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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

little boy with autism

114 replies

x2boys · 04/03/2014 18:32

my three your old was diagnosed with autism and some learning difficulties at xmas at the moment life is awful both myself and my husband work opposite shifts to work around childcare I,m a nurse in a very stressful job work have not been at all supportive of my circumstances would I be being unreasonable to give up work for a bit to care for my son he is quite demanding with a terrible sleep pattern . we would have to claim some benefits we are currently awaiting a decision on dla . I would have to claim child tax credits housing benefit carers allowance but we would have a quality of life and there are all sorts of support groups and discounted days out that we can never go to and we could actually be a family I,m a trained nurse I wouldn't want to give up work for ever maybe a couple of years until my son is more settled what are peoples thoughts?

OP posts:
GinSoakedMisery · 04/03/2014 19:53

My DS was dxed with autism when he was 2 1/2 and I struggled working and doing all his appointments, meetings, groups.

As it happens there were redundancies at my work and I tried my hardest to be amongst those being made redundant, I told management I wanted it so someone could have my space (my job would have been secure but I more or less gave it to someone else).

It was the best thing I did. We were a few hundred ££ worse off but we budgeted better and family life so much better.

I've recently gone back to work, a very easy relaxing no stress job and I have school holidays off so I don't have to worry about childcare.

Do what's best for your family. Once you've all settled into your sons autism (and I don't mean to sound offensive with that, you'll get what I mean in a few years time) you can always retrain back into nursing.

Good luck.

Original poster
x2boys · 04/03/2014 19:56

yes unison they are helping like I said it would nt be forever but over the next few months I have to get him assessed for his statement make a decision on schooling attend all his appointments I really want the best possible outcome for my son and I feel like I,m failing him at the moment by always rushing off not spending the time I need to spend with him there seems to be quite abit of support for familys living with autism I my area but we are always so busy we cant access it.

OP posts:
saintlyjimjams · 04/03/2014 20:01

Do it.

I also have a 14 year old with severe autism & severe learning disabilities. I run my own business now (need flexibility) but the early years were hard work. Having me on hand was essential really.

Good luck!

frumpet · 04/03/2014 20:02

No yanbu , join NHS professionals , you can opt to work in the same trust , so could if you wanted do a couple of night shifts a month if you wanted to keep your hand in , thats if it would fit in with your family . Otherwise give it up for now and go back in a couple of years or when you feel able to . It is a hard enough job without family pressures . Hope all goes well for you .

scottishmummy · 04/03/2014 20:07

Take advice before you resign,in case it affect your benefit entitlement
Best wishes and fortitude for times ahead,I hope all of uou are ok
Can work offer time off?career break for year return pt time?have you approached your union?

saintlyjimjams · 04/03/2014 20:10

Tbh OP - I would give up work again now if I could - ds1 is much more settled now & we know what we're doing & have a very good support package (regular respite etc) but it's still exhausting. I don't mean that in a woe is me way - I like our life - but just to say you shouldn't feel guilty.

Do you have the makaton dave video? That's a good way to teach sign. Also who did PECS with you - some kids don't get on with it - but there's some terrible PECS practice out there and it is worth trying with someone who knows wget they're doing. We used PECS initially, added sign when my son learned to imitate aged around 9 & now he uses a communication aid as well. I spent the early years thinking I had to choose a communication method & stick to it & now we just go with whatever ds1 wants to use in the particular circumstances.

mrslaughan · 04/03/2014 20:12

Do it, it is what the support network is there for.
Plus the effort you put in now with your son will pay dividends as he gets older.

StingingNettle · 04/03/2014 20:14

Are you planning on returning to nursing in the future? I gave up nursing when my son was just turning 3 for exactly the same reasons you give. My colleagues at the time of leaving suggested I do a enough shifts a year to keep up with the registration requirements, but I felt totally overwhelmed with what was going on with my son that I left completely. He's now 8 and life has settled somewhat, so I'm trying to get back into nursing, however the return to practice course places are very few and far between. The last intake here had 32 places and 1200 applicants! I don't regret it, at the time I did need to focus on my son and family life, but I do wish I could go back take the advice and do the odd bank shift.

saintlyjimjams · 04/03/2014 20:22

I was going to ask whether bank nursing might be an option (not sure how many shifts you're meant to take).

saintlyjimjams · 04/03/2014 20:24

If you qualify for carers btw you can earn £300 odd a month as well (they'll average it out over the year/ although it's easier just to be below the weekly threshold). You have to work for fewer than 15/16 hours a week iirc - but it means you can bring in a bit extra. I'm just wondering whether that would fit with some small amount of bank work?

gamerchick · 04/03/2014 20:26

You can earn up to 100 quid a week on carers allowance.

