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.

Sorry, OP, for a post irrelevant to your thread, but I had to take issue with this. The boomers got us a lot of the social freedoms we have today, often at high personal cost. (Late Gen X here so this isn't a personal sensitivity).

Wow
What a horrible point of view they have.
They must think all housewives are worthless.
You have SN children which is very challenging Particularly when it comes to food etc.

Someone with 3 children with autism using the term high functioning and not understanding it?
High functioning really is a term that should be put in the bin. Being good at maths or whatever doesn't relate to a child's care needs. The OP's child will get a full time 1 to 1 at secondary, as rare as hens teeth, this is not a child with low care needs.
Perhaps you might scroll up to read the experiences of people with children who have high care needs.
Total lack of empathy from some posters.

None of GPs business how you choose to manage your lives.
Your DH needs to tell them this.
And incidentally, caring for others is one of the most difficult and undervalued occupations there is, they should be admiring g you, not putting you down.

Ignore them or better yet don't allow them in your home. It is nobody's business what you do and don't do. If this arrangement is what works for your family that's all that matters.

They are just plain horrible people OP. That they show so little care about the care of their own GC is telling. And they have the nerve to treat you in this way? What does your DH say? I would not host them in my house never again.
OP, the system is there to support people with disabilities, their carers and those with ill health preventing them from working. You do work; you care for your child. Just tell them so.
If I were you, I would take some studying to prepare for the return to work, when you are ready. Though you could go directly into care work, if you want, with some qualifications, you could care and teach children with SEN and disabilities as your DS gets older, if you get a bit more time, hopefully.
I do not think people are taking into account how exhausting looking after him on your own can be. No judgement from me. Wishing you the best.

Agree i really hate this attitude for carers that they have infinite capacity way beyond normal people’s energy levels. Are professional chefs or long distance lorry drivers or plumbers or GPs expected to immediately get home from the day job and resume working using their professional expertise, unpaid including overnight until their next paid shift begins?

I have not read the whole thread, so I need to ask: how is high functioning compatible with a toddler that is good at some subjects, like maths?

high functioning is about how others perceive their needs rather than any reflection of the actual needs. Sadly people think a child surviving in mainstream means their needs are lesser in some way but that really isn’t the case.

like you said for a child to be given full 1-1 especially in secondary school shows that they have significant needs. Given the fight to get any sort of support in place it’s significant!

You do what works for your family end of story. I know what you mean about judgy people and work. But trust me, even if you got a part time job there would be folk (probably on Mumsnet to be honest) questioning why you are aren't full time like they are. It'll never be good enough. So ignore all the bleating and noise and you and your husband make your choices.

I'm sorry but most TA positions want you in at 8.30 and staying late (unpaid overtime) meaning not being able to do the school run and having to pay for childcare when you are earning peanuts to begin with, not to mention the mental exhaustion/over stimulation.

Can you not use your imagination for this?!
Good at maths but no sense of danger?
Good at maths but gets distressed if left alone?
Good at maths but snatches things they want instead of asking?
Good at maths but won't dress themselves or eat themselves?
Etc etc etc

You don't need to explain to anyone why you don't work OP. That's your business.

Ignore your PIL and some of the shitty posters on here.

I think you should work as I'm worried for you. It puts you in a vulnerable position being out of work and I'm sure you're aware that the statistics for marriage breakdown are much higher for parents of SEN children. What about a job a few hours a week at the weekends? Just from observation, I see a lot of SEN parents at support groups and the working mums seem to suffer from burn out a lot less than the ones who don't work. I think that time to remember who you are and what you're good at is important.
But your children's needs may not allow for this so I don't want to patronise you.

Brilliant post. If that doesn’t make people reconsider and stop being judgemental, nothing will.

I think it is confusing for people who haven't met people with spiky profiles. DD1 confuses everyone she meets. She clearly has some level of learning disability but professionals can't agree on what 'level'. She can use words like 'iridescent' correctly, but can't explain what happened to make her upset. She can do mental maths but can't understand that if she spends money it's gone. She can't understand that if she has £65, she can't spend £105, because her understanding of cost hasn't developed in the same way that her understanding of numbers has. She can tell you to be careful because a car is coming, but would still walk out in front of a car because she saw something shiny. She can tell you the dangers of smoke inhalation, but still stood in a room filled with acrid smoke, proudly saying "I've never been in this situation before so I stayed exactly where I was." She can tell you that you need to call for help in an emergency, but if you ask that she'd do, she'd say "I'd call 911." She is at SEN college and has full 1:1 support throughout the day.

