To be absolutely fucking sick of this life

[cricketmum84]

I have two DC. One aged 16 and one 12.

I have been disabled and unable to walk since Christmas. It's a long term health condition that I found out a few days ago that I'm not going to recover from.

The DC will do NOTHING. literally nothing.

DH is out of the house for work from 7.45am until 6pm Monday to Friday then is having to do all cleaning, cooking. Washing, ironing etc on top of his full time job as I'm not able to do it.

It actually cost me £20 in bribes last week just to get the kids to clean the cat trays and vacuum.

What the fuck do I do? I'm tempted to get a cleaner and pay them with their pocket money until they buck their ideas up.

I'm just totally beaten down.

The 16 year old has just told me to fuck off and die because I suggested that being unable to use your legs was a bit worse than being autistic.

I am so very sorry @cricketmum84 I hope you and your family can get past this horrible time and get into a better time and space. Is there anyway you can get emergency mental health assistance?

I'm so sorry. That's really heartbreaking. I have a disability that means I'm in a wheelchair. I have dreams like yours.

I really hope you manage to calm the waters in your family and all manage to adjust as much as possible to your new circumstances. Please don't take the pills. You will get through this with support. Wishing you all the best.

@Orf1abc

The 16 year old has just told me to fuck off and die because I suggested that being unable to use your legs was a bit worse than being autistic.

You were completely out of order. You need to apologise.

You're frustrated because disability is new to you and you're learning to adapt, your child has been disabled their whole life. Think about how you can support and learn from each other.

SHE needs to apologise? After being told to fuck off and die?

Autism doesn't excuse behaving like a cunt.

Sorry not had time to read the whole thread so might have been mentioned .Have you thought about getting one of them cat food things that is a timer. People use them if leave cats all day. Husband could fill it up before goes to work. I hope you get help soon.

Some things that could help;
Psychological support for yourself to adjust to your disability. Occupational therapy to find ways of managing at home. Learning about adolescent brain development and autism, including demand avoidance, executive function, emotional regulation and rejection sensitivity dysphoria.

Have you got an electric wheelchair and adapted your space? I find a raised rollator much better than a perching stool. A mini fridge and microwave. Organisation - prepping meals in advance to microwave, bulk sandwiches and wraps, smoothies, pasta salads, prechopped fruit, veg and nuts for snacks. There are lots you can keep for easy access with less effort. Raising the litter tray up on a platform with a step stool for kitty access - then you can clean your cats if your husband doesn't want to/can't. A timed pet feeder. Paper plates when not well.

My main thing as a disabled, cat owning, autistic parent has been to ensure my dc don't become carers or get anything different due to my problems and difficulties. They didn't want a disabled parent nor to have their own disabilities and I'm the adult in our home. They do give extra help in short bursts during crisis. I don't want regrets or resentment flowing in either direction. That's required adjusting, being flexible and a fair bit of learning. If I had the option I'd lean on a partner, parent or paid help first.

I'm really sorry you're going through this. I have an ADHD teen and some of the behaviours you describe are very similar.

Are emotions high when these discussions are being held? I think it's really important to keep the emotions low. My DD cannot regulate her emotions well so once emotions start to run high, nothing is going in anymore and she will kick off as your DD has done. Also don't criticise them, ADHD kids are very sensitive to critcism (not sure if this true for autism too). Tell them what you need but don't bring up the past or what they haven't done, it won't help.

With your DD, try to disentagle why she is finding this so hard. The behaviour and kicking off is a reaction to something, something is not being processed right and maybe you can find out what it is.

Someone mentioned demand avoidance - that is totally my DD. Also a complete unawareness of time as suggested - there's now and then there's the future (which may never happen). My DD also has very poor working memory. SHe will forget and we have to talk about strategies to make sure she remembered. THere was one time she was meant to take the dog out and we didn't call to remind her or make sure she had a strategy to remember and the dog didn't go out the whole day :( Your DD may be like this too. She will forget. So work to find strategies to help her remember, it's not intentional (necessarily)

Most kids do want to do the right thing but all teens can be a bit self-centred and thoughtless, with even more challenges if you add on autism. Not excusing the behaviour, of course it's wrong to behave like that, but with ND brains, there's often much more going on in there than meets the eye.

