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Parents of HF ASD/Aspergers - do you work and what childcare do you use?

14 replies

Doraemon · 03/01/2013 19:23

I used to have a professional career but then I had DS1, had major PND, resigned to move out of London and since then have mainly been SAHM, had DS2, done odd bits of part-time work, then childminding, now on maternity leave with DC3. The decision to have DC3 was partly influenced by getting DS1s ASD diagnosis confirmed, because I kind of felt that the chances of me having a proper career were now fairly low anyway so another baby might not make much difference.

DS1 copes at school but brings all his tension and anxiety home and I really don't feel he could cope with before and after school childcare, and DH's job involves long hours and the ability to work late or go away for a few nights at short notice. So I feel my options are pretty much limited to working within school hours only. I know we are lucky that we can afford for me to be at home but sometimes the thought of doing this forever gets to me.

I'd be really interested to know how others manage to balance the need/desire for work with the need to give a child with ASD enough stability and routine.

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porridgelover · 03/01/2013 22:06

Marking my place as I am in a similar position.
I work school hours only, try to cram it in so that I am keeping up with my field.
Hard though.
I struggle with where I could find appropriate child minding for DS who has ASD also. It would have to be an exceptional person who is really prepared to understand him and have the right mix of firmness and kindness.

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Lolaismyfavouriteandmybest · 03/01/2013 22:30

My dd has HFA and physical disabilities. I have a professional career and am very fortunate that my next door neighbour is a fabulous childminder. Dd struggled horribly at nursery (became a selective mute!) but has thrived in a smaller setting. Her interactions with other children have improved (she's an only so mixing with a houseful of children with a wide variety of ages has been valuable). She does need an hour of tv when she gets home to wind down and she vents on occasion when it all gets a bit too much. But I think it's important to show her her disabilities don't have to hold her back in life (we have the same conditions) she only goes a few times a week as my mum and dh can cover some of times.

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HondaJizz · 03/01/2013 22:44

I have an after school nanny for my DSs, the eldest of whom has AS (presently undiagnosed but fighting for it!).

I found her on childcare.co.uk. She is so patient with him and they have lovely bond. I am a full time student out on placement, so could not do my MA without Nanny's help.

I pay £8 per hour but am very generous with holidays, very flexible and I make sure I treat her very, very well to make up for lower scale of pay.

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sazale · 03/01/2013 23:57

I'm currently filling my time by studying for a degree via the Open University, training to be a Family Rights Project Volunteer with the NAS, have started becoming active with the parent carers forum and also helping to start a family drop in session with the NAS.

It's helping fill the gap and fortunately we manage ok financially (ATM).

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sazale · 04/01/2013 00:02

Sorry forgot to add I have 3 children, dd 14 HFA (amongst other difficulties), ds 12 NT and ds 5 with hypermobility/social anxiety/phonological speech disorder and suspected HFA and dyslexia. The amount of appointments we have ATM would make it impossible for me to work, childcare for a 14 year is none existent and ds 5 anxiety causes him to be selectively mute.

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neverputasockinatoaster · 04/01/2013 00:15

DS is 8 and has an ASD. He was only diagnosed a year ago if that. I am a teacher and used to work full time. DS was at nursery full time and then when he went to school he used breakfast club and an after school club. When he was in year 1 it all went tits up. I was struggling with my job as I kept getting calls from After school club to collect him as he was in distress or being very aggressive.
In the September he started year 2 I went part time. DS now attends breakfast club 4 days a week and after school club one day. He is collected from schoo by myself or my DH 4 days out of 5.
The difference in my son is incredible.
Financially we are about even now - DD is now at school so we have very little childcare to pay for and taking into account the fact that I pay less tax as I earn less we are currently financially better off than when I worked full time.

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littlefirefly · 04/01/2013 00:43

DS is 13 and has ASD. I rely on DLA/CA now as I had to stop work. Like neverputasockinatoaster I used to get calls to collect him, we had a lot of appointments and I had to home ed him for a while. I'm a LP so I couldn't rely on anyone else to do pickups/appointments.

