Fed up of being treated like I am worthless and a drain on society because I don't work

[elliejjtiny]

Dh works. He used to have a well paid job but he took a pay cut so he could be more flexible for the dc who have SEN and multiple hospital appointments. I am carer to 10 year old ds who has autism and emotional development delay. He is considered "high functioning" but he receives high rate dla and he is in mainstream school with part time 1-1. This is going to be increased to full time 1-1 when he starts secondary school. In a lot of ways he is like a very intelligent toddler, especially with maths.

PIL came round today. They provide regular childcare for SIL's dc but have looked after my son probably about 5 times in the last 10 years. And never for very long. Because he is difficult. That's fine by me. But then they criticise me for not working. It's not just me,( actually they moan about me a lot less these days because they know I will argue with them and point out that they won't look after ds, school struggle with him so how am I supposed to work) , they go on and on about "people on benefits" and they assume things that are just not true like they think everyone on universal credit gets free holidays and they say the benefit system is more than generous and that people should stop moaning and get a job. Fil has been telling me with glee that one day ds won't need me to care for him and I will have to get a job. To me that's like telling a blind person that one day they will be able to see and they will have to give up their white stick. I would be more than happy to work if ds didn't need me to look after him.

I know sil thinks I should be working (although how, I have no idea) and every so often I keep thinking that maybe other people think this too. I've always said that when ds sleeps through the night I will try and go back to work part time but that hasn't happened yet.

I agree, I’m not sure there is a perfect way to describe it either.

I’ve been asked if my stepson:

• has “much Autism” (loads 🤷🏻‍♀️)
• is “behind or slow” as well
• can just be told to calm
• can just say what that matter is
• understands x, y or z

His school paperwork describes him in a few places as a “very complex little boy.” Which is a fair description, but also grossly unfair. His needs may be, but a person, he’s not complex at all - he likes cheese, playgrounds and Vimto. Doesn’t like waiting, medicine or sleep and does like his safe adults and tickles.

I think labels at all remove the person, he isn’t just his Autism/various other needs, he’s a wonderful and funny little boy with a huge personality that isn’t “is autistic, has global delay and ADHD.” It’s so reductive. * *But then how would we ever get the things he needs without the label attached to him!

He sounds like a lovely happy chappy who had his priorities straight. Cheese and vimto are supreme, and we all need more playgrounds in our lives.

Absolutely. The dr who diagnosed Ds emphasised that his autism is very mild/high functioning because he doesn't have learning disabilities, can speak and didn't have a meltdown in the clinic. I did point out that as he was a premature baby he had been coming to the peadiatric clinic every few weeks for his whole life and it was a familiar environment to him, not a strange place but the Dr still insisted that not having a meltdown in clinic meant that he was only very mildly autistic. For most people it's extremely obvious that he has autism, and not just because his symptoms have become more severe as he has got older, (sorry, not sure if that 's the politically correct way of saying it.)

OP to a point F what your in-laws or anyone else thinks.
Your son has additional needs, I know others have posted that they have children who also do and they still work, but that doesn’t mean you have to.
I have two neurotypical children and really great childcare but two adults working is hard.

As regards the in-laws I’d be inclined to try to have one firm conversation saying something along the lines of - while I note that you’ve toned down the references to me/our family receiving welfare, the constant welfare bashing makes me feel (whether rightly or wrongly) that you are having a go so can you please stop bringing it up.

I just want to say

You are a fantastic mum.
Sometimes it's easier to go to work and use it as an escape.
At least, each and every night, you can sleep knowing that you lived the day for your children.
Everyone can go to work for money.
You chose being a mother over that. And you made a sacrifice.
And your children will thank you. Health workers will thank you. Those families and parents of special needs kids thank you. The children with disabilities thank you for being there each step of the way.

You are a hero to many.

Just remember, a bottle of water in a multi pack in a super market is worth 20p.
In a fridge alone is with 50p.
At the train station is worth 1.30
In the aeroplane is £3.50 plus.
It's the same bottle of water. Your value is different depending on your company.

Your worth is more to people who understand your situation. And your in-laws are very ignorant and sound very materialistic.

When we die, it's not about how much money we made but how many lives we touched.

You are a superhero in this neck of the woods.

Don't let the haters get you down.

What about school holidays and weekends? That's a massive amount of time caring with little break each year.

My youngest is 7yo and currently on CAMHS waiting list to be seen. Some days are incredibly intense and you need to, as an unpaid carer, look after yourself.