Going to go slightly against the grain here- I understand you physically can not do this stuff, but they also shouldn't be responsibly for it all either. I think the removal of pocket money for a cleaner sounds like a good idea. If and when they decide to start doing a bit more, then the concept of pocket money can be reintroduced.

I'm so sorry to read of your disabling condition and the lack of help from your DDs.

Can I ask, does the younger one have autism too, or is it just the 16yo?

I can imagine that the change in your family's situation would be massively stressful for ALL of you, and that your DDs would be both really scared by it and massively resentful of the impact it's having on their lives, because most teens (and tweens) are basically selfish - it's part of the growing up they need to do, to find the ability to put themselves in others' shoes and show empathy. Of course not ALL teens/tweens are like that - some are lovely and empathetic - but it's a fairly standard reaction from most.

I have a 13yo DS who was always lovely and helpful but is now becoming highly resistant to being asked to help out - he has his list of chores that he does, but the bargaining and the "it's so unfair!" and outright refusal to do stuff if he thinks he can get away with it, is hard to deal with. His younger brother is only ever helpful when he wants to be, which isn't often, so he'll be heaps more fun when he hits puberty.

Anyway - I think the post about the demand avoidance is a really good one, and having regular family meetings, not just the one, might also be a good way for your older DD to be able to air her concerns (if she's able to without getting angry and violent) AND for your younger DD to do so too. As well as setting out expectations of how life is going to be from now on.
Are they aware of the full implications of your condition? Is it actually MND, because if it is, then they do need to be made more aware of how it's likely to progress :( - hopefully it's not.

I think your food shopping needs to be changed too, so that you have easy-access snack foods in the fridge/cupboard, you should never be left starving, that's awful!

And perhaps if your DC are angry with you for getting sick (I know that sounds ridiculous, but it's quite likely! They know you didn't do it on purpose, but they're still angry that your illness has interrupted their life course) then maybe you can direct their thoughts towards them being helpful to their Dad, rather than you, if that would help. The more they do, the less he has to, because you aren't really in that equation any more.

I don't have much to say on the autism front, because I don't have personal experience (many friends and family, but not personal) but I do wonder if, aside from the demand avoidance advice, it might be helpful to tap into the logical side of WHY your 16yo should be helping out. It might not, of course! One of my friends' sons was always refusing to do "the right thing" because he simply couldn't see why he should - so that's where that has come from.

I hope you get some help - and I think, if it's at all possible, your DDs should try to access some counselling because this is a BIG change for ALL of you, and they need to be able to grieve the loss of their old life without taking it out on you.

Many of the posts on this thread are appalling.

It is neither here nor there who lost their temper, the point is that the OP has received a devastating diagnosis, is struggling with every minute of her life and every fibre of her being, and has posted here out of desperation. To respond to that with judgement about her children and parenting is disgraceful. I'm so sorry OP that posters have not been more supportive. There is a chronic lack of emotional intelligence on display on these boards.

I'm so sorry for what you are enduring, it must be overwhelming to receive such a dreadful diagnosis nevermind the practicalities of adjusting. You've been dealt a terrible hand.

Cut yourself some slack here and focus on little steps. Well done for investing in the bath chair and GOOD LUCK with the pip application.

I think your husband needs to leave you food and drinks before he leaves for work, just as you would for someone who could not make their own. It is the least he should be doing.

As to the housework, great idea to use kids' pocket money to pay cleaner and hopefully the pip will come through for that. Plus meal delivery.

But what you could probably do with most is good emotional support. You cannot be expected to magically adjust to living like this, you need time and support. Please put in requests for support with mental health and practical help. I guess people do adjust to terrible changes in circumstances but no doubt those who do best receive sterling support.

