If you're a carer to ND or disabled DC's are you able to work, what are the barriers?

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I'm trying to find a research topic for my masters and I have lived experience of being a parent of a ND child. Luckily I have fantastic support and am able to work but I know this isn't the case for everyone.
I would like to look at the mental health benefits of work or training/ volunteering and the barriers to accessing this if you have a disabled/ ND child or children.
I know wrap around care is a major barrier but I was thinking about sleep too. My kids don't sleep and I think sometimes how nice it would be to not be exhausted.
Would anyone be willing to share other barriers and complications for me to explore?

Completely agree. I have even been attacked on here by fellow SN mums for not making enough a effort to work (more hours). After all the DC is in school all day. Many of those, esp with HF children are in a completely different situation to those whose children have significant learning disabilities on top. But apparently, I must try harder - after all, little Johnny's mum, who manages to work full time because her HF child is able to access wrap around childcare and holiday clubs/can be left alone at home after a certain age, works all the hours under the sun.

Fuck those people, they really don't get it.

In addition to the no childcare, no school place, no one physically strong enough to help, appointments, increased illness, paperwork, practical challenges, our DC regularly only sleep between 10pm and 1am. Honestly. I would not be able to do it without a partner, the kids would be in care.

I have a child with Downs. I've pretty much worked full time since he was about 2. You do need understanding employers though.

DD started to refuse to go to school in year 8 and I had to give up working. I worked in a school myself and attendance is really important for staff so I had to leave.
When she was home she needed almost constant attention, this has improved. I couldn’t go out because of attachment issues and because her MH was so poor I didn’t like to leave her.
She didn’t go in most of that year, and has slowly started returning. This year if we continue she will do some almost full days. However my whole day is dictated by being taxi to and from school. I’m never guaranteed she will go in. So it’s almost impossible to make plans.

I would love to work but I need something where I do the hours when I can. I also think I have concentration issues now as well, 3 years of not working and her taking up all my day has changed me. As well as hitting the menopause. She still needs a lot of attention and organising.

I was going to do a course but it’s one full day a week plus free study time you need to be in. I can’t do it.

I think being a carer is being stuck. My friend was suggesting things but like I said to her - I have a lot of free time but zero freedom.

I don't work and dh works part time from home. We have 5 dc, aged between 18 and 10, 4 with autism and 1 with GDD. Younger 4 are in mainstream school/college, eldest is self employed with me doing all his paperwork. Dc4 has had an ehcp since year 3. We found out this week that the LA have agreed to dc5 having one. All except dc2 get dla/pip.

I know people will say why did you keep having more dc. Their needs were downplayed by the professionals. We were repeatedly told the dc would grow out of their problems/didn't have problems in the first place. A lot of the problems we have now were so much easier when they were little and we could pick them up, use the buggy, go to toddler groups etc. When dc5 was born we had Dc2 and dc4 with SN that we were assured would be temporary and dc1 and dc3 with no additional needs. Dh was working full time in a well paid job and I was a sahm.

Dc3 and dc5 have sleep problems. Dc4 has continence problems so we have to do 3 loads of washing a day. We have roughly 2-3 appointments per week. Older 2 can't use public transport so we have to take them to college. Only the older 2 can stay at extra curricular activities without a parent present and they have only been able to do that since they were 14/15. All except dc5 get embarrassed at being the only child with a parent there at activities so we tend to avoid all mainstream things like scouts, swimming etc.

Two dc, both ND and one also has a physical disability. For me it's a combination of:

• Unable to be consistent in hours as both have difficulties getting into school and/or remaining there for a full day.

• They both have many appointments and related admin to keep on top of. I'm not the best at this anyway so when I was working things were often missed or left longer than I would like because I didn't have time to chase them up.

• I'm so exhausted all the time, one dc is a very poor sleeper, falls asleep late with me next to them and wakes frequently.

• On a better day, when they both go into school on time and I don't get a call to collect one of them early, it has taken so much physical and mental effort to achieve that while keeping them both regulated that I feel drained.

