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

Childcare specifically for kids with SENS would have made the biggest difference to me working more hours - it would have had to be subsidised to allow 1:1 support or whatever is needed (obviously using the child's DLA money first but I think it would cost more than just that). My DH and I both work part time though as I think that is a very fair way of doing things and allows both parents a break from caring whilst fully understanding the challenges of both roles. I think things that can support both partners working part time would be really helpful such as shared maternity/paternity leave (not available when we had DD but might be now), help with housing costs so 2 full time incomes are not needed to house a family, flexible working etc

There are formal groups for carers where I live but I found some likeminded SEN mum friends which was great, I had support from DGM (not for childcare but in being very positive about DDs achievements) and made time for exercise - you can get yoga online for free and I tend to run in the park also for free. We used DDs DLA money on our own self made respite breaks which were great and involved one parent taking one DC away for a weekend in a nice hotel every 6 weeks or so - we alternated who went.

Finally, the thing that really saved my mental health was using DDs left over DLA money to employ an educational lawyer so we didn't have to have the hassle of dealing with the LA about her educational placement. It was a massive weight of my shoulders and greatly reduced my stress levels because when the LA ignored reasonable requests from me they caved instantly at the lawyer's letterd.

On what would make things easier - having them in school, having wrap around care that can meet their needs, and having transport to school. If they are in school that gives me time for work, self care etc, i dont need any free services. Just time !!

For me, I wish school had been able to put in a lot of support as soon as my DD started struggling to attend. I felt like it was all the wrong way around - once it had completely unravelled, they started offering some of the support I'd asked for at the beginning but it was too late by then. It all came down to lack of resources. Which is ironic given that she's costing a lot more now as a result (EHCP, PIP, CAMHS etc).

I also feel there is a desperate need for small, predictable schools/colleges with for ND children/young people who can achieve academically (whether that be to a greater or lesser degree) but who just cannot cope in a mainstream environment.

Going back even further, I wish supports had been put in place for my daughter early on when for example her sensory difficulties and OCD were first identified. I also wish someone had suggested autism to me early on when I raised her difficulties, rather than letting her fly under the radar because she was the model pupil or because they didn't like to say. This relates to health services too, not just school.

So basically, improve outcomes for the child (ideally with early intervention) and you improve the outcome for the parent/s in terms of being able to work.

Counselling for parents would also be gratefully received as it's a lot to process when things finally fall apart so spectacularly. The day to day stress of caring for your child and fighting for services makes working (especially in a high stress role) hard to cope with at times and an outlet of some kind is definitely needed.

Adding - no family support at all. My Mum passed away 20 years ago, my Dad wasn’t up for regular childcare and Dh’s parents are in their 80’s.

My youngest has ASD and ADHD. I always worked but was very part time (between 10-3 a few days a week) at primary school, term time only. He hated breakfast and after school club when we tried them. We ended up employing a nanny so I could extend my hours a little and that worked much better. She is wonderful with him and we use DLA to pay for her. When Covid happened my DH was moved to wfh and that made all the difference as he could take on so much more care - before he was out pretty much 7-7. My son also moved from mainstream to specialist for secondary which hugely improved everything - he was only attended primary part time by then 4 mornings a week, but in specialist he’s always been in full time. With the help of the nanny and my DH wfh I was able to restart my career and work full time. Our only problem now is that he doesn’t really need our nanny anymore but she’s like a security blanket for him! I gently suggested that we could drop a day and it did not go down well! She does 3 afternoons a week for us now, and she’s really flexible with sorting out tea (knows how to cook the favourites), can always deal with a meltdown (very few now), sorts out his uniform etc and all the washing etc.
I’ve really enjoyed the opportunity to do more at work, sometimes I mourn a bit at not being able to go for different roles for so many years and obviously my pension took a big hit from working so few hours, so whilst other peers my age are starting to think about retirement I need to get in my contributions until 67. Mainly I’m just really relieved that our nanny came into our life and was the right person at the right time who wanted to work with an autistic child and was unphased by the challenges. Without DLA and my DH working from home I would not be able to work like I do.

I have one with autism and one with adhd.
I have had to give up work due to them not being able to do afterschool clubs, anyone else have them.
they go to mainstream school, however the autistic ones masks and then as soon as leaves school grounds meltdowns and turns violent. It may seem to others that he is not that bad but they don’t see him at home.
my adhd one doesn’t sleep very well and is up and down all night.
combining the two has left me physically and mentally unable to work.

I have a disabled daughter who is now almost 20 and have never been able to work due to the vast amount of care and support she requires.

My main barrier was limited support for childcare especially when grandparents were working. Although my now ex-partner and my Mum had days off during the week they tended to vary and I could not guarantee someone would be available at short notice if I needed support e.g. my daughter was poorly or school was closed due to snow etc.

Appointments and meetings around her care and welfare, annual reviews of her EHCP when she was at school etc and having to take time off especially if there were a few appointments in succession. Again due to not always having the support available on tap I would have found it difficult to ask either my ex-partner or my parents for help. When my Mum was working she couldn't attend appointments with me or on my behalf and sometimes my ex had to rearrange shifts and could not always guarantee this happening.

My daughter has displayed challenging behaviour and can be difficult to manage. At worst she needs more than one person to be able to manage her, my Mum and Dad usually look after her together and although I am more used to dealing with her on my own than most people I still need support and respite so I can get things done or spend time with my younger daughter. As she cannot always express her needs clearly, people who do not know her well are quick to assume she is unwell, for example we had carers bring her back early or leave when they have struggled to cope with her.

My concern has always been that if I had a job and was often needing to take time off/leave early/arrive late for appointments or childcare emergencies, a potential employer may make allowances to a point and then get fed up with me if it appeared that I wasn't committed to the job and they may dismiss me.

I’m thinking of joining the council gym but you get penalised for missing classes though which worries me.
I don’t want to volunteer, I did a lot in my youth and ultimately didn’t feel valued. Doing more unpaid work isn’t of benefit to me.
Carers Allowance needs to be a lot more, DLA should run until you are 18, especially when they want people in education.
Schools need more support staff, it’s them that have helped get DD into school and lessons.

"Thanks all for sharing.
I wonder what practical solutions you think would help to improve your mental health?"

For us a school place. People assume that yp with severe needs will always be accommodated in a special school but there is a growing group of children with very severe needs who don't have a place. Those children used to go to independent special schools but there is such a demand for places that schools aren't taking the most severe because it makes business sense not to.

I couldn't work until I managed to find work form home. My sons have both had so much time off school and need support day to day. Working is awful because I don't really have the time or energy for it.
Properly funded services would help, we've had to spend thousands on additional support. So would joined up services so you don't have to explain everything to every member of NHS and education staff you interact with.
Time off and sleep, and not having to worry so much and fight for everything would save me from hurtling towards burn out.

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).

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.

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.

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.

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.

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.

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.

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 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

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'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.

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 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