He's much more settled at school now and we have fewer appointments but with school holidays and school hours, it doesn't make sense for me to work. School hours are my respite, I use that time to do shopping, go to support/training sessions and it's also the only chance I have to do stuff like get a haircut/grab a coffee with friends. I also do some study and voluntary work which I find satisfying, so I don't feel the need to work for adult company or social contact.

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TheNebulousBoojum · 04/01/2013 00:59

Plain and simple, my mother. My amazing, incredible fantastic mother.
They still adore each other, and he's 18 now. God knows how else we'd have coped.

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Doraemon · 04/01/2013 08:20

Thanks for your replies. I think I am having a pre-baby wobble about 'am I going to be stuck at home forever' and not sure how childminding is going to work once I have 3 of my own (was only doing very small scale business, one or 2 toddlers 4 days a week, school holidays were rather challenging.....). Also a couple of comments recently (on here and in real life) about SAHMs have struck a nerve.
neverputasock I was really interested to hear that less after school club has made a noticeable difference for your son. Because DS1 is doing pretty well at school and saves his meltdowns for home I think from the outside it looks like he is fine, and that I am just mollycoddling him, whereas I feel that in fact it is only because I am physically and emotionally available before and after school and through the holidays that allows him to cope while he's there (also that fact that because I'm there I can have a quick word with the teacher or TA before or after school if anything's bothering him, as he struggles to tell anyone at school if anything has upset him, just comes home and collapses). He's in Year 3 now in a small, very supportive primary and I suspect once he hits secondary things are going to get a lot harder for him.

sazale I would love to do an OU course but I already have a degree so would have to pay full fees. Am thinking that long term plan might have to involve becoming a Teaching Assistant (my background is in education but mainly at HE level).

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Ilisten2theradio · 04/01/2013 17:43

How about trying to get teachers children to childmind so that you have the holidays free? Its what I did when I was childminding - I was lucky perhaps, but I was always full.
Now I am working 1 day a week for 6 hours and in school time - back to an office again. I can usually find cover for one day a week during hols as there is a great LEA sports centre near me that takes children up to 14, so am ok for the moment as the person running it knows DS (HF AS)as he teaches him tramoplining too.
I used to work 3 days in school hours and did something similar - though often managed 2 longer days in the hols rather than 3.

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sazale · 04/01/2013 22:38

Doraemon Im sure you'll be brilliant in whatever you decide to do. I've found more things than I could have imagined and people often ask me how I find the time ha ha!

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creamteas · 05/01/2013 10:19

I work full-time, but am a university lecturer so am really lucky in that I can work from home a lot of the time and have lots of employment rights under the staffing policies for flexible working/time off etc. Half-terms are tricky, but the main holidays coincide with uni vacations!

When my two HF ASD DC were younger, they went to the University Nursery who were brilliant. Once at school, we used breakfast and after-school club which thankfully were able to meet their needs.

When the they transferred to secondary school I couldn't use organised childcare anymore. At 11 they were too old for any of the NT local childcare providers and not disabled enough to qualify for specialist provision. Mornings were not too bad as the school opens at 8, so I could still get to work in time to deliver 9am lectures! The school runs a homework club till 4 most days. I applied and was granted under 'flexible working' arrangements the right not to have any of my classes scheduled between 4-6. I still have to attend the occasional meeting, but never had to leave them for long.

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Doraemon · 05/01/2013 10:55

Thanks. I have been thinking about offering term-time only childminding when I and if I start up again - there is a fairly big FE college down the road and I know quite a few parents at school have done access courses etc there and got their childcare funded, so it might be possible to pick up some business that way. creamteas I used to be a lecturer too but committed career suicide by resigning - I still feel it was the right decision (only way we could get out of London and move up north where the grass is greener) but I do still fantasise about sitting peacefully in an academic library with a big pile of books Blush

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creamteas · 05/01/2013 11:22

Dora have you thought about seeing if there are part-time teaching vacancies at the FE college (or local HE)?

It might not be what you were used to, but perhaps a way back in.......

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