Answer to such 'taxpayers' - apart from Motability being a charity - is that you contribute to the fire service you don't currently use. Perhaps they'd like that to be a charity and you had to qualify for it before they came and put out your burning house? Some people are utterly stupid.

What is welfare for? It’s for the poor, sick and disabled, those in society who need help from the public purse. Yet people seem to resent it being spent legitimately.

My children don't sleep well but are at school during the day. I work and still do all the above as well.
Reality is that everyone will have to work harder put more I to the system if we want to sustain the benefit system we have. We can't all want to take from the pot when we are not all putting the same amount in.

No you are doing the most worthwhile job there is. Don’t let them bully you. I hope you are a feminist and that means you have a choice how to spend your valuable time. Hold your head up high. I feel sorry for them for not getting it.

I guess I'm a 'boomer' because of when I was born. But I'm not rascist or narrow minded. At least I don't think I am. Isn’t it narrow minded to assume all people of a certain age have undesirable traits?

As for you OP, rise above the comments of people who don't really understand the difficulties and frustrations of your position. Both your in laws and those people who presume to know on here.

Im not saying that you are like this op, but I can name 2 people who are on benefits because they say they are carers for their children with sen, and they get more money than some people who work full time with young kids. The 1 girl I know, has just returned from a trip to Lapland to see Santa with her 3 kids, she has no partner so it was all paid for from her benefits. How many working families can afford this luxury ? . The other lady who has 4 kids, went on holiday to Disney land Florida, again she has no partner so it was all paid for from her benefits. Both women have Sen kids so get extra money to help (or so they say). This is why people are getting fed up with the benefit system, there is no way that people who dont work, should get more money than people who do, what ever the circumstances, sen or no sen. I am sure there are kids out there with no sen needs who would love a holiday to Lapland or Disney, but they cant have it because their parents work. Like I said, I am not saying you come under this category. I do wonder however, why your husband gave up a good job to be more flexible, when your at home all day to deal with the kids, more flexable for what ?.

, why your husband gave up a good job to be more flexible, when your at home all day to deal with the kids, more flexable for what ?.

Like many people who have the opportunity, her DH went freelance so that he could choose his own hours. He still works nearly fulltime. And as OP said, this happened after her DS was in intensive care and DH couldn’t get time off. If I worked for an employer like that, I would go freelance too, child with SEN or not.

As for the rest of your post about people on benefits having holidays- what a cliche you are…. Pfft. I don’t want to get deleted, but imagine my mouth forming one of those sweary clouds in cartoons.

How do you know how much they are getting or how they paid for a trip away? I’m a single parent carer and I don’t get more than someone that works full time. My kids have never been out of the country. I’m sat here in a cold house because I can’t afford to put the heating on. Maybe she gets money from her ex? Or maybe family help her out financially? Maybe she’s in debt? Maybe the holiday hasn’t been paid for in one hit?

To the person who asked what SEN parents do when their kids are at school, as a SEN parent thought you’d like to know I go to work. My son secondary age has a rare cognitive disability diagnosed at 8 1/2 years old (1 in 55,000) sleep problems- secondary autism- social difficulties- eating problems - micro seizures - developmental delays a whole host of things too long to write, has full EHCP and 1 to 1 support .

And what you don't see is how that money was saved up. Because this family can't go anywhere, including the mum, due to the DC disabilities. You spend less money when you're home all the time. Those working families are able to go here and there on a daily basis spending a bit at a time. The additional money is because being disabled is expensive. There's not always the option or opportunity to shop around for the cheapest whatever-item/service because the places it's practical to purchase from or the items/service that's suitable, are limited. There may also be a need for additional items/services that non-disabled people either don't need or are able to (if necessary because skint) go without, without coming to harm.

If you think wages aren't high enough that's a separate issue. It doesn't mean benefits should be lower.

No, I don't do that. Mainly because ds wouldn't cope with a plane trip and I would be nervous that he would damage something or upset someone with his screaming if we went on holiday. I would imagine cost would be a problem too, although I have no idea how much these things cost. We have managed some days out which we couldn't up until about 2 years ago so things are slowly getting better.

It’s just coincidence though if a couple with one or both in low paid employment of course dla plus disability premiums could easily be more than they earnt working. This was true for us - years ago when we both worked we couldn’t earn more than we were entitled to in benefits if we gave up. Equally you could have higher earners plunged into what is to them - financial hardship if they had to give up to be carers .

I do wonder with some of the responses on here if some people feel that carers on UC should have work commitments?

There is a physical limit of sleep deprivation that someone can sustain before it significantly impacts their ability to function cognitively, so to ensure safety, as well as physiologically, it can cause anxiety, depression, panic, hallucinations as well as have an impact on our physical health.

