To think this is largely true in my experience, mothers experience of raising a ND child

Yes absolutely! My daughter is classed as medically complex with severe sen so is tube fed and double incontinent and although 8 is mentally 3, however she has zero behavioural issues and a very happy flappy temperament she's actually a delight she would just sit with her ipad and play or would get absolute joy doing an activity aimed at 3 year old but children like her are just written off when it comes to outside childcare.

Yes most families we know with ND children have at least one parent not working tbh.

We have two DS with severe learning disabilities. At the moment we both work part time so we can do the school runs between us- no childcare available that is suitable. We are lucky that my school (I'm a teacher) has made a timetable change to allow me to do one short day a week. My DH has his own business so he does two short days a week.

It is really hard though. I don't think a lot of parents who can use wrap around care, grandparent care etc realise how little is available to us.

Looking at the big picture. I have observed my Aunt 'manage' my cousin who needed close supervision whenever awake. A different disability but with many points in common for a family.
If men were more involved then there would be changes. My cousin was finally 'put in a home'. It was better equipped and the staff were all trained. Cousin improved, she was much calmer. It could or should have happened earlier.
The rest of the family were able to relax and live a more normal life. Did not have to lock books away to save them from being torn and scribbled over.
Men/Fathers would not be so easily guilted into keeping the 'normal' show on the road.
My cousin started to help some of the other residents. My flippant remark was "she realises she is no longer automatically the dumbest person in the room" She could live at her pace, not trying to keep up.

There must be an argument for more specialised residential care. The present costs are too great in terms of:
Pressure on siblings who cope with the every day living.
Difficulties of taking holidays or even breaks of a few hours
Mental health of mother
Loss of career and purpose
If something is not working we have to find another way of doing it. Not do it harder, do more, Do it faster.

If I have this wrong, I'm sure you will tell me.

Yep. I agree. I have two ND children - one more severe than the other, but actually they both require more parenting to an older age than the childen of my peers. I have managed to work part time for the most part, but my work is absolutely dictated by my caring role. My husband works and luckily earns well so as a unit we do OK, but I have minimul pension and my adult life has been shaped by the needs of my ND children.

Also, the parent of a non-disabled child doesn't have the same barriers to employment. If they don't work it is usually choice, and not a forced on situation. not remotely comparable.

I agree OP - we are in a much better position than many and it is still tough at times. Sorry if this has already been raised and I've missed it, but it is quite often also the case that the parents of ND dc are ND themselves (we both are), which can make some things easier and others more difficult.

My 3 teen dc are all home educated (they went mainstream primary school but started to struggle a lot more with mental health at secondary - they have various combinations of autism and ADHD) - I had to largely give up work in order to facilitate this (I am self employed, so have been able to continue with a bit). Dh is a very high earner, but he is a sacrificial lamb to our wellbeing, as without his earnings we wouldn't be able to live as we do and he would be much happier with a simpler life.

I have pretty 'severe' ADHD and struggle with the day to day organisation and expectations and am regularly burnt out - dh is too, but he doesn't recognise it, as he has no idea how he is feeling most of the time (he's autistic) and I worry about him too.

My dc do rely on me a lot and resent me working and being away - I am an important part of their routines and therefore my absence from home creates issues (even my bedtime is dictated, as they all have bedtime routines that involve me being in bed reading). Last time I went away for a weekend dd cut all her hair off, so I would come home.

And Sen friendly is often used as sort of marketing now when it’s anything but, so it’s difficult sorting out the wheat from the chaff, they might as well not say it half the time. Most Sen friendly schemes won’t do personal care or challenging behaviour.

Absolutely agree OP.

Most people judge, even ND families.
My son was violent until he was 12, whilst families who experienced similar completely got it, most others judged. You see it on MN, in RL.
“Well I taught my child that violence was not acceptable” like I accepted it?

This is what the world is like. Have a difficult home situation for whatever reason, and unless it’s socially acceptable (like an unfortunate illness, very visible disability, bereavement) then more often than not people will fake sympathy whilst laying on the blame and distancing themselves from your poor choices.

