Bit fed up with people that dont understand.

[AmberLeaf]

Self indulgent whinge really.

Have just been talking to a very good friend who is genuinely lovely but just doesn't 'get' the constraints that having a child with a disability (ASD) brings.

I don't currently work and am a registered carer for my son. I would love to work, I hate that I'm not and I have had to give up on my studies and career plan because of my sons needs and lack of child care for children with autism.

If I could get a term time/school hours job I really would do anything but there just aren't that many out there never mind ones with understanding employers who are willing to be flexible.

I just mentioned a course I'd like to do that would better my chances of finding something suitable and she said 'you must finish this one, don't give it up' in reference to my having to give up a college place due to my sons difficulties at after school club etc. as if I just thought 'I cant be bothered with this anymore' and stopped going.

I don't have family support and am a single parent.

This is not how I imagined my life would be but I accept that it is and I think I do my best, but when someone says something like that it gets to me. I don't usually care what people think because I know what I'm doing and why I'm doing it.

I know it's because she hasn't experienced this in her life but why is it so hard to get?

I have no one to look after my son if I cant and after school clubs wont take him so what else can I do? surely its not that hard to understand that?

Thank you zzzzz!

Its like people think you're just not trying hard enough.

The same people that are quickest to judge are those that'd collapse within a month if we swapped lives.

I know how you feel - recently had to point out to an aquaintance that I returned to full wime work when DS was 6 weeks, and expressed in the loos when needed as he couldn't have formula at the time. Yet the lack of school-age childcare has me beat.

Long term I do have a cunning plan for self employment, but these things don't happen overnight.

Thanks everyone.

She tries to be helpful in making suggestions but when my answer is 'no that wouldn't work' for very legitimate reasons I suspect it sounds to someone who doesn't understand as though I'm 'poo-pooing a good idea!

I feel like saying 'what do you suggest? shall I just leave him to fend for himself?' because there just aren't any realistic options.

I once had a man at the job center say I should apply for a particular job, I told him what about school holidays? there isn't any childcare available, he said I should 'cross that bridge when I come to it' but it just doesn't work like that does it?

I am very thick skinned normally but every now and then it gets to me.

Bochead I agree I think if she was me for a month she'd be pulling her hair out after a week!

Self employment is something I think about often.

Totally get where you're coming from Amberleaf.
I re-trained as a TA so that I could fit around the kids at school. I also love the job too, as it gets me out into a work environment (and lets me fight from the inside too )
So why, oh why, does everyone say 'you should be a teacher' , 'what a waste of education, couldn't you do something else' - yep, because helping children get an education is such a waste of my time
Truth is, some people just don't get life. Most of us do what we can with what we've got and recognise a good day from a bad day. I think it is often people that are not content with their lot in life that feel obliged to comment on the rest of us.
If your friend were truly happy with her life, she would be showing support for your new challenge.

Thanks auntyevil

I think also its hard for people who have had help/support to see that not everyone is lucky enough to have that too.

She is a nice person but just maybe not very empathetic.

It can be frustrating. I find that we have to repeat the same things over and over sometimes before it finally at least BEGINS to sink in... and then while they've then HEARD it, they often still don't GET it.

Yes thats it. ive said it lots before so thats what makes me think she doesnt get it. or thinks im not trying.

We get the comments of "oh he'll grow out of it and then you can get your old job back.." um.. no.. I can't... because my old job is a FT job (it's just not one of those jobs that you can do well PT, plus overtime is often requested to be done) and involves shift work and high stress. There is just no way.

It's interesting that they assume he'll grow out of it, and then life will just return to the way it used to be. sigh... Do they think I was pleased to give up a well paid job with security to be a SAHM/carer?? apparently so...

Yes i've had from people the 'when he's older' line.

He isn't going to grow a new brain!

I really don't go on about it all, so when the questions start I just think oh please don't ask me that! its like everytime I have to repeat it all it makes me feel shittier.

I though I might sign up for evening tai chi classes you know, I've done it before and really enjoyed how relaxed it made me feel. So I went online, because that's the easy way. But they have a list of previous classes in adult ed that I've signed up for. I made all the day schools...
However I appear to have started tai chi five times and never completed a term.
It always starts well, but somehow the demands of SN always get in the way.
Hope springs eternal, I've signed up again.

'The same people that are quickest to judge are those that'd collapse within a month if we swapped lives.'

Wise words. It's why I also stay away from the housework and tidy home threads. As relevant as 'How to clean your diamond tiaras correctly' would be to me.

Hah! I'm glad its not just me Fallen! I always start with good intentions but as you say the demands of SN get in the way.

Oh lets not even start on the subject of tidy homes

I've been a SAHM for 13 years. I was ready to go back to work in 2005, when I fell pregnant so that put the brakes on that little PT ambition, then I had DS4 in 2007 and very quickly realised that any thoughts of returning to work once he was at school would never be realised. He has non verbal ASD and is deaf too. It's the pity that gets me. I didn't choose to have three kids with SN, but that's what I have and I make the best of each day. I would love to go back to work, but I wonder if it's worth it now having been out of the job market for such a long time and what employer is going to understand that the needs of my family will always come first. That's the main point I think. The needs of your family.

Hi amberleaf, we all need a whinge sometimes!! "give her time and she will grow out of it" I have heard this line on so many occasions it makes me wonder sometimes if I'm hearing things!! The lack of understanding with my parents is unbelievable and I have also found over the years that my circle of friends has got smaller and smaller!

Thanks SallyBear and Ilovecake1

my circle of friends has got smaller and smaller

Yes mine too. Its a shame bit ive read that its quite common when you have a child with disabilities.

You're right SallyBear our families needs come first. Thats always been my mantra.

Thanks again everyone I knew you'd all 'get it'!

Managed to arrange weekly music therapy for Ds but there was no public transport and I don't drive.

Called a number is taxi firms for a job lot deal and got back extortionate quotes followed by 'well it will be funded won't it?'. When I told them 'no' they just told me that of course they are, I just need to find the right dept!

Ah! you just need to find that mythical plate that we get everything handed to us on!

That's bad though if they are bumping up the prices because they think its 'free'

I understand.

I was supposed to sign up for some aquafit classes in the Spring to help keep my back strong because I have HMS. DS1 hit a rough patch at school and between that, the usual run of coughs, colds and tummy bugs and struggling to get this grotty house sorted out (we have bare plaster on so many walls and damp that needs fixing), the aquafit just never happened.

Yeah. They obviously know about the SN industry and want a cut. Sadly disabled people aeen't the beneficaries

We get the "when they're older" thing too. Somehow I don't think a miracle cure is going to happen "when they're older".