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Do I give up my job for my ASD son?

(23 Posts)
smu06set Sat 07-Jan-17 17:43:03

This is going to be long so apologies in advance.

I have a 10yrold son who has been diagnosed autistic. We are lucky that he is higher functioning but it still means the upcoming years are going to be tough.

On top of this I have just started a new job. I took it as it is something I really wanted to do, but it is going to be really hard work and lots more pressure than I thought and I don't feel like I can give my son what he needs and meet what this job will ask. I'm also not sure whether my mental health can stand up to all the pressure. I had 3 months off work a few years back due to depression and I really don't want that to happen again.

My dh works and we could survive on his salary, it would be very hard but we could. Am I mad to consider this? I would hate to get a few years down the line and realise my son was worse off emotionally because I had worked too much. Help!

Pandamanda3 Sat 07-Jan-17 17:53:14

Hi op just read your post and felt like I was reading about myself many years ago, first of all take a good deep breath and get a cuppa it is going to be ok!

I decided to stay home for my son as you are considering doing but my ex dh had a business and so I firstly created an office at home.
After our separation I started my own business and still work from home. My dv is 17 and at college but I still find he needs support.
It depends on the job I think and of course what support you have for him in school?

Is he supported there firstly say one to one support?

I'm just trying to help you break it down into chunks and then I find you can judge what's best what support he needs and when in comparison to your job hours if you get me?

It is going to be fine your just at a stage were its a shock and life can seem hard Iv been there and im happy to help in anyway you can pm me if you've any other questions or just to let off steam it's ok.

💐 for u x

Pandamanda3 Sat 07-Jan-17 18:14:28

Also op, any child on the spectrum needs continuity & routine, my dc is able to explain to me now the things that really set him upside down and distress him , many years ago he couldn't fully explain himself and it was a guessing game mostly. But the one thing he says makes or breaks his day is if the routine is suddenly changed. So if you are able to create a structured day for him and adequate support it may help, regardless of if you work or stay home.
It's tough but you know your child and family and you will know what's best so whatever decision you make will be right for you.

Your a good mum you can tell that, and im sure as long as he has your continued support he'll be ok! X

smu06set Sat 07-Jan-17 18:32:48

Thanks panda

Tbh the diagnosis wasnt a shock and I kinda knew from when he was 5, still doesnt prepare you tho!

My new job I dont think i could go part time, and my dh works odd hours so that makes it harder still. But I just want to do the best by ds and it seems more and more that i cant do that and work!

Msqueen33 Sat 07-Jan-17 18:38:21

I have two DC with autism. I stopped working when my middle DC was young as she's not hf. My youngest is non verbal and very severe so I don't work. Middle DC is doing okay at school but would not cope with being in childcare. She however is in a lot of ways very flexible. I would say give the job a good go if you really want it. There's always the option to quit if it's not working out or maybe negotiate hours.

Msqueen33 Sat 07-Jan-17 18:40:28

Should say they're 7 and 4. So still quite young. But I'd love to work. I'm able to see there triggers so I hoped I'd be able to stop when things went downhill. I've also found I've become very consumed by autism to the point of losing my identity. I often wonder if a job might have been that break and space I needed to be someone who wasn't just a special needs mom.

Happysea Sat 07-Jan-17 18:53:05

Hi there. I totally understand you. My 9 year old son was diagnosed as HFA last year. One of his biggest anxieties is getting into school. There was no before school club and he was not getting on well at all with the childminder (a total disaster due to her lack of understanding of an anxious child) so I was struggling to work out how I could work and look after him. In the end I was lucky enough to reduce my hours to two days and am very very lucky my dad drives down to take him to school on these two days. Without my dad though I would have to give up work altogether. I feel incredibly guilty for some reason that I only work two days even though as a family it was the best decision. My current job is dull and repetitive and there is no room for progression due to never being able to work longer hours or more days. I do wonder what on earth I will be doing in 10 years time but trying not to think beyond a day at the time at the moment. Sorry this is very me me me but i wanted you to know you aren't alone. It's tough. Feel free to pm if you ever want a chat x

smu06set Sat 07-Jan-17 18:56:03

Thanks msqueen

I guess I am conscious my son will be in yr6 next year, which brings a lot more homework (school have been very open about this), and then it will only get more in secondary school. He is good in school (except the fidgeting/routine aspects of asd) but at home he lets rip, so he really needs a parent at home from 3 so he can destress. At the moment he has to have childcare until 5.30 so he isnt getting that.

Parenting is hard!!

