To think I just can’t work right now? Special needs

[ShannonKnocks9]

DS has been deemed suitable for a special needs school. His needs are now quite complex and he’d be better there (it took time to come to terms with that).

Anyway, the special school he’s been offered a place at only offer his age group the hours of 9am to 12.15pm, 5 days a week. Term to only of course as it’s a proper school setting of sorts, not like his private nursery.

I’m currently on maternity leave but my job is part time, 3 days a week from 9am to 3pm. I can’t work from home with this (it’s Hospital based admin type role).

The following September (2022), DS would be going normal school hours, something like 9am to 3pm.

My issues are as follows -

My current job won’t change hours wise, it can’t. And I’m hard pressed to reliably find a job with the hours to work around his special school.

The nursery is the only real special needs school for a big stretch. We’ve recently moved after separating from H to a lovely little area. But even so, the local special school is over 40 minutes drive away, the same one he would’ve gone to at the old house. So even if I could get a job with very small hours, I’d not qualify for any working tax’s credit if under 16 hours. And I have to actually drive home after dropping him off.

H won’t help. I won’t go into this too much but he just won’t. So no help there. Weekends nobody will have him, and I live miles away from my own family. Not an option to move closer, and their local special needs support isn’t very good.

Am I just going to have to pack my job in and look for something term time only once DS is in school properly, 9-3? 😔

Unfortunately childminders are in short supply here too and none I’ve contacted have been interested in looking after a disabled child. Completely understandable but still makes things even more difficult

What would you do? If I give up my job I’ll lose my working tax credits (we are still on that and not UC).

And brace yourself because holiday provision for sen is really really really limited and getting a social care package is a horrendous battle. All the things that should be possible are a nightmare to access in reality.

If the nursery is the only nursery in the area suitable for his needs, then you should be offered transport. It's not your fault he's 'out of catchment' for want of a better term.

I think you need to speak to an advocate who knows your council and who knows the benefit system to make sure you're getting everything you're entitled to. In my area, that would mean a Social Work assessment, which scares many people, but it's really a great service to see what support you need.

Ultimately though, it may mean giving up work for a while. This is why so many families with disabled children end up in poverty, unfortunately.

However, if you're NHS you can look at things like sabbaticals I believe, which while not paid, means you may have an easier transition back into work when DC goes to school.

You have all my sympathies - I know from experience how hard this is. I freelance so I can be at home.

[quote MyDcAreMarvel]@ShannonKnocks9 if you claim pip it’s not the pip itself that stopped your transitioning. You must have a severe disability premium within another benefit such as income support or housing benefit.
If a claimant claims wtc and ctc and pip but no other benefits then in your situation they would still be moved to UC. That is because claiming UC doesn’t affect pip but it does stop severe disability premium . However to get the severe disability premium you have to be the only adult in a household who is disabled.[/quote]
I receive sdp as the only adult in the household (I am myself disabled and also receive income support). But I've been told that SDP stopped being a protective 'legacy benefit' in January so changes to circumstances since then will still tip people onto UC?
I'd be happy to find out that was incorrect though!

And I'd like to echo everything that @doubleshotespresso has said.

I have two kids with ASD (now early teens). I've had no support from (now ex) H ever and I was not able to continue to work when they were little for all the reasons OP lists. Later on, all the things @doubleshotespresso said came into play too. It's not an easy path. x

I was never able to work when my DS was school-aged due to his disabilities. It was just impossible due to lack of childcare during school holidays, taking him out of school for appointments and needing time to focus on organising support/advocate for him. In my case I also have the same disability so we managed fine on benefits (DLA/PIP for both of us, and CA for me, plus I was single so I got income support and tax credits). We are managing fine as it added up to a decent amount but I spent a lot of time getting all the benefits in place.

I would have struggled to work even school hours with DS, because it was my only child-free time so I had to use it for self-care, accessing support and to deal with any errands and appointments for myself. In a way I found it better to be in that position though than the other mums of children at his SN school who were continuing to work, but ended up with no time to themselves as they were either just working or being a carer.

@52andblue I receive sdp as the only adult in the household (I am myself disabled and also receive income support). But I've been told that SDP stopped being a protective 'legacy benefit' in January so changes to circumstances since then will still tip people onto UC?
Yes it does, sorry I wasn’t clear I meant for the op specifically as the change had already happened.

@ShannonKnocks9

crochet and Where, so many people say similar or the same on any groups on FB I’m on to do with additional needs children it’s so tough.

