are doing a marvelous job OP . I hope you will get the support that you deserve . Flowers

notapizzaeater · 27/06/2021 00:22

2 hours a week respite is rubbish. You need to ask them to reassess. If you're too tired to fight get in touch with your local Carers service, they can advocate for you.

Blue4YOU · 27/06/2021 00:29

Will posters please stop recommending residential care?
This child can’t speak or understand why his mum would send him away as the OP said.
He’s only young.
It’s true family life as per regular families won’t happen easily but there has to be understandable reasons why people don’t just give their children away.
Would you give your young baby away if life was tough for you (understandably) and the rest of your family? No, you would not. But that’s essentially what is being suggested.
I want to cry for parents in this situation.
It’s fucking shit!
I thought I’d have support when I had my daughter. What a delusional person I was to expect that. Just give her to strangers..? Fucking hell