To think about working full time with disabled child?

[TheJudgeandJury]

Hi all,

As the title suggests I'm thinking of returning to work.

I've been off a year on maternity but left my previous job due to issues with my pregnancy (my choice).

My son has a rare chromosome disability that causes developmental delay, learning disabilities and he's autistic.

He's had referrals for physiotherapy, speech and language and occupational therapy and we see the paediatrician every six months.

I don't know when these appointments will fall and I'll spilt some of them with his dad (as much as we can) but were obviously not flushed with money as my husband is a student nurse and I'm a student in my last year so I did sort it want to return to work but unsure how I'll go on and how it works with appointments?

Thanks

I do 3 longer days as I like having 2 full days off to spend with my toddler (important to me to ensure he gets quality time focused on him).
Although I think 9:30-2:30 would be ideal when your child is school age as you will be there for drop off and pick up.
Pros and cons to both options! Good luck with the interview @TheJudgeandJury x

Childcare will be expensive if you do short days rather than squishing the hours into a few full days as you will have to pay for full days at nursery.

Also what will you do for school holidays once your eldest is at school?

We're lucky and as DH is a student nurse our childcare isn't too expensive luckily but they'd still go for the full day.

That's something I'd have to consider in a few years time. It may be DH or I works term time or once DH is qualified in what he wants to do I may not have to work but I'm looking at it for the moment.

It sounds like a great opportunity and they will be flexible. All you can do is try. And just cross each bridge as you come to it.

Does your disabled child deal well with nursery?

He does really well in the childminders he's in at the moment, she only has three children and just lets DS get on with it.

We are looking at a SEN nursery for when he's 3 so I don't know how he'll react to that but I can only try. He's quite good in the sense he doesn't like to play with other children but doesn't mind if they're around as long as they don't go into his bubble but he's only 2 so he's still learning as our we really.

I think you can only make decisions on work.based on your situation now ,unfortunately there will be some unknowns about how your child's chromosome disorder is going to.affect ,him ,things will become more apparent as he develop,s.

As a mum with a disabled child I'd say no. The stress is enormous and part time gives you an income and plenty of time for appointments etc. I have my own car so a non driver would find it tough going.

I agree - I'm interviewing for a part time position that's 20 minutes away but I do drive so shouldn't be totally impossible.

It's great you have SEN nurseries near by! My son finds nursery a real struggle, it's taken 6 months to get him to go for 3 hours but every child is different. Unfortunately it's just so hard to predict.

I went back to work when Ds was little worked until he was 6 and realised I was making myself poorly trying to juggle everything and persoanlly i wasn’t able to give my best to anything because I was just trying to keep the plates spinning.

he is 13 now and I have since Christmas started working 6 hours a week as a dinner lady. So far that is working out brilliantly and actually working as my escape but realistically I know for the time being that will be as much as I can do (and some volunteering in the school when it fits)

If it were me, and assuming the office is close to nursery
and the school you hope he’ll go to, I’d go for 9.30-2.30. In theory, you should be able to do both ends of the school run, with some margin of error for things going wrong in the morning.

Honestly- it’s going to be very difficult. I have a dd with severe complex needs, and I gave up work to look after her. It’s only in the last 18months that I returned to work, she’s 13 now, and I only do between 10 and 16 hours term time. I would say think carefully, but don’t be too fixed in your ideas and if you have support use it. Best wishes x

I’d go for at least one day off in the working week because I think you’ll get burned out otherwise but that’s speaking for me - I can see 9-3 is ideal for the children.

For me the biggest issue - even more so than the hospital admissions strangely - was juggling the appointments without feeling like you were always letting someone down. It’s hard for people without children with complex needs to understand that yes some weeks you may have three appointments at three different hospitals and no you can’t pick and choose the times of them!

It depends on how extensively your child’s health is affected, and how flexible your working hours could be. My husband and I tried him working FT and me PT in the NHS. My daughter is far too sick and she’s open to so many teams that unfortunately it just wasn’t possible for me to be working even 3 full days. But we need the money so I quit the NHS and I’m now working fewer hours in the private sector where I get more choice over my working pattern.

I haven’t read everything but for a lot of us by far the easiest time to work is whilst they’re in education as they’re not with you for a decent proportion of the year

once that finishes if they’re not capable of work and have nothing to do for most of the week then it’s hard

so I’m saying both of you aren’t working full time unless some else will do the appointments but absolutely try and both work in some way while you can