I think perhaps I’m finding it particularly hard because I had a nice little job going with progression before DS was apparent with his disability and diagnosed. Left to the job I’m in now, but still a job. But that isn’t sustainable anymore either.

I think it’s all just a bit much sometimes. I didn’t envision having a disabled child. I know it’s selfish but I’m only 22 I wanted different.

I’ll get over it, I know

I didnt want it too and i totally get the feeling here. Its so tough , i would actually love to have a job i find having only my daughters condition and also have a 2 year old little girl too, just so time consuming i would love to think of other things. Even for just one day a week

@ShannonKnocks9

TheABC he’s only 3.5 so no full time school until next September

If u apply for dla u can also apply for 30 hours for 2/3 year old who has sen , there are other conditions so maybe get other benifits and u can apply

I’d try and keep working
As I think you need it for your own sanity and to get a different space
In the longer run you could mice to another office and admin role maybe with home working
Also you might well meet parents who can handle an hour or so cash for babysitting
Many parents do this
I’m not in any way minimising this and how hard it is
But don’t give up on either flexible working or finding some childcare

And it’s really hard

@52andblue

And I'd like to echo everything that *@doubleshotespresso* has said.

I have two kids with ASD (now early teens). I've had no support from (now ex) H ever and I was not able to continue to work when they were little for all the reasons OP lists. Later on, all the things @doubleshotespresso said came into play too. It's not an easy path. x

Sorry to read your post. It's so so hard, I tried everything possible to keep working but it's just not possible to obtain consistent, reliable and affordable childcare that can actually provide the level of care even for short periods. The challenges just increase as school develops, you literally have to be ready to battle daily and jump into action for the chaos and the typical crises that occur with little warning. Also mainstream Provision can work when the team want it to- but it'll be your job to ensure they do and that they deliver the specifics of the EHCP.

Oh OP, that's rubbish and incredibly tough. I'm so sorry.
And as usual, it's the woman who has to pick up the slack 🙄
Best of luck x

Thank you for the responses! It’s so helpful.

Looks like I might be giving up work for the foreseeable, at least until DS starts full time school in September 2022. There’s really not much I can do, realistically.

Someone above mentioned that children with SEN can in fact go to mainstream, but I just don’t see how that’s possible in lots of cases?

For example, DS doesn’t understand ‘Where’s your nose?’ Or ‘Pass the cup’. Can’t get his coat on request etc. Can’t yet be toilet trained as he is very much in his own world entirely. There is no understanding - I can’t see how a mainstream could really deal with this? Can he really go to school not being toilet trained, will other children not comment and be uncomfortable? Which in turn may eventually upset DS as his understanding improved a bit throughout the years?

Our local area has this very odd set up where a child starts school at age 4 and leaves ‘lower school’ in year 4! They then go to an entirely different school until year 8, after which they go to the ‘final’ upper school

OP it was myself commenting re mainstream education.
I've got some pretty comprehensive answers but if you don't mind private messaging (some of it quote outing?!)
Happy to help with a lot of info /advice we were lucky enough to gain which really helped.

doubles Messaging now, hope you don’t mind

Have you looked at respite care?

Talk to your local authority, they have responsibility for ensuring there's childcare settings for additional needs, whilst they won't offer if you ask direct they should be able to point you in the correct direction. The job centre is also really good for this sort of information, stress it's to keep you in work

If you work for the nhs you should be able to take a career break of up to 4 years. I would do that if you can rather than giving up your job as 9-3 hours are quite good and can be hard to come by.

Can you move nearer the school? That might make things a bit easier.

@ShannonKnocks9 You really should speak to your manager about flexible working (the NHS have a specific policy to support staff), see if they can reduce your hours or support you WFH

The NHS are really good at supporting their workforce (even more so now due to the pandemic) so don't write your job off before you have a discussion with your manager

Speak to CAB they will give you impartial advice that is best for your individual circumstances. I do think you should apply for child DLA if you haven’t already but speak to CAB as they can assist you.

PLEASE don’t give up your job without at least trying to get a career break or change in hours agreed until he starts school. If you still find it doesn’t work, then walk away but you don’t lose anything by trying.

@PlanxyDavis

doubles Messaging now, hope you don’t mind

I offered the OP? Merely as there are details specific to my child I'd prefer not to share on here . If the OP messages, I'll happily share. What's your issue?

@PlanxyDavis I have sent you some messages, please get in touch with any queries, I hope it all makes sense. x

*I am a bit confused as I think you perhaps changed Username? If so please disregard my message above!