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

Two ND DC here, both of them have had periods of regular school refusal (since primary age), and then in secondary having to withdraw them from mainstream school for the sake of their mental health, as they weren’t coping at all. This happened in year 9 for DC1 and year 8 for DC2. Then followed by lengthy periods of being out of school
while I battle for EHCPs, still ongoing for DC2.

Regular meetings, having to drive them as they can’t cope with public transport, so much admin for education related stuff and benefits related stuff.

General day to day support for both of them, my eldest is now 20 but both DC still very dependent on me for a lot of things which others their ages would be managing independently. And for company, as they are both quite isolated socially.

Also my own health which has taken a nosedive, partly because of managing on my own with ND DCs and all the stress that has brought to me.

I do work self employed from home, but very part time.

When my son was a toddler it became clear he was nd. I was working in a stressful job as was dh. Childcare was amazing and nursery voluntarily provided 1:1 so that helped but ultimately we couldn't cope with the lack sleep, constant stresses, the meltdowns, routines. In the end I gave up work so I could focus on ds and dh could provide. We were lucky this was an option.

As ds has got older it's got harder, he goes to school but sometimes needs picking up if he's struggling. He also sometimes refuses to go to school and can take me a couple hours to get him there. Plus medical appointments and his very specific schedule that needs to be adhered to.

I do work very part time (about 8 hours a week) for myself but it's hard. My emotional capacity and energy levels are low I don't have much to give to work.

We can afford it but I wish we could save and make changes for our future.

My 10 year old is autistic. She has not been able to go to schoolnfor several months. Before that ...she had not.been able to access any after school clubs or holiday clubs since she stopped going to a childminder at about 4 years old. She was too stressed and exhausted at the end of the school day

Her not being in school and the fight related to trying to get her an education is of course incredibly stressful
I sometimes feel like I'm having a nervous breakdown to be honest

I am with her 24 7 . I sleep on her floor. I'm frazzled. Exhausted. Constantly with her and barely a minute to myself

I am in theory a self employed creative but barely able to function professionally

Good subject for your research.

DD1(14), ASC, EHCP, EBSA in MS.
I'm perpetually worried I'm going to need to abandon my career to 'electively home educate' nothing elective about it, as DD is not coping in MS and has been out of school for long periods in the last 18 months. The new attendance regulations which came into effect last month look set to see me repeatedly fined, prosecuted and potentially imprisoned unless I deregister my child. The stress of this is pernicious and ever-present. The irony is that I'm an experienced teacher in a leadership role, adding great value in my local authority ‐I really would be a loss to education!

Adjacent stresses of SEN parenting are all the administrative loads; I'm currently appealing EHCP funding and it's brutal. I constantly feel as if I'm pot-holing with a failing headlamp or similar: scrambling around in impossibly tight spaces with limited time and looming threat ahead if I fail. The pressure is immense. It's been like this for years: fighting every step of the way to just remain standing and stay safe, let alone move forward and thrive. I really think it's taken a toll on my health ‐I'm noticing a definite cognitive 'dulling' and sad little anxiety responses such as a racing heart when opening my laptop, (for any purpose, even checking the weather forecast), and flinching at the sound of mail or phone notifications. I can't rationalise it or reason it away. Always exhausted.

It's not impossible, but our quality of life is better for me not working. DH works long hours. There's no family support. When your child is autistic (even at the end where they can regularly attend mainstream school with little intervention) there aren't the mutual favours with friends to get you through things like INSET days. My job gave as I was too stretched and wrap around care was more than DS could sustainably cope with after yR.

He's a teenager now. I'm fortunate that he doesn't need 24/7 supervision, but the amount of time I can leave him for is limited by the fact that he won't register hunger/ thirst, and he won't prepare food for himself. He has a lot of fear about heat, and sharp items. He's also dyspraxic with poor organisation and hand strength.

He copes in school, but that's with a lot of down time, quietly at home. Things like doing the school run saves the additional load of catching buses at peak times. Without that level of support and down time, the wheels could fall off quite easily. (This evening he reached his limit at an event that he opted to go to and we had to leave when he got peopled out and started headbutting a building as a stress response)

I could hypothetically work from home, but that's not viable within my original sector and the thought of living in my workplace is abhorrent. It was awful when DH's company comandeered our home in the Covid years. I suspect that I may have ADHD and the thought of constantly battling myself and clashing work/ domestic commitments in my home space and having no physical boundaries is something that I would have to be totally desperate to endure. I already feel like I'm permanently trying to coax my own ignition into action.

