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.

Sadly for me it was completely impossible. Genuinely no idea how you would do it successfully if the SEN is quite full on. Not meaning to be negative at all and no regrets but it became my full time job and there was no other choice.

Yes it is impossible.

I know a couple who manage it, but they have loads of family help from relatives who live in the same town. I can’t see how they’d manage it otherwise.

I ended up running my own business in the end. And I do various bits of work.

But it is not the career I could have had given my qualifications (Oxford degree, PhD).

Totally agree. I work 11 hours a week term time in a low paid job and that is struggle enough. No way could I hold down more.

Very hard. My son has autism. Can you join the civil service and go 90% so that you can schedule all appointments for a Monday (if they even allow that). I still find it hard. My son is 12 and I use up all my holidays meeting with various professionals.

ps, and I have only worked since he was 7. I have a permanent terror of needing to be in two places at once.

I don’t think it’s impossible, but think only one of the parents can do it. Up to them to decide which.

Yep, I couldn't even hold down a part time job.. I had to give it up because being his primary carer, he couldn't cope with being left with ExH when I was at work.

My employer kept trying to change my hours so I couldn't get home in time to put DS to bed, and Ex couldn't do bedtime with him so it meant I was coming home to DS in full meltdown, Ex having no idea how to deal with him and DD unable to sleep.

I had ALL the issues you've mentioned, school refusal, meltdowns, phonecalls, days off (mental health days when he was too volatile to take in) no sleep...etc

I ended up quitting and claiming Carers Allowance as he became my job.

I have no idea how anyone manages to do this and work full time and to those of you who do, I take my hat off to you.

It’s impossible for me, however SIL manages it. In my experience, something has to give.

I think you're doing well to have a JOB in our situation tbh.

I have certainly found it impossible.

I'm about to start a role in the Civil Service and I'm quite nervous about it. I have two boys, eldest is 4 and has severe ASD. The youngest is 2 and although not as severe, is also very challenging.

My husband is going to be their main carer, he's got a small income from working at home. But the finances are ridiculous. As a carer he can claim carer's allowance, which is £64 a week. On top of that, he's allowed to earn £120 a week. The government are basically saying that if you're a carer, all you're entitled to is £9568 a year. It infuriates me so much.

I'm hoping my role is flexi time so I can make appointments and meetings, as my husband doesn't drive. I'm hoping this is going to be my career and job for life, but I'm so worried about it. I just never know when the other shoe will drop, plus care in the holidays is absolutely impossible and it's such a challenge having the two boys alone (we have no outside help)

I’ve got two children with autism (and one who doesn’t). I work from home 15-20 hours a week as an event organiser. I have meetings outside of the house and I do an event once a month but it is very very hard. I’ve only been doing it a year but I feel exhausted and that something will slip through the cracks. My dh sadly doesn’t see how stressful it all is as I handle all the stuff. But no I don’t think you can have a career unless you have a partner who handles the kids.

I have 3 DC with ASD. With all the admin / appointments I have to sort out and attend for them, I can’t even hold down a job, let alone a career. However, DH works full time.

How timely. Today I had to leave work to pick DS up from school. He'd had another meltdown and another exclusion.

I'd love to work more hours but he couldn't cope with being in childcare that much. Plus I'm sure the childcare couldn't cope with him bring there more either. Plus my boss is pretty understanding but not so sure she would be if I were full time.

It can be done. I have a career and now an adult son with SEN.
It is hard but I am lucky as I have a husband that worked shifts. My parents were also great.

I couldn’t. I tried and it made me ill, something has to give.

Ds having 3 or 4 appointments a week isn’t unusual. Add to that everything else and it just wasn’t feesible, I hate not working but don’t see a way around it

I have a dd with ASD and find it very hard. I work 3 days a week, but even that is struggle. The school refusal mornings are so hard, trying to balance caring for her and worrying about being late for work.

I could have a career if I had a wife. Dh isn't completely useless, but dd often wants me and he doesn't always cope well with her violent meltdowns.

YANBU. I’ve had to turn down two jobs recently because the hours they wanted me to do would have meant my DP having to give up work to do school drop-off and pick-up, holiday childcare, all the appointments. It’s shit.

I'm self employed so I just about manage but I'll be fucked when UC comes in.

It's hairy and I've had to cut down a lot on work but I'm just about still keeping it together. Just. But I'm always one phone call or emergency meeting away from losing yet another client.

Honestly, I have 2 children without SEN and sometimes wander how to manage with the normal childhood illness/appointments with a fairly flexible job.

Parents with children with SEN have so much more to deal with by the time you add in therapy appointments, hospital appointments etc, not even thinking of the exhaustion/extra time/prolonged hospital stays for dealing with their specific needs. Big respect to you ladies and gents, you are doing the toughest job there is. How anyone has a paid work on top of that blows my mind x

I manage it (2 DC, one with reasonably significant SEN) but I have had to be really firm with ExH about taking a fair share of the appointments, school meetings etc.
My parents have also been fantastic with childcare.

It's not so much the multiple appointments - its the fact you can't reschedule them, and then in the case of one clinic mine goes to, the fact you'll arrange leave/childcare for siblings/time out of school, and they'll always always always bloody change the date the day before the actual appointment anyway. I'm just doing zero hours agency stuff and it's about all I'll have a hope of doing because one of us needs the flexibility to be able to do it all.

No, you are definitely NOT being unreasonable.

I used to have my dream job. I’ve not been able to go back.

I am however extremely lucky in that I now work part time in education, and the ONLY reason it is possible for me to work is i have very supportive in laws who have spent years (and I mean years!) working on building a bond with the DC, and can do drop offs and pick ups when I’m needed before 9/after 3.

I don’t earn a lot of money as it’s not many hours, but it is a rewarding role, and I’m grateful for the fact I have it to be honest!

And on a side note, caring for disabled children, or indeed adults, is completely undervalued.