KarlosKKrinkelbeim Sat 07-Jan-17 18:59:45

My ds was dx'd at age two. I kept working. I am a lawyer and I now hold a senior job managing a team.
It has not been easy and the fact my job is well paid - enabling me to afford good childcare at home - I think was of decisive importance. Also Dh's willingness to have his career come second (he is also a lawyer, mind, so has a reasonably demanding job too). I'm very glad I kept working and I don't feel ds has suffered in any way. But as I said the income the work brings in helps pad the edges greatly. Under no illusions about how much harder it would be without that.

smu06set Sat 07-Jan-17 19:07:00

happy sounds as if you were in a similar spot as I am now. Thing is I feel I have gone as far as I realistically want in my career, to go further I would have to sacrifice more time, lots of getting home late/weekend working/lack of family time and I'm not willing to do that. I have worked so much over the past 10 years I have got to the point where I've had enough and I want to do whats best for my boy not juggle and compromise so much. Is that silly?

doggle Sat 07-Jan-17 19:07:34

I think you need to separate your son's actual dx from your work decision. At 10, with a new dx, when as you say you have really known for the last 5 years, there will not be an awful lot of change in your daily circumstances that would warrant such a big decision. The actual new dx might make accessing support a bit easier, but it won't in reality make much difference to your lives at all. Lots of people find it easier post dx as it removes the 'is there/ isn't there'. Most people who are deciding not to work do it at a much earlier point (when it becomes clear that the child cannot cope in nursery/ school, or that they are having to spend large amounts of time off work for their child's medical appointments/ therapy/ mental health appointments/ sickness etc.)

That's not to say that you shouldn't decide to give up work for your own health - but it isn't really a decision that should be made 'because of' your child's dx. If you want to give up work, do it. You may well feel better for it yourself. But don't do it for your child. Do it for you if you are going to do it.

I've done both, fwiw. I worked weekends and occasional evenings when small girl was tiny (to tag team w dh), we also had live -out ft nanny for a year when I was working ft (my employer paid) and we have also used a combination of wrap around care (three kids in three different nurseries/ schools, with three different after-school clubs/ childminders). Obviously the issues with finding childcare and establishing routine are exacerbated with sn. We were lucky in that we moved a lot, so ultimately I had to reconsider every year or two in any case. Whilst it was harder it terms of having to get used to new specialists and therapy teams, and prepare kids for new places, people and routines, it did give me an automatic reconsideration point each time. This was before ds was dx. I wouldn't have given up work for his dx (that's not to say it isn't hard coping with him - just that it was equally as hard coping with him before his dx as after, lol).

Ultimately, think of it as a wider project. The actual dx won't change your situation much (it would be unusual if a dx at 10 meant huge changes in routine) but it could be used as a trigger for you to consider your own health more widely, rather than your child's. Don't do it for him. Consider if your own dx would benefit from a change.

(one of mine was dx at birth, the other at 9, so am familiar with the differences. A new dx feels like a decision point, but in reality when you have pretty much known for years it doesn't change much in your day to day. It just gives you a legitimate 'reason' to consider what you have been doing for years because you have a piece of paper. The actual 'doing' stays the same, but other people view it differently - if you feel you need to give others a 'reason' for giving up work that isn't 'I don't think I'm coping with my life'. So it kind of gives you a legitimacy. Your child is exactly the same. grin. If you needed to give up work the day before you got the dx, then you still need to the day after. If you didn't need to give up work before you got the dx, you don't need to the day after.

The sn boards are a good place to hang out if you haven't found them yet.

smartiecake Sat 07-Jan-17 19:08:16

My son was Dx nearly 6 years ago with HFA. I had a thread on here and one of the things I asked was whether I should give up my job. I didn't and I am glad I haven't, however I have had to change my hours so I work 9.30-2.30 and am able to be at home with him after school every day. If I hadn't been able to do this I probably would have given up work, as childcare didn't work for us. I do have a professional job that has its stresses but actually having my job has kept me sane and also the money is essential.
Can you see if you can change your hours? It's a tough decision.

reallyanotherone Sat 07-Jan-17 19:10:07

What about your dh giving up work/changing hours if you really want to continue working...

smu06set Sat 07-Jan-17 19:20:00

Thanks all, sadly changing hours really isnt an option. My dh has also said he doesnt want to give up work (he wants to be the provider and tbh i think having ds all day would drive him bonkers!). doggle I think you're right about this being a decision point. Whilst the dx doesnt change anything physically it has given me a clearer idea of what is likely to happen in upcoming years and so I have to plan for that.

The flip side is if I give up work my family will not be impressed and I will probably beat myself up for us not having as much money, so I can't really win!!

doggle Sat 07-Jan-17 19:24:11

I cross posted with your last couple of posts. It doesn't actually sound as though you want to keep on working anyway, so maybe it's more of a lifestyle decision on your part? It's fine not wanting to progress if you would have to work more hours - so really your choice is if you want to continue at your current level or not.

