How do you have an SN kid and a successful career?

[mamma3568]

I did ask this on the SN section but didn't get any response so posting for traffic.

I don't know how other parents do it. I am WFH, DH is the SAHP. He's generally great but not always super organised, takes ages to get toddler DS out the door for a day out so I can work. He was really stressed out when I was working normally, and now he's a lot happier I am at home and can be on hand to help. Even with all that DH is primarily responsible during the day and he's still exhausted, which I totally get. DS is so demanding, delighted I'm home, but so clingy, wanting me to play with him all the time. We're struggling to establish boundaries. I can't shut the bedroom door (no home office) on him because he has huge meltdowns and won't give up. I can work outside to a limited extent but a lot of what I do involves very private information and lots of meetings so I have to do it from home. And DH can't take DS out every single day (not in lockdown here). And there's no question me being home with DS has allowed much more progress for his SN issues. On top of that DS is a terrible sleeper, needs to be soothed to sleep several times in the night by me.

It's really impacting my work. I'm not even getting the bare minimum done. My employers are really understanding, but they are starting to audit our productivity and I'm falling short. My manager has high expectations of me - she's lining up some big projects, exciting opportunities, stuff I've never done before, which I'd love to do. But I don't know how I'm going to do it. There's a strong culture of working hard, out of hours in my company. I would need time to study and understand, but I can't even complete the day to day generic tasks some days.

We are also considering homeschooling in the long term. I know the solution is for DH and I to switch, for him to work. But it would be difficult for DH to find something on the same pay grade as he's been out of work for a while. And I would be so sad to give up the opportunities I have, which are unlikely to come my way again. I think the ideal solution is for both DH and I to work on part-time, which is possible for me if I took on a lesser role, but it would be difficult for DH to find that kind of job in this economic climate. And we have to make sure we can afford therapy for DS as well. We can't afford nursery along with therapy on a single salary, and the only nursery appropriate for SN only does half days and is over an hour away.

How do other parents do it?

Just to clarify it's the combination of lack of sleep for me and the hours I am distracted from working that is impacting my productivity.

Didn't want to R&R.

DS is now 11 and it does get easier with age IME.

But after all this stress and lack of sleep, my brain isn't what it used to be. DH and I both work full and are students. We are longer top of the class. We have embraced the 'good enough' concept.

Please be kind to yourself...

(And our house is 'lived in'. ALL OF THE TIME. We made our choices and as a gift to myself for working full time, I have a cleaner once a week, so it's messy but not dirty).

Being very honest - although it won’t be what you want to hear- most people don’t. I have a son with complex needs aged 8 and have a wide circle of friends who all have children with sen and none of us work, at all. We just can’t cope with the stress and sleepless nights etc. Those who do manage to do something usually volunteer for special needs charities or groups just to keep themselves busy without the pressure of paid work.

I used to be a senior marketing manager before having Ds. I haven’t worked since. Our income has plummeted. Dh works full time and I claim dla for ds and carers allowance and we just muddle through.

My health has also become worse since having ds, probably due to stress etc, I now have a lot of autoimmune conditions. There is no way I could manage working on top of everything else going on.

I have a SN child and when he was at home the only way I found I could work was by building an office in the garden so there was proper seperation of space. He did an aba programme at the time in the house. Now he is at school I work school hours as my DH works long hours and frequently overseas. If you can't seperate your space at home would a communal office, Regus or similar be an option? Is the working from home just temporary due to covid?

The sleep deprivation is harder to deal with. I tend to just go to bed early, especially now as I also have a 1 year old to care for.

Respite. We both have demanding jobs and the only way we do it is by paying for help and also with help from social services - our DC goes to an after school SEN centre four times week (she LOVES it)

You need to look out for your DH. He has very much got the short straw here.

I'm lucky my ds sleeps and always has been a good sleeper. I do my overtime in the evening once he is in bed.

My dm also looks after him before and after school which is a huge help. (My normal working hours are 8 to 4).

I had the same thought that I didnt want to give up my career and lose these opportunities. I've just had an unexpected promotion this year. But to me honest I am physically and mentally exhausted. The mental exhaustion is just the worst and I dont know how much longer I can do this for.

How old is your DS? I think as they are older it gets easier as there are generally a lot of appointments at the start.

It also depends on the condition. My DS has downs and I've a busy but well paid and fulfilling job.

I'd also really think about not homeschooling you will not get a break and it could be hugely frustrating (or rewarding!)

What does their Paed say about the sleep?

Is there anyway you can go back to the office? We're allowed during lock down/tier 3 by exception for which you would qualify.

Failing that, during lock down 1 a friend would pretend to go to work but sneak upstairs so her DC didn't know she was there, her DH would bring her food during the day. It was the only way she could actually work.

Our son has asd, he is 13 now and it has definitely got easier than when he was little. He is high functioning and can attend mainstream. He has learned with a lot of support to regulate himself. He still has ups and downs but on the whole things are better.
During lockdown when I had to WFH it was so hard because he wouldn’t engage with home learning and was very depressed. School keeps him sane, so glad schools are back.

I've just RTFT and am sad you got some dispiriting replies. It is possible to combine the two but you (plural) need help and it doesn't sound like you're getting any.

How much help is your social care team providing? We had none til we got a lawyer and fought and fought the council.

Respite is what you need. I wouldn't do home schooling as that will make everything harder for both of you. Plus I think it's important for all children to learn independence as much as possible.

My worst nightmare has always been for our DD to live with us and then one day we die and she is fucked. I've seen it happen to too many of my friends' siblings.

So my plan is to make DD as independent as possible (ie not very) so that we can set her up in some form of supported living and make sure she's aok so that as and when we die her whole world isn't necessarily turned upside down.

