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 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.

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 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).

@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'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.

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.

@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.

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 😆

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

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 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