Should I give up work?

[vannie]

Hi,

 

Just wondered your thoughts on my dilemma. My 9 yr old son was diagnosed with aspergers last month. I started full time work last September. He went to a friend of mine after school who was also a child minder, he seemed to be coping and it worked very well as she understood that he might have aspergers, and had been on a childminders course on how to deal with special needs children.

 

Just before Easter it all came to a head, apparently her own son and my son had been bickering a lot, then she heard screaming and my son had his hands round her sons throat and had nearly strangled him. I agreed it better all round if I found a new childminder even though she was happy to continue having him, she still looks after him in the morning for 30 mins, but that works ok as they are not together too long to have a disagreement.

 

Anyway my sister agreed she would collect him from school, she has 9yr old girl, also 3yr old and 18 months old all girls. It worked fine until last week. My son was calling 3yr old names and generally pushing her about. My sister wasn't very happy about it and said to me it wasn't fair to her daughter, even though my son still wants to go there after school. She said she would have him but if he was in one of his moods, she wasn't happy to have him. I said I can't predict when he would be like it and therefore it wasn't practical. My original childminder has said she didn't mind trying again if I wanted to give it go.

 

My problem is I don't want him to keep being rejected, he is down on himself anyway, saying people don't like him at school and he has asked me for along time why do I have to work.

 

I just want to throw in the towel and give up work, but then there's financial side we would just about cope, and my own sanity I will be very bored at home while he is at school. I know I could compromise, but it is very hard to find an employer who allows you time off for all the appointments, which is what my employer does at the moment, but the position I have requires full time hours. I really enjoy what I do and get on very well with all my collegues, I don't think I would find a better job. What do you think I should do?

[Karen A]

Hi vannie.

I do not know what you should do.But I thought I would say I have not worked more than a few hours a week since I had J who is 13.I gave up working all together when Ben was being assessed for ASD.There are things that I miss desperately despite not regreting my decision.

I miss the adult contact,financial independence,the challenge of work,the mental challenge and I have found that school consider me to be available at all times whereas they would never dream of phoning a parent at work to ask them to bring some lipsalve. Karen.

[bid]

I wasn't able to work until my son went to a residential special school at 15.

 

I'm lucky in that I have found a whole new career (I work at another residential special school! ).

 

Could you look at a part-time job perhaps?

 

Bid

[lynne]

 

 

 

I do not know any mothers with children with ASD or Aspergers who are able to work full time, be successful in the work area and provide everything that there child needs with out causing your child more difficulty.

 

Some people like my self work part time but even this is difficult, especially during holidays.

 

Could you not reduce your hours or do flexi hours which would mean you are home in the holidays.

 

 

Although our special needs children should have access to holiday clubs etc in reality it does not work long term. Unfortunately if you work you need long term support for your child.

[Suze]

Hi , I would try and find a childminder who does,nt have any other kids.You might find an older person, grandparent type iyswim would work better for you and your son.My boy just needs to chill and veg the moment he gets in from school.His siblings understand this and leave well alone.But not every child will and having other kids about maybe just winding your boy up, when really he needs peace and quiet.Hope this helps.

[chris54]

I use to be a childminder but felt I had to give it up as there was more and more conflict between my son and the children I cared for.

I am and have always been my sons main carer.

I now work nights mainly so I can be around to take my son to and from school and generally be around in the day when needed. My wife, his mum is disabled, now that he is older and dose not need the sort of care, lifting and carrying, that he needed when younger, she is able to "babysit" but cannot do school runs and at times find him to demanding.

 

Before I started night work I was self employed squeezing in work when he was at school.

 

[chris54]

Hi , I would try and find a childminder who does,nt have any other kids.You might find an older person, grandparent type iyswim would work better for you and your son.

 

The problem you have now is that because of the amount of regulations, If you are going to do childminding you really need to do it as a proper business or it is just not worth doing.

[hsmum]

I do not know any mothers with children with ASD or Aspergers who are able to work full time, be successful in the work area and provide everything that there child needs with out causing your child more difficulty.

 

Some people like my self work part time but even this is difficult, especially during holidays.

 

Could you not reduce your hours or do flexi hours which would mean you are home in the holidays.

 

 

Although our special needs children should have access to holiday clubs etc in reality it does not work long term. Unfortunately if you work you need long term support for your child.