I think your DH needs to get a job of whatever calibre just for his sanity and you need to get some respite. Our DD loves the stuff we have organised for her and two people who come and take her out.

We have two children with Sen. The youngest has the most complex needs and at 8 doesn’t talk, needs watching all the time. Our 11 year old who also has Sen needs a lot of support. I didn’t work when they were younger but now work 20 hours a week in a term time only job but I still have all the childcare and house responsibility.

I would say if your dh is a stay at home dad he needs to be picking up the childcare during your work hours. I wouldn’t have been able to pick up a career when the kids were small as my dh wouldn’t want to adjust to have the kids. Even now I do the bulk of it like annual reviews, appointments and was left to it in lockdown.

I think you either need to find some office space. Or could you lock the bedroom? The fact is you’re the sole earner. I think for most people if you have a child with Sen it’s very difficult to have careers. My kids needs are complex and us both having careers wouldn’t be compatible with raising the kids that we have.

I'm sorry so many parents are struggling with similar or even tougher issues. The replies are difficult to hear but I feel a little less alone - thank you so much.

I think it depends on the level of special needs tbh my son has severe autism and learning disabilities he goes to a special school ,it would be impossible for both my husband and me to work as someone needs to be around to put him on the school bus every morning and meet him in the afternoon ,he's in year six but he needs full time care ,there isn't provision for child care for his level of need in school holidays etc .

@x2boys you need a really understanding employer! I'm so lucky in that all the places I've worked have understood that my son creates some things that need workarounds. I was able to go in later and take a shorter lunch and leave early to accommodate the school bus. Working from home has made that bit even easier!

He's also able to go to a mainstream afterschool. In the summer we use annual leave, unpaid leave and babysitters.

I know I'm lucky to be able to manage and afford all that's though.

DH is SAHD.
I am currently WFH in the spare bedroom - with noise-cancelling headphones if DS is at home (e.g. last Friday was inset day). I actually went into the office for the long summer school holidays, as I didn't think our son would cope with me being home yet unable to play.

Career? Not a hope. I can hold down a full-time job, and have an understanding boss who lets me work on a flexible basis around any school meetings or medical appointments. He has said that he'll look at whether I can use some of my 'work hours' to study to progress, as he accepts that I cannot study in the evening or weekend. But I am resigned to working contractual hours only, no chance of working long hours or putting in the extra effort.

Respite? Hahahahahahahahaha. My one income won't stretch that far. I battled Children's Services for three years to eventually get a DP award that buys six nights per year (i.e. one every two months).

I agree with PP you need an understanding boss. Our DD has severe SEN and behavioural problems and cannot be left alone for a second.

But we are lucky because we have nice bosses who allow us flexibility, plus we have fought and fought like cat and dog for YEARS to get respite.

It is exhausting but it can be done! I remember a friend once saying to me 'well of course you can't have a career because of DD' and I thought FUCK THAT.

Having our careers means we are happier, calmer parents and better able to cope, plus we have money to help pay for extra therapy, riding etc, the things she loves, plus we have time for our other children who don't have SEN.

IT CAN BE DONE!

Neither of mine can access afterschool or holiday clubs. It’s just too much. I think if you’ve been with an employer for a long time you’ve aren’t good win. It’s hard when you’re starting somewhere new and need flexibility.

I have a job I love but my career tanked after having DD2. My options for progression were wiped out, I can only work very part time and as a single parent it’s bloody hard. I’m propped up financially by universal credit and DLA, and will never own my own house. It’s tough.

DD2 is older now, just started at a specialist post-16 college, and it has got a bit easier. She went to special school for seniors (was at mainstream with a lot of support for primary) and I can’t imagine having to home school her. Her going to school is my respite, she’s currently having to self isolate for 2 weeks and I’m finding it really hard.

I have amazing employers who are really sympathetic to my situation and allow me flexibility, but I can’t deny I’m not not remotely in the same place career wise I would have been if DD didn’t have her complex SN.

I’m hoping like a PP for DD to access residential college, then supported living. I can then work full time and ramp up my income and so pension contributions.

I would think long and hard about homeschooling. 24/7 with a child with complex needs is enough to break you. Explore respite options, childcare options, paid support. Get your Children’s SEND team on board.

Sadly I think if you put 100% in to your child it can be to the detriment of your career and your marriage. Finding a healthy balance is really hard.

I hate to tell you this but DS is 16 and we are curry having a real struggle with him his mental heth, refusal to take medication, mock exams and school. We have had so many melt downs that both DH and I are unable to work at the moment. It is not like this all the time but intermittently it has been over lockdown. We have had to collect him from school on average 1-2 a weeks. We have meetings with school every week ( in a school day) . He is currently supposed to be doing his mocks at home so we are sorting this out but getting him to do this takes most of the day . i know it would have been much worse when he was younger and it is just about ok now if we let him have limited time on screens and accept that he won't do any work at all at home and wont sit his mocks but I have not been able to focus on a career in the last 16 yeast. I work in a lowish pressure environment ( university admin) on 50% of the salary I had when DS was born 16 years ago but I am considering giving it up because it is ( and was before lockdown) becoming unmanageable..

Lockdown helped at first as work for us work slowed down for the first 3-4months and I could do school meetings , pickups, CAMHS meetings,dealing with shouting, breaking things, self harming on a regular basis and all the miriad of paperwork to do with DSs needs but now work is busier I am really struggling.

Currently not curry!

Does anyone here take it in turns with careers with their partner? I realise this is also very career limiting but it seems fairer than putting all the financial burden on over parent and the challenges of being the primary care giver on the other.