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Work and Raising a child with Special Needs

(20 Posts)
letsbefriends123 Mon 10-Dec-18 02:14:56

I would love to know how other families cope with balancing work outside the home with raising a child/ren with special needs. I work part time and my partner full time with no support from family. It's just so hard. We manage but we are both completely drained. I'm interested in helpful tips as well as a moan!

Fairylea Mon 10-Dec-18 08:45:24

I just can’t work. I know a lot of my Sen parent friends are the same. With the combination of no family help, my son not sleeping and him attending a complex needs school it’s just impossible. We manage on a combination of my dhs low full time wage, Dla, carers allowance and tax credits.

SaltPans Mon 10-Dec-18 09:37:37

I didn't work, until DD was about 16 - even then I only helped out DH in term time only. We claimed DLA for her, and carer's allowance for me.

It was just too difficult to work with all the appointments and meetings; and there were no special play schemes in the holidays for children like her - and she would never have been able to cope in the universal play schemes. I would say the majority of parents of SEN children I have come across, could not work - although many of them did voluntary work, supporting other parents of SEN children.

letsbefriends123 Mon 10-Dec-18 10:10:10

Thank you for your replies. It's been such a shock to the system to find out just how unsupported so many of us are on top of dealing with the challenges we already face. I never realised that after an autism diagnosis you would have to continue to fight for every bit of help, wait so long at every point in the process and that family would be such a disappointment. Without my partner I don't now how I would have coped. I'm also humbled by other sen parents who have it so much harder than us. Mostly I am positive but some days are just particularly hard!

BlackeyedGruesome Mon 10-Dec-18 12:11:45

don't work. much to ds's disgust. rely on maintanence, dla nad carers allowance.

Ouryve Mon 10-Dec-18 13:35:47

I don't. In the past month, alone, I've had one off school ill for a couple of days, one off for a whole day for an appointment, annual review, transport problems for one of them, including having to take him to school myself, for a week because the alternative transport fell through.

DH works FT in a professional role and we live in an inexpensive part of the country, so we don't struggle without my wage but with 2 with SN there's times that we've been grateful that he's in a job wher he can be a little flexible about working hours, working from home, etc because, otherwise, I'd have to figure out how to be in 2 places at once or I've had to corner one in a room to keep them safe from each other when one or both of them has gone into a protracted meltdown and I need rescuing before I piss myself!

MrsFrisbyMouse Mon 10-Dec-18 17:09:08

I stayed home with Child 1 because I wanted to (dysfunctional childhood of my own and felt needed to focus energy on parenting - was worried it would be hard without good role models), found out that actually parenting didn't need me full time and was mentally prepared to return to work after Child 2... Until SN diagnosed and had to wait until his was 7 before we got the full picture! No way I could have worked and balanced his needs (and those of the rest of the family). 🤗
However, since he has changed school (he's just gone into year 3 at a specialist small school) he's so much calmer and settled, so working could be a possibility... Apart from the extra long holidays and lack of suitable play schemes, and after school care, and that we're doing drop offs/pick ups of a 45 minute each way commute. (quid pro quo for getting the school we wanted - could challenge for transport - but still have to cover holidays etc)

So if someone wanted to give me a job from 9.30 - 2.30 daily - with school holidays off close to King's Cross - I'm your lady!!

Didiplanthis Mon 10-Dec-18 20:21:03

I had to drop from full time to one day a week when DH is off. It would be more doable if DS could manage wraparound care and holiday care without massive anxiety but the emotional cost to him is too great so we manage. We have no support from family either.

Sausagepickle123 Mon 10-Dec-18 21:54:28

I work 4 days, DH works more than full time (so is no help). This only works because I have been in my job 10years and have the credit and a nice boss to be able to work from home basically whenever I need to attend appointments/meetings. School is 30 seconds walk from our house. Also we earn enough to be able to afford a nanny for after school and holidays. Absolutely no way could my son do the school after school care.
I have basically given up social life and spend hours a week chasing, sorting out what we need to do for our kids. I’m permanently exhausted - aren’t we all!

shouting Mon 10-Dec-18 22:08:28

We both work but it's only possible because we both have very flexible jobs. I work 3 days a week term time only. DH works flexi time so leaves early twice a week to pick up DC1 and be home for DC2's transport. My mum does the other day. I try and schedule hospital appointments & school meetings for my days off if possible, if not DH uses annual leave.

