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AIBU?

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Original poster

The year of abandonment,because it's all too uncomfortable

47 replies

WhatAMum01 · 07/11/2019 22:06

This year has been horrid for many reasons, the crap has been thrown at me from all angles.My son has severe Autism and learning disabilities and is extremely hard to look after.He is very destructive as well as non verbal and a kid who screams day and night.His behaviours have gotten worst as hes got older.Its destroyed me.My dear son has the type of Autism that people dont talk about,not the genius or quirky type.When diagnosed 2 years ago friends family were supportive and promised all sorts of support and reassurances.This year I've noticed everyone back off from making an effort with us ,theres been next to no invites to social and family events no invites out with the girls as they know it's near impossible to get a special needs sitter,and my family and inlaws point blank refuse to help out.i feel like my circle has got so so small,along with it I feel like I've become so small and inconsequential.i feel so lonely ,so so lonely.i know everyone has their own lives but these are lifetime friends and family I'm talking about. My mum is my biggest heartbreaker.Said she cant do any more for me,says my son is too hard for her to look after as shes too old.i read something today and it's so true

It's been years since I spoke with you but my heart has conversations with you everyday.

It's how I feel about all my friends and family slowly giving up on me because my life is too uncomfortable to watch and I haven't got any nice new exciting things happening in my life.

OP posts:
ChazsBrilliantAttitude · 07/11/2019 22:16

I am very sorry that the people who should have stepped up have instead stepped back.
Flowers

It sounds like a really tough year. Do you have access to any support eg from a charity where you can talk to people in the same position?

I might be a stranger on the internet but I care.

Hohofortherobbers · 07/11/2019 22:25

This sounds so difficult for you and I am sorry that you are so isolated. You don't mention a partner or your sons father, is he around? Is his family around? Do you have a sibling or best friend you could show your post to?

1Morewineplease · 07/11/2019 22:26

Oh my lovely... I’m so very sorry to to read your story. Are you involved with the National Autistic Society ? They will be able to put you in touch with a local group. They are amazing.
I understand that many family members find it difficult to deal the level of autism that you’re talking about. I’m assuming that your child has sensory needs. You might need to introduce family and friends to a more sensory approach with your child. Please get in touch with NAS... they have many articles and strategies which may be of great strength to you.

Throckmorton · 07/11/2019 22:27

Bloody hell, that's grim for you - massive hugs. Would if help for people to offer suggestions, or is just hugs and sympathy that you want right now? If so, hugs, cake, wine, tea and gin, although not all at once.

Original poster
WhatAMum01 · 07/11/2019 22:27

@ChazsBrilliantAttitude
Thank you for being kind.im a member of some online support groups as I cant get out much.they do help but also bring me down too when I hear from folk who have been doing this longer than me. I am more than a mum of a disabled child,it feels like everyones forgotten.

OP posts:
Throckmorton · 07/11/2019 22:29

Are you on any groups just for you? Even if it's just a Facebook group for your local area when you can chat about the weather with people just as yourself, not as a mum?

Freya222 · 07/11/2019 22:31

I’m sending you a hug OP. I have a child with a similar level of disability and behavioural issues and I totally relate to the situation and feelings you describe. No answers, just know how very hard it is Smile

Original poster
WhatAMum01 · 07/11/2019 22:31

@throckmorton I'd like it if someone just said let me take him ,have a day off you deserve it.id like it if family said this and then said we dont care if hes so hard to look after,because we love you and him.
The wine, cake and hugs would be wonderful too.

OP posts:
Original poster
WhatAMum01 · 07/11/2019 22:33

@freya thanks,I feel for you and every other family doing it alone.do you have support from friends and family?

OP posts:
Throckmorton · 07/11/2019 22:35

It's not the same I know, but supportive virtual wine and cakes and hugs over the internet. Can you talk to social services about respite care? Not as good as family or friends offering I know, but would maybe give you a break to be yourself for a bit

Hellofromtheotherside2020 · 07/11/2019 22:46

Can you perhaps speak to social services and enquire about respite care? My two brothers were autistic (the type nobody speaks about), my parents were offered respite care each year for a weekend. There were also special needs clubs for them (parents and brothers) to attend. One in particular was an afternoon art club for the children to attend, during that time, mum used her time to catch up with her circle of friends or just take time out.
Hugs x

ChazsBrilliantAttitude · 07/11/2019 22:52

Is there something you enjoyed before your DS’s diagnosis that you could pick up again and follow up online. Reading, art, crafts etc.

Time40 · 07/11/2019 22:55

OP, that sounds unbearable. I don't know how anyone could survive in your situation. To be honest, even you were my friend and I loved you, I wouldn't offer to look after your DS, even for one day, because I know that one single day would leave me on my knees. I wouldn't be able to cope - so I don't think the fact that your friends and family don't offer doesn't mean that they don't care. I think it means that they know they can't do it.

Have you considered telling Social Services that you need your DS to go into respite care for a while, because you are at breaking point? If you got respite care, you would be able to see people, and catch up on your life a bit. I think you need to get some help, anyway, because if you go on like this it will kill you.