We've also had a couple of school years where DS2 has had health issues affecting his attendance to the extent that would really test the patience of employers (even if sharing the load with DH where possible)

Snap;the childcare barrier when you have a disabled teenager is nightmare;I still need childcare for my autistic 15 year old.

My partner works full time and has ND adult son. Going into college this month a 40 min drive away. Local authority transport won't be ready until the second term meaning he has to get him there and back somehow and work during that time. Still not sure how that's going to work.

I will add that I have had to significantly reduce my hours and take a lower grade position but I'm happy to still be working.

Barely. I'm very lucky that work are pretty flexible, otherwise I would have had to quit years ago. Biggest issues are school transport refusal, no suitable wraparound care, no suitable holiday childcare, appointments and complete school refusal.

If you look at the depression stats for unpaid carers ( this might be carers of children or adults) the stats are pretty similar and the stats for associated co-morbidities and other illness associated with stress and depression are also pretty awful. Incidence of depression in the general population is circa 12% but for unpaid carers its 30-50% depending on the research.

Unfortunately the need for social care is growing exponentially alongside the aging population and health care able to treat so much more and extend life - but social care hasn’t kept up. I’m not sure what the answer is, but something needs to change. Unpaid carers save the tax payer circa £28 billion per year and counting by delivering the care. If we don’t help these mums and unpaid carers more generally to avoid burn out it’s going to cost so much more - financially and the human / family cost which you can’t put a price on.

Until my son reached secondary age we were able to find holiday and before/after school childcare but when he moved to secondary it was literally impossible. Further complicated by school transport which would only take him to home address.
we ended up employing college/sixth form students at minimum wage to be in our home when he got home, but far more expensive than a childminder and we couldn’t DBS check them as we were individual employers, not an organisation.

That said, though it was thoroughly exhausting I am glad I continued to work.

a barrier to work could be parents own levels of education. Many parents who have professional careers have managed to stay in the workplace, even if part time or working in a position lower than they are qualified for, or they are able to work flexibly from home.

I agree with this. I’m an accountant and finding reasonably well paid part-time jobs if fairly easy in my profession.

I work 0.75ish fte and earn more than many full time jobs pay plus the flexibility makes a massive difference.

Pretty much everything everyone else has said. DD is 17 and it hasn't got easier unless I give in to the demands to stay playing video games for the entire day every day and not bother trying to encourage/coerce/bully her into getting up/dressed, eating, drinking, going outdoors (with me usually), going to college, doing homework, sleeping.

It's an exhausting never ending job, and adding to that getting her to appointments, fighting for support at college & to get an EHCP and other stuff when I am overwhelmed with it all myself (also autistic) and getting migraines frequently because also overwhelm and perimenopause.

My ds is autistic but his needs were able to be met in mainstream and I wanted to work school hours when my dc were growing up anyway, so there was no barrier, luckily for me.

Anecdotally from what I see working in special education, amongst parents whose children have similar needs, a barrier to work could be parents own levels of education. Many parents who have professional careers have managed to stay in the workplace, even if part time or working in a position lower than they are qualified for, or they are able to work flexibly from home. They all look exhausted though and I have no idea how they do it. There’s also a large number of parents who work in other special schools or care/respite settings and benefit from understanding employers. Parents who are likely to have low paid jobs rather than careers might find it harder to employment that is part time and flexible.

I have 2 ND teenagers, both can access mainstream education but mostly do it from home. I work full-time from home and juggle the boys needs whilst at work and around work. I am constantly exhausted and don't have much life outside of the house. I always have so, so many things I don't have time and energy to get done.

DS5 is ND and we both work full time. But it’s a nightmare!! And only possible due to VERY understanding employers.

The biggest issue is the constant worry of a phone call from school. And the lack of wraparound care.

sleep is awful but you kind of get used to that and people are used to me being exhausted.

And the strain on a marital relationship is so so big.

Literally everything you’ve written is me. Everything!

what is your masters in? I don’t work atm but would like to.

Issues:

• need something incredibly flexible and understanding because he can’t do full school days, in and out picking him up, late because of meltdowns. Can’t attend school holiday clubs.
• exhausted emotionally and physically. If I do get time it’s so keep sane
• might end up homeschooling. DH is breadwinner and also potentially ND so child support all falls to me.
• my career background involves caring for vulnerable people and not sure I’ll cope anymore/have the patience for it so I need to find something else.

