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

I work full time as does my husband.

No wrap around care
No summer holiday clubs
No after school extra curricular activities
No family childcare
Flexibility needed for appointments/school meetings etc.
The amount of hours needed to be put in for things like EHCPs and appeals.

We are fortunate that currently our child goes to a local school but in the next year or two this is likely to change to a specialist school over an hour away. No idea how well balance work then, he's not really suitable to be sent off in a taxi.

I cannot imagine how I'd work full time without a supportive husband and supportive employer, in a role which allows for flexibility over location/time of day

Husbands employer has also allowed him to flex his hours so he can do pick ups half the week

Barriers. The biggest one being his need for 2:1 care. Trying to find 2 carers, with the training, with the availability to work together and aren't going to charge me a horrific amount (going rate locally is around £25ph for challenging behaviour) doesn't happen.

Meetings. Always in school hours and always with the expectation that you WILL attend. There was much sucking in of air through teeth recently when we cancelled ds's annual review. More than one 'are you really sure you can't attend' type of comment. At the time I was unwell in hospital with sepsis, totally delirious, didn't even know my own name and thinking elephants in pink stilettos were walking through the room kind of unwell. I'm sure an annual review in that state would have been a piece of fucking cake.

Hoop jumping and then some. To get a prescription for melatonin for my non sleeping DS I had to go on a sleep parenting course first. And then be able to evidence that I had been implementing the advice for 8 weeks before I would get a paediatrician appointment. There is a VERY good reason sleep deprivation is such an effective time form of torture.

However, and the reason for the name change is that I have had YEARS of gaslighting, disbelief, accusations of embellishment, parent blaming and just about every other kind of shit you can think of. I strongly believe that battling a broken, inherently flawed and wholly unfit for purpose system is the reason I developed ME. Severe ME at that. The irony is caring for my disabled son has left me disabled and in need of care myself.

I was called by the school to fetch my dd regularly, think 2-3 times a week. Yes I lost jobs but eventually I found work that understood, could take her with me too ... amazingly once she realised that me picking her up didn't mean going home she managed to stay in school more! That tells you a lot about how her school was pretty rubbish by then and she is pretty manipulative too

You're welcome @elliejjtiny I had to smile re your DS5 learning social skills from the cat. We love cats and I often find myself talking to ours 😆

@Merryoldgoat and @SpookySpoon22 and @x2boys Thank you for clarifying. I agree that sometimes it's harder for my ds1 and ds3 who function the highest out of my dc. For them it's like being NT is their 2nd language. They can appear NT but it's extremely hard for them and sometimes it goes wrong. Ds2 is like Sheldon from the big bang theory and ds5 seems to have learnt all his social skills from our cat. Ds4 has GDD and no autism and his communication skills amaze me all the time as I am used to the others having autism.

I’ve been reading all your posts and reflecting on our own experience. I said earlier that I was able to work throughout my ASD/PDA child’s childhood because of significant family support, but actually when I look back (he is 20 now), that is too simplistic a description of what happened. There were tremendous ups and downs, periods when I was between jobs and a year when I was off work due to a breakdown. DS out of placement, or in schools that couldn’t meet his needs.

The struggle to find a school to meet my DS’s needs never really ended. That was the main stressor. It just didn’t seem to exist, and the placements he had that did work OK for a while broke down eventually.

-He was excluded from reception in mainstream (got his diagnosis and Statement as it was then at the very end of his reception year.) That was after a year when I was on maternity leave for my younger child and it was hellish. I constantly had to go and pick him up because they couldn’t manage his behaviour, and I was in the midst of a fight to get him diagnosed with appointments and therapies and then battling the LA for a Statement.

Year 1 & 2 he was in an autism provision in a mainstream school . First year was amazing, and I was able to work full time and do a Masters on top. Second year all the staff changed and it was a shitshow. He was excluded from LA transport for his behaviour and then effectively being locked in a room all day, so I withdraw him and dropped to part-time work again.

Y3.4,5 he was in a different autism provision which was pretty good and I worked full time.

Y6 when they started doing secondary school transfer events DS couldn’t cope and started refusing school. Was out of school Y6 & 7. I worked 30 hours a week term time only in Y6, with a VERY understanding employer who gave me days off and flexible hours to meet DS!s needs. DH was at home with DS trying to run a business and it was brutal.Y7 I had a complete breakdown and was out of work for a year.It was a hideous, scary time.

Y 8 & 9 he was in residential school. The fight to get this funded, the time and stress involved in visiting schools and finding him a place - a whole other story of horror. When he settled at this school, I was able to work full time and got a management role.

Y10 his school was closed by Ofsted for safeguarding issues. Traumatic all round and again, another horrific story that would need its own thread (about how some special schools take millions of pounds in LA funding and use it to gamble on financial markets rather than meet the needs of SEND children). He was home for Y10 and deeply depressed. I worked full time but was permanently stressed and exhausted.

