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?

@TinyYellow or getting overnight approved and a budget for respite and SS messing up the wording for it so we couldn't advertise for it.

My son finally does have a decent package of respite
He gets two over nights a month ,every other Saturday in a special needs weekend club
And a day a,week every school holiday inbtge same weekend scheme
It's taken years though ,he's only Bern having over nights for a few months respite is very area dependent and can be very sporadic.

Sorry to derail the thread but can I just ask? People are always talking on this kind of thread about the divide between people who have high functioning autism and people who have the other kind of autism, I think it's called classic autism. Anyway I'm not sure which one my 10 year old has. My other autistic children are definitely high functioning. He was officially diagnosed aged 6 after I first raised concerns when he was 2 months old. The consultant said he had low levels of need and said that was the new term for what used to be called Aspergers syndrome. I was never sure about this as his needs are much higher than his brothers. Anyway fairly recently his school became a thrive school and they did a test on him that showed his emotional development was equivalent to a 3 year old. His reading age is 11 years and his spelling age is 8 years. He is working at greater depth for maths and can do sudoku. But he is "expected" for about half his other subjects and "working towards" for the other half. The ed psych said he had a spiky profile. He is a runner and has to hold the teacher's hand when walking from the classroom to the assembly hall. Dh still has to physically hand him over at the classroom door. He has pica. He self harms and he is only allowed to use scissors under supervision. School are trying to get him a full time one to one TA. Meanwhile most of the other children in his class walk to the park and into town on their own or with friends. Ds doesn't have any friends. Part of me thinks with an emotional age of 3 he shouldn't be classed as high functioning but then I wonder if the classic autism diagnosis is just for people who will never be continent, non verbal and go to special needs school. And he can do sudoku which is pretty impressive for any 10 year old to be honest. Sometimes I wonder if there is a separate category for people like my ds and he has "autism with a spiky profile" which makes more sense than trying to work out if he is high functioning or not.

@elliejjtiny I think this one of the main reasons they did away with the terms 'high functioning' and 'Asperger's' and included them all under 'Autism'. You can have a very spiky profile and be high functioning in one area but really struggle and need a lot of support in another. The wording is still not perfect as some feel it's unhelpful to put those with huge support needs who can never live independently under the same umbrella as those who have struggles but who can still largely get by in life without much support (although some would argue that the mental health cost to those people can often be huge). Plus there are others who prefer to refer to themselves as HF or Asperger's as this feels meaningful to them. If I were you, I would try not to get too caught up in the 'type of autism' or the name and focus more your DS' needs. Hope that helps - I know this kind of thing tends to cause a lot of division online, which is a shame because nobody is having an easy ride and we should try to support each other and listen.

@elliejjtiny I second what @SpookySpoon22 says - one of my boys would be classed as HF and the other classical but it’s not that helpful really - their needs are different but if anything the non-verbal child’s needs are easier to meet as they are quite practical. My older son who is HF needs a lot more emotional support and guidance and finds life tricky. Younger boy is happy pretty much all the time.

Concentrate on meeting needs and getting the right support and educational setting.

I get the spikey profile butv i think people forget that some people with autism can't function at all in any area.

Yeah, I also get the spiky profile thing but I still think there's a distinction even if we don't use functioning labels etc.

One of my DC is has what was once termed Classic or Kanner's autism. Other DC has extremely spiky profile but definitely not what used to be called HF/Aspergers - has learning disability and was diagnosed in infancy but acts like Rainman (I know, such a stereotype!). Both are very high needs with extremely challenging behaviour. In fact I often find my verbal child more challenging tbh.

The reason I think there is a distinction is because I have many acquaintances / contacts with children who would have been called high functioning and even though they require a lot of support (no one is saying it's easy) they are actually able to go to mainstream school (sometimes without a 1:1) without, like smearing shit on the walls or something. Their grandparents can look after them without being knocked over (this happened to my relatively young and fit MIL), they can tell you if they need something (e.g. they are ill or in pain) etc etc. To put it honestly, they can just access so much more and and are much less vulnerable. Statistics show my DC with the more "classic" profile will die many years before my friend's DC with a HF profile.

