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

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

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.

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.

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

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.

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

@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.

@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.

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.

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.

@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.

In an ideal world, I think giving parents of children with significant needs some sort of weekly respite would be beneficial.

Something that must lead parents to despair is going through the fight to get respite, finally having it agreed that they do need and qualify for respite, to then only be awarded a pathetic 3 hours a week. Then to find out that it’s impossible to find anyone skilled enough to do the job because the pay and the hours aren’t worth it. Or they get given a day or overnight respite place at a facility that has a five year waiting list.

I dont work. I’m a lone parent and DD hasn’t been to school since summer 2022 so she’s at home full time gets hrc lrm dla. Father not involved and no family. She can’t attend any form of childcare and would be too old now for them.

Another thing it may be worth looking into is where the support comes from to allow people with care needs to work. The only reason I have been able to return to work is because I have a lot of family support (single parent amazing family!)

if I didn’t have two reliable relatives who can step in for school pick ups and look after ds (14) when he is ill I couldn’t work. There is no wrap around or holiday clubs (I’m term time only). The only respite comes from family

I think your point with wraparound is interesting, but it extends.

One of my barriers is my LA's policy on school transport for students on reduced timetables. My son is not able to attend school full time, due to school not meeting his needs. Not only do we not get wraparound, but we lose school transport too. So the only way he can go to school is if I do the long drive, there and back, twice a day. Basically I spend my life driving him. Some days it's literally all I can do.

The LA's policy is that they only provide transport for students who are attending FT. If your child can't do that, even if it's because LA is not providing a placement that meets their needs, they will not provide taxis or even pay petrol costs. It's disability discrimination. He is in secondary school and if it weren't for his SEN he'd have been walking to the local school independently for years.

I'm lucky enough to be able to work school hours during term time (I'm in the Civil Service). I honestly don't know what I would have done if Covid and home working hadn't kicked in just before DD, who has Down's syndrome, started school. Although she was part time at nursery before, I think we hadn't considered the logistics of the school day (my MIL used to do the childcare on 2 of my working days but wouldn't have been able to arrive early enough to do the school run).

School hours work great as it means I don't need to stress about DD being uncooperative during pick up or worry about needing to log back on for meetings on my return, but I am conscious about how it's affected my career. And work are starting to be difficult about going into the office, too (I'm in the process of completing a carer's passport).

Mental health wise I'm feeling pretty shit though to be honest (but only part of that is to do with work).

I have access to a lot of the above too ^ but it's no substitute for addressing the real issues of:
• proper respite (not activities you can take your child too, but actually involve you as their 1:1 carer)
• wraparound care
• early access to services eg speech therapy, school places etc that help children with SEND be as independent and have as good mental health as possible
• appointments outside of working hours and timely
• reduction in unnecessary meetings
• services actually doing their jobs and not needing constant chasing up

One thing we did after lockdown was join a gym together - we realised we never did anything together and we were getting so broken. We’ve kept it up since Sept 2020. This is facilitated by our paid for by DLA childcare - we go in the last hour she is with us after our work 1 day a week, and by our older children (now in their 20’s) who can help. We also try and go for a walk every weekend, again our adult children could help and now our son is in his middle teens he can be left alone for short periods of time during the day (would not come with us). Before this from 0-11 we never did anything together, as one always had to stay at home. It wasn’t good for either of us, and my health was really suffering - I put on a lot of weight and was very unfit. I tried outside childcare (various clubs) but he always hated them, and the organisers would always find a reason why they did not want him to come. The only one which worked was a Council run one where as they weren’t ‘for profit’ they had that extra leeway on helpers and they were expected it to be inclusive by the council, so there wasn’t that sidling up to you at home time ‘to have a little chat’.

I'd say I have access to all of these - it's the kind of thing I spend my time doing during school hours. But it's at the opportunity cost of working. For me it's better to spend my time doing activities for wellbeing rather than working. I've done an OU course with all fees paid as a carer. I have a council leisure centre membership for £10 a month (cheaper rate for disabled people, as I'm disabled as well as my DS) and it includes as much swimming, gym and classes as I can fit in.

Great topic for your Master's research! What research methods do you think you might use?
I have 3 DC aged 13, 11 and 7, all autistic, all currently in mainstream education. DS2 also has continence issues and an EHCP. I took a career break after returning to work 70% FTE when DS2 was 1 nearly broke me. Managed to return 50% FTE during term time once youngest DS started school. Now at 60% FTE and just about managing.
Barriers - mental load, exhaustion, difficulty getting into work mode particularly after DS2 has violent outbursts, feeling "on edge" waiting for that phone call from school, admin and emotional burden of appointments, forms, fighting LA for support etc.
Facilitators: great DH that is fully involves with DC and all housework. Fortunate to be supported to return to work (scientific research) with a fellowship that meant that although I am hosted by an academic institution it was up to me how I get my hours done. I realise I'm in a very privilaged position to be eligible for and get this OP look up the Daphne Jackson Trust - they have done research on returning to the workforce which could be useful to ypur project daphnejackson.org/). DLA covering extras such as assessment by sensory integration trained OT for the DC. We have not managed to find any holiday childcare so provision of that would be helpful, but really a nanny who could cope with DCs needs would be the best option as getting them out of the house is exceedingly difficult. For this reason although DS2 is eligible for "short breaks" he has hardly been on any. Plus since services for different aged children are at different times of day it doesn't really give us much of a break and just more taxiing for me.

