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Working full time possibly autistic child

15 replies

thefutureisours · 11/10/2017 21:03

My ds (2) under review for possible autism. I am currently working full time in a very stressful job. I'm really struggling to be honest and feel like quitting. I am tempted to ask for flexible working but I've only recently gone back to full time at work's request and I'm worried it won't be granted since they wanted me to go full time. Does anyone have any advice? Do many other parents of autistic children work full time? How do you manage it? I just feel like my ds really needs the extra support just now.

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livpotter · 11/10/2017 22:09

I really feel for you. It's very hard to take everything in at the beginning on top of having to work. I've always been freelance so I can't comment on working full-time but I've definitely found that I've had to take a step back from work for the last year or so. Apart from wanting to be there for him, there also seem to be lots of appointments, healthcare visits etc (He's 4 now and has been under the autism team since 2.5 years old.)

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Sausagepickle123 · 11/10/2017 22:19

I work 4 days so not quite the same but longish hours anyway. On the one hand work has been my saviour, a distraction which gives some perspective. I also told me boss quite early doors
Before diagnosis and he is extremely accommodating of appointments etc. Frankly though it has been hard work, I have spent so many evenings sorting out paperwork etc not to matter the guilt of not being there. However I have been lucky enough to afford childcare that I (and my autistic son) are very happy with and that has made a massive difference. As a working mum you just can't do and be everything to everyone (why is every support group/course etc at 2pm on a weds?!). Good luck and do what is best for you and your family x

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thefutureisours · 11/10/2017 22:34

My son is in nursery most days but grandparents do one day. Nursery are great with him but he's struggling there at the moment with biting and grabbing. I wonder if a childminder would be better but he loves one of the girls there. He goes to her for cuddles and cries when she leaves the room. I just don't know what to do for the best at the moment.

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livpotter · 12/10/2017 06:35

Have you spoken to the Senco at the nursery? We have put in a support plan and meet once every 2 months to discuss progress and tactics for dealing with stressful situations. It would also be helpful if they could keep a record of incidents/behaviours while at nursery as it can help work out triggers. I did consider moving ds but he's now really attached to a couple of members of staff, who are brilliant and just get him. I think for him it would've been too stressful to try and move him in to a new situation.

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Sirzy · 12/10/2017 06:58

I would consider the flexible request and if they say no then you can reconsider what is best?

I worked full time until ds was 5 and then I realised that it was having such a negative impact on my mental health so I stopped working. He has autism and a number of other conditions so has at least one appointment each week which also made it much harder. He is nearly 8 now and although I know I made the right decision to stop working I do worry about the long term and know that sadly I have put myself in a tough long term situation but I will have to deal with that when the time comes!

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Fairylea · 12/10/2017 08:17

I haven’t worked since I had ds who is now aged 5. He was a really demanding baby and then as he became older it became apparent that he has severe autism and learning disabilities. I was exhausted from just being his mum and full time carer to be honest, I couldn’t contemplate working as well. I would consider all the options open to you as well as making some benefit calculations- we manage with a combination of dla, carers allowance and tax credits, as well as dh working full time.

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coldheartweapon · 12/10/2017 11:11

I gave up work when DS was diagnosed with autism at 3. As your DS is only 2, he hasn't started school yet, which is when I found the real difficulties arose (and it was a full-time job keeping up with EHCP, tribunal and DLA battles). Things have only got harder and more time-consuming as he's got older, he was out of school for two terms at one point, and before that I was constantly being called in to school. He sleeps very badly too, which got worse when he was at school, so I get very little sleep at night and have to catch up during school hours.

I don't know any mums of children with autism who work full-time in my area, although there are a few with Aspie kids who manage it as they're in mainstream and are fairly mild.