It came up on this thread because I know, in my area at least, I can find regular childcare etc for verbal, continent ND children but not for my DC, so it was relevant I think.

Sorry @x2boys I was agreeing with you, looks like I wasn't from above post.

Some of the best times with DS was the two years I home schooled him (Y8 and Y9).

I worked out the house 3 hours a day, 4 days a week but DH worked from home mostly.

DS was so much calmer once all the school pressure was removed and as a result he was so much happier. His reading improved immensely and I was able to do basic maths, spellings etc every day to fill in all the gaps.

We had lots of time out the house, trips to London, museums, zoos etc.

It was great and I look back on those times as really happy and calm for all of us. It was a joy.

Then he did a 14-16 course at a local college and it all went pear-shaped very quickly. I regret that decision.

School just isn't the right place for some children. I wish I had taken him out much earlier.

This life is socially isolating.

I have no time or emotional capacity to sustain friendships in a way that enables regular, fulfilling exchange.

Sure, I wish friends a happy birthday on SM, and am still in various group chats with people who have been my friends for years, but I don't have the energy to check messages and don't feel I have anything new or interesting to contribute. I'm not socially proactive as I never know whether I'll be able to keep up an exchange once I've started it, or be called away to deal with something else. I'm a passive lurker in my own social life. I get invited to things I can't attend and if I ever do, I'm in knots, always checking my phone and leaving early.

Most of my friends, like me, work in education, social services or medicine / health care, so tend to be pretty up to speed with challenges faced by SEN parents, which is great, but I am so done with being this broken record of EBSA, LA battles and exhaustion that I just can't face engaging socially a lot of the time.

Edited to clarify that the social isolation is a contributing factor to poor mental health in many parents of children with SEN or ND.

@OvaHere I felt this little flicker of truth at the notion that our secondary years really would be better spent on walks, learning to cook and shop, volunteering, visiting new places etc rather than the well-intentioned let-down we have inched our way through so far, one painful day at a time.

...and I'm naturally an extrovert who delights in and feels enriched by social exchange and the company of others.

Removing my own disability from the equation, the biggest barrier I have is that there isn’t a school within an hour and a half of my house (in a normal town-I don’t live up a mountain in the middle of nowhere) that would accept my child/could meet his needs.

So I have to home educate and couldn’t work even if I weren’t disabled.

Even if child care could be found for around home ed and work I would get sacked pretty quickly because I would constantly have to be off/leave work because he needed to be collected or couldn’t go at all.

We have a 10 year old with Autism, ADHD and Dyspraxia and a 6 year old with Autism and ADHD. Both in mainstream, academically able, but need a lot of support and reasonable adjustments both in and out of school.

DH works FT and I work 4 days a week, term time only. I love my job (most of the time) but I know I am overqualified for it. I changed careers and took a pay cut a few years back to work TTO, partly to be there for the DC more but also because I was completely burnt out and exhausted. If I was able to work all year round I could have progressed considerably over the last few years in my new sector, but I am reluctant to give up my TTO contract because I know that eldest wouldn't cope with holiday clubs, which around here are almost all sports based (which she would hate) and run by people who are not SEND trained. Youngest might be ok some days, but I would always be half expecting a phonecall.

I have worked FT previously but dropped to 4 days for the sake of my Mental Health. I was permanently exhausted and felt depressed but had no time or energy to do the things I knew I needed to do in order to feel better. I feel I cope much better with balancing the demands of work and kids since I dropped a day. Sometimes knowing I've got a few hours to myself while they're at school to tick some things off my to do list (there is SO much admin involved with having SEND kids), sort the house out or just stare into space fantasising about running away and starting a new life somewhere where no one will ever find me (I'm half joking), is the only thing that gets me through the week.

DH earns well but he could be earning a lot more if he was willing to commute but he's made decision that his current job (10 minutes from home and DC's school, flexibility to WFH if he chooses, able to attend their appointments and school meetings) suits us at the moment.