 

Hello,

 

I really do sympathise with this situation. It is difficult to find adequate child care and it is hell trying to balance work with the stress and uncertainty that comes with having children on the spectrum. However, I work full time and have done since my youngest was five months old; it is my husband who stays at home. My husband has the stress of dealing with some very challenging behavioural issues and managing school related issues. I have to cope with extreme tiredness, guilt and the task of boosting my husband's self esteem (he finds the whole situation difficult to cope with). The situation is not ideal, but I do believe it gets better as the children get older.

[bid]

Just to add that if you do decide to stop working outside the home, as I did for 12 years, you can still boost your CV for the future.

 

When I was at home, I still got involved with our local charity for families with SN children, working on the committee that took it to charitable status, plus I was roped into becoming a Brownie Guider

 

All these things help to give you a sense of identity, and can be useful when you are able to re-enter the workplace.

 

Good luck whatever you decide.

 

Bid

[Karen A]

Just to add that if you do decide to stop working outside the home, as I did for 12 years, you can still boost your CV for the future.

 

When I was at home, I still got involved with our local charity for families with SN children, working on the committee that took it to charitable status, plus I was roped into becoming a Brownie Guider

 

All these things help to give you a sense of identity, and can be useful when you are able to re-enter the workplace.

 

Good luck whatever you decide.

 

Bid

 

Thanks Bid.

I have been wondering what to do in September when Ben starts at Secondary.It is great to get ideas from those who have been there and done it.Karen.

 

[vannie]

Hi,

 

Thanks for all your advice, I think I've decided what to do. I've really known all along that I wouldn't be able to keep a full time job and look after my son.

 

I will ask my current employer if they can reduce my hours, if not then look for something part time.

 

It really has helped hearing from people who do have an understanding of how I am feeling.

 

Everyone at work just say who's the parent here, and they just can't grasp, no matter how much you explain, that it is a completely different ball game with these children.

 

Thanks very much.

[NobbyNobbs]

I do not know any mothers with children with ASD or Aspergers who are able to work full time, be successful in the work area and provide everything that there child needs with out causing your child more difficulty.

my parents both worked VERY long hours (mother 42 hour week, father 50+hours (self employed)). i am absolutely fine, and i feel, better off for having to socialise with other children. ASD childlren still need to learn social rules if they are ever going to have any form of independent life, just because its hard doesn't mean you can hide from it!

 

i suggest you find a 'professional' child minder, rather than a family friend as they will be less likely to give up, and will be more professional about the care they give your child.

 

EDIT - i didn't mean that to sound harsh. i just mean that a family friend will view childminding your child as 'optional' wheras a professional would see it as their job

Edited May 28, 2009 by NobbyNobbs

[Sally44]

I was in the middle of a degree course. I had passed all my course work with flying colours. Then I had the hospital placement for 11 weeks (amputations ward ), during my sons initial assessments for ASD. Needless to say I failed my placement. That totally destroyed my self esteem for nearly a year!

But, to be honest, once the diagnosis came, then there was the work towards a Statement, then there was going to tribunal. It has taken nearly 4.5 years to get to where we are now and I feel like I can finally hang up the boxing gloves .

My husband was also a manager of a large supermarket chain. He also gave up his job and took a position as a school cook. That meant he had all the school holidays off.

Then we rented some land locally, as well as two allotment plots. Now we have about 150 chickens, 35 ducks, 17 goats, 8 sheep and 2 cows. We sell the eggs from the doorstep to pay for all the animals food. So we get most of our food (vegetables, meat, eggs, milk, cheese etc) for free. We also put up a tent in the field during the school holidays for cheap camping holidays.

We made sure we were claiming all the benefits for my son such as DLA. I already get Incapacity Benefit, but you can get Carers Allowance if you are not on IB. So basically we survive on one part time wage.

So, financially it can be done. And I think that many families have to take a totally different look and approach to family life when they have a special needs child. Of course it does depend on the child. But the stress on everyone when things are not going well is not healthy for the child or the rest of the family.

I do miss working sometimes and I miss the adult contact. But I manage to get that in other ways. We have regular allotment parties and bar-b-ques where we sample our home made wine

In the future I may try some volunteering in the school or something similar.

