Working and SEN children

[Merryoldgoat]

I’m now rounding on week 3 of illness in my house and owing to kids’ SEN getting into work is near impossible. I fear goodwill is running out.

So a quick poll

YABU - I work full time or near enough with SEN children

YANBU - working with children with SEN is not possible for me

It depends on childcare. Childcare was impossible with my disabled son. There were no groups that could have him & difficult to find 1:1 - certainly couldn’t book any long chunks. I did work but was self employed & worked when he was at school or respite. Had 2 other kids. I was fortunate enough to he able to do a professional self employed role from home that didn’t have short deadlines! Without that working would have been impossible.

so YANBU

I work 30 hours a week, it's getting harder and harder to get my dd10 into school as she loathes it. Luckily I have an understanding manager but I'm late most days.

My son is now an adult and is supported 24 hours 2;1. I can only work full time because I work for his providers.. I have retrained into a health related role and realised during placements that full time work was going to be impossible & I’d only be able to do 2 days if no flexibility, 3 with flexibility. It can be really tough & anyone judging hasn’t understood the situation.

I’ve tried to return to work after ten years at home. I’ve reduced and reduced my hours and I’m still not managing.

I have three autistic dc. All ‘high functioning’ if you like that terminology, by that I mean no learning difficulties.

It’s only getting more demanding as they get older and I also need to give my neurotypical child some time.

Seriously considering handing in my notice ad the stress of having work hanging over me is just too much. Even working one day a week.

I’ve home educated for two periods of time and think that soon I will need to again.

YANBU -

We have 2 kids with ASD, but only the youngest has high needs. DH is a full time carer for our son, he could not manage being in childcare after school and my shift hours do not help as I do days which start very early before the kids get up and nights which don't finish until after they need to leave for school.

Currently DH is retraining so that he may be able to do part time hours around school pick up requirements and then I could go part time and we would share the childcare and both of us have some work, otherwise DH will be left with a big career gap.

I think if you have a child/children with complex health or additional needs it is very difficult to manage full time work around the care they need.

We're both FT at the moment in very flexible public sector jobs but I think we're on borrowed time, as DC1 has just started school and wraparound/holiday care is clearly going to be an issue.
We need to decide whether to both reduce our hours a bit or whether one us should commit career suicide. We both have fairly similar incomes so there's not one obvious breadwinner which makes it harder.

It is so reassuring hearing other parents face the same struggles as us. I’ve found people I know don’t really understand why I’m not working and then I feel like I’m the laziest person in the world. Mine actually don’t have lots of appointments, they’re autistic but there’s no SALT or OT or anything for them. It is primarily the childcare and their ability to cope with school being negatively impacted if they don’t have a safe space to come home to. And there’s little stuff like my eldest who is in secondary mainstream has a bad day the public transport home can be too much so they either need to be picked up if possible, or calmed down over the phone and basically talked home and met at the bus stop.

If you can both reduce I think that would be my preferred option. It’s nice to have something outside of the kids and it means you aren’t reliant on just one job always being there. Gives you both some independence.

I work 3 days, have one disabled child (reception aged) and two older primary aged kids.

May look at going to 4 days but things work as they are so I don't want to mess with the fine balance I have carved out.

Well. After a small panic last night I talked to my manager today and told him that I think I need to leave.

He talked me down and told me to do what I needed to to look after the children so if that meant WFH more etc he wasn’t concerned and was happy with my work and how I worked and was supportive and understanding.

I’ll take some time over the next few weeks and go from there.

I don’t feel glad anyone is dealing with the same stuff as me but to be honest it’s really helpful to see how normal it is with children who need more support.

I tried to write an account of my day which has been fairly typical… it’s hard as it’s impossible to capture the firefighting behind the scenes and the planning it takes to keep things ticking over. I am also anticipating being accused of mollycoddling and indulging my dc… I have tried being less accommodating and all that happens is that their needs aren’t met and so meltdowns and anxiety increase…

Get up. One dc doesn’t sleep well and is resistant to getting up so I have to cajole, check, encourage, cuddle while she screams and throws things around.

