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

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 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.

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 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.

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 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.

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

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.

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.

When my dc was in school:

-on a very reduced timetable, 50 mins - 1.5 hours per day. The timing changed every day so no predictability whatsoever
-very frequent medical appointments
-wouldn't go with anyone else other than me, so even if I had support it wouldn't work

Now they have left school:

-very frequent medical appointments
-very sleep disrupted, so cannot wake up before midday, so too late for day centres (not that they'd go anyway)
-cannot be left unsupervised
-needs a lot of emotional support, I can't be too far away

I have a profession that requires post grad qualifications, but no way of getting back in unfortunately due to dd's needs. £81.90 per week 'salary' for me for the forseeable future in the form of carer's allowance.

As others have touched upon, school 'refusal' (inability to cope with the school environment) has been the biggest one for me. I have continued to work part time mostly from home but it's a tough balancing act.

Too bloody exhausted. None sleeping kid and I'm disabled too.

Same, it's been brutal.

This is so well expressed. Thank you for the thread, OP, I know it wasn't the purpose of it but I have found some solace in reading about others' experiences and knowing that I'm not alone (although I wish it were easier for all of us!).
Family support is another huge thing that people have raised. My parents look after my younger child on a weekly basis and had her each day for two weeks of the summer holidays. It's lover for all of them.
They can't look after my profoundly autistic older child (12) for five minutes. You need to have lightning quick reflexes, a good sprint time if you're leaving the house, and considerable strength, and they're in their 70s now. If my kids were both non-disabled then childcare would be a breeze as my folks would love to do it 🤷🏽‍♀️

One of my children has ASD, attended a special school and had severe behavioural challenges. I worked throughout his childhood but only because I was lucky enough to have significant support not available to many families..

My DH worked from home with a flexible, self employed job, so could be at home before and after school, and then was at home as the main carer during several periods where our SN child was out of school placement.

My mum also lives locally and was pretty much a third parent. And she was young enough when he was a child and at his most challenging ti cope with the energy levels he required. In her 79s now (DS is an adult) and she wouldn’t cope with it now.

There was no childcare available otherwise. No after school clubs or hobby clubs could meet his needs. No holiday clubs. He even lost local authority transport to and from school eventually because he was ‘too challenging’ for the staff to cope with.

I was part of a SEND parent support group when he was young, and the vast majority of mothers didn’t work. It was just too hard.

Work saved ny mental health, to be honest. It was a mental break from the relentlessness of parenting a child with significant needs and I kept an identity separate from being a ‘SEND Mum’.

I went out to work when my sons (both ND and/or other additional needs) were younger. Their mental health crashed in Y8/9 and 10 and they stopped attending school. After that, I had to stop going out to work, but I was able to work from home (I work in education).

I am so fortunate that my main employer is very flexible and I have a great amount of autonomy with respect to how I structure my day. My other employment is freelance or zero hours, so I am able to take on more or less according to other commitments.

I had to continue working because we would not be able to survive on Carer's allowance and other payments.

Basically, all I have done for the past 10 years is work and care.

Completely agree.

Also, it's become almost taboo to point out, there's different levels of SEN. I understand why severity and functioning labels are problematic but this whole shift is extremely isolating to families like ours. Where neurodivergent people with lower support needs were once shut out of the conversation and ignored, the opposite is now happening.

We have no way of getting childcare at all, it doesn't exist.

I was able to work once (for about 2 years) in the many years since both DC diagnosed. The only way this worked was when both DH and I had extremely flexible, WFH white collar jobs, I took lots of unpaid leave and the kids were able to go to school. It was wonderful - fulfilling, loads more money than we're used to and I felt more like myself than I had for years.

Then one DC couldn't attend school and hasn't been able to since. That combined with the appointments and the lack of childcare have made it completely impossible to work. I am very sad about this.

That's awful. 💐

Absolutely this. My 12 yo is similar and I work part time, 3 days a week, because otherwise we simply wouldn't have enough annual leave to cover the school holidays as he needs 1-1 care at all times. There are no holiday clubs for children like my son. I'm only able to work those hours because my husband works for an organisation which is a ten minute walk from our house and is very supportive (so during term time he can do two of the afternoons) because guess what, there's also no after school care. And I will almost certainly have to give up work when my son finished education, which makes me so sad and will cause us huge financial pressure.
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.

I don't work because my son (ASD and a severe learning disability with challenging behaviour) doesn't have a school place. Dh has also had to reduce his work hours.

I have worked in the.past for a flexible employer (part time only with lots of WFH) but following redundancy, I have not been able to find a job. DC1 is a teen with complex learning needs and ASD. Needs 24/7 care and cannot leave the house alone not can be left alone at the house. There is no wrap around childcare and nothing during the school holidays. Absolutely nothing. DC2 has HFA and severe mental health issue. Loads if anxiety and SH. Often unable to go to school due to anxiety. We also attend weekly camhs appointments currently. In summary, I need a part to e job which I can do from home in school hours, with 13 weeks annual leave and where I can take as hoc a day per week off to attend hospital (or collect DC2 fron school - happens often these days too when they have a particularly bad day). I have no family and no support network. My previous job was very flexible and I was able to work the hours back at night when we had appointments or incidents during the day. I was able to WFH in the school hols (it was hell though and I got ill from the stress at some point). I have been looking for a while for something new but no luck yet.

I had a breakdown when my son was two. I'd never had mh issues prior to that. Since then dh and I regularly struggle with mental health due to lack of sleep/stress/meltdowns/constantly having to manage our sons world.