Whether your son had a dx or not, you would be having to make decisions about childcare with the transition to secondary - it's a glorious pain in the bum for parents. In your situation I would be looking for a nanny/ childminder that could collect the kids from school, take them home, supervise snacks and homework, and get the dinner on for me if I felt that would be helpful. This routine could then be continued as long as necessary. With sn kids it is usually easier for this to be at home, but some secondaries do have a homework club as well. I just find collecting kids from round the houses to be a total pita. It's much easier to drive home and for everybody to already be there and getting on. (At one glorious point this would also mean I dropped the dinner making task, at least for the kids lol).

It's all about your own economics/ lifestyle though. Sometimes it's better to maintain a bit of distance - I know that trying to supervise ds's homework would try the patience of a saint. I've long grown out of the martyring myself ideal lol. In my house this would be a far more stressful activity than working for a living grin

Happysea Sat 07-Jan-17 19:28:34

I agree that whilst the diagnosis doesn't change anything it does mean you start thinking about the future more and the problems that may occur. My son's anxieties are getting worse as he grows older not better. In my experience I have not been able to put my job and what I want to do before him. He will not go into before and after school childcare (believe me We have tried every option and strategy) and my dad is only able to help two days a week. So that is ALL I can do. Even I found. a job in school goes only I then have the problem of what to do with him on the days he has a panic attack and can't go into school. It's hard. If you aren't too bothered about career progression and you can financially cope without a job then I would give up work. It doesn't have to be for ever and may just
Take the pressure off you all a little.

Cakescakescakes Sat 07-Jan-17 19:30:55

My ASD son can't cope with childcare and we can't afford a nanny to look after the two DC at our house so I don't work. I would dearly love to work even a couple of mornings a week for a break but I just can't see how I can make it work childcare wise. If anyone has any solutions I would love to hear them!!!!! Like pp has said it makes a difference if you have high earning power and can afford quality trained in home childcare. If I could afford a nanny with autism experience to do after school care then I'd be at work like a shot but it's just out of reach financially and we've no family support nearby.

Happysea Sat 07-Jan-17 19:36:40

Cakes without my dad staying with us two days a week so I could work we would Be in the same position. I don't think people really believe me when i say I cannot Put him In childcare. Many parents at school have freely expressed how weak I must be or to just 'force' him to. It's so easy for others to judge.

doggle Sat 07-Jan-17 19:46:15

I didn't request experience, just a willingness to learn, and an enthusiasm for working with kids with sn, tbh. Every kid is different, and I was more interested how they would deal with my kids than anyone else's. grin
Given that both parents are in the legal profession, paying for childcare is a choice here. It may not be in other circumstances (I know we were turned down for respite as there were two of us, etc etc, so we used our HR DLA to pay for some childcare). We were lucky to be able to do this, as I know a lot of people who were in low paying jobs that would not support high childcare bills, or who did not qualify for HR DLA. Sometimes it is not a choice whether to give up work or not, but for the op it is.

Itmustbemyage Sat 07-Jan-17 19:47:14

My youngest DS has ADHD. I always had managing a team level of jobs when he was young. My post was made redundant and I chose not to work for two years in an effort to help manage my son's behaviour, although financially it was tough. It honestly made no difference to his behaviour , and when I went back to work , I needed to work just for my own sanity, I could only manage a job with less responsibility and one that was okay with me getting calls from school to go and collect my son because he was being temporarily excluded for his behaviour (the school was not at all supportive). The decision is hard but whatever you do, someone is going to find fault with it, so do what suits you and your family.

lalalalyra Mon 09-Jan-17 01:39:23

With regard to the money side - does your DS qualify for DLA/PIP? If he does you could claim Carer's Allowance. That would go a bit of the way to filling the gap that you giving up your job would leave if thats the route you need to go down.

GreenieGables Mon 09-Jan-17 18:27:33

My middle DC is 6 and has ASD. Whilst she's HF she's very volatile and has severe anxiety. She couldn't go to any kind of childcare.

My youngest is starting school full time this year and the plan was to find a PT job around school hours, but I'm reconsidering that at the moment. My DD is not a great sleeper and this morning she had a meltdown for 2 hours before school. I was utterly exhausted by the time I got back home at 9am and couldn't imagine going in to work after that! I don't cope with her very well when I'm tired, so I'm hoping that if I stay off work I can use those hours to recharge my batteries and be better equipped to dealing with her after school.

She gets DLA and I get carers allowance, we can manage ok on just my husband's salary so will see how it goes.

GreenieGables Mon 09-Jan-17 18:30:34

I should add, the only problem I have at the moment is others people's expectations! I keep getting 'oh you must be looking forward to going back to work soon' and 'have you updated your CV yet, you'll have to start applying for jobs soon'. Like people assume that I'm going back the second my youngest starts school!

My SIL is the worst, keeps telling me it's torture being a SAHM (she ended all 3 of her mat leaves early as she preferred being at work) and she doesn't know why anyone would choose to stay home hmm

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