Another dc takes 40 mins to get dressed because he forgets what he’s doing and sits daydreaming in his pants. I have to stand outside his door promoting him at every step. They need reminding and supervising to have breakfast and brush teeth. One refuses it so ends up eating breakfast biscuits at school.

Take them to school. Only one of my dc can manage the bus. Because I’m taking the others in anyway they all get a lift. The neurotypical dc goes in independently but I have to take the autistic dc to the door even though she’s three years older. I have to walk her into the building to hang up coat etc. Quite often she doesn’t want to go and cries. I end up taking her in the quiet entrance and sitting with her in the library with a teaching assistant. She may then go in or may end up coming home.

Come home, clear up carnage from the morning. Today one dc has an appointment that’s remote and via zoom so that takes a couple of hours. Then that dc needs to be taken to school. In the afternoon, the remaining dc goes into school for an hour because that’s all she can manage. It’s a huge achievement as she didn’t go at all for most of last year. She goes in for an hour 1:1, so I make another trip to school. On a good day I can go to the supermarket while she’s in there but on a bad day I need to sit outside as otherwise she can’t cope with going in. She needs to take my car keys in to make sure I’m not leaving.

I pick my primary school dc up and then go back into the secondary school to get other school who needs to leave ten mins before the bell to avoid the crowds. Then wait another ten mins for the remaining one before going home.

Get dinner ready for everyone. Usually accompanied by one dc having a post school meltdown and another melting down because of the noise of the first one screaming. Neurotypical dc usually crying and scared.

Paperwork to do for IDP meetings and DLA renewals. Correspondence is never ending. Takes hours.

If there’s an extra curricular group I need to take them to that. Two dc have anxiety about these things and I usually need to stay nearby. Which I do in order to give them the experience of joining in.

They don’t like showers. I cajole and listen to meltdowns about that. Two of them need help organising themselves for the day. Only one can do homework without me sitting next to them keeping them on task / managing anxiety about doing it wrong / keeping them motivated.

One melts down at bedtime which takes ages. Another needs help to shower. They all need help getting their things ready for the next day.

I try to give some time to the neurotypical one who is still little, to have a bedtime story and hear about her day, practise her instrument. I also try to make sure the house isn’t a shit tip / encourage them to do their daily jobs.

Another comes downstairs when the others are in bed. She needs it to be quiet and this house just isn’t. If I don’t watch the same programme with her on repeat she is unable to sleep. When I haven’t done this it has involved crying and panicking because of the disruption to her routine.

Another doesn’t sleep well and gets up repeatedly to tell me she is anxious and doesn’t want to go to school tomorrow.

It’s about midnight when it all settles and I can start working at that point… but I am effing knackered and it will all start again in the morning.

I love my dc and I love our life. This is just the challenges and there is fun and laughter too (sometimes!)… but at the moment I am struggling to work, and I do feel guilty and like nobody gets it. None of them can cope with after school care, they need to be at home and need down time. School is too much for them, they can’t stay longer in wraparound care.

Home Ed was easier but they want to try to attend school. So I try to facilitate it. But how I can work is beyond me. It’s the headspace too. There is no focus left in mr and feeling stressed about work while I do all this is usually more than I can cope with.

I did this a few weeks ago which is how I ended up working one day a week from home. Still don’t seem to be able to! I don’t really want to leave even though I would be relieved in the short term as I worry about what position I’ll be in when dc are grown up.

@NoYouSirName

That sounds utterly draining.

If I find it hard I can’t imagine what you must be feeling.

I can't put YABU because you totally aren't. I've just had a discussion on FB with a friend (our DDs are at mainstream together) about our DS and their schools. Her DS gets a taxi to the local generic specialist but it keeps being late and he has autism and the driver also keeps changing so SHE keeps being late for work. She is a HCP and can't be late.
My DS school had a really vague transition period (and this is his fourth school since Reception, he's in Y6) and they didn't seem to understand that perhaps one or both of us needed to be at work by 9, and not trailing in with him for two hours for a fortnight. There is NO after school/wrap around/holiday care for him - and even if we split the holidays down the middle we couldn't take all the school holidays AND after school slots as AL. And then we'd get no family holiday, and DD would be in wrap around care 9-5 about 46 weeks out of 52.

