Please or to access all these features

SN children

Here are some suggested organisations that offer expert advice on special needs.

Developmental delays and work/career

58 replies

Firsttimer7259 · 20/09/2011 14:02

I wanted to ask who works in paid employment and how well that works for you in terms of looking after a child with additional needs or SN. Genuine interest in all sorts of combinations and it would be helpful to know how much extra help and support your child needs. How much can your partner or family provide extra support.
We are just starting out. Our daughter has GDD, shes 18 months. She's a really happy bunny at the moment and quite adaptable. We have a nanny while I am doing a couple of months consultancy. But I have a job interview coming up and I really dont know if it will be too much, or maybe it will be good because it will take some of my focus off her.
So tell me if you can what worked for you, what didn't. What you find you need to think about when combining your childs' needs with the world of (paid) work. I must say that just at the moment I find doing work other than childcare work deeply relaxing!!

OP posts:
anonandlikeit · 21/09/2011 21:59

i work 20hrs & tbh its the only thing thats kept me sane.
It only works if both you & your employer are able to be flexible & a little give & take iykwim.

He is 9 now & I work school hours only so am always there for school drop off & pick up.
When he was younger I worked a couple of days & used a childminder.

I do a slightly different role that offers me more flexibility, before ds2 I had a small team working for me but I found I couldnt be there the hours that they needed me to be there & it wasnt working for the business & i felt guilty.
Now i dont have anyone relying on me to be there at certain times so as long as i manage my own workload effectively everyones happy, i even managed to worked from home for some of the school holidays.

I do have a very very lovely boss!
ds2 has autism, mild CP & learning difficulties.

dolfrog · 21/09/2011 22:39

nightcat sent a pm

Firsttimer7259 · 22/09/2011 09:44

Hi dolfrog I guess what you say is something I am afraid of. That my child's delays will turn out to be a lifelong disability. I am sorry, but I am afraid because I dont know what that really means or how I will respond to that.

What I took from WilsonFrickett however is that she wont always be as dependent on me as she is now. She may still need additional help and support and that may be more tricky than with a typical child and she will need more input from me in terms of time and thought. But its not always going to be like it is now and that taking a job that in the long run will give me flexibility and good pay will help us all because it means I will have more space in which to advocate for her once we start school or more money to pay for additional interventions once we actually know what these might be.

Right now I feel massively worried and guilty because I would like to work, I am exhausted by caring for her (and actually think that others do a better job even if thats just because they only have to do it for a few hours a day). I think my ego needs something I can do well for a bit. But I also dont want to neglect her, or leave her to fend for herself when she is clearly not yet able to do this.

What I find wise about what wilsonfrickett said is realising that work might actually add to the resources I have available for my daughter instead of thinking that by working all I am doing is taking mummy away from her. Its not just the money, its also my confidence and my ability to engage with other adults. I find a lot of that is unraveling for me at home. I am going to need it once she starts school etc.

Sorry such an essay but I am having such a tough time thinking my way through this and how I feel. In part something thats difficult is that I find myself at a loss to think through how things will progress, will she be talking by 2, by 3? How will she cope with school? Mainstream or specialist? What kind of help will there be for us and how effective is any of it? Whats the imoact gong to be on her self esteem and what could I do to help. I cant even really think about it because we have no idea what is wrong, if anything. I am not even sure whether its still possible that there is nothing wrong.

OP posts:
Firsttimer7259 · 22/09/2011 09:47

Erm, something was up with my computer and all I had seen was dolfrogs initial post, whcih the above was a response to. I havent yet read the huge discussion after.

OP posts:
Firsttimer7259 · 22/09/2011 10:09

OK, I am not going to get into the working mum, stay at home wars.

BUT I would like to know how you planned things for your family, what worked and why and what didnt, even what you regret. So please keep posting about your experiences.

agnesdi something you said really resonated with me. When my daughter was first diagnosed I switched into analytical mode. Constantly analysing her behaviour, testing what she did and did not understand. It freaked her out and I realised over time that I needed primarily to be her mother. She needs me to mother her not to be her pead/physio/salt etc.

OP posts:
hildathebuilder · 22/09/2011 10:49

FirstTimer I agree entirely about what she needs is for you to be her mother. Someone I met due to DS's CP once told me that most adults with CP do not wish that theirprents had spent more time doing physio/therapy etc. They wanted their parents to be parents.

