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!!

madwomanintheattic

I am not falling into to any trap, just from my own life long experience of having one of these disabilities, and the need to be understood, understanding can not be delegated and paid for, and many parents even my own had no understanding of my real disability, and the problems I have had to face everyday of my life. The problems are complex, and ongoing. And if as a parent you are not there when you are most needed, no paid help is optional substitute.
So may be there should be a choice made to either have children or have a career, bacuase in many instances having both is not an option when you have SEN children.
This is not a guilt thing, or a blame game, this about meeting your childs parental needs which can not be delegated to others, who do not share your childs genetic make up and therefore have no real bond with their needs.

you can parent and work, dolfrog.

just because you delegate some 9-5 childcare doesn't mean you opt out of understanding, empathy, love and support for your children, sn or not. and i totally resent the implication that it does. whatever your personal circumstances.

it's interesting how your view tallies with the money-saving requirements of the government though. and completely ignores the poverty trap that many of those with disabilities and their families are stuck in. and ignores the fact that some parents need time outside of 24/7 care responsibilities to prepare themselves for the night care shift, and to retain the sanity required to do so. there is no right or wrong in this game - parents do whatever they need to to provide for their children. some choose to work, and some choose not to. i'm not judging either way - everyone has to decide for themselves.

parents of sn children are ordinary people, not martyrs. and not 'special' in any way.

i'm quite sad that you feel that 'paid' carers can't make real and lasting attachments to the children in their care though tbh. i've lost count of the number of people that have wept uncontrollably saying goodbye to dd2 when we've had to move on. i would dispute the 'no real bond' thing entirely.

'so maybe there should be a choice made to have children or have a career' oh ffs. the sad thing is, i know you're not a troll. and i know you make valued contributions to the sn board.

but really, really, that argument belongs in the 1950s. every individual needs to make up their own mind what is best for their family, and their children, sn or not. at least you haven't mentioned that caring is the mother's responsibility. i remain eternally grateful for that.

and those priorites can change over time. nothing is set in stone.

dolfrog I worded that part of my post insensitively, for which I apologise. The OPs child has GDD, which is similar to my DS condition, and he does continue to develop, as will the OPs. That's what the 'our kids' referred to. I didn't mean that his problems will magically disappear, but the level of help he needs will change. Of course that isn't the same with every disability and I apologise for any offence.

However, I would absolutely say that working does not prevent you from offering 'life long support'. And if my DS does need life long support, well, while he's at school is going to be the only time I can work, isn't it? And actually, I resent the implication that working doesn't make me my son's primary source of care. That's just wrong.

madwomanintheattic

you seem to represent the materialistic approach of this government, and not considering that to pay for the support needs familes like ours need there needs to be higher taxes to pay fo0r more inclusive support for the most needy, so that one parent is always at home for children until they are able to lead independent lives. Not all are able to achieve this and will require life long support which should be provided by the "Big Society" which is the current terminology. And the Big Society can not be provided by volunteers but needs to be provided by Central Government via taxation.

The provision of care is a community responsibility which has long been lost as the extended family disappeared, and we stopped living in communities small enough to have shared community responsibilities, such is the nature or urbanisation, and increased isolation.

The issue of poor parents who have SN children is about the lack of understanding and political willingness to provide the funding and support required, and bot challenging the politician at elections about how they will help and provide support those who share our disabilities, to make these issues a main issue in their manifestos, and be prepared to pay more taxes to provide the support needed by those least able top help themselves.

If you have SN children you have to become special so that you are best able to understand their needs, provide the support they need, and advocate for this needs in society. So parents will have to explain their needs to their future partners, their future partners parents, etc which can not be passed on to a paid carer.

So what happens when your child want to express their feelings 9 - 5 when you are not there, so they have to retain all that emotion until you get home or when you have had time to unwind from work. You seem to put your childs needs second to your career needs and that is your personal conflict, and you will have to eventual explain to your child why you were not there when they needed you.

I am now in my 50s and still wonder why my parents were not there when I needed them. Why they did not understand my support needs. So will your child have the same questions, and will your child still have access to their paid carer to ask why they were not able to provide the support they needed.

dolfrog. I understand that your are speaking from experience, but does it not depend on the child's specific need?

er, dolfrog. i'm a sahm.

there's feck all chance of me not being here when my kids needs me, sn or otherwise. i have worked though. and still managed to fulfil my parental responsibilities - amazing! i'm a human being capable of looking at my own personal circumstances and judging what is best for my own family. (you seem to be doing a pretty good job of imparting your wisdom about what is best for everyone else's family, when you are absolutely ignorant of other people's circumstances)

it's nice of you to share your view though. i suspect it has been coloured by your unfortunate belief that you were let down by your own parents. this is a pretty run-of-the-mill view, (whether you have a disability or otherwise, and whether your parents worked or otherwise) and is probably part of the normal growing-up process. you know, the bit where we are determined not to make the mistakes our own parents made (in our opinion). i gather there is valuable counselling available for those people who do have longstanding mh issues as a result of their upbringing.

