To think it's impossible to have a career AND a child with SEN?

[meanieleanie]

If you think IABU - please tell me how you do it!

Holiday childcare provision is limited for children with additional needs, especially older ones. You're constantly waiting for the next phone call from school about their meltdowns or another incident. Regular meetings with SENCo. Specialist appointments/weekly CAMHs appointments. If you've got a school refuser, you're often late for work, or at risk of being so. Completing homework requires extra time and attention.

I'm feeling completely disillusioned. I'm in a role which, at the risk of making me sound like an arsehole, is way below what I'm capable of doing (and consequently way below what I'm capable of earning). But I don't need to be available outside of hours, no major projects are at risk if I have to dive out of work, no one minds too much if I'm late.

And this is from the perspective of someone whose child has relatively
mild SEN, not anywhere close to warranting an ECHP. I can only imagine how tough it must be for parents of children with more severe SEN.

I've managed and on my own too

I could have been higher, but I have a decent career and manage to pay bills etc

Childcare was hard but good relationships with kids clubs, flexi time and the ability to take work home have helped

I'm afraid that I have found the most difficult time to be late teenage / YA as the provision is so patchy or difficult to access. It's very frightening after all the support when they were a minor.

This is where I am. DS is 4 & in special nursery school. Diagnosed ASD & awaiting epilepsy investigations.
I’m on a career break from a decent job, super benefits & holidays. I really want to get back to it but I don’t think the hour commute each way is gonna be feasible.
I worry about my future ie pension. What if for some reason his dla doesn’t get renewed so we’d lose that, tax credits, carers...We’d be absolutely fucked.

Yes in one fell swoop you lose child benefit and child tax credit as well as child maintenance because they have turned 18. A huge financial loss and even more care with MH issues on top of the SEND now. Oh well, i now have a PhD in resourcefulness

It’s tough, but I am lucky in that my job is flexible and my boss very understanding, so I can catch up on work in the evenings to make up the time we miss during appointments, hospital stays and general running around. DH is the same and we share things between us. We also have a nanny, as nursery and after school club is not an option (again lucky we can afford this), we have no family support nearby. But, we had to fight to get the hospital to train our nanny to administer medications to our DCs. They said they only train parents, when we asked what working parents normally do their response was that they normally give up work. The system is just not set up for working parents. Fortunately our consultant is wonderful and is also a working parent of a child with health problems so she supported us. So I think you can have a career, but only with the right support (family or paid for) and if the job is flexible enough to accommodate all the appointments and so on. I don’t think it would have worked for us if I had DCs earlier in my career and hadn’t already proved my worth and reached the level of seniority where I can be more flexible and got the salary to pay for a nanny.

YADNBU- I've managed to maintain my current role at the moment whilst my DD is in reception. The school however have told me that they will be informing us whether mainstream school is suitable for her after Christmas. I genuinely don't know what will happen if she isn't. She has an EHCP but special schools are miles away and I don't drive. I have another DD so I have no idea how to handle nursery and getting to and from a school miles away.
Coupled with the fact that we're called into meetings every other week and being asked to attend workshops. I'm having to use up my holiday to attend these just to hang on. I love my job but I'm not sure if it was I'll be feasible next year. to you.

Yep, DH and I are effectively taking turns at having a proper job. We've recently swapped roles and I think that's made him realise everything that goes into it. I'm now keeping watch on his mental health as I know how it affected me.

I couldn't even manage a part-time job with a very flexible boss. I gave up work when we worked out that dh had spent all his annual leave one year in either hospital appointments for the ds's or providing childcare for fixed-term exclusions or school refusals. I remember one multi-disciplinary meeting where he calmly told everyone sitting there that whilst they were working this was his holiday! So now I use my PhD for selling rubbish on ebay! & filling in DLA forms etc.

An alternative to holiday is parental disabled leave that you can take albeit unpaid in chunks of one day. I used this to attend cygnet parenting course. I think you are allowed up to chill 18 birthday

Agree, sadly. My youngest DS has developed severe anxiety since starting secondary school last year, and is now school refusing. While we, the school and CAMHS try to decide what happens next, my DH and I have had to reorganise our working hours so that someone can be at home with him.