And you can get others to cover physio/salt etc if you get good help, and in my experience work is what keeps me sane, happy and anjoying DS rather than on a constant watch fo what is wrong. But we all have different skills and abilities, as well as desires for our families, and everyone's decision is a valid one.

madwomanintheattic · 22/09/2011 17:21

that's exactly the point, hilda. everyone's decision is a valid one.

apols for getting wound up by dolfrog - it was really a defensive mechanism as i didn't want your decision to be in any way affected by criticism of working parents - there's enough of that in rl, even for mothers of nt children. and it seemed as though dolfrog had swallowed the ridiculous notion that sn parents are in some way special, and if we aren't, we need to work extraordinarily hard to get that way, with a good heap of guilt thrown on top.

as far as my personal experience goes, i kicked off with nanny's upthread as it was mentioned in the op, and because it was by the far the most practical 'gold standard' solution, but of course there are financial implications.

i've pretty much been through most work/ care combinations. dd2 has cerebral palsy (we were told she wouldn't walk or talk v early etc, although she now does) and is the youngest of three - so as well as childcare for her, we've had to take into account her older siblings.

i mostly sahmed for the first two years of her life (in that i worked weekends away from home, when dh could have the kids), and have since been through most options! i don't have a 'career' per se. we travel a lot with dh's work and so i have to be quite opportunistic as far as my own work - so sometimes i get the opportunity to do a 6mo ft contract, sometimes i've worked pt for a couple of years, sometimes i've combined study and a couple of jobs etc etc. however, when working ft, the nanny solution provides the stability for the kids and the flexibility that their schedules (inc therapy appts etc etc) demand. i've also used ft nursery for dd2 (8am-6pm) and then school and after-school club (she was funded 1-1 support for the after-school club by the lea as she was statemented with ft 1-1 in school). the other kids have used after-school clubs and child minders. just recently i've started looking for a childminder that will take them all as we've moved and i'm job hunting again. Grin it's my judgement that she can cope with a childminder now - the one we trialled last week has a house full of snakes, turtles, and frogs. dd2 was enthralled and spent about an hour watching a turtle.

as well as working, i've found that parents of kids with sn often have the greatest impact on service provision, and so by default you can become a disability rights activist... often the only people to kick off new provision are parents themselves - and so it's a case of 'if i don't do it, no-one will', and so the demands on your time increase. you then aren't doing it just for your child, but for the rest of the kids that might benefit from accessing the service.

ultimately, you have to look at your own circumstances and judge what's right for your family. and money does have to come into it at some point. and whilst i agree absolutely that the majority of society should be taxed and fund the most vulnerable, it is your personal decision whether this would be the right choice for your family (in terms of both income, and care needs).

dd2 has loved and adored her carers - we've employed two nannys at different times, and the nursery staff were brilliant. in fact, i did have to ask nursery to remind the 1-1 that she was there to facilitate dd2's independence and help her access the activities, rather than provide such a comfortable cushion that she was sheltered from her peer group. Grin because we move so often, she changes both therapists and school etc every year or two, so as her parents we are the constant source of love and support anyway. whilst she might make strong bonds with 'outside' care, they are there as facilitators, not parenting her.

so again, it's all very personal. but don't base your decision on my rambling , or anyone else's Grin.

no decision is set in stone - flexibility is the key. if you go back to work for a year, or six months, or even three, and decide it isn't working for your family, then that's a decision you can make then. or if you feel you need to give it another year and spend a bit more time at home, then that's ok too. no right or wrong answer at all. and no need to try and make lifelong plans - everyone's situation changes as we chug along.

what does dp/dh think? don't forget that it's possible that s/he might be able to alter their own work arrangements to take on more of the caring role. (as i said, for the first couple of years - and indeed later on - i worked weekends and left the kids with dh for days on end Grin)

and again, apols for the earlier rants - i find 50yo men often like to tell younger women that their place is in the home, regardless of sn and context, and perhaps judged dolfrog's intentions incorrectly.

but don't let anyone tell you you're special! and never feel guilty for being an ordinary mum trying to do the best for her family! it's all any of us can do. Smile

madwomanintheattic · 22/09/2011 17:21

god, that was long and boring. i'm going now, honest. Grin

New posts on this thread. Refresh page