@Thevoiceofreason2021

Wow , pocket money at 16. Seriously? Do kids still have Saturday jobs?

"Wow" Don't you think it might be quite difficult for an autistic 16 year old to get a Saturday job during a pandemic and time of growing unemployment?

@PrettyLittleFlies I totally agree with your post. Also with your children OP, it must be hard finding out one of your parents won't be able to use their legs anymore on top of the pandemic ruining daily life, on top of facing crap and peer pressure in school. I'd get a cleaner to help on top of what pretty little flies has said. There's no point going to war with the kids you're going to have to support one another.

Get your husband to meal plan and cook in advance with the kids. Maybe they'll enjoy it. Ask the kids to wash and iron their own clothes so hubby has less work too so he can help u.

It is neither here nor there who lost their temper, the point is that the OP has received a devastating diagnosis, is struggling with every minute of her life and every fibre of her being, and has posted here out of desperation. To respond to that with judgement about her children and parenting is disgraceful.

Couldn’t agree more. This sounds like an absolutely devastating diagnosis, I’m so sorry.
I hope your children step up and support you 💐

@Worrysaboutalot

I am in a very similar situation to you. A sudden loss of mobility for me. I struggle with a stick or crutches in the house and a wheelchair outside. This change is permanent for me too, if you want to PM me, I am happy to listen/talk if that would help you.

My children who range from 8yo to 15yo, have struggled in different ways to accept the changes in the household. However, none of my children are autistic, so my solutions might not work for you.

Pocket money is not linked to chores. It is given so they can learn the value of money and how to spend or save.

Each child has family jobs, which they do because they are members of our family. Everyone including parents do family jobs. We repeat this consistently. The family jobs are not done ‘for DH and I’ but for 'the family'.

In our house. Pre my illness
Tidy rooms, put dirty clothes in wash, put away clothes that I wash/dry, clear their plates from the table, scrape plates and stack. Older three make their own packed lunches, youngest has school dinner. Strip their beds. Older two make their beds. Youngest two and me make their bed and mine together. All kids can make simple meals. Youngest (8yo) can only make simple cold salad meals from the fridge and sandwiches, middle kids make scrambled eggs, toasties, noodles etc. Oldest can make spag bol, pizza from scratch (15yo high school home eco classes are great) Often the kids cook for each other.

TBH Tidying their rooms is not adhered to by the youngest two yet, so we are working on it.

Extra jobs Since my illness
Refill my water bottles, bring my handbag to me, make me lunch if they are home, help me on/off with my shoes and bra, put things on/off charge, go to the local shop for bread crisps etc, bring sticks to me, pick up things off the floor when I drop them (this happens a lot), answer the door for me. (Give me a hug when I get sad.) Hoover downstairs weekly, Empty recycling kitchen bins weekly. Carry bags upstairs and downstairs including laundry bags. Put things in/out dryer. Youngest two make their own beds and oldest/DH does mine/ours.

Your situation
In your situation I would first have a sit down and a hug with each child, talk about what has happened in your family and how do they feel about things, so you can give them reassurance and understanding of how they see things and how things will be in the future. I found my youngest two needed things explaining several times, the very youngest still hasn’t accepted that things will not change for me, sigh. Just loads of talking and their feelings.

Separately I would work on consistency and attitude. They should be doing basic jobs around the house as family jobs for the family (not for you or DH) Including fixing their own lunches and feeding the cats, tidying the house.

Give them a short age-appropriate list for 'family jobs' and go over it with them every morning, until they check their list automatically. Keep repeating that everyone has 'family jobs' and we all do them as we are all part of the family.

This just leaves your personal 'mum jobs'. Another short list of 'mum jobs' that they do for you because they love you, that you are their mother and that you need this extra help.

Both of your children are old enough to prep simple food for you. Give them a 'lunch rota', so they know that older child A makes your lunch Monday, Wednesday, Friday and Child B does Tuesday and Thursday. Set the menu the same every week, so each child knows in advance what they are making.

Knowing when and what they are doing would take a lot of the stress and decision-making elements out of the situation.