• My previous job role involved working with vulnerable children and families. I just don't have the emotional capacity to be able to support them and give them what they deserve as well as being there for my own children at the moment.

I am aware that I'm in a very privileged position as I have a partner who earns enough to support us and with carers allowance we manage ok. I'm also aware there are people who would say they deal with all of the above and still can/need to work which I do hold on to a lot of guilt about. But everyone's capacity for certain things is different and I have learned from experience what my limitations are.

I work part time. I would love to increase my hours, but it doesn’t seem practical. The main barrier is wrap around care and childcare in the holidays. At one point, appointments and admin would have really caused problems had I been working full time. And if I’m being honest, it’s really helpful to have some time when my DC are at school to catch up on sleep, get the house straight and have a bit of time to myself.

DS (now 20) has diagnosed ADHD and Autism. I've had periods of working and periods where I had to quit. Primary years were manageable although I did go down to part time for a lot of it. School were very good and I had a brilliant childminder.

Last year of primary the wheels started to come off. My childminder was finding him too difficult to cope with and not able to keep him or the other children safe (he was a serial absconder who got worse).

Then secondary school was a horrendous disaster. I managed to work school hours during Yr 7 but had no choice but to quit and stay at home. He didn't cope with secondary, school didn't cope with him. He ran away a lot, the police would be called. There was a lot of appts to try and attend, home visits from various professionals. Tried and failed to get him a specialist school place. He was a long term school refuser, attended maybe 20-30% of the time. All very draining and all consuming both of time and mentally/physically.

I'm one of those people for whom the pandemic actually brought a bit of relief. Things were very bad leading up to it and 2020 would have been his GCSE year. Suddenly nobody was at school and all that stress and pressure for both of us went away.

By the time things resumed the breathing space had calmed things down a lot. He went to college to do an NVQ which wasn't all plain sailing but a lot better. I was finally able to go back to work and have been working full time since then. He's now on a supported internship and whilst it's not always totally easy and straightforward it's back to being manageable for me to have a mostly normal life and routine.

I managed to work in a school for a few years while my son was still at school - the head arranged my working hours around his pick up time. All was fine until she left and the new head wanted me to drop him off to school early, which was impossible as although he was secondary school aged he couldn't be left alone, and the school had no breakfast club. They also mucked me about in general, so I left.

He's 22 now and still in "full time" education - which is actually only 2.5 days a week. He still can't go out on his own or be left on his own so I have to do the school run still. And obviously he is home all school holidays. So I can't get a job, because there is no childcare for a 22 yo! He is on the waiting list for a social care assessment so I may be able to get a PA for him in the future, but because he's in full time education it's not seen as urgent.

I do volunteer, which I love doing. Sometimes he will come with me, but I'm very lucky that his brothers are happy to keep an eye on him if I want to go out.

I'm just starting an OU course, just to keep my brain active as staying at home and doing housework (or scrolling on the internet) is quite boring.

Thanks all for sharing.
I wonder what practical solutions you think would help to improve your mental health?
In an ideal world, I think giving parents of children with significant needs some sort of weekly respite would be beneficial.
I mean normal things we suggest as ways of improving mental health are not always possible with a disabled child.

• exercise
• volunteering
• courses (not necessarily for employment reasons)
• support groups
• walking/ time outside

And then there's the money aspect. Things cost money and if you're living on DLA/ UC that might not be possible. Yoga classes are £10 a week etc.

I wonder what practical solutions you think would help to improve your mental health?

breaks - esp when you work you either work or care. No break. ever. Some with DC who are out of school. It's 24/7.
Sadly social care is just there to throw us under a bus in the name of saving money.

I also believe Carers allowance should be paid at NMW, not £81 per week. if we work on behalf of the government (or being forced into slave labour is a better way of putting it) we should be paid accordingly. This would alleviate a lot of financial pressure on carers and allow many to reduce working hours or give up without ending up destitute and we would still have an income for a very basic level of living. The current system is an abomination and we (unpaid carers) are being treated Iike the lowest of the lowest. but I do not believe anything will improve under labour either looking at the direction they are taking.