My dd (14) has Complex Needs, including DS, ASD and Severe Learning Disability. I made some plans to go back to work when she started MS school - I was a teacher - but she went through a v difficult phase with CAMHS involved, not sleeping - we were under the sleep clinic - refusing to eat and drink and I had to battle school about unlawful exclusion, as they kept phoning me up to take her home.

I started volunteering in school and registered for supply teaching and then it was lockdown. Dd has a massive crisis in lockdown and we've had a massive crisis again this last year. So, sleep deprivation, poor mental and physical health, a child needing at least 2:1 care means no chance of work. Tbh, teaching when I'm already in burnout is not an option. The lack of funds at school has meant the after school club they ran has stopped and they are finishing early one day a week. In real terms, we've lost 3.5hrs a week, she was at school.

Add all the meetings and appointments as well as chasing appointments and professionals and it's relentless. I agree, it's such a waste of skilled, professional women (usually) who are not contributing back to society.

I work 3 days a week. DD is in year 11.
Reasons, she trashes the house so I need lots of time to keep on top of it, I spend a lot of time chasing various services for support, catch ups with school, making sure she does her on-line learning.
She didn't sleep until she was 8yrs old, I had to drop out of OU because of it. I needed to keep my paid job more.

I may increase my hours by a handful next year when she finishes school and even fewer services will bother about her.

My son is 21 with PWS and Autism. I am a lecturer. I went back when he was a baby. There was a nursery on site with brave, compassionate staff who supported us. Also more money in 2003 for additional 1:1 support. Nursery now closed along with others so if I had him now I wouldn't be working. Primary and Secondary was hard - my son has lots of significant behavioural issues that school found difficult..but I kept working. Used a childminder but always felt I had to be extra grateful for her having him..she made an excuse when he was 7 not to take him anymore (but really he was just not good for business). Reduced my hours at this point. Post sixteen was better, by adult social care I was part-time. What makes work difficult..I had an unhelpful employer but just had keep going. As he got older services got less- from 16 plus no service started before 10.00 and then finished at 3.00. All services (Inc school) presume that you don't work and cancel support at the drop of a hat. Also the services are so poor. He can manage money but is not allowed to take money with him because the support workers refuse to supervise his spending (he has no capacity with food but they still let him buy food) - I fear for the future. In addition we have never had family support (sadly all died before he was born) and friends fade away once he got past the baby stage. It's just me and DH but we manage and we do have a good life. What helps? - I sigh when people suggest yoga, walking, swimming...life is just too exhausting. Also you can't just pop out for a swim in the evening - how does that work?

I have 2 YP, aged 19 & 17. I have not been able to work since they were born. As children there was no suitable childcare (high distress due to ASD meant local playgroup / childminder sent them home). Then years of daily contact either school, medical appts, research, paperwork, Child DLA etc etc) plus the fact they didn't sleep, bolted etc. ExH refused to do any 'childcare' at all. No family around. I did work for 6m both YP became anxious & depressed. I stopped. So: barriers: lack of reliable Partner, poor support from GP. Awful school experience. Rural Location. Effects: long term for both physical & mental health for all 3 of us, struggling alone instead of being able to access decent support. I now look 70 not 50.

DS is 11, was diagnosed just over a year ago with ASD. I'd always had concerns about how DS was doing socially, but it was the return to school post Covid and his increasing inability to cope in that environment and increasingly violent meltdowns that led to the school agreeing a referral was appropriate. Eventually DS was unable to attend school at all.

I work pretty much full time. The reasons I've been able to keep my job are:

• working from home since 2020
• my job is flexible and my employer has been supportive
• DH was made redundant in 2020, is essentially self employed so between us we can juggle our hours around DS

For a couple of years we had a lot of appointments, sometimes three a week, between various services seeing DS and/or us - we had careers assessments, parenting support, OT, CAMHS, counselling, TAF worker, engagement team, meeting with the school. DS has sleeping difficulties, him being prescribed melatonin has made a huge difference to our lives.

DH has had to turn his hobby into a job to try and earn enough to cover his costs while I cover household stuff. He takes DS to school/picks him up when he'll go, school attendance is improving so we're hoping eventually we can use transport provided by the council but we're not there yet, looks after him if he didn't go. He also takes him swimming so he'll shower/change his clothes. I take over when I finish work, do the bedtime routine (he won't go to sleep on his own) and get up in the night when DS wakes as he won't settle with DH.

There's a very real possibility I'll be out of a job next year - I work for a charity, we may lose our funding - and I don't know how I'd get another job that gives the flexibility and support that this one does, they've truly been amazing but I've been there 20 years so had already proved myself before all this.