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

[WhatAMum01]

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.

No advice but a lot of sympathy/empathy/understanding

I have health conditions

One of the hardest lessons I have learned on Mumsnet is how quick people are to abandon friends facing ongoing health issues

Ask any person, if your best friend :

Had cancer
Became paralysed
Had a breakdown/mental health

Or anything else they would say Of Course Of Course I'd be there

But the reality is a whole fucktonne of MN threads from people seeking crowdsourced validation for abandoning friends in need and how quick people are to offer an OP excuses and justification for this behaviour with things like

"Who has time for that"
"I Couldn't be doing with that either OP"

Usually because they would and probably have behaved shittily towards someone vulnerable themselves

Evidence shows that people with CANCER lose friends in droves, showing that most people are so deeply fucking selfish they wouldn't support someone with cancer

Best believe they share the shit out of support X memes and other such crap on Facebook though. Run the Race For Life and so on.

To those reading the thread who are not in the OPs position but know someone who is, as well as sympathising here :

Phone that friend with depression
Ask that Mum from the school with the SEN child if she'd like to go have a coffee
Go visit that Auntie in the Nursing Home

And if the reality is that you couldn't be arsed shove your up your arse and stop pretending to be a better person than you are behind the anonymity of the forum

For people like the OPs lives to improve it takes people like YOU reading this post to have a heart.

Hellofromtheotherside2020 Thu 07-Nov-19 22:46:23
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
.......
That is a very good post.

OP you could have respite for more than one weekend a year nowadays but you'll have to do the legwork when it comes to researching how, where and what funding is available; I'm sure your doctor would recommend it. Knock on doors, be persistent. Please do look into it, you've nothing to lose, Whatamum.

I feel terribly sorry for your situation.

You say you're not be keen on inviting social services in, and i can understand why, but they are key here.
It's not just aboutv respite care.
They might he able to arrange a club once a week that your child will benefit from, and which will give you a few precious hours to yourself.
They might he able to arrange someone to come in for half an m hour so you can go shopping in peace or whatever you need.
Even if they cant provide services they will definitely be able to point you in the direction of voluntary services who can take the load off
Dont be too proud to ask for help.
You child needs you. You cannot afford to burn out. so you need to start off loading some of this burden now

I know someone whose DS has more severe autism - he was non verbal up until 9 or 10. He struggled in his SN school too. After a huge fight through tribunals she managed to get the LEA to fund a place in a specialist private autism school. It has made a noticeable difference - he speaks a few words now and is generally calmer.

Good for you, @AwkwardFucker, but I don’t think it’s fair (or even possible) to tell other people what they can or should be able to cope with. I used to do respite care for teenagers with profound disabilities, and had a broken nose, cracked ribs a couple of times, bruises etc. But I volunteered — I don’t think it would have been fair for someone to tell me I should be doing it, even if I also have enormous sympathy for someone who didn’t choose this for their child, either.

Calm your farm. No one is telling you what you should be doing. Just don’t claim you love the person and yet are happy to watch them suffer through every single day, and not want to take that away from them for a couple of hours. It’s literally the rest of their lives vs fuck all of your time. I mean I wouldn’t do it for just anyone, sure. But someone I love? 🤷‍♀️ I dunno how you could just stand by and not want to do anything to help. And I’m usually a pretty hard person and I generally dislike other people’s children.

Well, I didn't do it for anyone I loved. The teenagers I used to do it for were strangers to me -- well, before I started doing respite care for them. (Unpaid, if it matters.) But I still don't think 'Either you look after my child with significant additional needs, or you don't love me' is a helpful way to come at this.

People can love you and not feel able to look after your child. Maybe the OP's mother, family and ILs are completely useless and selfish people, but it's also possible her son is simply not a child they feel able to cope with. Her mother says she's too old -- maybe she is? Certainly my ILs (mid-70s) are now too frail to look after our seven year old who has no additional needs.

This doesn't help the OP, I realise, but she's better off exploring what SS can offer in terms of regular respite than being (entirely understandably) upset that the people who love her are disappointing her.

Maybe they’re useless, or maybe they’re all genuinely physically unable, who knows. I was just saying for me, as an able bodied person, I’m not sure I could stand by and watch a loved one never get a break from her disabled child, and know that it was her reality every single day, forever. I really look forward to the day my kids all become independent and move out, I imagine it would be quite soul destroying knowing that will never happen for you. So a day seems insignificant in the grand scheme of things.

And I’m not even a good person. I’m quite selfish.

Op look into the short Breaks Grants on your Local authority website. Depending on your local authority you sometimes don't even need any contact with social services to obtain it ours don't.
It can be used to pay someone else to take your ds to a club or activity. Have a read up. Also as previously mentioned family fund are great and can sometimes help with garden improvements or sensory toys even something like a tumble dryer to help cope all the extra washing.

