Developmental delays and work/career

[Firsttimer7259]

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!!

I work from home, I have no family close so other work would be a no. I did work with my HFA child as he was able to use regular school holiday clubs along with my daughters. My youngest is in a special school and while they offer respite during holidays not enough to cover work and paid childcare would need to be 1:1. Friends have always offered but I know this would strain friendships and not be longterm. So I earn some money but not as much but tbh it works for us.

I'd be interested in this too. My ds is 2 and has asd, was wondering when would be a good time to go back, even if only part time.

Well, my ds condition took over my life to a large extent, but I have been able to work and retrospectively would say it's easier to have someone to look after them when they are younger and needs are more physical. Later, you not only get involved into education/physio etc but also various battles with the system to get them what they need.
So, for now, I'd say, go for it if you can! It might not be easy now, but it will be harder later. With a good nanny you should be OK, my ds was with a family/childminder/after-school club over the years, it took fair bit of juggling too. You can always re-consider later on :)

Very topical for me! I took a career break then returned part time to my public sector job. I do a few hours a week during term time. I have not been in since term started as Ds has been ill. Employer has been ok so far as i have leave i can use but not for much longer!

I consider that we have done well to manage so far - but am wondering it is crunch time.

squidworth can you tell me what HFA is?
Thanks for responses, please keep more coming.

I had put D down for full time nursery spot. But this work may mean me being away over the week -so now I think nanny would be better. (tho expensive) I am worried being in a group setting full time will be too hard for her, she cant communicate much yet.

Really interesting what you said nightcat I had planned to do some work further away once she was much older but right now it seems like it would give me the career boost I need to be able to secure something more parttime for when she's older.
Shes lovely and friendly at the moment, really confident, goes up to other children smiling and eager to make contact even though she cant talk or gesture. I am scared of losing that or having her all stressed and sad cos I am not around enough.

I typed a response to this but then my computer crashed. My DS has CP and breathing issues (caused by prematurity) he is 18 months old, 15 ish months corrected.

I work full time, and manage ok. My DH also works full time. In part we can do this because neither of us works more than 10 minutes away from home and DS' nursery (who are excellent) and as such we can drop him, and pick him up from hospital appointments and then go into work. I think we have about 60-90 mins in hospital a week, plus about 30 mins travelling to and from hosptial waiting etc, (large teaching hospital with physio, cdc etc is 1.5 miles away). However it only works because:

1. I am technically self employed (a partnership) and very senior in my job. My clients care that stuff gets done, but not where I am when I do it. My blackberry is my friend, and my team are very good when I delegate to them - which is part of my job generally. I often check stuff at odd hours of day and night but its fine for me and everyone knows I will get the work done

1. My partnership are very understanding, if I am not in so long as they know when I'll be back its fine, that's just like seeing a client out of the office normally. They told me not to worry about time out for appointments etc - so I don't

1. I get 30 days paid holiday plus bank holidays so have time to cover illness etc

1. DH job is very flexible too, he picks up so I can always work later

1. Ds disabilities are very physical/medical rather than behavioural which means I can leave him with others frineds babysitters etc if I need to

1. Nursery is excellent, and have 10 hours 1-1 funding to help with making sure DS gets his daily physio etc

1. When everything goes wrong both my parents are young enough and near enough to help out in an emergency - so they cover illness etc when its a day or two so I don'tt use holiday etc for that.

1. I really really enjoy my job. It gives me soemthing to do which I am good at, and means I don't worry if I need to pay for extra therapy etc (8 weeks later no DLA decision yet!)

I work full time so does DH. It has always worked out alright for us so far aside from me needing to use up most of my holiday for appointments etc. I do have a very understanding employer and extremely understanding and support family on both sides. Things are starting to be a little different now though. DS 5 (NT) has just started school. DD 4 (ASD) was also supposed to start school this year but things haven't worked out that way. So she is currently in part time mainstream nursery which they had both been attending. It is getting to be a struggle for our families to manage all the different drop offs and pick ups on different sides of town. It has only been 2 weeks and things are getting very tense between all of us. I have to admit it has started to cross our minds whether one of us should make a change in our careers to do something where we can be more in control of the hours we work. At the moment we are still torn between mainstream and special school, although the more we think about it the more we think she won't cope with mainstream. Our ds's school is lovely and I think they would be very accommodating if we were to send her there but I'm not sure if this would be enough. So if she goes to special school we will still have this issue then as she will not be able to use transport. The relatives are already struggling with picking her up because it's not the usual routine and she is climbing out of her car seat again.

Oh dear, seems I've gone off on one again. Sorry, this subject has been on my mind for a fair while now and I don't think it is going to go away.