can you tell me how your parents choices influenced your own parenting decisions? did you make it part of your marital contract that your wife agreed never to work? i vaguely recall that your own disability might be a genetic condition (apologies if i'm mistaken) - did you decide not to have children as a result? or resolve to not have a career/ job yourself because your children may or not inherit a condition/ have a totally unrelated sn? because of your heartfelt belief that you personally must be available for them 24/7 (even when they are at school?!)

i find your comments on working parents absolutely intolerable, with a whiff of 'daddy knows best'.

and fwiw, any accusation of materialism is so far off the mark it's frankly laughable. i'm a compulsive volunteer with no earned income, save that of dh (which officially puts us into the 'eligible for community housing' bracket.)

just call me maggie, right enough.

apparently not, mango. if you have an sn child, you must not work. ever. heaven forbid you might feel capable of making that decision yourself, dolfrog has forbidden it.

There is no one answer to this as GDD can mean a child who can be supported in ordinary childcare settings, or it can mean - as in my case - a child who most certainly cannot be supported unless he has a tailored 1:1, or 2:1 in some cases.

My DS's needs are extremely high and have got higher and higher the older he gets. Yes, he has developed and never plateaued, but his behaviour has become more and more challenging and his sleep is dreadful.

I could never hold down a full-time job unless he went into full-time care. I know another mother who kept her full-time job while her children went into the care of the local authority.

Your child sounds very easy-going, so if you want to work, then do. It can only be your decision and judgement

madwomanintheattic

I have not forbidden anything, you seem to have some very strange ideas, of life outside of your own experience.

You seem not want your own way all the time and ignore the rights of children. There is a nothing wrong with parents wishing to work, but they need to take into account the needs of their children, and if the needs of their children require them to be at home providing care and support, then that is what they should do. This may not fit with their career egos, or their ideas of their own rights and needs, or even fair.

I would suppose you also support genetic engineering and genetic cleansing of society of all who do not meet your required standards.

you're being quite ridiculous now, my darling.

just in case it's unclear - i'm not in any way advocating that all parents of all children with sn work. not in any way, shape, or form. it's a very personal decision, which i entrust to every parent of every child individually.

but thanks for your really patronising run-down of government policy/ taxation/ community, dolfrog. thankfully my social studies (dear god, i probably wasn't allowed to study for an msc either, despite there being a huge section on policies wrt illness/ disability) covered that, and having spent a number of years running charities on a voluntary basis that provided services for children and youth with disabilities, i'm more than aware of both social needs and the problems faced by the voluntary sector in replacing govt shortfall.

interestingly though, we appear to differ on provision requirements. i'm up for providing all children and young people with opportunities to get out of the house and experience the same activities and after-school/ youth groups as their nt peers, whereas you seem to be advocating the complete opposite.

perchance i was utterly wasting my time, in your view? i can assure you the parents of the participants felt otherwise (both sahm and those that worked). maybe you feel they were somehow shirking their responsibilities? i mean, they were handing over their kids to someone else for hours in some cases.

fwiw, dd2 has spent the summer in an adaptive hiking club (complete with volunteers pulling trail riders), swimming (with 1-1 volunteer support), white water rafting, and is now taking part in a riding for the disabled programme (again staffed by volunteers). in the winter she'll go back to the adaptive skiing programme (paid specialist instructors by the not-for profit organisation, but volunteer 1-1). i see kids with all sorts of disabilities taking part and challenging themselves, and have yet to see a guilt ridden parent, despite the fact that some of them, y'know, actually work.

i was at a fundraiser for the organisation last week. two olympians, two paraolympians, brain injury survivors, children with complex disabilities, VI and hearing impaired adults, non-verbal teens with asd, pretty much every sort of disability you could come up with. and their parents and carers. the organisation was started by two (working) parents of sn children, and has blossomed into an amazing facility.

parents of sn children are just like anyone else, with the same strengths and weaknesses. to attempt to limit what they are 'allowed' to do in their life is as bad as trying to limit the opportunities for children and adults with disabilities.

i'm glad you're not forbidding parents of children with sn from working - but the phrase 'may be there should be a choice made to either have children or have a career' sure sounded like that.

i think you need to look at the big picture, dolfrog.

and i'd love to hear how you've managed parenting and coped with feeling unable to work. it must have been very difficult for you - so much of our identity as a mmeber of society is tied up with what we 'do', and i'm sure as aman you feel that even more keenly.

do you feel at 50 that you have missed out on a major aspect of life (that of work) because of your child/ren with sn?

and wtf are my 'required standards'? being a human being is good enough imvho. i'm not entirely sure which tree you are barking up, now, but it ain't the one i'm picking apples from.