When parents of SEN children say their kids aren't sleeping they don't mean their kids stay up past 11 sometimes or occasionally like to get up as the rooster crows.

We mean our kids are up past 11 most nights, then up through the night for hours at a time, and then are waking up ready to start their daily routines at rituals at a ridiculously early time and when they are awake they need their bodily needs to be met. They need feeding they need to be given a drink they need help toileting or changing from soiling, they need to be supervised because they cannot understand risk and they're elopers, sometimes they're just so upset and we don't know what they need they might need comfort they might need space they might just be bored, they might be trying to communicate something and struggling, and they can display self injurious behaviours, some of our autistic children also have pica and will try and eat things that aren't edible at all and are dangerous and need redirection. We're also mindful of everyone else needing sleep so we do whatever we can to make sure our children are quiet and happy. It's beyond exhausting.

Someone said it earlier in the thread but if your children are at school then you are basically working 16-18 hours a day 7 days a week and the only break you get is when your kids are at school for 6-8 hours if they're even able to access school for that duration of time. Many don't. Many are on part time schedules despite being entitled to a full time education, or have been suspended or excluded as there's no suitable alternate provision.

It's not the same as having a neurotypical non disabled child/ren. You might have to stay up late and put them to bed and get them a drink or a snack or read a story and listen to a thousand excuses about why they want to get out of bed.

It's like the newborn phase where you're so exhausted that you catch yourself nodding off because you're at your absolute limit except it never stopped when the newborn stage ended and it feels like torture. I'd say groundhog day but every day your child gets bigger and stronger and can do more harm to themselves or others if not supervised properly.

So sure if we ignore the fact that the OP is a human being and she has human being needs like to eat, sleep, wash and also has obligations to make sure her children live in a sanitary environment, as well as the fact that on the odd occasion she'd probably like to do something for herself once in a while so she doesn't feel like a robot who's sole purpose it is to serve then yeah she could probably get a job in school hours term time only if she was extremely lucky and lived in an area where these jobs exist, which isn't many places.

Then you've also got to factor in school refusal and behaviours that the school cannot manage, the dysregulation before school that is unpredictable where you can't get your child into school until they're regulated, you've got the middle of the day phonecalls from staff saying that your child might be unwell because they don't know what else could be wrong and they've tried everything, you've got the bimonthly meetings with this senco and that senco where one arm doesn't talk to the other so you've got to do all the paperwork yourself to evidence your child's needs due to staff shortages and turnover and a corrupt SEND education system.

And at the end of it all you might also have other dependents that deserve some of your time so they don't feel like glass children, so your available time to catch up on your own needs is a very broken and limited window of opportunity.

If you don't need to take from the pot then you are privileged. Either privileged to have the income to support your family without relying on the state despite your children's disabilities, or privileged to have children with no disabilities.

Not privileged just grew up in a country where there is no benefit system. You look after yourself and you work all hours to keep your family going.

It’s not possible to look after yourself on no sleep, and that’s coming from someone who does work through it. It is much to the detriment of my health, and I’m aware it is.

We’re quite regularly up by midnight. Like ready to start the day, up. The last year he has routinely slept 9pm - 12am, pretty much every night. Melatonin may as well be tap water. The hours after 12am may include a brief nap 4-6, if we’re very lucky. Otherwise they involve trying to keep him contained and settled while the rest of the world catches up.

We are very fortunate that he will attend school full time, and grandparents currently help a few hours on a Saturday so we can get some rest. One of us will also try and watch him while the other tries to get some rest or sleep.

I would honestly challenge anyone to do that, unsupported, and either look after themselves or work all hours.

The number of people who don’t understand just how relentless SENDs can be is baffling. Yes, babies don’t sleep through the night, but many parents are on parental leave then. And this board if full if parents complaining that they can’t cope after a couple of months
Not getting uninterrupted sleep (and very little sleep each night) for 10 years is a massive problem.
The paperwork that comes with SENDs is easily 10 times as much as with a “regular “ child. Add medical appointments on top of that.
Independence comes much later. My 12 year old (similar needs to OPs child) still needs help to get dressed , can’t go to school independently , …
School is random at best. if the 1-2-1 TA is ill - no school. If the 1-2-1 TA quits (pay is awful) - no school. If anything happens outside the usual routine- no school.

And to add: there is no respite. Grandparents can’t cope. Babysitters are not an option. After school care is not available. Playdates are not an option.
All these things most parents see as a given - not an option. not even for 1 hour.

So much ignorance. Don’t know where to start.