I do have to say though that, as selfish as it sounds, it is good to spend time in the real world with adults that are not just the people you deal with regarding your child's SN. Also, for me being able to enjoy a cup of coffee in the morning without it being spilled and going for a wee without anyone watching over me would be quite hard to give up. I say do it while you can for as long as you can but be aware that things may change further down the line.

I work around 25 hours a week but am lucky to have a flexible employer for appts and some school pick ups etc. My dh works locally so can do morning drop offs. At the moment we manage with a very lovely childmider who will have ds (GDD and ASD) in the school holidays and 2 days after school. She has known him since he was a baby. I'm not sure if many other childminders would take him on lovely tho he is. Sometimes it is very hard to juggle but I know it is not going to get easier so am trying to tough it out and make money now while I can.

it can be fine as long as you have a nanny - that way you can delegate 'routine' therapy appointments and ensure any ongoing therapies/ exercises are built into the day. you will need to take time off for out of the ordinary or more specific med appts though.

dd2 also went to nursery/ pre-school (she's the youngest ofthree) but i needed a ft nanny to make sure everything else was made as stress-free as possible. we've tried a variety of childminders/ after-school care etc over the years and i have to say it is way more stressful (esp with more than 1 dc).

nanny also means you can pick and choose any after-school activities that may be beneficial, can cope with childhood ailments with no disruption to your work pattern, and don't have to piece together school holiday care.

it is of course possible to go back to work with an sn child with no nanny, but it is far more stressful (and that's supposing you manage to find an appropriate setting). and scheduling med appts etc is a nightmare.

and it is much easier to find care for a young child with sn than an older one. usually.

DS was in nursery 3 days a week from 6 months until he started school, and I crammed a large amount of work into my 'days off'. I took redundancy just before he started school, which co-incided with his DX but I'd always thought that we would have to change our approach when he started school anyway. So I now freelance from home. I earn about half of my previous salary, but we haven't paid a penny in childcare since I left my job.

My husband has always travelled and that has ramped up recently. Plus I took a decision early on that after school club would be too much for him right now. (DS not DH ) So I would say that the way I work now is at least as much to do with circumstances as it is to do with DS SEN.

Madwoman - while I would love a FT nanny I've read that you'd need to be earning £50k plus a year to make it worthwhile after tax, travel etc for you and NI for nanny.

Not yet an option for me but kudos to you

I work around 20h/wk and have DD1 (3.7 with dev delay and s&l issues) and also DD1 (almost 1). I spread my 20hours over 4 mornings and so far things are going ok-ish. it is hard at times but being at home most afternoons helps with DD1's various appointments (paed & salt). not sure how things will work out once she starts school next year. DH is working long hours and can't really help and we have no family near by - so I am shouldering everything atm. but to be honest - going to work really helps me to stay sane and to have some adult company which is not related to DD1's SN dois me good. working really gives me a break fromhome end DC and I find it strangely relaxing

This is really great. Really helpful and reassuring to see how you have managed to combine work and caring for a child who needs a bit extra. Makes me feel that its possible and not neglectful of me. I think I really need to get back into work. I like work and it makes me feel good about myself. Also I get nervous about our precarious finances. Not that they will be much less precarious after we've paid for childcare but in a few years this will pay off. I think that if I stay out of work much longer it will be really difficult to get a job at the kind of level I would like.

I definitely want to keep a substantial amount of nanny time if I am working away from home. My daughter isnt speaking or pointing yet and I thnk being outside a one to one setting will be hard for her. Oh god, everytime I think about that I wibble. I so badly want to look after her to the absolute best and keep her happy and well. But I think we as a family will suffer long term if I cant get back into satisfying work. I actually dont think that me being at home full time would be good either as I cant cope with it. Looking after her is hard work and I am hard on myself when I feel I am not doing it as well as she needs (I am not sure any one person could do that but..)

I understand the wibbles! But I think you have to take a long-term view. As you say, in a few years this will pay off work-wise. And in a few years your DD will have grown, developed and improved (although I hate that word in this context, but you know what I mean.) Someone on here once said 'our kids are delayed - not stuck. They will still continue to develop, grow up, learn, speak, etc.

After all, you are working for DD's future, the same as any other working parent is. It's just harder to set it all up, is all. (All! at self...)

Thanks. I just feel tears rising every time I think of it. I feel like I want to be able to keep an eye on her, have enough time to observe and think through whats happening to her and work out how to intervene if its needed. Will I have enough of that if I am working full time? Clearly not, but our nanny is switched on, the nursery has experience and enthusiasm for children with additional needs/autism/downs - and my husband can take up the reins some more. But god I always feel like the buck stops with me. That responsibility is mine and I dont want to let her down.