So as well as having a difficult life, not being able to work, your marriage falling apart, you’re also isolated from the people in your life who you assume might be on your side.
And if you make decisions for your family, or god forbid for yourself, that your closest people disapprove of, you lose them too. It’s shit. You’re held to far higher standards than parents of NT children.

If you manage to scrape some support in school you’re berated for being a pushy mother, you’re faced with comments about how the intelligent children should have that support because they’re going to be the productive members of society. We get told that it’s hard for every mother, ND or otherwise, and that we’re being dramatic or just plain crap for not coping with stuff that everyone goes through. But everyone does not go through it like that.

Because the concept of mothers having needs is a massive societal taboo. Look at the COVID lockdown- suddenly all kids needed home educating, which was catastrophic for the careers of - yes, mostly- women. Does anyone recall this being addressed by any politicians, at all?

For our society to function the way it does, with sky high housing prices and the needs of children prioritised in a way they never have been before (I'm not saying this is bad), yet with state funding cut to provide support for those needs, something has to give. And that "something" is the lives and happiness of mothers. But because women have- theoretically- achieved equality, it must never be spoken about, because it gives the lie to that myth. Meanwhile, mothers are kept in line with industrial quantities of mum guilt (you just have to look at some of the other threads on MN to see that in action).

For mothers of NT DC, this is a temporary situation. Get them into school, and you can regain most of your life (just about, often too tired for the fun bits). For mothers of kids with SEN it can be like a lockdown without end.

But society cannot hear your voices *. Because if it acknowledges the unfairness of what you're going through, it will have to acknowledge that things should change.

*I say your voices rather than our because although I'm ND and DS2 is awaiting an assessment for ASD, he's "high functioning " and doing reasonably well at school, bar the regular phone calls from the head and being ostracised by all his classmates' parents. So doing well, comparatively

The dla is supposed to be for extra costs of a disability (which will vary depending on the exact disability), so you aren’t better off than a parent without a disabled child as the parent without the disabled child doesn’t have those additional costs.

I think you only have to spend a few mins on MN to see that there's a lot of women who think it's perplexing for a mum to not be the primary carer, that they should manage the 'oh so hopeless' man.
I get fed up of the judgements, mainly in my experience, by those with nt kids about how anything other than man = breadwinner, woman = part time/ lower earner and first point of contact for anything child related Is wrong

@Marblessolveeverything As a lone parent with a young SEN child, your comment made me cry! MiniFool and I have a small village who will do whatever they can but are limited by a lot of practicalities. Thank you for being the family that we all need 💝

Agree I’ve lost count of the amount of times I’ve seen on other thread suggestions for the poster to think about changing their child to special school like it’s some sort of genius suggestion that the poster hasn’t thought about. There also seems to be a misconception that it’s parents of children with Sn who actually want their child to be in mainstream against the suggestion of professionals rather than the other way round.

I have 2 children with Autism, one also has ADHD. I work term-time only so we don't have the problem of holiday childcare, but the holidays are fucking hard.

I really like my job, which I know makes me lucky, but intellectually, and in terms of my skills, education and experience I could definitely be working at a more senior level. The fact is i'm too knackered and something has to give. I've had the opportunity for promotions and DH always encourages me to "go for it", but doesn't pressure me when I tell him I just don't have the headspace to add anything else to my plate. He says it's totally my choice and he supports me either way...which is nice, right? Except that what he doesn't quite seem to get is that it doesn't feel like my choice. Because I know that taking on longer hours and more responsibility at work combined with caring for SEN kids would push me over the edge. I also know that although our DC would probably mask well enough to appear to cope ok in wraparound/holiday childcare, it would raise their anxieties massively and the fallout at home would be significant. I can't put them, or us, through that.

DH's career has gone from strength to strength since we had the kids. I suppose we've made the decision to prioritise his work because the reality is that his earning potential far exceeds mine. No matter how many hours I worked I would never be able to bring in as much as him because our industries and skill sets are very different. He works really hard, which facilitates me being able to work part time, term time only but I don't think he quite gets that if I wasn't around for the kids he wouldn't necessarily have the freedom to pursue the career opportunities that he has. I say he doesn't 'get' it, but actually I think he's probably just never thought about it.