Good luck Flowers

Original poster
WhatAMum01 · 07/11/2019 22:57

@Throckmorton @Hellofromtheotherside I've always avoided social care, always thought they'd be more hassle than they are worth,I mean one weekend out of a year really doesn't feel help worthy of inviting social workers in your life.respite is woeful,I'm not surprised that parents like me end up burning out.

OP posts:
Original poster
WhatAMum01 · 07/11/2019 23:44

@Time40 you're saying you couldn't cope and my friends and family might feel they couldn't cope.....but fricking hell I wasn't and still am not an expert on severe Autism and I handle it best I can,surely if you love someone youd help,you wouldn't just sit back and say pfftt dont know how she does it but I'd never help her!I dont get not helping someone you're meant to care for

OP posts:
Ilady · 07/11/2019 23:48

Your situation sounds unbearable. I would contact the national autisium association and see if your getting any benefits your entitled to.
You need to contact social services and ask them about respite care as you need a brake. Has your child been seen by their doctor or consultant recently?
Is your child on any medication to help them?
You need to contact your doctor and social services and ask for respite because you need it. The reality is that if you don't get some help you will end getting sick. You need to tell your family that you need their help. If they could mind your child for even 3 hours once a week it would give you a much needed break.

BouquetOfRoses · 07/11/2019 23:51

Lease reach out to professionals for help Thanks. How old is your DS? Is he in education/childcare at all?

Original poster
WhatAMum01 · 07/11/2019 23:58

@BouquetOfRoses I've asked the gp for help and his pediatrician they said theres no respite on offer where I live.hes 5 at a sn school but struggling there

OP posts:
Apackoflips · 08/11/2019 00:05

You say this was worse from diagnosis. Did anyone help you before diagnosis? I ask because maybe they are picking up signals from you that somehow the diagnosis made things worse when really thats not the truth.
I agree with PP about friends not helping. Its not that they dont want to exactly but possibly more that they dont know what to do. I would be scared of looking after a friends DC with any disabilities if I took time to consider the problems.
And I say this as person who regularly looked after a severely disabled relative who was brain damaged at birth and was very hard to deal with. But I did it without a thought and looked after her well. She wasnt scary and I coped.
Ask me to do the same with another child and I would demur as I am not sure of my capabilities. I would probably be more afraid that I couldnt relate to the child and anticipate their needs properly. I would not want to do a bad job you see.
I wonder if you could persuade a couple of friends to be in your home on a longer visit so that they can see your child is not so frightening and they can help?

TinklyLittleLaugh · 08/11/2019 02:27

You know, just by you posting this, someone, somewhere has thought, “Hmm, perhaps I should be helping my sister/daughter/friend out a bit more.”

Your life sounds very tough and I hope things get better for you.

Nat6999 · 08/11/2019 02:36

Have you tried your local council for a short break grant? You don't have to use it for a holiday, it can be used for you to join a gym or some kind of hobby to give yourself a break, or pay for some alternative care for your child so you can rest. Also look at the Family Fund, they can give grants for equipment, sensory stuff for your child, or something as simple as a new washer.

BouquetOfRoses · 08/11/2019 02:38

Would a teacher or TA agree to babysit occasionally?

AbsentmindedWoman · 08/11/2019 02:45

I really feel for you, and I am so sorry you do not have supportive people around you.

I don't have a child with autism, but years ago I had a very difficult time, and I remember thinking (like you have said) that people found it uncomfortable so they backed off. It was very hurtful and I felt very alone.

So although I can never understand your situation as a mum of a child with significant special needs, I just wanted to offer a handhold because I do understand loneliness and struggle.

sam221 · 08/11/2019 02:54

I am sending you virtual hugs,wine and chocolates. I have a distant relative with a child who is non verbal, severely autistic and their life is difficult. The school referred them to social services, as the poor child hated showering and smelt. Social services have actually been very helpful for their family, they now have a weekend carer. Holiday clubs and after school care. The system isn't perfect but even a few hours of help, has made a difference.
Don't dismiss social service, they do try to help.

AwkwardFucker · 08/11/2019 03:10

To be honest, even you were my friend and I loved you, I wouldn't offer to look after your DS, even for one day, because I know that one single day would leave me on my knees.

I mean.. really? That one day may be not very nice for you, but that would be your loved ones every single day for the rest of their life. At the end of that one day, you could go back to your regular life while that person you claim to love goes back to that day that would “bring you to your knees” forever. I have no idea how you could claim to love someone and not want to give them one day out of your life. It might be a very hard day for you, but it would probably mean the absolute world to your loved one.

I look after my friends Autistic teenager sometimes. She’s pretty easy to care for but she does need nappy changes. It’s not pleasant, or fun, but I know it means the world to my friend to have someone to count on. It’s not my life, I don’t have to change someone’s nappy who’s bigger than me every single day, she does. If I can take away a few hours of that for her, you bet your ass I will do that.

There but for the grace of god go I...
It could have easily been any one of us to have a disabled child. It’s pure luck if you do not. And if it were me I know I would be beyond grateful to have friends and family who could help, even for a day.

Hugs to you OP.