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not sure what to do

(15 Posts)
Calally Sun 12-Jun-11 11:22:27

im a single parent with a 5yo who has a severe learning disability ( being assessed for autism ). i work 16 hrs a week, and really enjoy my job. but working and having a disabled child is so tough. ds started p1 last sept, and i changed my hrs to suit with his transport to and from school. now because of his behaviour, they are gonna change it from sept to a time which doesnt suit. no theres nothing i can do. thats where im stuck. but all the support groups, and parents mornings at the school are on days when i work. all ds's appointments and meetings are when i work. work have been really good, but dont know for how much longer. i dont know any of the other parents in my sons class. but the 1 meeting i did get to, they all knew each other, and i felt like a spare part. although from talking to them, i realised there was lots of things ds was entitled to, and wasnt getting. i just feel like im being penalised for working. ive talked with my mum and dad ( both failing health ) and they keep telling me not to give up work, theyll help me out. its to much to ask of them, to do so much for me already. id basically need my mum or dad to take ds to school every day, or wait at the bus stop with him.

has anyone else encountered these kind of problems? if so what did you do?

TotalChaos Sun 12-Jun-11 11:46:59

I'ld say since you really enjoy your job, keep at it if your parents are able and willing to help, as it's important for you to have something for yourself iyswim, adult company etc. also in current climate, it's no light thing to find another part time job if you changed your mind and wanted to go back to work.

Calally Sun 12-Jun-11 11:52:35

yeah i no. just feel so guilty relying on them. just wish i could attend some of these support groups, and get to know some of the other parents.

utah Sun 12-Jun-11 12:12:18

If you decide for your parents to take your son to school then check with your council as they/you may be able to claim milage. Speak again to transport they may have a space on the route from your parents house so you could drop your son at their house.

TotalChaos Sun 12-Jun-11 12:14:40

that's a v good idea Utah about the drop off being the parents house. do you have any of the autism-friendly cinema screenings in your area, that could be a way of meeting parents?

Calally Sun 12-Jun-11 12:18:56

not as far as im aware. cant be dropped off at parents, as they live in a different board area. he hasnt got a specific autism dx yet, so limited as to what i can do.

asdx2 Sun 12-Jun-11 12:43:13

Do you claim DLA? Are your earnings below the limit for Carer's Allowance? Have you investigated childcare in the area? You could claim a significant amount towards this with tax credits. Could you put him with a childminder and get transport to pick up from there? Do you know about the Family Fund and Merlin's Magic Wand? Just a few ideas

Calally Sun 12-Jun-11 12:47:09

yeah i get dla for him. which is being reviewed, as we think he should be getting some mobility. think i earn to much for carers allowance. currently looking into childminders. i know about the family fund. havent heard about merlins. is that just something in england?

asdx2 Sun 12-Jun-11 13:16:42

here tickets and travel expenses for you and your child to have a fun day out.

Calally Sun 12-Jun-11 13:33:56

was having a look at it. we live in northern ireland, so dont think we'd be eligible. wouldnt be worth a day, would need an overnight stay more than likely to allow for travelling.

littlefirefly Sun 12-Jun-11 14:47:56

I'm a single parent too and DS has ASD, so I know how difficult it is to hold down a job. After a while, I found that it was impossible as DS had to be taken out of school for behavioural problems and therapy appointments, plus he has to be looked after by me during holidays as no one else can manage him.

We have been on DLA and Carer's Allowance for a few years now and financially I find that it's manageable. I get IS and CTC at a higher rate with full HB/CTB, so tbh we're actually better off than we would have been if I carried on working, as I'd only ever manage p/t hours and it would get swallowed by travel/clothes/lunch costs.

It also means that I have school hours free to attend local support groups, training sessions on ASD, do some volunteer work and read around the subject. I'm doing some online training on ASD as well, which I could only do when DS is at school and not at home demanding my attention. It's such a f/t job dealing with autism/LDs that you shouldn't feel guilty for not working - I spend a lot of time putting together visual charts, shopping for ASD-friendly things in our home and organising our lifestyle so that DS can cope with it.

Calally Sun 12-Jun-11 14:56:03

my dad is totally against me giving up work. but he doesnt know the half of it. its that feeling of dread having to ask for time of repeatedly, or to rearrange things. my latest problem is, that he has been removed of school transport ( supposedly temporarily ) due to behavioural issues. my mum is taking him. but i was assured nothing had been arranged for sept. but the transport people sent a letter, advising from sept onwards he would be picked up on an empty bus at 08:50. i start work at 9, so the worst time possible. so either my mum takes him ( which they wont pay for, as they have a viable arrangement ) i find a childminder near the pick up point ( like gold dust, more chance of winning lotto ) or i give up work

utah Sun 12-Jun-11 15:17:24

I would enquire about mileage again as sending an empty bus would not be environmental friendly and this is one of the main reasons mileage is refused . Plus we all know that council should be as green as possible they charge us enough. Otherwise speak to mp /leader of the council. Sorry not much else to advise.

littlefirefly Sun 12-Jun-11 15:30:09

Why are they against you giving up work? My family used to be quite negative too, but they have seen my son's behaviour and now they recognise that I'm helping him more by being around for him and spending my time learning how to manage his issues. Some 'friends' continued to be critical about being on benefits but most of my friends now are other parents of disabled children which is a much better support network for me.

Would you even be able to find a childminder who would accept your child? I tried a couple in my area but they all gave up on him as he's a runner and would get very destructive during meltdowns.

Calally Sun 12-Jun-11 15:35:46

theres an empty bus that passes this way on the way back to the depot, after dropping off at a different school.

my dads very old fashioned, he still cant get his head around ds having a disability and believes he just needs discipline. he spends time with him, but still doesnt get it. my friends are great, but all have there own job / kids. not sure if a childminder would. he is also a runner, and can be quite creative with inventing new behaviours to get what he wants ( usually attention )

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