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

Another thing you should know is that some charities run special holiday schemes and carer breaks. Facebook should have local groups - I don’t know if there are any local pages where you can ask which groups work in your area.

Are there any charities or support groups for his condition? I find the one my dc is a member of invaluable. They have a facebook group and you know if you ask someone will have been there done that.

You can get mobility from three,at high rate ,if the Op,s child is not walking a three then I think they would be entitled,it's the low rate that's you can't receive before five.

It is very difficult to maintain work with a dc with substantial needs. I worked full time for a couple of years, it was easier when dc was in nursery untill they told me he was too disabled for them to cope with. He's now at specialist school and I am now part time 3 days per week and to be honest even that is a struggle.

I hope that is the case for OP but I did specify my opinion was due to my own experience, we didn't get high rate mobility until DC was 6 unfortunately.

If you want to/have to it's certainly worth a try. Most employers will have a policy about time off for appts but i believe if you claim dla for your child you can take the unpaid parental leave every parent is entitled too in one day slots rather than being forced to have a week at a time.

When my DD needed regular physio appts for some time, I discussed times with the booking teams and I was very surprised that they confirmed they would do everything to give late afternoon appts and they did.

When it comes to appts in the community, teams can be more flexible than hospitals but people rarely ask assuming they they just have to show when told. They can't accommodate everyone but will do their best. They understand the issues faced with full time working parents. They often are themselves.

I have 2 disabled DC and currently work ft. Your employer needs to be really flexible or it doesn't work. In my experience it is easier before they get to school (when the wraparound care options vanish for disabled children).

Might as well give it a go?

We are in a similar situation and have managed with one of us working part time and one full time. I possibly could have worked full time before he reached secondary school age. We have a nanny/housekeeper who does school run, cooks dinners and cleans house and tidies a bit.

The issue is school holidays. There is no private specialist childcare and the council ones are only accessible via waiting list and only 5 hours a day and you are lucky to get one day a week in school holidays.

We managed with a mainstream holiday club while he was little but they don't exist for secondary aged kids.

You can take unpaid leave for childcare reasons so you might be able to use that for some school holidays but it won't cover all of them.

I think it does depend on the challenges your child has. My son is absolutely unregulated loads of the time, nursery school is such a hard environment for him he can't stand it, so easing up to full days is a mountain for him. And there is no alternative care for the holidays. I could never have a "normal job"

I agree it really depends too but IF you can get your foot in the door with a good manager it can be possible - it helps if you enjoy what you do for work. If it’s home stress and job stress that’s even harder.

Your DS’ needs sound very similar
to my DD’s. I went back to work 4 days a week when she was 1. I could have gone back full-time at that point but I wanted one day off to take her to a specialist SALT group.

As she’s got bigger, things have become a lot more difficult. School hours are shorter than nursery, and it’s very hard to find wraparound care for a child with needs like hers. Plus, she gets really tired and wouldn’t manage after-school activities.

My DP and I now both work part-time, tag-teaming the school run and childcare. We do the medical appointments on our respective non-working days. It’s really important to both of us to keep working but both being full time just isn’t feasible.

That said, I do know some parents who still work full time, including one couple who are both hospital consultants. But, they have family on hand to help, which makes a huge difference.

My experience was it was easier to work when my son was younger. Appointments were ok as i could take unpaid parental leave as did my partner and nursery was fine at managing him.
As he got older there was no childcare at all and we had more appointments so now work very part time

My son has Down syndrome, I went back to work part time 3 days a week when he was 1yr old. He’s now in reception at mainstream school (with an EHCP and full time 1:1) and I still work 3 days so I can try to arrange his appointments for my days off. He attends after school club a couple of days a week but we can’t access any holiday clubs. DH and I have to tag team school holidays meaning we don’t get much time off together which is completely rubbish!
My employer and more specifically my manager have been fantastic and are really understanding and flexible (I’ve worked at the company for over 10 years though). If I were you I’d definitely try to get back to work if nothing more than to have something for you outside of your children and their needs (working keeps me sane in all honesty!)

Ime,but was easier ti.work when my son was younger and there was child care available ,my son is nearly 13 now and cognitively around 2 or 3 ,we do access a special.needs play scheme one day a week in the school.holidays and he's also going to have every other Saturday ,but this is a respite thing and has to be assessed ,so.we get told when he's going
obviously I can only go.off my own experience ,but my son had always gone to a special school ,so there has to.be some one home to.put him.on transport and take him off every day

@lbb Why can’t you access any holiday clubs? Is your son getting Short Breaks? Your LA should have a list of accredited providers - either SEND holiday clubs or organisations that provide a support worker at a mainstream club.

Sorry, that was to @LBB2020 .

Short breaks are dependent on what the LA,can offer obviously I have no idea what is available in @LBB2020 ,area but in my experience we had to be assessed for them and they are dependent on Need

@x2boys I guess it must vary from LA to LA, but it was pretty straightforward in my area, and all the kids with DS get them.

I had to give up work completely once my DD started school. The only holiday clubs available were SEN activities which only ran for 4 weeks of the Summer holidays from 10-4 with a max of 2 days a week allocated for each child. It was 15 miles in the opposite direction from where I worked too. Annual leave could not cover all the holidays, appointments or illnesses. We had no family nearby who could help.

I met many families of children with SEN - very few of the mothers worked. And those who did had family support.

@SomethingNastyInTheBallPool No he doesn’t get short breaks, it’s not something we’ve looked at just yet. As for SEND holiday clubs, there are none local to us and also they don’t run for the full working day

That’s the same round here, @LBB2020 - the holiday club with the longest hours only runs from 10 to 4.
But it’s definitely worth looking into Short Breaks - even if there isn’t a suitable SEND club nearby, you could use it to fund someone to support your son in a mainstream club.

Yes, and even if provision is available and covers enough hours, your child may not cope - do you have any work options that include contract, ‘temp’ hours as needed etc? It’s not ideal but I do that so that i can get more time off.

While they are little and a mainstream childcare setting can cope it is relatively easy with a flexible boss, however my girl now 7 also rare chromo 15q 11.2 plus complexneeds, feeding tube and asd. There is zero wraparound care at the special school she goes too and she is way to complex for standard childcare our only option would be a special needs nanny which is unaffordable I'm dying to go back to work I had to give up due to the pandemic (she's clinically vulnerable) now I can't earn enough to go back to work, can't retrain as they would take the carers allowance and universal credit away even though I'd still meet the care hours required so I'm stuck and screwed by the system. In regards to appointments it all depends on your child's needs and referrals your at the beginning of a very long road I'm afraid we have 9 specialists across 3 hospitals two of them 2 hours travel time away, if your child doesn't cope well in the clinical environment you will need both parents to attend appointments

Instead of starting a new thread I'll ask here and it's relevant - I spoke to a recruitment agent after making this thread and explained the situation and she said she had the perfect job in mind - small office, nice family business and the job itself is fairly straight forward.

She said the business is open to 25-30 hours and I can discuss what hours I think would suit me best so that's great.

If I'm successful what is best? I was thinking if it's 25 hours either 9-2 or 9.30-2.30 or if it's 30 hours then 9-3 so I can try and schedule appointments after the work day or I could work 3 or 4 long days and have 1 or 2 days off but I'm thinking short days are more manageable with disabled 2 year old and 6 month old but I can't decide so would like some opinions please