SpringerLink Mon 10-Dec-18 22:27:07

My life always feels like it’s about to implode. I work 50% of the time and DH works a lot to avoid being around. He really finds dealing with DS difficult.

We are close to family. My brothers, sister and aunt all help. And DS has HFA rather than any particularly complex needs.

imip Mon 10-Dec-18 22:28:04

4dc between 6-12, two with ASD and 1 with JHS with lots of hospital appts. I work as an LSA part time so can cover holidays and work within school hours so do pick up and drop off. Dh worked in City up til 2 years ago as did I before dc. He is now self employed to facilitate appts and managing dc with ASSd, who can have challenging behaviour.

We can only afford this because we had good wages and now live off savings/investments and we had dc in late 30s.

imip Mon 10-Dec-18 22:28:39

Oh, no family on this side of the world!

BlackeyedGruesome Mon 10-Dec-18 22:45:37

so far this term I would have had to take 5 and 1/2 days for dd's appointments and 10 days for ds. then next half term a further 5 or 6 days for dd. that and trying to book things in school holidays where you get a choice.

EllenJanesthickerknickers Mon 10-Dec-18 22:52:35

The only way I could work was school hours and term time only until DS2 was 13. I managed to get a job as a TA supporting another child in a nearby school when DS was 7. My exH left when DS was nearly 12 and I got a longer hours job, still term time only. I survived on my wage, tax credits, maintenance and DS gets PIP. I try not to touch the PIP. I no longer get maintenance as DS is 19 (and his dad is a dick.) Once he leaves education I’m not sure how I’ll manage.

Sleepyblueocean Tue 11-Dec-18 07:13:48

Dh works full time. I don't work. We have no childcare because although we have family around none of them can cope with him now he is bigger and no professional child carers would take him. He is not allowed at any respite type care either. We are lucky that dh can be flexible in taking holidays because ds needs two people with him at appointments.

pannetone Tue 11-Dec-18 11:29:28

Similar issues here in that my DS2 would never have coped with after school or holiday care. When he started school I got a job as a TA. Did that til I had DS3. By that time DS2 was in junior school and struggling- though he wasn’t diagnosed with HFA til age 14. By which time I had DD struggling at pre-school, and a very anxious DS3 in primary.

They all ended up with an HFA diagnosis and school issues have been a constant theme - including periods of not managing to attend and having to find new schools. Add in the paperwork and meetings that comes with 3 EHCPs and I haven’t ‘worked’ for 16 years...

We can manage on DH’s income but his job doesn’t have much flexibility, so it is difficult when his support and input is needed at meetings.

autumnboys Fri 14-Dec-18 18:21:22

I have a very flexible job which allows me to do most drop offs and pick ups and work from home where necessary. DS3 is 9 and has HFA and maybe some processing stuff. He is quite easy at home but struggles a bit in his mainstream school. DH commutes and works long hours, but has enough seniority to work from home/adjust his working hours if really needs. We are incredibly lucky. Our older two are capable of keeping an eye on their brother for a couple of hours if needed, too.

KateGrey Fri 14-Dec-18 18:29:04

Three kids, two with Sen. Last academic year youngest was out of school for the majority of the time. I did have a home based contract working 20 hours a week from home but the company have had to cut staff so I’m no longer working. I have looked for work but with the kids it just doesn’t seem possible. I have to drop two at school and put one in his taxi. It’s just not doable sadly.

taratill Fri 14-Dec-18 18:29:56

I am very lucky as I have a job that allows me to work at home entirely as and when I can, this is fortunate because DS with HFA is now completely unable to attend any school and his anxiety is such that his behaviour can be extremely challenging.

Given that and having another child with HFA and other issues there is no way I could work in a traditional job. Just dealing with DS alone he has 3 theraputic appointments per week.

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