DH does his fair share around the house, he cooks, he cleans, and he is a very involved, loving and present Dad when he's not at work so I know that makes me luckier than many. But I do feel that on top of everything else I do, I've had to educate him, as well as myself, about ND. I'm the one who does the reading, the research, communicates with school to make sure their needs are met. Don't get me wrong, he'd do those things without complaint if I asked him to, but that's not the point is it? No one asked me.

But op I think you have to look at it with the ‘having it all’ thing- you said ‘what a waste of your potential’ but it’s not, your child/ children are lucky that they get to reap your potential in you being a sahm. Children of wms get it too though tbf but years ago when I dropped my career to be with the kids, it was a mixture of a financial thing and the fact that me and dh together couldn’t be the parents we needed to my now 14yo who we were having assessed for autism (he was found by two specialists not to be autistic) when they were in childcare from 7 in the morning until 7 at night. It wasn’t a sacrifice, it was a choice and a change that had to happen for us.

edited to add it was dh vs me as to who be a sahp- I wanted to be, and I know a lot of other mums that are happy with the same situation. I’ve gone back to work for three years which again didn’t work and now am wfh, which does (and I’m lucky to have the opportunity)

Boraccha there was something about your post that just clicked with me. I'm also in a fast paced job. Most of the time it suits me, other times, like you say it really gets me down

In my opinion one of the reasons why families resort to the "traditional mode" is because in times of crisis this is what works best.
In times of war, families are literally split so that children and be raised in safety.
If children are very seriously ill and need an immense amount of care then it isn't really feasible to work within set hours.

When it comes to ND, and how it runs in families I can see why many families work this way.
It's the way my own family works and that of much of my extended family.
Many people on the ASD/ ADHD spectrum prefer to concentrate on one thing at a time. It's really takes more out of us It often doesn't suit us to have to constantly split our time between family and work, and so even though we may wish to have a more balanced life, we can't give our all or get completely into what we are focused on.

I realise that if there's only a single parent then it's different, but in my family we mostly are a focus on one thing type of set up until the hardest part is over. I know that unfortunately for some families this is more akin to lifelong, rather than children reaching early adulthood.

We do not get UC as income too high. I manage to work very part time and earn just above the threshold for carers allowance. We only get DLA. I would cross net about 2k more per month. Instead we have about £500 in disability benefits. So a net loss of 1.5k per month. The money we get for the disability is used to pay for private therapy as we get nothing from the NHS and it eats up most of it so there is nothing left over. We just lose out financially.

and if you work 20h even on BMW, it takes you far above the threshold for carers allowance! So much ignorance.

it doesn't pay to have a disabled child. in fact, read up on the statistics - we are the sort of families who are most likely to be in poverty.

If your mortgage is 800 a month then the 400 dla added to £80 a week carers if out of work will almost cover the mortgage.
There is also 100 something extra added to UC for each disabled child too, then the usual UC monthly payment to cover bills and food. Its obviously not ideal but still ends up about £800 a month better off than a parent without a disabled child, which does pretty much cover what someone would earn working a low wage ~20 hour a week job which many mums do to fit around school hours or childcare.

Totally agree. Had to give up my career and now do a job that works round school hours. DH takes our child out on a Saturday morning, does the morning routine and then goes on about how difficult it is with ‘I know you do it every day’. Yeah I do and I don’t go on about it.

quite likely, that one or both parents also ND

Availability! There is nothing. Nada. esp for older teens who have the mental age of a much younger child and need 24/7 support.

I don't think there should be an extra charge if available either. We make buildings etc disability friendly by building ramps, lifts ect and would not charge a wheelchair user extra to access services simply because we built in adaptations to make it accessible. The same should apply for childcare. It should be properly costed and accessible for all. Parents of disabled children don't outearn those of healthy children. Any decent society would make sure it acckmodates those with extra support needs and that they are fully included without bankrupting the families.

I've never heard of it? I actually started a thread on sen just yesterday about my frustration at lack of childcare I just want to be a part of society again. The recent disability and carers bashing that's been around since the pandemic end has really took a toll on my mental health not to mention realising that jsa is £10 a week more than carers allowance that was a bit of abody blow to feel even more devalued.