Totally relate to other parents getting their lives back and being stuck in the endless toddlerhood phase with a physically much older child. DH and I sleep with a child each as they both need either supervision or physical presence in order to go and stay asleep. Most of our conversations are by text as we either have to jump up to supervise (youngest child) or eldest comes and interrupts whenever we are alone together for more than 2 minutes. So maintaining a relationship with a partner who lives in the same house is impossible enough, never mind friendships - it's virtually impossible to leave the house without the kids on a weekend or evening for more than an hour or 2 and people just don't get it. If I try to explain I feel like I'm moaning endlessly which no-one enjoys hearing but if I don't explain I definitely get the impression they feel I'm exaggerating or using the kids needs as an excuse so feel I can't win. Plus on the rare occasions either of us do manage to socialise we can't really join in did you see such and such on the TV? Er,.no. Been away anywhere nice this year? Nope. Ooh I'm so proud of dear child, they're doing so well at school/sport/hobby... that's brilliant, you must be so proud... casts around for any achievement of my own kids I can share... conversation drifts to a halt...

I think for me it's the lack of autonomy to decide virtually any aspect of my day - when I go to bed, when I wake, when I can shower, cook a meal (when kids are at school basically).

Sorry none of this is about employment but it is our experience of 'living'.

ASD child , diagnosed very early with ehcp in place from foundation.

He just about managed to tolerate school but no wraparound care was suitable and no family to help. DH and I went part time and I was allowed to WFH a day a week.

We needed regular time off work for appointments, and often needed to pick him up from school when something had gone wrong so needed work to be understanding.

I was on a very good career trajectory before having DC, I downgraded to a role in the civil service and am still at the same grade 13 years later.

They would happily give me a promotion and promise me whatever working pattern I need. I don't have the mental energy to think about a different role, nothing is ever smooth. I know they mean what they say but in reality I can't be sure all my colleagues will be five with my erratic working patterns.

Ds is 15 but is still not self sufficient, cannot be left in the house alone or go out alone. And has some quite difficult mental health episodes that he recovers from quite quickly but keep me awake at night. I'm exhausted, 10 years til I can take early retirement, roll on.

To add mine have spent considerable time out of education because LAs are shit at that too,

I had to give up work altogether - lone parent because exh couldn't hack it, no family, rural area with no childcare. Up throughout the night every night. Simply not possible to work

No because I'm needed at home. There is no one else to do what they need support with and social care don't give a shit that I can't work more or study, or literally have to choose which child's needs will be met that day when I'm needed in two places at the same time (despite me having a parent career needs assessment and my children having disabled children's assessments).

My experience:

My DS was ND but also adopted so we had a whole other layer of trauma to negotiate. Plus he came to us when he was 3, so when other children were being encouraged to be independent from the parent at nursery and school, he was still learning to trust us and be willing to be dependent, so mixed messages all round, which added to the issues.

School was very tricky, constant phone calls asking me to collect early, or come in for meetings. Wrap round childcare was a complete no-go, far too anxious and needed to know we were there. Ended up homeschooling.

College no better.

Lots of appointments, but also added stuff like self harm and trips to A&E in the middle of the night. Plus a lot of counselling which we had to pay for privately. Some months my salary just about covered the counselling costs.

Now, aged 22, he is working full time but shifts so still needs input to get to work at the right time on the right day, needs help with budgeting, reminding to take meds etc. He gets PIP, so I am basically doing for free what he might pay a PA to do - but he does contribute to the household budget as his monthly income in earnings and PIP are currently over 3 times what I have been earning each month since he joined the family 18 years ago.

I did work but only part time because we wouldn't have coped as a family if I was full time as well. School was soooo stressful, I couldn't have held down a full time job and coped with school and then home schooling.

Breakages are another hidden cost. He wasn't destructive as such, more clumsy and cack-handed, so things got replaced more than might be the case in other households.

He was terribly anxious at bedtimes (trauma from before being with us) so I frequently had to stay with him while he went to sleep which often resulted in me falling asleep early evening, only to be wide awake in the middle of the night (he slept soundly) and then tired in the day, so more likely to fall asleep early evening. Vicious circle.

I would say I am fairly resilient, but there were times I felt totally out of my depth, no support, no understanding from authorities/school. I felt it was my problem to solve and I didn't know how. I started to get panic attacks and not wanting to leave the house.

It still feels like this as I worry what will happen to him when we die, will he be able to cope? Will he have a partner?

He has recently reconnected with his birth family which has added other complications to be negotiated.

It just seems like other people's kids grow up and start to take responsibility for themselves, get married, have their own kids etc, but I am going to be forever parenting him.

Love him to bits, but I feel my life has got lost somewhere along the way.