As suggested, it might be better getting some professional childminding, especially if your boss will accept flexi hours and a small reduction in hours. Then you might be able to get away with taking your child to a breakfast club before school, and then being able to collect him at home time.

Hope you find a solution that works for all of you. <'> <'>

[cmuir]

Hi

 

Sadly, it seems that blood isn't always thicker than water. I'm discovering that my niece and nephew think my son is a spoilt brat, etc, etc. I had hoped that if we don't get acceptance from outsiders, that we'd at least get it from our own family. Very difficult, so I sympathise.

 

Is there an after school club? If so, in Scotland (my guess is that there is an equivalent English organisation), Capability Scotland, for example, in theory are able to provide someone to cover eg playschemes, etc. The cost (not the full cost) is usually paid for by the parent (are you in receipt of DLA?). Cost may also be met from SS - do you have a section 23 social work assessment? If not, it would be an idea to get one (granted, easier said than done) as it is a document which aims to identify the needs of the child and the family. Respite is something that can identified and could be arranged.

 

With regards to working hours, you do have automatic entitlements to flexible working because you have a child that has special needs.

 

Check out the following websites:

 

http://www.direct.gov.uk/en/Employment/Emp...Off/DG_10029491

 

http://www.workingfamilies.org.uk/

 

Best wishes.

 

Caroline.

Edited May 28, 2009 by cmuir

[dooday24]

hi i havnt got any advice sorry xxxx

i work 29.5 hrs a week looking after adults with severe learning disabilitys i love my job and av been doinit 4 14yrs

i used to do 4 7.5 hr shifts a week but reece cudnt cope with me always coming and goin from work at different hrs

so i now do my hrs in 2 days ......

which he finds so much easier xx but i am very lucky asmy mum has the children 4 me xxx

think id mostprob give upwork if she didnt

goodluk with watever u decide

lovedonnaxxxxxx

[vicbee]

*** QUOTE*** Sadly, it seems that blood isn't always thicker than water. I'm discovering that my niece and nephew think my son is a spoilt brat, etc, etc. I had hoped that if we don't get acceptance from outsiders, that we'd at least get it from our own family. Very difficult, so I sympathise. ***quote

 

 

Just wanted to jump in and quote something my sister said last week to my daughter who has asd. My daughter is always desparate to go and see her auntie but unfortunately the feeling isnt mutual.. apparantly she picked my daughter up off the couch and threw her on the other couch and said to my daughter ' ASD is not an excuse for bad behaviour'. I wasnt there at the time, my mum was (who is very understanding fortunately). My sister and I do not get on otherwise i would have been round and given her the wrath of my tongue but some people are never going to get it. I was furious but she is narrowminded about many things so she will not be any different about my daughter.

 

 

 

[pookie170]

You have a wee bit of legal backing, in asking for a change in your working hours due to personal circumstances, though not an actual right to flexible working itself, if your employer can justify that accomodating your request would damage the buisiness, or suchlike.

Have a look at this link

 

http://www.direct.gov.uk/en/Employment/Emp...ing/DG_10029491

 

it may be of interest to you and others in a similar position.

I had to give up work for some time too, as it was just so difficult to find childcare that could deal with my sons' challenging behaviours.....his nursery placement was unspeakable! (Y'know that oft-uttered phrase, 'I wish I'd known then what I know now'? So true, and I'd go back and give 'em a piece of my mind and find somewhere that truly did have equal opportunities!....rant, rant!.... )

 

Anyway, I hope things go smoothly for you, it's obvious your child's best interests are of the utmost importance to you. All the conflicting emotions (I had em at any rate!) can be so draining at times, but you go with your decision and feel good about it!

 

Take care,

Esther x

[call me jaded]

I went on a one year's maternity leave and stayed at home for nine years. DH works his self-employed socks off, but we found it simpler for one of us to concentrate on earning and the other to concentrate on caring otherwise we were were both not doing either very well.

 

Did all the voluntary stuff and a few courses. Youngest started F/T in school last Sept and I'm back in the world of work (as well as being West London's worst mother). Working from home right now

[Paula]

Ive not worked a full time job for 23 years................My husband works a full time job and im a stay at home mother and housewife.even if id had a glittering career theyd have been no way i could have continued it once our son was born..apart from the aspergers he was born with the congenital abnormality bi lateral choanel atresia and spent months in and out of hospital and need round the clock mediacal care for almost 2 years.

