Any sen parents managing to work please tell me how I can keep my job

[Goldenfan]

Hi all,

I have 2 children. 1 is autistic. She is very high functioning but does have her struggles. I am married and my husband is fantastic however my eldest is my child from a previous relationship and despite my husband treating her very much as his own I feel as though I carry the load with her.

I work part time and I have worked extremely hard through her life to do a degree and move up the career ladder quite quickly and I have managed to do this with only working part time too. I have always prioritized her needs. I'm proud that I have been given a job promotion with much better pay and working conditions etc

Anyway the older she gets (she's 8) and the more I learn about her needs the harder it is becoming to do both. I have been solely responsible for getting her up, to childcare and to bed etc and to look after her in between. We have no family help.

Bless her its not her fault but the day is usually started with screaming and doing her routines etc is full on. I have often felt like I have done a full days work before I even start paid work and then I come home to repeat it at bedtime/dinner time. I have had to gently force her to breakfast clubs and holiday clubs etc so I can work as i normally work out of the house in the community.

I now work from home so have been able to keep her home but that has not been without its struggles and I often feel frazzled. Now we are changing how we work, going back to the office and I am taking on additional cases in the community. I know she struggles physically and emotionally in childcare and I feel immense guilt at forcing her and it causes mornings and afterwards to be intense.

I doubt we would get any dla or carers allowance as she is so high functioning.

I can't afford to give up work and honestly I like my job and I like being someone other than mum sometimes.

My husband already sets off early with our youngest and he opens up the place where he works and can't change hours due to this. He has had to start finishing earlier to pick youngest up so I can concentrate on eldest as she often has Meltdowns on the way home so its hard to manage both children sometimes.

So basically I'm stuck needing to be in the office with no childcare for a child who can't cope with wrap around or holiday care and there is no specialist places where we live and practically no services for support.

What do others do. Can anyone advise me. Thanks

Thank you. There is no way we can afford a nanny. Even with dla. So hard. I too use my AL for her needs. I will look into applying for DLA thanks.

Has she got a child disability social worker? If not you'll need to get her one. Then you can ask for a carers needs assessment. Then hopefully you'll be given direct payments which means you get a small childcare budget for her to spend on a PA or nanny.

I found a really lovely childminder for my DS. Is that a possibility? The home setting might be a bit calmer than breakfast/after school club?

Do you think we would get that. She can dress herself and do all her own personal care its the shimming along and having to give 1 instruction at a time and the frequenct meltdowns that's the issue.

My youngest goes to a lovely childminder but again eldest just did not cope there.

I will look into a calmer one that's a possibility thanks

The one we use has 5 children of her own and misdeeds. Others i know all seem full up with lots of children to care for so again busy.

Would we need to pay a nanny for a full day or just before and after school?

Mindees even

I'm a single parent but only managed to work part time due to needs of Dc1. Dc1 struggled with childcare I found a local childminder who didn't have many children and also a holiday club that had staff trained in sn but also had neuro typical dc so all my children could attend. I think this got easier as dc got used to the carers - I once went to pick him up and the childminder was crying because he'd hugged her to say thank you (he never hugs any one) it felt like such a break through because we knew that meant he was settled.
Routine was our biggest breakthrough, very strict routine which he ticked off as he'd done each one (this was especially useful as he got older).
Don't give up on dla we get it and dc is mainstream.
Regards appointments dc also has medical issues and so I negotiated set days with my days off being the days the consultant ran clinics, plus I saved some annual leave.

DLA is awarded (at least that's the rules!) based on care needs, not on the severity of disability. So yes, I'd apply and see what happens.

I have two 'high functioning' autistic kids and the description of your mornings sounds familiar. I'm likely neurodivergent myself, which makes them even more chaotic. I do work but make sure it's with a great degree of flexibility by having limited hours and being self-employed. I'm also honest with my clients about how difficult it can be to fit in work around my children's and my own needs. I make sure to only have clients who understand that there are weeks when I cannot manage full capacity. It's obviously cost me in money and the type of work I can pick up but overall it has paid of for me in the sense that I make enough for us to live off, and my mind stays engaged with other things than caring for the kids and the never-ending process of appointments, EHCPs and school meetings. And now they are almost teenagers I will have the flexibility to manage their fairly inevitable school refusal/getting into trouble at school in the coming years.

