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

What childcare do you have?

He attends a childminder and we are looking at a SEN nursery from his 3rd birthday in January.

Only my MIL drives in our family (apart from us) so may be able to help with Monday appointments.

A lot depends on your employer. Mine are really good though. I’m a single parent with two teenage DCs, one with ADHD and MH difficulties and the other with autism. If I need to take them for an appointment I’m always allowed, and I get five days paid carers leave a year, so if there is a problem or I have a bad night with them I can use that.

I do try and schedule appointments for the start or end of the day where possible, and I will stay late to finish a job on occasions, so it’s swings and roundabouts, but a good employer who values your skills should be accommodating.

I unfortunately think it will be incredibly difficult. Especially once they start school.

A full school day can be very difficult for a child with additional needs and having before and after school care almost impossible. It may also not work with special school transport etc...

I dont know anyone whose managed 2 fulltime parents. You'd need a nanny I think.

That's not to say dont try and see how long you cna manage it...

How old is your son?
My son is nearly 13 and he alsoi.has a rare chromosome disorder ,
Like everything else how it affects a person can vary massively ,my son is severely autistic and has severe learning disabilities,however not everyone with the same or similar disorders are as impacted some are only affected mildly
It really depends on your child and what support you have in place as to.wether you can work.full.time

He's 2 so we're not entirely sure how it's going to affect him. He can't walk or talk at the moment and is on the ASD pathway.

Like you say I don't know how it'll affect him in future.

It’s difficult unless you have a flexible job eg my employer is brilliant and as long as the hours get done they don’t mind if I do them at 9pm but it’s a desk admin based job so I dont generally have to be avail to others at set times. But it’s also easier before they go to school as holiday childcare is often impossible to find. There is no appreciation by services that you work -10 years ago they operated on the basis families with disabled kids were in social housing, on benefits and at least one parent wouldn’t work. And nothing has changed despite there being no social housing these days and most families having two working parents. I would suggest you go back fulltime while you have childcare but expect to have to reduce once at school. In my experience it’s much easier to start full time, earn trust and then get more flexible hours once you are a known quantity.

My son sounds like yours and I managed to work full time until he was 12 by splitting hospital appointments with his dad and using annual leave for others,but this meant we never really had family time together and it was a huge strain on our relationship as a couple as we hardly saw each other (opposite shifts as childcare wasn't available to meet sons needs).
I'm now a stay at home parent who is skint but we have a much better family life than before x

This is kinda where I am at the moment like in my head.

We're a bit skint at the moment but I wanna be able to provide and do nice things for both my children however I want to spend time as a family and not jeopardise my relationship.

It's hard, wish those lottery numbers would come through haha!

I would go back to work now and try to research childminders specialised in SEN for holidays and wrap around care.
I would also strongly consider finding a term time job or your partner because it is incredibly difficult and near on impossible to find childcare past 5/6 for SEN children.

Have you applied,for DLA?

I have two kids with asd and adhd. Youngest is profoundly disabled. Working when they were toddlers was impossible as they couldn’t cope for more than a few hours in nursery and sometimes I’d get calls to pick them up. Similarly with school though it was better when the youngest went to a specialist school. I do work but I’m very limited in job options as I have to work term time only and work from home. I’m in my second admin job and occasionally go into the office but my husband works from home that day. I do four days. It’s very tiring as I do most of the stuff with the kids. I found it was harder to work when they were little. I expect in a few years I could end up reverting to being their carer again as only one is likely to be able to work and will need a lot of support. Youngest will never work or live independently.

It's possible but you need the right kind of job and a sympathetic employer, which is not an easy combination to find. I don't have a disabled child but I need a lot of flexibility for other caring-related reasons. I have a project-based job that is not customer facing and is hybrid-working, so as long as I work the hours and make it into the office some days, it doesn't matter how or when. If I have to take time during the day I will make it up in the evening. I'm mindful of the potential for resentment and I am careful to stay very much on top of my work so I'm not open to challenge.

I think Local Authorities and charities can be good employers in these types of circumstances, that's where I've managed best, although it very much depends on the team culture and individual manager too.