I'm not complaining, as we are comfortable financially so luckier than most, but we have both definitely made career compromises due to our DC's needs and will most likely continue to do so as I'm anticipating the secondary school years will be tough. They are currently in a small, nurturing primary school who are very flexible and willing to make adaptions. I used to think 'i'll bide my time and go for promotions/more senior roles once they're more independent' but I've realised they may well need more support from us as teens when the social and academic demands on them get more complex.

Agree.

I have two DC both with complex needs, both awaiting neurodevelopmental assessment. I do work nearly full time but it's a real juggle with many barriers along the way. The main support I have is an incredibly flexible employer who accommodates all the ways my week can change at the drop of a hat. I was older and well established in my career before I had kids which has made negotiating with employers easier because I bring a lot of experience to the table.

Barriers, as other have said include multiple meetings an appointments, not just the time to attend them but also the time to schedule them. I have this week received two appointment letters for different clinics in the same health department, in different locations, for the same time. You can never speak to someone when you call so I've been playing phone ping pong trying to schedule appointments that work.

Lack of childcare, my 13 year old can't be left home alone, no providers will take a 13 year old so after school and holidays are difficult.

Lack of decent education provision. I'm in a place where I chose mainstream school to support academic learning but will decimate her mental health, or specialist where she will be safe but not actually be stretched academically.

The sheer length of time it takes to get the most minimal of support and the way in which it can be withdrawn with no notice. I was told 2 days before school restarted that my daughter's specialist school wouldn't reopen until the following week due to building work running over. Cue me needing to reschedule my whole week that I had planned on the basis that my DD would be in school.

There's the expectation that you are just always available- to attend meetings, health appointments, to pop in to school for a quick chat etc etc. There seems to be an assumption that if you have a disabled child you won't be working and so systems don't support working parents of disabled children. It all feels chicken and egg.

I am lucky that my oldest child who has very complex needs is taken out once a week which has given us and his siblings a lot of respite over the years. It's at times been the only way I can guarantee to be able to even sit down with my younger kids and do homework or play a game of take them somewhere they love but he can't cope with (soft play etc). My middle child is ND also but has different sensory difficulties.

Excersise - I have gym membership to a nearby gym. I try to go 3 to 4 times a week and love it.

Volunteering - I did this through an official organisation but the clients were very unreliable which meant I felt I was wasting the little time off I get to myself because they just wouldn't be there at ore agreed times. I do volunteer for my kids school on the parents council and with activities etc (I am currently a parent helper at the school swimming because DC2 becomes overwhelmed and difficult to manage behaviour wise). It's very evident it's generally the parents of the ND kids there helping as they know there dcs can't cope without them.

Courses -i enjoy these in face to face settings but would avoid the online ones. They are boring and lack connection so I zone out. I don't understand why certain courses are still being largely trained online years after COVID. Some courses need practical time and discussions with others.

School support -DC1 had a horrendous experience in his first primary school and was becoming traumatised from it. The school also tried to force me into giving up my job so I could pick him up early every day which I couldn't afford to do. I blew a gasket when I discovered a few weeks after him starting P1 that they had excluded him completely from class, denied him the chance to socialise with his friends from nursery and were leaving him with a PSA to be "educated" in a small room. Thankfully I was previously in a very senior post working with the equalities act and know the law inside out and put in a placing request to a school with a specialist ASN base. The request was approved within 2 hours as the education team knew I could take them to court and would if they didn't. My son settled happily within a week at his new school and thrived there until he left to go to secondary school. Again he has access to the ASN support and base does some subjects there. My middle child doesn't need the same support levels but does get some ASN support (same school as my oldest) and does fine generally though is becoming more difficult to manage as he gets older.

