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.

The £30 a hour I mentioned would also only be for the child's care. Any meals for the child would have to be cooked by someone else. Any cleaning up would have to be done by someone else. They wouldn't be able to take the child to any appointments or have any conversations with the school. They also wouldn't be writing the child's ehcp or chasing provision for the child.

I can't see how it would be possible without a lot of family support. My DH and I have 2 adopted DDs aged 9 and 6, DD1 has Attachment Disorder and we've always thought she's also very likely on the autistic spectrum. She has violent meltdowns, which are exhausting to handle, and although she behaves okay at school (unlike a lot of other SEN children), emotionally she really struggles and it means that she's a nightmare to get to school in the morning and she holds in her feelings all day at school and is ready to explode afterwards and at weekends.

She's due to start therapy to help her (and us) deal with her needs. This will require both DH and me to be there; I don't see how that could be done with full-time careers. She also has hearing aids and glasses following a head injury as a baby, and has always had regular hospital appointments. This requires both of us, as it's impossible to have every appointment scheduled during school hours, so one of us needs to be at home with DD2.

So, as I said, it would be possible to have 2 full-time careers if we had family support, but we don't. My DM is around but she's 79 now and often away (charity project in Africa), and also, we're very low contact with her.

I have a friend who works full time (as does her DH) in a fairly demanding career. They manage because she works shifts so can arrange her shift pattern to minimise childcare needs and go to appointments etc. They did go through a really difficult patch when her DS kept being excluded and she thought she might have to give up her job, but he's now at secondary (in a specialist autism unit attached to a mainstream school) and doing much better.

She is always very busy / tired / stressed though.

I work PT in civil service job. Less pay and hours and crucially pension than I had before but it just about works. I can work at home and flexi time. But it pushes me to limit and v tired and never have any flexi hours in hand anymore. School holidays are tough and I'm going to take unpaid leave this year as August nearly killed me. It's hard when you start as a lot of training etc but once you know the job it's better. I can't move jobs or apply promotion as mostly want people to do full time or at least full time for 6 months etc. I stay in work mainly so I have a small pension

I (and DH) work full time with two DCs with SEN. Crucially, I work from home permanently and am able to do school pick ups within this. However, I also work 50 hours a week. So it is possible but I always feel as if I'm on the verge of falling asleep and people always comment that I never stop yawning. Fortunately for them, I manage to refrain from punching them in the face.

I work 16 hours a week, and term time we can just about do it... holidays are the issue as no afterschool clubs or breakfast clubs. There are zero Sen holiday clubs here. My place of work does not allow flexi time or home working for the women and they constantly pressure me to up my hours, when they know our situation. It’s disappointing :(

Oopsusername it sounds as though your workplace are on potentially dodgy ground in not allowing flexitime (assuming you are in the UK). You have a right to request flexible working and they can refuse it only due to specified operational reasons which you have a right to challenge. And 'we have never allowed it before' is not one of those reasons.

I didn't work until ds was 10 1/2 because I didn't think I'd manage the juggle. Used to be a high-flyer / very successful pre-dc.
Dipped my toe back into work with an ad-hoc / few hours here and there job for 6 weeks and loved it. It really taught me what I was missing out on even though it was a really basic job. Then got a part-time job on the back of that (again a basic job, but a little bit more to it than the previous one) as the first job had made me realise how much I needed a separate life. Spent two years struggling massively with the lack of sleep and sheer effort that went into making it work. Not to mention all the time off for appointments, meetings, illness etc. Work were always really understanding, but it was far from professional.
Ds has now got a residential place. The relief is enormous. And I've started retraining for something more challenging next year...

It hasn't been impossible (DD2 has PWS - now 15) but it has been and continues to be difficult. I have a career as a lecturer and over the years have made adjustments to my job to allow me to continue. We have no family support so it is tiring. Sometimes I feel really stressed and tired and think that I cannot go on but pull myself together as the financial benefits are too great to give up. It impacts on me rather than the children - only 5 years to go and I will retire.

I manage to refrain from punching them in the face

Excellent, you have achieved perfect equilibrium, I salute you.

DH and I both work full time, our oldest has autism and is in mainstream with a EHCP. We are both shift workers and have cast iron 110% family support otherwise we’d be FUBAR’d.

It is horrendously difficult but doable if DC are in school most of the time and you have out of school support.

DS1's ss placement failed at 14, he is now nearly 18 and it has been a long, hard struggle emotionally and financially. I can't be in two places at once. I had to give up my previous life (PhD, junior academic) to become his full time carer. It is crap all round and I worry for the future. It's not even really about money - there is no one I could pay to do this role.

On the plus side, DH still works f/t. Plus I have to be at home anyway and so DS2 (also autistic) can do internet school.

On a daily basis (when things are good) I juggle visits to the home and outside the home for 5 different tutors/support workers for DS1 and 6 hours a day unpaid LSA for DS2. When things are bad they are very bad - suicidal DS, Tribunal, JR etc. There is no time or space for me. I try to stay positive - make time to meditate every day, exercise, enjoy nature - but what I really need to feel positive or hopeful about the future is absent from my life and really I feel despair. I can't control things, it doesn't matter how successful I am and there is no end in sight.

And for this I get carers allowance of around £250 per month. Woopy doo.

@orangesamphire yes I Wouk did be interested in some kind of social media type support/co mentoring. Good idea.

Would not wouk even if just to afford a new keyboard for this darn iPad... !

@OrangeSamphire @Bananasinpyjamas11 another yes for the internet group please, great idea.

Yes please to a Facebook support & info group i think that's a great idea

I’d like to be part of a Facebook group too 🙂

I'd be interested in a fb group too.

Well it’s taken me a while but I have finally got around to setting up a Facebook group. It’s really just a holding page at the moment, but I’d love to get this up and running and growing as a resource.

For those who were interested, it’s called ‘Wellbeing and Work for Parent Carers’.

If you search for it and request to join, I will welcome you in with open arms

Yeay, well done.

Fab, thank you @OrangeSamphire. I've just sent my join request. See you all on the other side!

See you there!