I’ve found it virtually impossible to find childcare. I would say it’s possible to work but you might be limited on what job you can take.

Have you applied for carers and DLA?

@x2boys

Yeah, I applied back in Feb and I'm waiting on a decision but it seems a bit of a process.

I've spoken to people on fb group and with similar children and needs it can range from not being awarded to getting the highest care so I'm not sure what to expect which is why I'm thinking about a job as thats guaranteed income.

My son has significant needs he is autistic, there's no way I could work full time sadly. He can't handle full time childcare settings he finds them very stressful. He gets ill a lot and finds it hard to process being unwell so that's a lot of days off. Plus there isn't any childcare during holidays, he can't do to a club with unknown teachers.

Im not saying there are none, but in my friendship group (it's a group for parents of children with additional needs) I don't know any parents who have children with high needs who work full time both of them. It's really challenging

Yes it can be a wait ,but I would take what those people on those face book groups say with a pinch of salt ,some seen to.apply for very tenuous reasons ,I would think frio..What you have written your son would probably get an award but for what level or length of time im.not sure .

Public sector like a council is probably a better bet. You need flexibility and ability to buy extra annual leave.
Your easiest time to work is probably now if you have a full time child minder.
Once in school days are short and you may not be able to access wrap around or holiday care.
Or look at working opposite shifts or weeks if DH works in week etc.

I would honestly look with a long term plan in mind - something with flexible working or you can drop to part time hours or term time only.

It is ever so hard.

I worked pt to enable me to juggle appointments. You still need flexibility but I found it easier as I could make up time on a none working day. Good luck.

I've explained to DLA he can't walk and needs special aids like a stand and a specialist buggy due to his size and he isn't expected to walk until he's 5 and still may need a wheelchair.

I've also explained he stuffs his mouth until he is sick or chokes and we need to sit with him to stop this obviously, I've also said his bowels are bad (part of his condition) so one extreme to another we're either constantly changing him or he's up all night in pain. I've explained he's a bad sleeper normally getting up at 2/3am and staying awake until 7-10am and nothing settles him and we've discussed melatonin with the GP but nothing has been put into place yet as I am reluctant.

I've explained that even though two-year-olds don't understand the danger, he needs more supervision as he doesn't understand words (he's delayed) so won't respond to his name, no or don't touch so need to keep him safe.

I've also said we have to remove him from most social situations as he becomes extremely distressed and either becomes violent (hurting himself and others) or withdrawn. I've explained he can't change his own clothes, or put his shoes to coat on and said children a similar age at his childminders can. I've also mentioned it's like dressing a newborn because he doesn't help and we think it's because he doesn't know what clothes are or why we wear them. I've also stated he's non verbal.

I've explained how his needs and care are more than you would expect for a two-year-old and how he needs care both day and night etc

And actually after reading that back ... I think I am being pretty unreasonable. It just feels a bit frustrating because I really do want to work and contribute to the household and society really but unless like PPs have suggested unless it's a very understanding and flexible job or his care needs become less it's going to be impossible.

Also you may need to research special school placements early. It's a real minefield with less places than children who need them.

And then look at transport.

Andits near impossible to find childcare before or afterschool as well as many autistic children struggling with transitions and really not managing...

Judging by that small amount of info I would safely say you will be awarded at least mid rate daily care rate but not be surprised at high rate and no mobility, mobility is really difficult to get before 5 in my experience.
Make sure you keep applying each year for mobility though.

Thank you, yes I'm learning that with disabled children especially everything needs to be done yesterday essentially so I've emailed a few schools in the area.

We're viewing a SEN nursery and then hopefully will get more guidance for when he's ready for school. It is really a minefield sometimes.

But you are contributing to society by supporting your son too. I have done stints of not working, part time and full time for stretches - I’ve got a very flexible employer and dc with lower needs than yours.

I would hope your DLA case is not complex and will get approved - I might be tempted to try to find something as you might get lucky with an employer I agree it was somewhat easier when they were small - now they’re older so many things wouldn’t work for them.