Support groups -I dont use them. The times are inconvenient (often bed and bath time for my 2 youngest dc) or school pick up time (i have very rarely ever met a parent carer who has family support that would mean someone else would collect there child to attend). It seems a lot of family members turn there backs or close there eyes when a child's needs make them difficult to look after. They are generally online (zoom type meets). I cannot think of anything I want to do less than sit in an online room with a bunch of strangers on an ad-hoc basis listening to there stories or being asked to share my private life and kids needs with. The carers group my kids could attend is over dinner time in the most inconvenient places in the city to get to. The group is only one hour and because of the location I have to sit in my car waiting. It also means the kids dinner is super early or late as I am out from 4.30 to 6.30pm which is a big no in a house where kids go into meltdown if dinner is late. It's not respite it's just another chore on my list of countless chores. I have flagged this to the people that run this but although the family support workers are fabulous the higher up staff don't listen to feedback

Walking time/outside - I hike in the hills with friends at least once a week. I love it and it clears my mind.

Hope this helps.

Sorry I forgot to reply about money.

We are very lucky that we are in receipt of Child disability payment for both ND children. I also get carers allowance because I can only work very part time hours (a couple of school days a week max term time only) due to the kids needs and lack of family support. My kids can't cope with holiday clubs either. DH works full time but has not been able to progress the way he should have done career wise because of the kids needs. He had to step down from his last higher grade position as DC1 meltdowns and behaviour meant he couldn't manage both. We have a low mortgage which makes a massive difference and no debt apart from a small monthly car payment and are both good with money management.

@x2boys and @BackForABit I completely get what you're saying. I was really just trying to explain to the poster that things have changed in terms of terminology (for better or worse) but that ultimately in her case I didn't necessarily think it was helpful to get caught up on the wording (although I appreciate that it's a contentious topic that warrants further discussion). Hope that makes sense as I don't want to cause any offence.

My DC all have additional needs and/or disabilities in some form, although one DC's needs are such that they don't affect his independence significantly and he is fairly low support needs (he only needs help with very specific things.....sorry to be vague, just trying to explain without being outing as his condition is more unusual!). The other two DC have higher support needs, while still being in mainstream school.

I haven't read the whole thread yet because I wanted to give my own thoughts without being too influenced by what others have said.

Mornings are hard and take ages. Getting more than one child with additional needs up and ready and to school takes a long time! I'm very lucky that my job is not 9-5 and involves home working, althoughis not 100% home based (don't want to give more specific details) but I would have been sacked by now if I had to start at 9am!

All of my DC have a lot of medical appointments and school/other professional support meetings, which means time off.

I often have to go and collect my children from school if they are unwell, and they have many more days off than average.

Two of my DC would not cope with holiday / after school childcare. My husband and I have had to arrange our work hours so that someone is always at home and not working when the DC are home. We have been very lucky to manage to do this, but it greatly limits our work options.

I need to use most of my annual leave to cover school holidays. I have a very flexible workplace and thankfully this is not a problem, but it could be a problem in many jobs.

I'm exhausted! Two DC don't sleep well, and I have my own physical disabilities and neurodivergence to cope with as well, which means I am more tired than normal even to begin with.

Colleagues don't understand (how could they? I don't blame them) and I try to put on a cheery, wide awake mask at work in an attempt not.to draw judgement for being shattered and emotional. This is very tiring in itself!

I can only work, even in the flexible job I do, because I have my husband. We have no other family nearby and if anything happened to my husband I would almost certainly have to give up work due to the DCs' needs.

I will have a read of the rest of the thread later as I'm sure I have missed things, but these are my initial thoughts.

My partner and I work part time and tag team to care for our youngest autistic child. It has been extremely challenging as his mental health has deteriorated and he has rarely been able to leave the house and not been to school for 18 months. We worked part-time when they were little as a conscious decision to share childcare but, as our autistic child's mental health has unraveled it's become a necessity. Personally I have only been able to continue working due to really supportive manager and a close supportive team-l.Not sure if it's relevant but, I work in healthcare in an all female team and I've felt really loved and supported. I've had to have time off for my own mental health when my son's sleeplessness and violence were at peak (he has had phases when he would go 48hrs+ without sleeping)
I'm realising how fortunate I am writing this as when I was off with my own mental health due to my son's deterioration I never felt judged by colleagues and actually felt very cared for. On my return to work my schedule was adjusted.**However of course both my partner and I have missed out on job opportunities and career progression as a result of having a child who doesn't have appropriate education provision.