Its stupid of me because at the same time I think I am obsessing about this, I am making myself over-responsible over something I cant control the outcome of. Plus I am really keen on my H doing a bit more - hes going to do the Hanen course and I am delighted at the thought of him saying to me: 'no not like that like this' and directing me on how best to interact or developing new games or routine. But I am so scared...

Wise words Wilson! I too sometimes think I should work less or not at all and then I'd do more with ds. But if I'm honest Im not sure I would do much more with him than the childminder.
It's about the balance tho - my job is very demanding and with lots of deadlines and I often work till midnight to catch up. We'd all be happier if I could get something less stressy but then it would pay less I guess (sigh)

I think I am going to write down WilsonFricketts words that I am working for my DDs future and remind myself of that constantly.

Hello I work full time and have DS nearly 4 ASD. DS has one to one in Mainstream nursery in afternoon and is at specilaist placement 5 mornings. It works quite well except that most holidays are used up for appointments and sorting out statement etc all done via e-mail. I am single Mum so only have myself to rely on to pay the bills!! Getting support at nursery also took some time and can be stressful getting the right help in place

Hats off to you mompa!

The key for us was finding a good nursery who understood our DD's needs and my boss being understanding and supportive.

I reduced my hours from 35 to 21 (Mon-Wed). DD who has development delay (due to a neuromuscular condition) started the nursery when she was 16 months. I didn't think that would be possible because of the amount of appointments and therapies she attended. However, the nursery have been great and let the physio, SALT, OT and home visiting teacher see my DD at nursery and do her therapies there when they have to. They also helped raise money to buy her equipment for nursery (chair and standing frame)

It was hard at the begining because we had so many hospital appointments but we try to keep appointments to Thursday or Fridays (my days off) now or I have flexi time which I use. Also my DD get's a lot of chest infections so my work have been great letting me go if the nursery calls to say DD is ill.

My DD has just turned 2 now and will be getting a place at a SN nursery which I'm a bit sad about because I love her current nursery.

It can work but it's hard at times.
x

One comment I would add is that personally I think I am better with my son because he is in nursery. They do some of the physio etc there so we have more time to play (although swings etc are also recommended by his physio) the physio also goes into nursery to see them and DS there some of the time. I also find it immensely reassuring when I am worried as they will say - yes thats delayed - cp etc, but no that's fine relax abotu some of the other issues I would otherwise ge stressed about And DS is spurred on by the other children. But it is hard and it really helps to have a good nursery and a good employer.

As I said before I also really enjoy my job, which in turn makes me really enjoy the time i am with my son

i've never earned over 50k, honest

i was very lucky that the employer contributed substantially to my childcare though - one of those 'like rocking horse shit' scenarios - unfortunately i don't work there any more as we moved o'seas. so i'm currently looking for a job that fits but it was perfect when the dcs were small.

i'm pondering freelance myself now, dh still has a lengthy commute and although i could trek into the city, we might as well just move again if i was going to do that. we deliberately chose to move here because of the lifestyle and the opportunities for dd2 - so it's totally all about balance, yy.

(that sounds really pompous - 'lifestyle' - it's just outdoorsy and a bit green, and beautiful, and the opportunities for dd2 and the other two kids are phenomenal. we're stony broke as a result, mind, but it was a choice!)

WilsonFrickett

I think you have got it completely wrong.

"But I think you have to take a long-term view. As you say, in a few years this will pay off work-wise. And in a few years your DD will have grown, developed and improved (although I hate that word in this context, but you know what I mean.) Someone on here once said 'our kids are delayed - not stuck. They will still continue to develop, grow up, learn, speak, etc."

These are life long disabilities, especially if not grown out of by the age of 7 - 8 years of age.

Our children become adults with the same problems, as most have cognitive or motor issues which are not stop becoming developmental issues after 8 years of age.

So long term we need life long support, which goes past the school years.

And the problems cause by the use of outside help is that these paid helpers are only temporary and will never have the full understanding of the real issues our children experience on a daily basis, and our children are not the best able to self advocate with each new paid helper.

I have one of these disabilities which you would love me to grow out of, and having to explain my differences to all new to me, is real pain, and exhausting. So all parents of SEN children need to be their childrens primary source of care, to provide the consistant levels of support they need.

you can be the primary source of care/ emotional support and provision, without being omnipresent. please don't fall into the trap of suggesting that working parents are somehow failing their sn children, dolfrog. there's enough guilt around parenthood as it is, particularly wrt sn children.