Original poster
x2boys · 04/03/2014 20:27

yes I have always nursed so no other option really saintly they do signalong in my area apparently it has a wider vocabularly than makaton so that's what were aimimng for the speech therapist suggested pecs but she has been useless so we are getting a new one.

OP posts:
saintlyjimjams · 04/03/2014 20:27

Is it a £100 now? Hmm - I may be able to reduce my hours soon then.

RnB · 04/03/2014 20:30

OP autism is hard enough without a stressful job on top of it . Be kind to yourself and do what you need to do. Good luck...

gamerchick · 04/03/2014 20:31

Check your last letter it'll tell you on one of the sheets.

Original poster
x2boys · 04/03/2014 20:32

some lovely comments have only really thought about it recently but it would make family life so much easier

OP posts:
wileycoyote · 04/03/2014 20:35

I have an autistic son and work full time as I am a single parent. My mum helps out a lot though with appointments, school holidays etc. Given the choice I would work part time as I wouldn't want my life to shrink too much - it's always good to have options..

WilsonFrickett · 04/03/2014 20:39

Another saying YANBU although you do need to keep your registration current. Your boy is 3 - I know at the moment it all seems very far away but likely thing is in 2 years time he will be in some sort of educational setting and you could - if you want to - be back in work again. I think seeing this as a career break is better than thinking 'that's it, I'm done with work' as it will keep your options open.

That said I would do nothing until your DLA and carers have gone through and been approved. Many families are having to fight for their benefits, and fight hard. Just make sure the safety net is in place before you jump.

Slutbucket · 04/03/2014 20:41

I would not hesitate for one moment and I don 't think anybody would begrudge anything that you got. This is what the welfare state is truly for to help families like yours in times of crises. A lot of people use BSL I have used this in my career instead of Makaton. BSL is a dynamic lively language that changes like any language would. Makaton is slower to keep pace and as you said has more of a limited vocabulary .
You sound a brilliant mum and your DS is so lucky to have you! X

Slutbucket · 04/03/2014 20:44

Also do you work for the NHS? I'm sure you can get a sabbatical if you need it.

saintlyjimjams · 04/03/2014 20:48

BSL has a different word order than spoken English though. For working with people with LD's you really need to be able to speak and sign at the same time.

Original poster
x2boys · 04/03/2014 20:52

yes I work for the nhs but I,m not sure about a sabbatical its all going very wrong at the nhs at the minute I would never not want to work again but I am just so very tired and stressed at the moment I just want to get my son more settled and a better sleep pattern hopefully out of nappies and talking or communicating .

OP posts:
WilsonFrickett · 04/03/2014 20:56

I know lovely. But focus on the practical stuff first - get the financial ducks in a row, get the paperwork done, get that massive amount of stress out of your life first, then you can really focus on DS.

The thing that's hard to comprehend when you first get a dx is that this is a life-long project - I mean that in a positive way, honestly! It's just there's so much focus on early intervention - with our natural desire as parents to 'fix' things, this can lead to a sort of hurricane of activity and appointments and stress and worry.

It is OK to make a list, start from the top, and work your way down. You don't have to fix everything at once, honestly. ((hugs))

Original poster
x2boys · 04/03/2014 21:04

lots of positive comments thankyou for not thinking I just want an easy life I don't I have always worked I do want to work but maybe in a less stressful environment of course I wont just chuck it all in until everything is sorted financially I just think maybe for a couple of years it would make life easier on all of us

OP posts:
Clarabumps · 04/03/2014 21:09

Hi OP. I have a ds who has just turned 5 and was diagnosed a year ago.
A year ago he had zero language and pecs was just a no go at all as he didn't have the understanding to even know what was going on with the cards.He is now using very short phrases and can use a few pecs cards.

All is not lost. It's amazing how much they can come on as their wee brain matures and with the right help.
This is such a hard time for all of you. You will be mentally exhausted buy it all.
I'm a SAhm not through choice but through necessity and it's actually been the best thing for our family.
It's really intense being at home all day but when all this settles down then you will find your groove and get into the swing of things. I really know how you feel as your feelings are the exact same as mine last year but there is hope.
Things really will get better and you will all adjust to this.
You need to give yourself a break and do whatever it takes to make the load a bit lighter for yourself. I'm going to Pm you my email address and you can email me anytime you want if you need someone to vent or talk to.
I have recently started the Hanen More than Words course at the local school and it's been invaluable and I've met other families with autistic kids. I've never met anyone else who had an autistic child until a few weeks ago and it was lovely just to chat.
It's been so isolating for the past 3 years. It was like being able to breathe finally taking to someone who "gets it".
Sending you all some un mumsnetty hugs.