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

[TyraBanksEyeTwitch]

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?

I've just recently quit my job because my daughter has too many hospital appointments and in hospital very often. The school call me a few times a week to help her (personal care needs) and it just became unmanageable with work.

Plus all the time she has off sick from school, it's really hard and I feel like I'm trying to walk through thick mud everyday.

I do work, but not full time and my job was chosen based on the hours that work for the kids (overnight, term time only), not the job that matches my skills/qualifications. As a result I'm paid much less then I would be if I still worked in my per-children career.

Child care is the main barrier. Technically DS's school has an afterschool club that is inclusive (it's a ARP, so higher proportion of SEN). But although they would take him, it wouldn't be in his best interest to go. He only just copes with the school day, any more would overwhelm him, and probably reduce his capacity for managing at school.

Other barriers would be getting time off for all the meetings and appointments, finding time for all the extra admin (DLA, EHCP, referral requests paperwork).

I have children with additional needs. I work part time in a job where I choose the days / times to suit so I can work around appointments / school meetings / illness. I gave up my career and work at something completely different as the sector I worked in is not flexible enough.

In terms of mental health, I volunteer in a few roles - because I need something outside of my family pa work! Again, flexible enough that I can fit round everyone else's needs.

And I make sure to have friends in a similar situation as a support network. This is really important - being able to share your frustrations with others who understand.

Oh yes, flexible term time only hours until last year. It didn’t work when I went to less flexible term time only, had to withdraw. Now not term time only but v flexible and wfh.

I have two children with ASD both have EHCPs and both are in specialist settings.

I work 30 hrs a week and that’s quite tricky. The only way I manage is with a proper partnership at home with DH, family support from PIL (and my aunt a few years ago), a cleaner, a part-time nanny, and a very understanding employer.

Additionally I earn decent money which means I’m not just working to pay childcare - if I earned less well it would be a slog for no reward.

The hardest part has been the illness - both of my boys have ARFID so poor diets make their immune system crappy coupled with the immune issues that come with ASD. It has not been uncommon for me to just be off work for days at a time as the boys get sick and then I get ill after being so run down.

I have low mood, poor health, I don’t prioritise myself and I’m exhausted. Antidepressants are required to function normally.

One of the biggest barriers for me has been the randomness / unpredictability of my ND DCs’ needs. Sometimes they could cope with e.g. going to school. Other times they would refuse, or I’d get random calls from school saying I had to pick them up immediately etc etc. Now that they are older they can still sometimes cope with work / education but it never lasts for very long, and I need to be there to pick up the pieces. Every time I think they’re on an even keel & have found their groove, it goes wrong and they need to be at home doing nothing for weeks/months. It’s draining and soul-destroying and has shredded both my mental health and my financial stability. Employers can’t (understandably) cope with an employee who may or may not show up for days on end 😢

I stopped work when DS was 5, and went back part time when he was 12. Term time only as holiday childcare would be impossible for him and only possible at all because I have a good support system and a very understanding headteacher!

I work part time. I like my job and feel it has value (I work in a public library) but I earn a lot less than if I had been able to continue my earlier career. My daughter has autism & severe LD. I did not return to work, after having her, until she was seven and got a place in a special school. I can only work because my husband can work from home on days I work and be there for my daughter after college, in term time. In holidays we use direct payments for a carer. My daughter cannot be left alone. She is 21. I feel out of step with my friends who have children now leaving home, starting their careers, embarking on relationships. My marriage is put under stress, we don’t get enough sleep & my husband & I put our daughter’s needs before our own to our own detriment. There is always admin related to my child’s needs. Life is stressful. But, my work is good for me. It is an identity outside of that of carer or parent. I think the fact that my job is one that is seen as beneficial, is sociable and utilises all my skills gained from being a carer (able to signpost others,empathy & so on) is key. I also leave my job at the door, it does not impinge on my home life at all. That is key.

I came close to a breakdown about 18 months ago.

Part of that was worry about not performing at work.

I told my boss that I needed to move on and explained the state I was in. He just told me that I needed to do whatever I needed, approved another staff member, and generally reassured me that I’m not a flake and that I do a good job and that the flexibility I need is there for me.

I gave up work during covid as my youngest's needs meant nursery wasn't possible and grandparents were at risk due to age/vulnerable health conditions. Since then my eldest attended school on a reduced timetable for a year, then spent 9 months out of school completely and has just started a new specialist setting where he's only attending 2 hours per day as he works upto going full time - this could take most of this academic year. So if I hadn't had to stop due to covid I certainly couldn't have continued over the past 2+ years. Then as others have said needing to be home to receive youngest from transport from 3.15 as no wrap-around care and I don't know how I'd work. I am completing SEND law training though and intend to initially volunteer helping parents navigate the EHCP system and eventually possibly become self employed offering EHCP checks/drafting advice and tribunal support. I miss working as it used to form a huge part of my identity but it just isn't feasible right now.

DD is 10 and luckily in mainstream with diagnosis of severe ADHD and suspected ASD. Husband also has ADHD.

the pressures I’ve experienced:-

Lack of family support, we have no family nearby. Few close friends but my DD isn’t able to access “normal” social activities without a lot of support which takes time. Also impacts my own friendships and relationships- people just can’t adapt or accept DD so I’ve lost friends. School friends are a rare thing and school gate Mum friendships also rare, she is not included in a lot of birthdays etc.

I gave up work 6 years ago to start my own business, one of the reasons was flexibility for DD - support before and after school, appointments, etc etc. Also gave up being a youth leader at a hobby, as she couldn’t cope with the hobby/group setting. We don’t socialize in the evenings, no pub socials or meals as too much for her.

Anxiety and worry - she is more vulnerable, I worry a lot about her future and the constant fight for support. We are trying for an ECHP but the barriers seem huge.

So impact psychologically is fairly huge. Loss of professional identity/having to start again, loss of friendships and relationships, loss of time, lots of anxiety and worry. My mental health has been shaky and it impacts my physical health as I am an emotional/comfort eater. I don’t sleep well. Also can be very isolating. We get through as a unit, I have started HRT and have 2 hours every Sunday to myself for a new solo hobby. School SENCo has been very supportive and we have a small group of supprtive friends.

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.

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).

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

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

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.

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'.

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.

Literally everything you’ve written is me. Everything!

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

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.

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.

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.

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.

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.