I really hope things settle for you and I know how hard it is to parent children when you are in pain and tired. Be consistent and get the lists up. 'Family Jobs', 'Mum Jobs' and 'Lunch rota'. After a few weeks, they hopefully will be helping more and things will be less stressful.

Thank you. This is hugely helpful for me. I will definitely put together the lists this morning and try talking with my older girl again now the dust has settled.

Thank you for all of the kind comments.

Yes it's pretty devastating. I think sometimes I can get a little self absorbed though and I don't always stop and consider the effect on the family too. I really need to change that.

I am under occupational therapy already and the neuro rehabilitation team although only one appointment in so far. They organised the perching stool for the kitchen, a support aid for the downstairs loo and a three wheel Walker that I can manage with very very slowly between rooms in the house, however I can't then hold or carry anything because I need both hands on the Walker. I have a wheelchair and now a mobility scooter for getting out and about which is exciting.

I have an appointment today to get my ankle splints fitted which should get me moving about with the Walker a little better but my muscles are totally deconditioned and my lower legs are so thin from loss of muscle tone that it's going to take a long time. Even so the nerve damage will always be there so the best I can hope for is to walk with a frame. No marathons for me!

Thankfully I do have a very good job and management are being extremely supporting allowing me to work from home permanently and giving me flexible hours for appointments etc. They have also offered to source and fund a personal trainer for me to help with getting some better upper body strength.

Once again thankyou for all the positivity and the helpful suggestions. I really do appreciate it.

DH has made me a pack up for today and popped it on my desk.

Now there is just the teenager to tackle...

I think to begin with all your kids need s safe space where they can talk/ rant about their feelings without judgement
All this is a massive adjustment for them to process and its ok for them to feel angry cheated, whatever. Oncd you hzve got that out in fhe open, together as a family you need to plan how you as s family will cope.
A child of 8 or more can physically do any household task an adult can, but being a young carer is a hard and lonely job, and they need support.

OK, first and foremost you need a walker with a tray so that you can put stuff on it instead of having to carry it! Or, if that's hard to find, get one with a seat and you can use the seat part as a tray.

Ask the OT to come back and assess you with either a kitchen trolley or a wheeled zimmer frame with a Buckingham Caddy on top. Both let you walk and transport items but one will have 4 wheels and the other 2 and 2 rubber feet so doesn't run away with you

Oh and the 12 year old just brought me a bowl of cheese nachos for breakfast... not my usual choice but hey at least she is trying 🤷🏼‍♀️

Although I don't know why I'm surprised as I caught her eating tomato soup for breakfast on Saturday!

@cricketmum84

Oh and the 12 year old just brought me a bowl of cheese nachos for breakfast... not my usual choice but hey at least she is trying 🤷🏼‍♀️

Although I don't know why I'm surprised as I caught her eating tomato soup for breakfast on Saturday!

Worse breakfast than cheese nachos lol sounds delicious! That's great to hear

Can I adopt your 12 old, that sounds like a brilliant breakfast!

We've also had another chat, just the three of us and agreed on a list of chores and monetary value for each one. I got a hug and an apology from the older one and I also apologised for losing my rag yesterday.

They have both promised to help more.

@cricketmum84

We've also had another chat, just the three of us and agreed on a list of chores and monetary value for each one. I got a hug and an apology from the older one and I also apologised for losing my rag yesterday.

They have both promised to help more.

Fantastic update, well done mama 👏 👏 You have good kids and you will get through this horrendous patch. Be kind to yourself and keep on at help services.

This is what we have agreed on.

They will mark down on a notebook what they have done each week and pocket money will be based on this.

I really don't think I'm asking a lot!

I might even give the DH pocket money too 😂😂

Oh and keeping rooms tidy is an extra £5 a week!

My son is autistic and he will feed the cat's, strips his bed, will help make his packed lunch ect, he's 8, there is no reason she can't help.he doesn't get paid to do it either! Hopefully the charts will help and you get some sort of help in the house