My DH has a professional job where luckily he has been able to condense his hours into longer days and a day off. I have part time lower paid job, but it is hard when I was expecting that once both my DCs were at secondary school, I could start looking at more hours and responsibility. My perfect full time job came up recently and I felt sick at not going for it. As it is I am on the brink of having to stop working altogether.

My husband manages just fine....🙄

I worry about my future ie pension. What if for some reason his dla doesn’t get renewed so we’d lose that, tax credits, carers...We’d be absolutely fucked.

This. I haven’t made any pension contributions for 3 years and it scares me shitless.

swizzlegiggle If your LA want your DD to attend a special school beyond a certain distance from you (not sure what - it may vary from LA to LA) they should provide transport.

Very sadly my life is much more stable on benefits, I could not hold down a job being a LP and meet the needs of my dc with complex needs. For my own MH I tried volunteering but had to stop as I had to keep cancelling due to appointments and lack of school provision (one of mine only got a permanent school place when in Y7 ). It's really sad as I have postgraduate qualifications (all done at home) but no work experience at all for more than a decade. I'm absolutely dreading the rollover into UC. We are renters and I get discretionary HB as my house has a wet room and if I lose that won't be able to afford it.

I laughed at my latest work focused interview when the lady suggested I work night shifts. She seemed to forget it was illegal to leave children at home on their own

Thank you @somthingnastyintheballpool

Something I try not to think about is; not only how very hard it will be when DS1 reaches 18 and is miraculously cured of autism and can walk straight into a fantastic job immediately dumped off the DLA list and refused PIP. I'm very worried about how it's going to be when me and DP reach 'retirement' and have to manage on his pension. I'm very worried for the future, for DCs, DP and myself.

@swizzlegiggle Your child will be entitled to free school transport so please do investigate.

www.gov.uk/free-school-transport

Meant to add that I know of a few people with dc with complex care needs who work, but they all have very supportive hands on parents who are comfortable with their dc's medical interventions e.g. catheterizing, suctions, trachy care etc.

@swizzlegiggle SENTAS are a very helpful organisation:

sentas.co.uk/

07986768085

I have a colleague with a son who is at the severe end of the ASD spectrum. She works about 3 or 4 days in the office and a half day at home and she is a bit of a wonder woman! She has another NT child too. Her husband has a really demanding job but they are very comfortable financially and do all sorts of (expensive) additional therapies and stuff with their child with ASD so I suppose her working enables that. She sends child to a state special primary school about 20 mins from her house which has wrap around care before and after school which I believe is really rare and very useful but I think its about £12 a day, she drops her child off about 7.30 and picks up at 5.30 and they enjoy it a lot, her other child gets collected by I think a child minder when she is working. I think she spends a fortune in child care costs basically but it works, she is a fab and very organised person.!

There is no childcare for 14 year olds with the understanding of a toddler and volatile distressed behaviours so it is impossible for both of us to work.

"My husband manages just fine....🙄"

Yeah... this. DP, whilst not DC's father, has had a go at me for not applying for said dream job. Saying things like "Well we'd make it work! We'd find a way!".

When I ask what I'd do when he's school refusing / has an appointment / I get called to pick him
up from school his response is "Why do you always think of the worst scenario?!"

Erm, NO. DC has school refused TWICE THIS WEEK. I've taken probably 8 phone calls from school this week. I could not manage those things in a senior level role! DP lives with us, he sees these things, but even he thinks I should manage it? What hope is there for anyone else understanding? Makes me want to cry/bang my head off a brick wall.

That’s very unusual jeanclaude - ds1 had no access to before or after school clubs in his whole school career. Also the School transport times changed each year, so one year he may be picked up at 7.50am and dropped home at 4.10, the next year it might be 8.45am pick up and home at 3.25.

Even if ds could access the before and after school clubs (his state school has them but obviously he wouldn’t have 1-1) he physically couldn’t manage such a long day, he only just manages 9 - 2.45 (he finishes early every day)

I tried. I ended up physically and mentally breaking down.