Couldn't read and run...although I'm not sure I have the answer you need. You sound amazing, by the way.

We just have one DC, who is autistic. DH and I both work part time, which is how we've managed to meet DC's needs - and it has still been hard at times. They're getting older now (12), and it is much easier, as they're happy to entertain themselves while we work from home.

As PP said, definitely try applying for DLA. High functioning and middle rate here. DH used the Cerebra DLA guide to help, I think, cerebra.org.uk/download/disability-living-allowance-dla-guide/

Also worth checking what your local council offers by way of support - it used to be called respite, but think it's called something else now. Ours will let us reclaim the cost of paying a 1:1 support person to go to activities. We still have to find the person, and pay for the activities, which has never been worth the hassle for us, but could work for you and holiday clubs.

Another thought, might be worth checking whether your employer can offer some flexibility about working from home on a longer term basis. It obviously sounds like that's not possible every day, but it might be a way to cover some of the time your DD needs.

Best of luck.

I really feel for you.

Similar boat when my daughter was the same age.

Do apply for DLA. If you use this as a guide it helps very much for autistic children. It's written for PIP but transferable questions.

It helps you frame the questions for autism as the form is not designed for this.

http://www.awp.nhs.uk/media/825665/wsocial-carebenefitss_guide-to-pip-15-october-2019.pdf

Is one end of the day harder? Perhaps a PA/nanny to help in the morning at home and then a different cheaper childcare after school like a childminder.
I know this doesnt help with workload or finances but you can take unpaid parental leave in single day blocks rather than week long blocks if your child is disabled

Reading with interest.....

I've slid down the career ladder, though fortunate to work around school hours and at home and flexible for our many hospital appts. I can't think about as it's too depressing and remind myself my child benefits from this. I know it's selfish of me wanting my career.

The cerebra guide linked to above is excellent- good examples of how to explain the additional care your daughter needs.

Goldenfan definitely apply for DLA. My 9-yr-old has just been granted lower-level DLA, and he sounds similar - attends a mainstream school, with no support (which is not to say he doesn't need it...), we are often late because he is quite demand-avoidant and can't cope with having to go out the house for a certain time. I work part-time term-time because he couldn't cope with after-school care (I work in a school and I am incredibly lucky that the head is very understanding of my situation and never makes a big deal about me being late).
I would think you should be eligible, you spend more time caring for your DD because of her autism than a typical child of the same age. DLA might help pay for specialist childminder provision.

The only way we manage it is with both of us having employers who allow flexibility in how we manage our days. We couldn't do it without that.

It is worth applying for DLA and then carers allowance. The care part is very detailed and asks about behaviour, stuff they can't do for themselves etc. Our DD's disability is physical and we didn't think we did awfully much for her beyond what you would do for a child, until we filled in the form and realised how much time we spent doing things your average parent wouldn't. Apart from her physical issues, she is exactly where she should be developmentally, she's just the same as her friends. We were awarded the middle rate for care for DLA.

She can dress herself and do all her own personal care its the shimming along and having to give 1 instruction at a time and the frequent meltdowns that's the issue.

This is where you need to re-frame. She can't dress herself or do her personal care because she needs to be supervised and reminded to do it.

Dla is based on need, over and above a child the same age. NT 8 year olds do not need rigid routines nor do they have constant meltdowns.

I’m getting ‘error404’ for the link above... does anyone else?

@Igneo I did but I Google it to access.

Thank you everyone. I am on a meeting just now but I am going to look through suggests and advice.

Definitely going to look at dla

It’s really hard. I have three kids (12, 11 and 8). My 11 year old and 8 year old have autism and adhd. My youngest is severely autistic and also has a medical condition. Neither can cope in a childcare setting. I gave up work when our middle dc was 1 as he couldn’t cope in nursery. His younger sibling can just about access her specialist school. In the last few years I have managed to find a part time, term time only job. It’s very hard work managing all the kids needs, getting them sorted for school etc. My job is poorly paid and stressful but it’s a job I suppose. I’d definitely look at DLA. Carers you’d only get if you earnt less than £128 a week from memory I think.

The earning threshold for carers allowance is pitifully low OP.