I have 2 ND boys...I was so so lucky to have an understanding boss because at one point youngest DS got excluded SIXTEEN times! I had to immediately pick him up then stay home for however long the fixed term was.

It was an utter nightmare and I'm so thankful we are past this now

Lack of sleep is a major issue. I have missed work and my son school because of the tiredness. School refusal means I miss work,and money. I'm a supply teacher ,which allows me the flexibility we need but at the same time, that means my earnings are not consistent.
We have zero childcare from our families (too far, or too old).
Wraparound care is often impossible. Our son won't go to clubs without major adjustments made.

A lot of time is dedicated to communicating with the school, making sure the EHCP is adhered to. We have more meetings with the school too, so that means losing earnings for me as the meetings take place during school hours.
I'd love to retrain but I don't have the money or the time.

I've been going to yoga once a week for 7 months with two friends. It's a 5 minutes walk to the village library and £9.
It helped a lot with my insomnia and anxiety. That has taken a backseat as I've not earned money for 7 weeks now,and I feel every pound counts.
Living from the surplus from the loan we took to buy our car this year.
I'm hoping for my carer's allowance to come through (it should be backdated) soon, and then to start working 3 days a week again.

Not a guarantee as my son has started middle school on Wednesday and we had a school refusal on Friday morning.

Barriers was always the appointments in the early years so I became a stay at home parent.

Got a term time only nmw p/t job when kids started school during school hours.

Then pandemic happened which saw lots of jobs switch to remote & I found a f/t remote job with better pay in the field I trained in. It's very flexible so works for my current circumstances.

The pandemic really helped lots of people especially carers find wfh jobs, there's no way I'd have been able to work f/t under normal circumstances.

I can't hold down a job. I have 2 autistic sons aged 18 and 6. I've had part time jobs over the years only 12 hours a week normally, my kids always made it so I've had to take a higher amount of parental.leave than other people. My youngest won't eat or use the toilet at school so for his own we'll being he finishes at lunchtime so I literally do self employed cleaning for a maximum of 3 hours in the morning, 2 days a week. I have to be home the rest of the time to keep on top of housework and support my 18 year old son as he is transitioning from college to work.
I plan to stop work completely as I'm also pregnant but my husband earns ok and I get disability benefits for my youngest

Agree. My role is hybrid so I am in the office once or twice a week but it's very flexible. It means if something happens such as his bus not turning up - which can cause a cascade of anxiety and ruin the whole day, I can usually flex my time and give him a lift.

That flexibility is the difference between a small mishap being easily resolved or it turning into a disastrous day where nobody gets anything done.

I have two ND children. I used to have a demanding and well paid job. I went part time after DC but eventually i quit, i was on the verge of a breakdown and spent 6 months on ADs .

particular barriers for me were:

after school club unable to meet needs of my children so constant incidents

Both children unable to attend holiday club (as it was not offered at school so meant going to a completely strange place)

school refusal meaning there were periods when i could not reliably get to work

I had to commit to driving one to secondary school and back. He wasnt eligible for transport as it wasnt our nearest school. I eventually got transport but i still have to be home to meet the transport every day.

one son unable to be left alone or with anyone other than close family due to MH issues

i am lucky to have had a lot of support from my mum, but she got to the stage that she could only cope with one at a time.

i do work but in very flexible roles, either low paid very part time or from home.

I think to be honest the catch all of ND/SEN can be unhelpful because the "severe end" of the spectrum is forgotten about and so most people, even if their SEN parents, don't have a clue how big the challenges are when you have a child/young person who will always need the same level of care as a toddler.

This. I can see professionals who have not yet met my child roll their eyes when I say he has SN, because they hear it ALL the time.

My child just started y7. most kids walk with friends, have phones, meet up with friends. Mine is developmentally around 3/4, screams, can't cope if I'm out of his sight, stims constantly, won't sleep, goes to SN setting. There's no respite. Council wants to take his school minibus away. I work part time. I'd love to work more. I dread what the future holds.