 

 

We manage without two wages..............ok we dont go on foreign holidays never had one.............we live in a ex council house..............we dont have fancy furnishings and run two cars.....................

 

kids and there happiness is to me me more important than earing a few bob going to work.

 

So id have jacked in the job years ago it wouldnt even be an issue.

 

 

And has for getting bored..................not realy you just have different routines to fill youre day..............and in the summer you can sit in the garden reading its great..............I do everything in the home i take care of everyones needs...its so not stressfull.................To be honest i wont ever work againe.Its better to be be a bit skint and happy and unstressed than miserable for the sake of an extra few quid..............Money isnt everything

Edited May 31, 2009 by Paula

[joybed]

I had the same dilemma when DS1 was diagnosed. i worked full time in a job i loved and was very good at. DS went to a childminder who also had a daughter in his class and they used to fight all the time she had to keep them in seperate rooms. It all came to a head when Ds sat down in the middle of the road on the way to school one day and refused to move she rightly felt this compromised the safety of her own children who were 5 and 7 at the time so she stopped looking after DS. i left my job and worked nights part time then went back to midwifery working 30 hours with family flexible hours. It works but i get very little sleep and working around 3 kids is a huge problem. At times i am awake 36 hours+ which is exhausting. i can,t afford to give up work. My colleagues are on the whole sympathetic but I feel i am not giving my best to either my children or my work but I do the best i can. Probably not much help but just wanted you to know i understand the dilemma. For us a childminder is not an option as we had 3 in the space of 6 months who all let us down felt they couldn,t deal with Marcus and i couldn,t keep doing it to him. For the twins we used a nursery and this worked well but now we just handle it between us.

[Diane]

When my DS was younger I tried to work part time and I went through friends who thought they could cope to childminders who thought this also. I eventually found one (after two years) who was able to get a long with my DS and she had other children but it worked well. I did not work full time so it was only for a day or two a week.

 

It used to tear me apart sending him as he used to kick and scream. I am now glad I did not give in. I know I could not have held down a full time job. although he is now 15 I still only work part-time and fit it in around his schooling.

 

This is the best fit for all of us.

[vannie]

Thanks everyone. It's nice to see all the different views. My work have comprised with me and are going to see if it works out for the business.

 

So I am just working to 3pm so I can collect him from school. He already seems a bit happier, even though we had a very challenging weekend - nothing unusual there, so fingers crossed.

 

I have been to Bromley Autistic Trust today who have told me to push DLA and if they refuse again will help me go to tribunal, so if I do get DLA then I could consider giving up work anyway.

 

Thanks again.

 

 

[peaches]

Im glad your employer compromised, I do believe that under EU law they are supposed to give serious consideration to requests such as yours.

 

When I read through this I thought of my daughter, now aged 23. She wasnt diagnosed until she was an adult, but we knew she was different as a child and had difficulty with social situations, so I used to worry a lot. I worked part time and we had 3 different childminders before we found one that worked out. It worked because she was very flexible and also took another child from the same school. I used to spend hours agonising about the childcare, so I ended up packing up work and becoming a student. Then I was around for her and felt better about it.

 

Now Im getting to the point, my daughter was asked about her childhood when she had her assessment for Asperger's. She said she had the feeling she was loved and cared for and that mum was usually around when she finished school although she could remember going to a childminder at some point. This made me think, well what was I worrying about, she can hardly remember being with a childminder. It obviously didnt have a lasting effect on her, nor did it worry her like I imagined it did.

[chris54]

I have been to Bromley Autistic Trust today who have told me to push DLA and if they refuse again will help me go to tribunal, so if I do get DLA then I could consider giving up work anyway.

 

Thanks again.

 

If you get DLA you would also be entitled to claim extra child tax credit worth up to about £50 or more if you get higher rate DLA. If your taxable income is less that about £90 (Need to check that) you wold also be able to claim cares allowance.(Unlike tax credit this is the cares income and not the family income)

[frogslegs]

I used to work in the City, high flyer banking environment with a very good income. I had my son who straight away had special needs (he was born with a hare lip) and I just could not go back to work, somehow the issues that I used to be dealing with at work seemed completely trivial compared with what was going on at home. When DS was 14 months I went back to work, temping locally, and he went to nursery which he loved so that worked well. I would stop if if was sick or whatever so minimum stress. Then I had my daughter and at that point I decided to stay at home to look after them. My son speech was seriously impaired so he needed a lot of support which I could give him.

