do you think your child having sn has taken away your choice of whether

[2snowshoes]

you are work or stay at home?
reading the debate about one verses the other made me wonder if we loose all choice.
I know I would never be able to hold down a job and get the time of I need to care for dd. or tbh handle the strain of working in a job.

I can only work part-time, one because DH works long hours and his shift changes from week to week, two can't afford chilcare for two kids, and third too many appointments looming and places to go with DS, like the language unit twice a week...
I wonder when he gets a bit older and is at junior school if he gets more problems then even less opportunities for work, employers can only agree to so much.

AngryfromManchester, I agree that it also makes you more tired.

At the moment we are going through a bad time with dd1 and I feel utterly exhausted and drained. I am so relieved that I don't have to hold down a job because I can barely think straight and I honestly don't think I could concentrate on a day's work. I have nothing but admiration for those who manage it.

Oh yes. Emphatically. I have been back to work, twice. Both times, I had barely got my toes under the desk and DD1 was hospitalised. First time I took a year's sabbatical. Second time, I took voluntary redundancy.

What doesn't help is my particular career is inflexible, long hours, often overseas. And childcare notwithstanding, there are things you can't delegate 24/7. But I'm struggling to transfer to anything else - unless you're self-employed, working from home, you're always at risk of letting others down. And personally (ADHD) I need that risk to keep me focussed.

I have bloody pluerisy and I am signed off atm and my GP is convinced it is because I never rest. I am working part time in retail as a duty masnager, doing a full time degree and caring for a severely disabled child and two nt children with no family help. I think I have overdone it. At times it has felt easy, at others impossible. The whole reason for completing my degree is to hopefully have flexible working that will be less physically demanding at the end of it, but atm I am wondering what the point is tbh

Very sorry you are so unwell, Angry, Pleurisy must be very draining. Can I be nosy and ask what sort of work you are aiming to get into at the end of your degree?

DS has relatively mild SN - but this restricts me to part-time work so I can minimise the amount of outside childcare needed. I've found holiday childcare he's happy in, but not really cracked after school care.

Yes. I do work BUT have had to accept a demotion/pay cut in order to stay in employment because i needed a job that could offer me flexibility.
If it were not for my wonderful employer & brilliantly understanding manager i would of had to give up work when ds2 came along.

It is sometimes a struggle but it has kept me sane (sort of).

I have only managed part time work since ds arrived dispite having a profession that accommodates part time quite well. As ds has got older working has got more challenging because getting the right flexible childcare has got harder and more costly and the medical visits frequent. Life got a little more predictable once ds was in a sn school able to handle day to day challenges. Physically I have almost fallen apart too - so I feel for you angry! Pleuresy is very draining! I hope you can slow down for a while.
So yes I think having a child with sn can/ usually does limit your choices. Many parents scale down work for a few years whilst their nt dcs are small and needing high energy parental commitments- but I know my son will always need high level day to day care he will not ever reach full independance.

Absolutely.

When the boys were diagnosed I was studying with the aim of being a ateacher,I cannot do that now.A lack of childcare plus absic exhaustion through lack of sleep etc.

The only option would be for DH to pack in work and as he wouldreadily admit, he is not suited to being a SAMHP.just wouldn't wok for him/ us at all.

ATM its not the big issue bar finances- we have a toddler anyway so am fully occupied with that and PT study....give it a few years though and I think I will be far moredespondent if I haven't got a job. Depending on what route DH takes career wise over the next few years, it could make my life very difficult as most work is in London so very far away from anyone or anything I know

DD you're right it doesdepend on your job.My last job was with a charity and many of my famillies ahd a child with ASD- these days if I had to sit through the SSD meetings etc i'd end up being an advocate, and that wasn't my role at all. I'd be beyond useless,tbh and I wouldn't cope well with the child protection stuff any more either.

We did have CM for ds3 so I could study but he'smroedemanding now,plus ds1 simply wouldnt cooperate with childcare and is arisk to children unless he has a 1-1.

Well, DS1 is having to do half days at school at the moment because afternoons have been a total write off for him. If I was wanting to work, my options would be severely limited.

awww thank you for the sympathy, it really does ease the pain off a bit

Totalchaos, I am doing an art based degree and I am working at a couture house atm (which is flexible aswell but unpaid). I am hoping to do a pgce after my degree and go into teaching/education I was sort of relying on the fact I would 'have holidays off' not in the sense that they would be off, but in that it would hopefully work around my eldest. Magso, my eldest will need full time care forever too. It is quite a daunting prospect. What makes me feel worse is that people are so JUDGEMENTAL about adult care aswell. I understand some parents will not/do not want their child to go into adult day care or residential placements but I feel like saying sometimes, 'I really do not want to hear this!' as this is my child and my choice is to do with her not me and I think she would be as bored as anything at home and fester away, but anyone would think (in some cases) I am planning on feeding her to the lions at London zoo

Definately my choice has been taken away. I was musing about trying some part-time work recently but don't think I could manage and still stay sane.

AFM, we need a whole other thread on adult care!

yes it affects yr choices re work

atm I actually have pretty good work / life balance. However, I appreciate I can only do this because dh takes so much time out of his SE job - to the detriment of his business. And also my current employer is v flexible / understanding

Were it not for my dd's complex needs I am pretty sure I would have far higher career aspirations and would be pursuing these once my youngest was in school. However, I accept this will probably not be the case and I will most likely tick over doing the same as I am doing now - getting by and earning a reasonable wage but not exactly the top of my game - iykwim

i work part time but i would work full time if i know i could hire a suitable childminder that would understand my daughters asd, and treat her well, its a hard call for sure.

i have great family support when i work evenings and weekends , but would not hire a childminder as not many people fully grasp the condition and it can be frustrating.

I couldn't work full time cos ds won't settle for anyone else at all, so I work part time (during school hours) and also work from home.

I made a decision when my daughter was in NICU and things looked really bad that my career was over.
When the terrible outlook failed to materialise, I went back to work but something has changed. I now have the job I wanted 10 years ago but have little interest or enthusiasm for it - my mind is consumed by dd and her development.

Would love to give up work but financially impossible - we don't get any support unfortunately