I have just moved up to 4 days a week, and DH is 4 days a week but due to retire soon.

@Merryoldgoat thanks so much for validating that it is indeed a lot! This thread has helped me too, to see that others are in the same position and I’m not being a massive wuss or workshy!

There’s just no childcare to help. Even if you can pay someone it’s finding that someone. I work 32 hours a week but have been on the verge of quitting over periods because the balance is so difficult. My DH pitches in but he’s got the way more senior job so the kids plus my job fall to me. I think a lot of people just don’t realise the mental toll it takes on you. One of my dc is very rigid and keeping everything balanced for her is mentally exhausting. Every tiny thing has to be thought about.

I work FT, although with a decent amount of flexibility around hours. I will often start working at 0730 since I’m up so early anyway, but can finish at 1630 and perhaps pick more up in the evening if needed. I do struggle with (1) working when very sleep deprived, it’s quite a cerebral job (2) worrying it’s not the right thing for DD and she’d do better being home with me for some of the week. But I am good at my job and it gives me a sense of control somehow when home life can feel the opposite. I don’t really have a social life so I guess that frees up a bit of time for work too.

i wonder how long it can continue looking at some of these responses, which does make me sad.

I have a SEN child and an extremely good manager - incidentally, a very involved dad. I consider myself very lucky. But I wonder why in the U.K. law there is nothing similar to a law in my country, where a carer of anyone with a disability has a given number of paid leave days to attend appointments, therapies, manage emergencies etc.

In every EDI/future workspace/whatever staff meeting I find myself involved in, I suggest a change in internal policies towards this. If the manager I had until maternity leave hadn't left - he was almost policing my loo breaks - I would have left.

I think having them in the right setting makes a massive difference, although appreciate that is not easy. When mine was in ms there’s no way I could have gone full time, the metal load and stress firstly, then the constant calls and exclusions and having to leave work pick up at short notice. He’s now in a specialist setting and I’ve never had to pick up unexpectedly except when he was ill. Your job and it’s flexibility also makes a massive difference, i can generally leave and take holiday at short notice or can work from home, although work prefer us in the office they don’t mind wfh odd days. I’ve also been at my workplace for a longtime way before Ds was born so they know I am reliable, it would be much harder to walk into a workplace and expect them to be flexible from day 1

YANBU. I work 3 days a week because we have a toddler too. Luckily I work from home. School will not accept DS into breakfast or after school club, they allow him to go to football club but ask I come along to supervise. No grandparents help. Regularly need to have meetings with school which I try to keep to my days off but means dragging toddler along. Then they regularly call asking for DS to be picked up. Near on impossible to work once he's home with me. I try to get up early amd work before school but neither of them sleep well.

I'm incredibly lucky reading the thread.

My son (11) attends local specialist secondary. He gets transport. Because he is in the right setting there's no drama or unexpected pick ups etc. I still worry that this will change!

I work from home with a good boss. Have been with company 5 years and so am known as reliable. I'm the larger earner for family. A very demanding job with some travel which logistically is hard as no family to help.

Husband works FT out of home as SEND Teacher at different school. He's very absent term time ( long hours) but is obviously there throughout holidays.

Previously when my child started his specialist primary ( which had no afterschool club or childminders as was too far) we had a huge amount of stress when I was office based. I used to pay afterschool nanny's. Was a nightmare to organise and cost £600 per month. Then we had a struggle with transport and that was awful too.

It's so fragile and mentally exhausting

I think that’s the thing even if you work full time it is often very fragile and only takes one thing for it all to go wrong. I posted in Aibu asking for advice on something and a number of posters said my situation wasn’t sustainable long term as it could go wrong so easy and I needed to sort out back up but I think it’s just the reality of having Sen kids and working that it is very fragile

Gave up lovely, very well-paid career to be full time carer to PDA/ADHD DS, who needs home ed. The financial hit is very difficult, and I miss my work terribly, but the reduced stress regarding school attendance challenges has improved quality of life for us all.

I think fragile is a good way to describe things. We know FT working isn't sustainable long term but financially I think we have to keep doing it right up until the point that it actually becomes impossible, and just try and plan/save in the meantime.