Nowadays I tutor at the local college in the evening, teach GCSE students after school and things like that so that I have something to put on my CV and because I enjoy having my own money so that I don't have to ask my husband for money to buy his birthday present! I also like the interaction with students and adults. It is important to be able to speak about something else other than cleaning, cooking... Since my son started school he has had to go to a childminder occasionally and I can't say that it has been successful. He did not get on with the other children and he was spending hours on the WIFI or playstation and would come home completely hyper. As for holiday clubs, don't even go there! My daughter loved them and would come home telling me how she had made 6 friends that day and how her brother had been curled up in a corner all afternoon.

[westie]

Hi, I posted on here last year as I was in a similar situation. I had worked full time since leaving school (15yrs) for same company. For a time my hubby did not work due to issues with sorting out eldest child after school and in hols (he didnt like being a househusband) and when he went back I had to negotiate with my employer for part time hours (I was already working flexi hours, starting and finishing early and they were pretty good with time off for appointment etc).

 

So I worked 20hrs over 3 days and the childminder who already looked after youngest had a change in circumstance and offered to just look after my two children (at that time youngest not diagnosed/ being assessed) I had to change jobs so that I could work these hours, but was managing okay.

BUT at the time my eldest having real bad time at school that year, and my youngest was having issues which led us to consult our health visitor who referred for assessment. And a month after youngest diagnosed with ASD, my childminder gave notice she had another job as she couldn't manage on wage she was earning looking after my two (as far as I think it was not because of my kids, at least I hope so!)

 

so I had to leave my job at very short notice cause I was not going through hassle of finding someone else (I could get a minder to have one but no one to have both together and my eldest in particular is really affected by having someone else looking after him and having to comply to their routines etc - even though he knew and liked this minder he still didnt like going esp. in the hols where he was there for a longer time). Plus I felt bad as what with eldests school phoning, hospital apptments and having to take more time off to cover minders hols etc as my mind was elsewhere sometimes, and I thought it would be easier (and better for my kids) to just leave and be a full time mum/ carer.

My hubby was working in a job where I thought we could live off his wage and although work offered me a month off with full pay to look around I decided to not take that up as knew what I was going to do.

 

Anyway a year on and I am glad as I dont have to worry about negotiating for time off, neglecting my job or my kids and they both seem to be a lot more settled now than they have ever been. Financially we have been ok so far, and since my little one started part time school I have done things like family learning numeracy course on offer at school, then a level 2 numeracy course, then at present I go into school two afternoons to work in classes and doing an 11 wk helping in school course. I have done the nas earlybird course (which I would not have been able to do if I had been at work) and I also go to the NAS branch meetings and my mum is elderly and with health problems so it means I can see her a lot more and help her more as well. I also meet up with other parents and try to help others as much as I can with writing letters for school etc. and finding out information for people. Its also allowed me to read and research and I have done some work with behaviour with my eldest which I think has helped him in some ways to better deal with it.

 

When my youngest son does go to school full time I will do some volunteer work with home start or NAS and perhaps still help in school as that can be fun (and its easier to get time off if you are volunteering although of course I would not take advantage and turn up whenever and wherever I feel like it).

 

At this stage I am not sure about getting another job for a while, as got the milestone move to secondary for eldest, and full time school for youngest are coming up and this may mean more appointments, writing letters to get them support if they are not coping etc. Of course they may be a time when circumstances change and I have to but I will meet that hurdle when I come to it, and I hope by trying to keep my skills up to date it will make it easier when I do (and I want a career working with families, completely unrelated to my old job)

 

I think you have made right move in asking first for reduced hours (and glad your employer have decided to give it a go) and I hope it works out for you. Its a very personal decision. Its hard to give up, I dont see a lot of the good friends I had and I miss some aspects of my job but more the interaction with people and I am doing my best to keep my mind active and occupied (I have yet to succumb to daytime tv would you believe!) and get skills and experience to help me to get a job at some point in the future (fingers crossed). In other ways its great being at home and spending time with your family as well....

 

(Not mastered the housework side yet, so its still often rather messy )