Ok so what would make a positive difference to you?
My personal one would be schools tackling EBSA in a meaningful way. Contrary to public belief I want my kids in school. Nearly all parents want their kids in school. When school said to me that they wanted to try a part time table, they were shocked that I fought it. They assumed (because I'm WC/ lone parent?) that I would relish the chance to give up work and legitimately stay home.
Like most women on here, I loved my career. I found it reinvigorated me. I am not a great parent all of the time. I said to school that it would not be in my nor my daughter's best interest to stay home together all day.
Yet that is the situation for so many educated, hard working and skilled women. The state treats us like we want a get out of jail free card, little thought is paid to us losing our identity, freedom and independence.

Looking back, for me I think it would have helped a lot if education for children with SEN wasn't so fixed and linear. It causes a lot of pressure and as a parent you feel a lot of guilt about them not meeting the milestones most NT children do in a timely fashion. You end up feeling judged and sometimes are judged.

In theory it's sort of recognised because that's why EHCPs go up to 25 but in practice it's often not. The secondary school years were such a waste of time, nothing was gained by anyone and I think we both came out of it a bit traumatised.

Those 5 years honestly would have been better spent having walks in the park, going to the beach, backpacking around Europe - literally anything but what we actually went through.

I know that's a bit pie in the sky because to live like that takes a lot of money and no other responsibilities but I suppose where I'm going with it is that he was in no way ready for secondary school education aged 11. If he could delayed beginning that sort of schooling until about age 16 I think by age 20 he could have achieved a bunch of good GCSEs.

I think what I'm trying to articulate is that the pressure of trying to fit a square peg in an educational round hole gets unbearable. I don't really have the exact solutions but mental health would be better for parents and children if there were more available routes than mainstream secondary education but not necessarily a full on special needs school. My DS fits somewhere between that as a lot of children do.

We tried a part time timetable. It didn't work any better. He just couldn't get on with mainstream secondary. Part time was just like saying okay you don't want to eat this shit sandwich every day well how about just on Monday, Wed and Friday then? It's still a shit sandwich you don't want to eat.

As a parent of 2 nuerodivergent children (one has significant needs and one quite a lot) I find work difficult to sustain but enjoy working so do work. The constant appointments, forms, emails, ongoing communication etc with other bodies takes up a lot of time. My kids don't do well in busy places so I work school hours and term time only (normally 2 days a week bank work). We have no family support which makes it harder. I find all the paperwork and medical appointments can be hindering to working more hours as well as the mental load.

For us, it was always a pragmatic approach. My youngest has a chronic health condition that created havoc in the household during a few years - 5-14 y.o.
with multiple hospitalisations.

We knew DH and I couldn't both work full time so I gave up work. We talked about it for months and did what was logical. I'm was nurse with the lowest wage, but without problems getting back to work, DH iwas an engineer with the highest wage and probably facing a few issues joining the workforce as a SHP.

I rejoined the workforce on part time basis with a contract stipulating I could take leave without pay as necessary on family basis. Trust me, it wasn't easy to negotiate.

For many years we didn't go on holidays like most our friends did. We did the best we could with all our children, day outings mostly. But we loved being there for our kids.

Mental health was tough. There were many dark times I had no idea if I could face them. But I did. I suppose I'm (and DH as well) are people who look at life as a half glass full. Somehow we always found something to smile about.

I would find it a lot easier if they had exactly the same chances as any other children, e.g.

• subsidised suitable and regular (not random days allocated, or one week of the summer, or quadruple the price because 1:1 required) holiday clubs and wrap around care.
• Minimal use of exclusions in schools.
• School system that is set up for EBSA or school refusal, with meaningful support, adaptation/ reasonable adjustments and a quick acting and suitable alternative as soon as it becomes clear children can't go to school.
• Reasonable paid carer's leave enshrined in law.
• More respite available.
• Health, Education and Social Care to be mindful of appointments and where possible to combine appointments. Proper use of virtual appointments that are high quality when requested by parents. Fewer hurdles (e.g. we just turned down sleep "support" because it requires so much of our time and professionals watching us trying to put our children to bed).