Some people wan't to work, some people need to work, some people don't and some can't because of their or their children's needs. Some DCs thrive in other people's care, some don't.

All children - SN and NT - have needs. Parents also have needs, some of which include putting food on the table. And FWIW I really wish I had 'become special' dolfrog but I didn't. I am just the same woman as I always was, trying to find the right balance for me, DP and DS.

The OP was asking for our experiences, which have been given to her. She knows her own child best and best of luck to her whatever she decides - best of luck to all of us as we get on with what we need to do.

Agree with how Wilson put it.

madwomanintheattic

I have never said that parents should not work, but what i have said is that children need a great deal of support which can prohibit the requirements of demanding career.
I have spent the last decade or so founding and running a voluntary organisation, to help increase the awareness of the disability which affects all of my family.
I am not trying to limit what anyone can do, that is your misinterpretation of what i have been saying.
Living with my disability i have to always see the big picture it is how i have to cope, the small details i have to leave for others.
All of our family my 3 sons and my wife all share the same disability, and for us three of whom receive adult care DLA (me on the middle rate) then having both parents working is not an option. Your situation may be different.
You are lucky to be able to go to a fundraiser, for us that is not an option too many people.

"interestingly though, we appear to differ on provision requirements. i'm up for providing all children and young people with opportunities to get out of the house and experience the same activities and after-school/ youth groups as their nt peers, whereas you seem to be advocating the complete opposite."
completely wrong your pure invention.

"fwiw, dd2 has spent the summer in an adaptive hiking club (complete with volunteers pulling trail riders), swimming (with 1-1 volunteer support), white water rafting, and is now taking part in a riding for the disabled programme (again staffed by volunteers). in the winter she'll go back to the adaptive skiing programme (paid specialist instructors by the not-for profit organisation, but volunteer 1-1). i see kids with all sorts of disabilities taking part and challenging themselves, and have yet to see a guilt ridden parent, despite the fact that some of them, y'know, actually work"
I have never said that this should not happen, it can be very helpful.

"parents of sn children are just like anyone else, with the same strengths and weaknesses. to attempt to limit what they are 'allowed' to do in their life is as bad as trying to limit the opportunities for children and adults with disabilities."

so who is limiting what anyone can do, I have never tried to limit what anyone can do.

All I have said is that parents need to meet the support needs of their children, which should take priority over their career preferences, or put another way childrens support needs should not be sacrificed for personal career goals and employers demands, and that some children can need more care than others. Some parents may have their own disabilities to overcome as well, so not all parents are able to work and they need community support, and all their contribution is in the support of their children and not to an anonymous money making organisation.

Not too sure where your coming from really

great - then we are arguing exactly the same thing, dolfrog!

and we're both right.

parents of sn children can work if they decide to.

maybe the 'career or children' comment led me to believe inadvertently you were a mysogynistic old dinosaur who had swallowed the 'sn parents are special' bollocks.

i'm glad we're in perfect agreement.

you obviously equally misread my 'own decision' point as meaning 'must work at all costs even to the detriment of their children'.

although i'm not sure how.

the fund raiser was truly brilliant. a very open facility with plenty of space (and areas of no people at all - a golf course and huge clubhouse) for those unable to cope with too many people, or those experiencing sensory overload from the lights/ noise. and plenty of experienced volunteers who were familiar with the kids/ adults who could take over to allow the parents five minutes to network. (in a provision sort of way, rather than career)

if it helps - i left the kids with a childminder so that i could focus on the event, as i knew dd2 wouldn't have been able to cope for that length of time and i knew i wanted to be able to concentrate on the event, whilst knowing she was in a safe pair of hands elsewhere.

WilsonFrickett

I would really love to have a job right now, but due to going through 6 years of Disability Discrimination in the work place with my last employer, and the post traumatic stress that can cause I doubt I will ever work again. Employers do not want to understand the nature of my disability, and are not prepared to make the accommodations i need to work again. Employers make the Schools, LEAs described on this and other forums seem like tooth fairies.

"Parents also have needs, some of which include putting food on the table"

Very true, but children who have SEN issue may require a great deal of support which means that society may need to provide that food to enable the parent to provide the support the child needs. So all I have said is that one from two parents may be required to provide the support the child requires full time.