These things are also not always practical and/or desirable for neurodivergent/disabled parents (autistic children, for example, often have autistic parents....) I'm autistic with multiple other diagnoses too, both ND and physical. I am limited in terms of physical activity and can't cope with groups well at all/would need a lot of my own support for something like this, or volunteering for instance (even if I had time!)

Personally I have found that local support organisations/charities specific to the needs involved (e.g. autism support organisations) have been the most helpful, because people really understand/get it and can offer emotional and practical support from the perspective needed. I am very open to other suggestions!

I have 3 kids who are all neurodivergent.
All now 14 and above.
All mainstream and 2 have ehcp

Barriers are school run - would not cope with stranger transporting them. Rarely cope with sibling in car so often more than one school run.

School refusal - most weeks one child is not able to attend at some point (overwhelmed).

Collecting kids for behaviour at school (once a month)

Dealing with complaining phone calls / emails from teachers.

Juggling responsibility for kids at all times - if I have an important appointment my husband has to block out time IN CASE one of our kids is struggling wherever they are.

Being responsible for my kids at all times wherever they are means i have no real switch off time. Any down time can be and often is interrupted without warning. Leaves me always on edge.

Appointments - therapy, school appointments, appointments for parental support

Paperwork - dla/ pip/ carers/ ehcp etc etc

Constantly being 'on' affects my mental health. Have been affected by kids aggressive/ violent behaviour so constantly listening to head off any escalation as early as possible. Sleep affected. Adrenaline levels awful. Depressed as now I can not relax. Feel hemmed in as self expression curtailed - eg music can be a trigger. Creative activities easily interrupted. Difficult to leave house.

Kids like to attend clubs in theory but very unusual that they manage to attend more than 50% of the time. More stressful working thru whether or not they want to attend and the stress release after.

Family far away. Kids can't be looked after together therefore child care impossible

Good luck with your masters

I work, but very part time. I would love to do more but for me the barriers are wraparound care, exhaustion, mental/emotional energy. I have a son who is profoundly autistic, non verbal, severe LD, very challenging behaviour. His school doesn't have breakfast or after school club, there is nobody else that can cope with him, and not enough funding for the 2:1 respite care he'd need. If I funded it myself there would be no financial benefit in working. I work in a term time only role as there is no school holiday club he can access, and no suitable care.
Sleep is very poor, he's often up all night and he needs constant supervision, DH and I try to take it in shifts but it's exhausting, and I'm often at the physical extent of what I can manage.
The mental load is huge, and probably unimaginable to someone not living it, and I feel like my cup is full all of the time. So I stay low responsibility in my role, as quite frankly, my previously sharp brain can't take much more pressure!
I don't make a huge amount more than carers allowance, which I'm not longer eligible for due to working, but I want to work, and I want to think about something else for part of the week.

Suitable wraparound care is most definitely something that would make a huge difference. Our school doesn't even have an after-school club anymore, let alone one suited to additional needs in any form.

Two kids with asd and adhd. Both in different specialist schools. I work part time (32 hours a week). I’ve only been back working for 5 years (kids are now 12 and 15). Thankfully it’s remote and term time only but our youngest is very very challenging so I couldn’t do anything else. We get direct payment for carers but can’t find any, neither can access any send holiday care (which is miles away anyway).

I’ve got a job that requires a whole new skill set and I don’t feel like I’m doing anything well. My other kids say I’m snappy and grumpy which I am but I’m knackered. My physical health is awful and my mental health is in the toilet. I’ve no friends, our youngest controls every aspect of our life, but especially my life. I don’t feel at all connected to the world. My youngest’s needs have taken over my life that these days I feel like a carer rather than a parent and I’ve found work (although they’re lovely), that the demands of a busy job add to my stress. So much so, I’m thinking of leaving.

I would love to connect with other parents in a similar position because I’m so lonely. If anyone wants to chat, do PM me.