I have 3 with SEN. I tried to work. I loved my job. I just couldn't be reliable at work. I could only work 10-2 and even then I was called away so many times for the children that I had to resign. It actually gets harder as they get older.

its your decision not to work, but it certainly sounds possible and many do work (my colleague has two autistic DC, one in a special school and has always worked full time in a quite demanding job). She does have support from her mum, but has also used holiday / after school clubs. But it’s none of their business, you’re not asking them to contribute and the fact they don’t offer to help doesn’t help. I’d ignore them

I’m a single parent, working (although not full time) and have a child with additional needs. I’m lucky that my work is well paid and I don’t claim benefits apart from dla. It’s hard but doable.

The thing that is blatantly obvious to me, but seemingly has escaped the notice of a lot of posters on this thread, is that kids with sen needs have differing levels of disabilities and need support in different areas.

I can work because my child sleeps through the night, can be left unsupervised to a small degree eg in the lounge whilst I tidy the kitchen, can cope with some limited time in an after school club and has competitively few days off school for illness/overwhelm/appointments. The jobs I can do are limited and, like op’s husband I do a lot of freelance work to give me flexibility. We only get mid rate dla and minimal 1-2-1 time in school.

I, and most other working parents of sen kids, am extremely aware of why many parents of kids with sen needs don’t/can’t work. A difference in need, or even just in the pattern of requirements, would definitely put me in that category.

I work as a TA with relatively low needs boys with SEN but I lost one job because they were effectively kicked out of breakfast and after school club ( primary so had to wait until secondary to get another job ) and now get at least one phone call a week to get one of them from high school or my eldest will get the bus in and end up having a panic attack and be unable to go in. And there's all their appointments. I'm exhausted and people still judge me for not having a proper job, no matter what you do you won't win with some people. I'm lucky work are incredibly understanding but no other school I've worked in would be. It's definitely not as easy as people think.

It won't make people reconsider because so many people on MN just read the OPs first post and then just pile on with their ill judged comments. They don't bother with other people's experiences nor are they willing to learn from them.

@NC10125 you are in a similar situation to me and I do really resonate with what you're saying about spiky profiles. I also have friends with children who there is no way they could work around, in terms of need.

However I think part of the reason you and I are working is that there is no way that you could not, as a single parent. If I were to stop working, I would get no help with my mortgage so I would have to sell and we would have to burn our way through the equity renting privately until the government would help me out. I'd get about £900 UC, mid level DLA, and child benefit, Which would be a significant drop and we would be at food banks.
So in reality there is no way I could not work. I have no idea what I would do if my DC had needs which meant I was unable to work. And that is exactly why being a lone parent to a SEN child is fucking terrifying and not really comparable to someone in a relationship.
So whilst I am sympathetic to the OP, it is a choice she is able to make due to privilege.

Your DC's eligibility for PIP is not impacted by whether you work so unless your family is strapped for cash why is it anyone's business if you work? Ditto your DH scaling back hours to be there for his family. People are unnerved when they see other people make choices they have decided are 'not possible', especially positive decisions that go against the norm (i.e. that two adults should work every hour they are not obliged to be with their DC)

My son has Sen, he’s now 13 im a nurse and literally just about clinging on to work. He doesn’t sleep, 4am he’s usually awake, so I don’t sleep becuase I’m alert listening for him start wandering. He also soils, won’t wash, brush teeth etc, goes to school some days but doesn’t engage and school are running out of things to try. There is no, help, support for us we are left to it completely. But saying hey work full time too, without a full nights sleep, or how do I get him to school then work. Thankfully as a single parent his dad is great we are a team, but both exhausted, both stressed to the max. No real way I can leave my job as a sole breadwinner for the home.

For all of you who do work and it’s fine that’s great but it’s not like that for everyone, our children are all different with varying needs

The thing is if you worked full time in a high flying career they’d judge you for that too and ‘dumping’ your kids on childminders. With these types of people a woman’s place is in the wrong.

I don't want to patronise you.

But you did.