And each child will have different support needs, so there are no one size fits all solutions. All we can do is work around our childrens needs as best we can, and for many they will be lifelong needs.

madwomanintheattic

you have to remember I have APD which means i am dyslexic and sometimes i do not always understand the meaning of things correctly , especially on fast moving threads, which is why i aways avoid contributing to the weekly Friday threads.

oh, i'm familiar with induced stress due to disability discrimination, and ended up in counselling as a result. (it wasn't employment per se, more immigration/ employment but still...)

children do grow up and go to school for 8 hours a day. and then they often leave home, even if into a residential care facility. most parents of children with life-long needs find the 'what will happen when i'm dead and can't care any more' question the hardest of all. but you can't will yourself to live so that you outlast your child, so it makes sense to make financial and appropriate provision as far as you are able. leaving it to the state to provide is often a parent's worst nightmare.

personal sacrifice is fine as far as it goes - but as you say, it isn't one-size-fits-all.

x-post

sure.

but if i'm confusing you, please ask for clarification, though - i wouldn't want to patronise you by over-simplification and you seem well able to hold your own. dd2 really hates it when people do the talking loudly and slowly thing.

The damage done to our DS1 by both primary and secondary schools meantr that he had to learn how to learn at College (further education) so instead of doing vocational courses he had to learn to develop his creative abilities, and logic skills, still has poor communication skills and has had a part time job for some years, now. DS2 has just left college, unable to complete a two year course, too much 1 to 1 support required, he has the same problems in both primary and secondary school. So he has only has the equivalant of 1 rather than 3 A'levels, hopefully the JobCentre Disability Advisor will help regarding an apprenticeship. DS3 is at a different secondary school, which is not about climbing the A'level leagues and he is getting the help and support he needs as recommended by Great Ormond Street Hospital.

Strange as it may sound, my DW and I were married 20 + years before we were both diagnosed as having the same disability, but it probably explains how and why we understood each other form the outset.

dolfrog, what job does your ds1 do? looking for inspiration for my ds..

I work half time in public sector. I used to work 70-80% in private sector which paid alot better. DS3 (ASD) has just started school and I would have expected to go back to a better paid job but have decided to stick with the easier, lesser paid job. Its more flexible (flexi time), I can shuffle days round appointments and most importantly relatively stress free.
DH works PT too but is self employed. I worked freelance for a while too. We have no family help.
What we both found is it is easier to be employed than continue to run a business round a SN child unless its a business where work comes in easily as its hard to keep the networking, business side going.
We have decided to settle for less in the early years because DS3 has ASD and this is the best chance of him making progress. He has an intensive therapy programme (in 3 places) which requires alot of driving him from a to b and we are happy to sacrifice other things for now. Our days revolve around his schedule.
We do rely on tax credits, DLA, family 'gifts' etc.
I do worry about money and the future eg pensions, uni fees for the other kids and being stone broke in old age. Earning this little was not the plan.
However I hope DS will be able to transition over the next few years into a more typical school day and we will be able to work more.
With DS he could be dependent on us forever and I suppose I see this time as an investment in that hopefully skills and progress gained now will pay off in later years in him being more independent.
Its a very individual decision. There is no special school or mainstream school which could meet DS needs locally - in other areas we would have stacks to choose from but provision for autism here is terrible.
I do think many children with autism learn so differently from other children that this makes many childcare options unsuitable - and there is a good case for delaying FT mainstream education for ASD. If he had a different disability I would not think twice about putting him in the local SS and going off to work.
I also agree that it does not have to be parents who help the child. We have a team of highly trained and experienced therapists and they do a vastly better job teaching him new things than me. I could not work with DS day in day out its exhausting. I did it for a year when we were getting his programme funded via tribunal and I was on my knees. I love that someone else works with him and I can just be his Mum. Yes I am a hands on mum and I know him best and am there emotionally, and involved in his programme, but its perfectly ok for someone else to do his language exercises etc etc and good for him too to have other people around.
I would agree that for most children its easier to use childcare in the early years (no school holidays) and as you say perhaps go part-time once go into school.
I couldn't go back to my old private sector job. Massive stress, long hours and totally inflexible employers.
The sleep deprivation doesn't help either....

I would also say I know families where both parents have had to give up work because they have more than one child with high level SN. They have a tough life, dependent on benefits / whims of politicians and terrified if the washing machine breaks or the roof leaks. Vast numbers of parent carers will end up on the minimum pension living out their years in total poverty. So I would not criticise anyone who made the choice to work. Society really does not step up to cover anything like the true cost of a child with SN and that situation is likely to get worse not better. I expect both our DLA and tax credits to get cut this year, while all our bills go up of course.

good luck with whatever you choose.