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coffeemachine · 12/10/2017 21:32

if he is only 2 then it is doable though very tough. I have been there. it was hell for me but we survived as the nursery setting was good. it really depends if this works for your DS or not.

for me the problems started with school: 15 weeks school holiday and school only open from 9 - 3 and no wrap around childcare for children with complex SN. I now work school hours only but it is incredibly stressful and it has a massive impact on my mental health but going down on carers allowance is financially not an option for me. I am the only mum of a child with severe ASD and learning diffs that I know that is working in my circle of friends. I found things get only harder the older the children get.

I don't know your financial circumstances but if you can scale back work money wise, do so. ASD is not a short haul issue but is really a marathon and you need to make sure you are looking after yourself as well.

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thefutureisours · 13/10/2017 21:50

Thanks. I really appreciate everyone's comments and opinions. I just don't know what to do for the best, dp and I aren't great at the moment either which makes me reluctant to lose my income too. I don't think the stress I am under is helping though. I'm just stressed and sad. I have a tendency towards anxiety and depression which keeps rearing it's head recently after a long absence.

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Shybutnotretiring · 14/10/2017 08:13

Oh no, really difficult. I only find single motherhood, special needs children and full time employment doable because I mainly work from home. Plus roping in my poor mother (she's nearly eighty). And even then I feel like someone clinging to a ledge by their fingertips!

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totallyspent · 14/10/2017 10:10

I work part time. I have 3dc, two with ASD. DS1 is HF and very manageable.DS2 is far more challenging, behaviour wise and extremely demand avoidant. I recently separated from my H and everything was hanging in the balance over whether I could continue working. Luckily my job is fairly low key(admin) and work agreed to change hours so I can drop off/pick up at both ends of day. (Due to Lack of childcare) As I am part time I do have one day off on Monday which is so blissful (when the kids are at school) that I do seriously consider quitting. BUT. I find work gives me respite. Even though it’s rushing around dropping off, panicking at being late, getting the tube, etc, it’s really nice to get to work and have people treat me well, with kindness, respect, nice chats, really makes a change from being screamed at by my boys!! I’m going to continue for as long as I can and I take comfort in knowing that I can always stop. Moneywise I’m not earning v much and I’m pretty sure if I moved onto benefits -income support etc there wouldn’t be much difference.

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Biscuitrules · 17/10/2017 13:30

I have two kids, DS2 age 3.5 has a diagnosis of social communication disorder, i.e. the communication and social difficulties of ASD but without the sensory/routine problems. This does mean we have it easier than others in that there are no behavioural issues, but DS2 is completely non-verbal and very focussed on his own agenda.

I work 4 days a week in a very demanding job (I often have to work evenings, including at the weekends, to keep up) and my DH also works full-time. It works for us because we have a a fantastic nanny who gives DS lots of one to one care, collects the older one from school, and picks up all the pieces at home. My work can be done remotely so if I have appointments I just work from home and take an hour out to attend the appointment.

Once you quit it will be hard to go back so I suggest you see what you can to do adjust matters before taking that final step. Do put in a flexible working request as having a bit of extra flexibility might take the pressure off and the worst they can do is say no. If it is that or quitting you have nothing to lose.

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totallyspent · 17/10/2017 23:02

What I found helpful was to type out a business plan of sorts which set down exactly the hours I wanted and how it would work, stating the pros and cons from my company’s pov and also a spiel about work life balance and caring for SEN kids. My boss was really impressed and the statement fed into the flexible working request form that I had to fill out after the chat. I’m sure you will do this anyway, but it really helped in setting out exactly what I wanted and my work appreciated that. Good luck!!

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thefutureisours · 18/10/2017 20:38

Without giving too much away about my job it's not one that you can really job share or do part time. I did 4 days for a while but I now have double the workload so no way I could do that as things currently stand. I just don't know what to do, I feel trapped and stressed.

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coffeemachine · 19/10/2017 06:59

would your finances stretch to afford a nanny?

I changed job. lower paid, less responsibility but school hours only. financially this has hit as hard but still better than carers allowance - at least financially. mental health wise and health wise it has had a pretty devastating affect on me that I cannot give up work. If you can prioritise your own health over your job, then do.

Do you have a partner who could go part time instead?

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