Oh bless you, that sounds like a lot for one person to deal with. I don't have family experience of autism but I've worked within a school & college for SEN students; they had the entire range of autism and complicated needs there, from high-functioning to two-to-one care. There was the opportunity to be a residential or a day student, depending on what suited the child best. Honestly it was an amazing place and the parents were mostly very happy and relaxed, knowing that their was the opportunity to have respite throughout the holidays/weekends with the staff who take care of them on a daily basis was a huge help too. If you're in the south I can give you the details. There are many places that can help you, you are certainly not alone and there are many parents who feel this way before they find the support they need. Your family and friends distancing themselves must be difficult, unfortunately a lot of people just don't know how to deal with autism and it's easier to back off. There are many parents on this site who can help you and offer support, you're in the right place.

Know exactly how you feel OP, zero family support as my side all hundreds of miles away and his fathers while local never around as have strange priorities, were interfering and critical despite having no knowledge of autism beyond what they might have read in the Daily Fail.

I'm always amused when people ask how I cope, how does not coping manifest itself? I've not spontaneously combusted...yet...tho it does often feel like it's on the cards. Very isolated due to friends not understanding, and not wanting to be defined by my sons autism so would find the parents support groups hard as that is pretty much all we'd have in common (i'm an old punk who detests mainstream popular culture).

Mine is now 14 which comes with the challenges of being much bigger and stronger than he was. What has always helped and still does is what I call operation knacker him out. I walk him at least 5 miles a day whatever the weather.

While it doesnt work for everyone, ive found CBD oil to be nothing short of a miracle in the year we've been using it. So much calmer, less anxious and meltdowns less frequent and intense. Cutting out as much gluten from his diet has also really helped. Can highly recommend Sainsburys free from pasta range in particular.

The Family Fund is brilliant for grants, well worth checking out.

I did find the years up until he was around 6 or 7 the hardest, hoping it gets easier for you too.

Op, I think I already posted on this but just reading the last page, you have been given a lot of suggestions and they're good. I hope you try them all.

I was thinking too of Katie Price's eldest, Harvey, who has a few health problems and is autistic. He has been to an excellent school and the change in him is amazing, he's also now fairly articulate. Of course all that was funded privately which is very good for him but there are places like that available to be funded by the government if a good enough case is made.

All the very best, you've been doing so well but must find something that will ease your burden at times.

where abouts in the country are you maybe someone could have some local places that they know of that you could use - although i must admit they are getting less and less and more and more needed, I'm in the east Midlands and finding places are shutting - i wish i had the time and money to be able to invest in a center for respite for all concerned. I changed my sons school this year and i found that had a huge impact on him just being in the right setting for him it was a fight (as usual) to get him in there but there has been a marked difference since.

Please do contact social services - they are the key here. They can do an awful lot more than offer one weekend of respite. Depending on where you are in the country there will most likely be a charity for people with autism

I know this one www.autismeastmidlands.org.uk/

But there are lots of similar ones. Do get in touch with one & talk to them. I’m sure they will be able to help x

OP, you say people have stopped making an effort to invite you to things as they understand/believe you wouldn’t be able to attend anyway. Would you rather people do keep inviting you to things even if you can only rarely attend? If only to feel like people do want to see you/feel involved/hold out for the one in ten chance you can go along?

If so, tell them, please. They may think they’re being kinder by not constantly putting you in the position of declining invitations or reminding you of what you can’t do. But they’re not mind readers. Tell them what you need. They may step up, they may not, but at least they will know how you prefer them to handle this.

@ValleyClouds wow thank you ,everything you said is so true and perfectly put.

You are very welcome @WhatAMum01 I hope you find the support you need and better friends soon x

@AwkwardFucker thank you for understanding, exactly what you said is so true,in my head if you love someone you dont watch them suffer and struggle to death trying to raise a child they love,a child who'll never be independent. You dont sit back and think well I'm not going to help because that crap is hard,if an ounce of compassion ran through your bones you'd do all you can.my friend has a newly diagnosed child,nowhere near as severe as my son but shes on her knees with worry,it made me cry and want to take it all away from her,I said to her to leave her son with me when she couldn't cope as I'm dealing with my son anyway.this is what I feel when i see suffering in those i love,and even when i read of it in complete strangers.thank you for understanding despite what you say I think you sound lovely.

@CrustyMorticia thank you for all your suggestions ,I really appreciate them.can I ask which CBS oil you used and how much.my son is on a waiting list for camhs but wouldn't be eligible for any medication until 7 if additionally diagnosed with ADHD too.i need something to help him focus and calm down so he has a chance to actually take something in and have some sort of understanding. You sound like you're doing an amazing job.cxx

@salemsmum thank you,I'm in Scotland and I csnt find any help despite asking and looking.theres the struan residental school here but they say there school is after a recommendations has been made due to mainstream sn not working,my son only started his sn primary school in August and it's not been long enough.

@Bluerussian @ChazsBrilliantAttitude thank you so much I'm going to phone on Monday and ask as if theres anything they can help with

Good luck