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.

Bananas I agree, I feel all I ever do is think or talk about SEND and finances.

Bananas I would welcome such a thing. Like many others I expect I feel a bit lost with it all. And DS is one of the milder ones and still at nursery. Still have so much to navigate!

I do think Silver makes good points actually, there are people with very high flying jobs who are able to buy in the help. But SEND children (and the adults they turn into) come in as many varieties as jobs/careers/NT personalities.

There has to be a way of keeping other parts of ourself alive, I hope! @thigh and @tangelas even milder can be tough.

Personally even if I could afford it I wouldn’t want to outsource parenting to the levels Silver is doing so.

There has to be a way to behave some level of work-related fulfilment without having to have a £90k+ career.

Because while that might be the answer for some, it just won’t be for most people.

I work for myself as a consultant but even that is extremely stressful as client needs often clash with my children’s needs. Often at a time when none of the help around me is available. I am always the one who suffers and it isn’t sustainable. Or I’m heading for burnout again...

I am setting up a different kind of business to see if that works better. But this is a mid-long term game.

Would others be interested in any kind of mentoring or peer support via a FB group? I would be happy to set one up and to provide mentoring advice on setting up a business or finding flexible work as a SEN family?

Sirzy I know what you mean and I feel the same but think about this - if all our children were NT we would be outsourcing to some degree. In a twisted way being able to stay home because a child is SEND allows us to not outsource as much as NT parents are forced to. I'm sure I have put it badly and it's an ugly thing to say out loud but I can see it in me.

I would definitely be interested in supporting that OrangeSamphire, thank you.

Personally even if I could afford it I wouldn’t want to outsource parenting to the levels Silver is doing so.
It is also a personal decision. I love my child, but don't enjoy the SEN bit of parenting at all. I am in the "put the oxygen mask on yourself first" mode for a long time now, and I have another child who also deserves me.

And for a lot of people the put your oxygen mask on means realising that trying to juggle everything and working is making you ill and something has to give

Silver it's good to hear that you have been successful in finding a way forward that works for your family.

What if your career is nursing?
Move to the US.

Ridiculously unhelpful advice.

As an American living in the UK, there is no chance I would move to the US with my children with disabilities. The health insurance situation there is precarious at best. Anyone that trots out a blanket statement that those in healthcare/nursing generally have good health insurance are not reliably accurate. Some do, some don't. And I can say from experience that even if you have a job with great health benefits, that can easily change from one year to the next if your employer decides to change their group health policy. I've been involved in committees evaluating and putting forth recommendations on potential group health policies for employees for a larger company as well as a smaller employer, and the change can be dramatic. Add in the GOP's political thirst to savage pre-existing condition protections and you have a recipe for financial disaster. And as your health insurance is tied to your work, if for some reason you lose your job, are let go in cutbacks, you are in a world of financial hurt.

I would never willingly trade the NHS here for the US medical insurance nightmare.

I have 2 children with disabilities. Due to their particular needs, it is impossible for me to find safe reliable child care for them so that I could work, especially as the work I am trained for that would provide a good income involves shift work and antisocial hours. I also home educate (again, due to their particular needs as well as traumatic school experiences), which further complicates things.

So I am a carer for my children full time.

A sen nanny might be fine with a 4 year old but it wouldn't work with a severely disabled 14 year old with challenging behaviour. The cost of anything approaching adequate care for some older children is at least £30 a hour and that's if you can actually find people who will do it.

I left a full time non-career job, although demanding, to concentrate more fully on my SN children. I was spreading myself too thin and we were all suffering as a result.

Spikey that is very true, it has got harder, not easier, people who haven't lived it don't realise that.

'And for a lot of people the put your oxygen mask on means realising that trying to juggle everything and working is making you ill and something has to give'

I agree with this. I would never presume to judge anyone else's decisions about how to manage their individual circumstances. I would not even assume that those whose DC have less profound disabilities than DS's have it easier, as the issues are so complex and everyone has to find their own way through.

Agree with Onewitheight that appropriate schooling was a game changer for us. My son was not coping in mainstream and I was being called to school to collect him every week. He eventually had to do only half days - this was negotiated with the school the day before I was about to start my first job in 7 years. Had to cancel that one.

We now have my son in a school that suits his needs and the change has been phenomenal. They sort any concerns out and involve my son's Therapists in communications so we're all updated.

My DH and I both work full time in senior roles. We have a live in housekeeper who does the groceries, cooks and cleans and does the school runs with our two NT children. She is amazing but she can't handle our SEN child and as consequence my DH and I do a crazy juggle of taking turns working from home/lots of working at night and over the weekends. It's insane but we need to both work to pay for all the therapy, schooling etc. Plus we love our jobs. I feel our NT children miss out on a lot because we so often prioritise the needs of our son. I recognise we are much more fortunate than most and yet we still find it very difficult and it really doesn't always work.

I must stop moaning and playing ninerife. Silver was right, we/I do turn these threads into an echo chamber of despair. I do have some home based PT work, I could certainly fit in more. For instance I have been on here for hours this morning. It's become a mindset that I don't like in myself.

I would never willingly trade the NHS here for the US medical insurance nightmare.
Interesting, because I personally would, I don't go anywhere near the NHS anyway. First paediatric referral took 11 months to process. OK, I should have specified - "move to the US after checking your employer's medical package". I have never heard of a nurse or a doctor being short-changed on the medical cover, but accept it can happen.

You will also find that, surprisingly, there is free federal support in the US for SEN children under the IDEA act, starting from age 0 - early intervention programme.

Yes I agree it has got harder with time. It is also extremely isolating, I get that lack of personal experience would make it hard to understand but some empathy from certain quarters would be nice.

Interesting, because I personally would
And that's your choice.

But I wouldn't. I have had the benefit of "been there, done that" and would never willingly do it again. It's important to note that just because your employer has a good health benefits package, that does not always guarantee you will always have a good health benefits package. Employers change health benefits as/when it suits them. People change jobs or are made redundant. Things happen. Finding yourself without decent coverage means financial ruin.

It's the third decade of caring that is the real pisser anyway

I think it’s possible but certainly not for me. My child has health issues and some delays because of them. To get her home from the hospital we both had to be home. My partner wasn’t working after losing his job so it was easy enough to do. She had 2:1 care and we had a toddler. It’s a few years now since she had been home and her care is slightly easier, some medical things removed. Mentally I am fucked. My partner is also. We both struggle and we don’t even have jobs to go to. Sometimes I’m barely coping and I couldn’t even manage going to college. I don’t think I’m ever going to have a career, especially as I would need to go to college first. My mental health is not getting any better but is easier to cope with now. My partners mental and physical health isn’t great. I feel bad for sponging but I honestly don’t know how I could hold down a job. I’ve never really had a job before and fell pregnant quickly so don’t even have anything for a cv.

It's impossible. Mum to to 2 boys with SEN ...one severe and one high functioning. Neither sleeps. DS9 with severe difficulties usually sleep 4hours with 2 meds. Sometimes I can't string a sentence .
No one would ever employ me. He had 44% attendance vat school lat year !!!