Y11 he started another residential school but lasted one term before we brought him home again as it wasn’t meeting his needs.

He did the rest of Y11 with a special school in a different area of London - very part-time, some online. It was a joke really.

Covid hit for sixth form and he did some online stuff with the same provider, but it petered out eventually.

When I look back the whole thing was nuts. I can’t believe any of us came through it reasonably intact.
I totally understand why some choose to home school. For us, I don’t think it would have had a better outcome for DS and me and DH would’ve probably gone mad and split up.

My career ramped up post Covid lockdowns and DS no longer having to be in full time education, though. . I got rapidly promoted three times and seem to have some sort of decent career after all the shit. DS has just finished a supported internship, something I never thought he’d be able to do. So not all doom and gloom.

But my GOD, there has to be a better, easier way.

I'm spending the day researching an SEN appeal. It's all such a high stakes game where parental ignorance (I'm a teacher and still can't really navigate this stuff as effectively as I probably need to) and inexperience is cynically used against us. I've not seen either of my DC for more than 10 minutes today, as am buried in SEN paperwork, and it's a beautiful, sunny Sunday.
I am so cross about it!
Preparation for my actual job is delayed too, not sure how much I'll realistically be able to do.
I'm always making impossible choices. Reading this thread makes me think I should seriously consider giving up my career.

@whereonthestair I've often thought that if I had lots of money, many of the problems we have would be solved. We'd have full time nannies, outsource cleaning and housekeeping and also use private SALT, OT etc. It would just be so much easier. My non verbal child hasn't had SALT for 4.5 years and even then we paid for that.

I worked full time initially then had a major breakdown (no family support around as we lived abroad) moved back to UK and worked very part time (10 hours to stay under carers allowance limit). I’m degree educated and was in a professional well paid role. Unfourtunately it wasn’t an industry that encouraged part time hours and once out of it for a few years you’ve lost a lot of skills.

Primary school ages were reasonably fine, found a holiday club that would take him and work were flexible.

Secondary school was great as it was a SEN school so less phone calls and less meetings but due to age holidays clubs were few and far between. The ones I did find were short hours and limited days.

post 16 and full time education generally means 3 days and those aren’t even full days so much harder to work. Summer holidays were also even longer. As an adult he could access day services but those are also short days. Also have lots of additional paperwork for direct payments, finding PA’s, social workers etc. I

Now on a supported internship. No transport provided, limited travel training prior to starting. Currently only in 2 hours a day 4 days a week. Re enforcing public transport which takes 45 minutes each way so no time to come home before it’s time to go back. No idea when his proper timetable will start as just been told that they will stagger the starts.

Biggest barriers in general have been not enough wrap around care, fighting for transport, fighting for social care hours, not being able to find PA’s even when you have hours. Too much paperwork and not enough support. I don’t work currently and haven’t for the last 2 or 3 years.

i do have a husband who did 50/50 when we both worked full time. When we moved back to the UK I became the main parent and he was the main breadwinner. In later years he has burnt out mentally and physically and medically retired a few years ago. He does his share of pickups and drop offs but mental load and admin is all on me. No family close by but they do help when they can (my sibling is coming to stay for a few days soon so that DH and I can go for a few days holiday).

I have a physically disabled child. I now work full time and earn well. For us it was when DS was young that there were the biggest barriers, caused mainly by the lack of NHS staff. So we had physio, ot, speech and language, orthotics, paediatrician,s etc. mostly delivered by part time staff which in principle was fine, but the therapists seemed to leave annually, so then we’d have a new one, and they’d work completely different hours/days. So if I had been working Monday, Wednesday, Friday then they suddenly only work on Monday and Wednesday, So then I’d have to change my working pattern and switch days, impacting my nursery, and the team of people I work with.

Because I earn well I ended up deciding the only way to deal with this was to pay for full time child care with full time 1-1support in nursery and just use it 3 days a week etc. Then at school pay for a full time nanny I didn’t need.

Then I paid for other support (still do) to outsource everything I could. I am however also self employed, and employ others, so when there is a crisis I lean on my colleagues. However they also lean on me. I give them flexibility for their own kids appointments etc (there are 3 who have ND children, and another with a child with a medical condition needing care). It sort of works, but because we are lucky, and have money to fill in the many gaps in provision by just paying for it.

DS is older now, and for us the most useful practical help had been para sport sessions. They get DS moving and meeting people like him he doesn’t meet elsewhere, and get me out of the house with him.

I agree about holiday clubs. We have summer ones run by the local council for children with EHCPs or fsm. However, the funding will stop next year and most of the clubs that say they are for SEN are really not. We had a v upsetting time at Special Olympics Tennis, where apparently dd was too special. I thought she'd actually managed v well, seeing as it was new to her and supposed to be for any level.

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.

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.

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.

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

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!

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.

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.

@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.

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.

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.

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.

Agree.

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.

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.