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to think I let ds3 down?

(47 Posts)
Peachy Sun 04-Sep-11 14:09:40

yesterday we were at a carnival. We walked past a group of people who heard ds3 speak, he has autism and associated speech disorders, and laughed at him calling him a few names like diim.

They didn;t know I can hear.

I feel I let him down by not saying anything.

DH feels I did as well (he wasn;t tehre).

It's not just that- I won't appeal for a blue badge becuase I am scared of being confronted by people who can't see his disability having a go; I won;t even use a P&T space despite having 2 (nad one being dx'd ) asd kids with me becuase I don't 'qualify' for P&T now ds4 is a pre-schooler. DH got very annoyed saying I was placing their safety below my embarassment at potentially being faced with a 'mumsnetter who thinks she has a bigger right'.

We get no help with respite of any kind and I almost handed back teh taxi SSD provide to pa[lyscheme (a palyscheme available to NT kdis as well) becuase I found out that for us to get it, a friend with an asd child and who is a single mum lost hers.

AIBU to think I am really letting the boys down? I read about people having a sense of entitlement- I seem to have the opposite. I ahven;t been able to do any work for 6 months and instead of closing my (incredibly tiny) business I still pay NI (I checked with HMRC that this is OK, it is) becuase it amkes me feel less guilty about teh help we do get (some disability support and SNU places).

tabulahrasa Sun 04-Sep-11 14:15:57

I don't think you're letting them down, I think it's hard to stand up and make a fuss if it's not in your nature to do so.

MmmmmCake Sun 04-Sep-11 14:16:57

i use P&C spaces, without kids, no problem with it

if you want to make life a hard struggle, you are going about it the right way. I mean why bother to use a car, you should be walking everywhere, rain shine or snow. Why are you buying things from a supermarket, you should be growing your own and sewing your clothes out of old duvets

MumblingRagDoll Sun 04-Sep-11 14:19:09

You did not let him down. you treated those fools with the contempt they deserved. To rise up and front them for a stupid snigger would have been silly as it could have upset DS.

Pick your fights...if someone hurt him or repeatedlytargeted him...THEN get in there with no holds barred.

FabbyChic Sun 04-Sep-11 14:20:24

You are probably entitled to DLA? Do you claim it because you should.

blackeyedsusan Sun 04-Sep-11 14:21:51

for god's sake use a parent and toddler space. some are for children up to 12 (asda) and use that blue badge. you are entitled to it.

worraliberty Sun 04-Sep-11 14:24:19

I can only go on what you've written in your OP

But do you think part of you is in 'denial' about your DCs condition?

worraliberty Sun 04-Sep-11 14:25:10

And I don't think they call them Parent and 'Toddler' spaces anymore...aren't they called Parent and 'Child'?

ChippingIn Sun 04-Sep-11 14:28:09

Did your DS hear them - did he understand they were being horrible to him?

youarekidding Sun 04-Sep-11 14:29:06

P&T spaces are for families with children up to 12 usually. I'm sure sure why 12 but I think it has something to do with them needing car seat until then.

Use it, I do with DS 7 if it's quiet.

Agree try DLA and appeal blue badge.

YANBU to not have said something, you don't don't feel comfortable it's worse to confront than not.

Nagoo Sun 04-Sep-11 14:34:11

The first thing is about the kids taking the piss.

In a minute someone will come along who deals with that crap every day and they will tell you what to say.

But ignoring it is a valid response. Did your DS notice the comments? You can talk to him about it if he is upset. If he didn't hear them then you responding draws attention to the idiot, when your DS could just carry on having a lovely time at the carnival.

Peachy Sun 04-Sep-11 15:13:09

Fabby I claim for 2/3 Sn kids, we have decided not to ask for it for ds4 unless one of the other claims end or reduces. We get one HRC and one MRC and 2 X lrM. We are not entiled to a blue badge but SSD said they would support us if we appealed. Boys have both sicne started SNUs so probably could do it.

Mmmmm you are right, plenty of grow your own in the garden right now: and really I have enough don't I? I am studying too but always feel I must be 'good' and do it.

I don't think I am in denial, but I was raised by aprents who refused top judge or aplce value verdicts EVER and for some reason I decided to develop my system and attribute maximum guil;t to myself all teh time, not sure why.

ChippingIn, no I don't think so, he was fairly absent at the time. Hard to know though. Theyw eren't kids thogh, tehyw ere adults- probably my age (pushing 40).

I do this blame thing all the time: my tutor at college mentioned recently I missed out on a chance of a funded Phd only- and only as they'd have abcked me- becuase I didn;t like to put myself forwards and make someone else miss out. So I can't do it now. Same old same old!

tabulahrasa Sun 04-Sep-11 16:28:32

Like I said, I think it's a hard thing to do, I'm not a pushy person - I'm shy, I don't like drawing attention to myself and when in a stressfull situation I forget what it is I want to say/do (and I have a DS with AS, shocker, rofl)

When it comes to people saying things about DS's speech (mine has speech problems as well) tbh, if he's oblivious, there's no real point in saying anything - they're obviously ignorant gits and you having a go at them is just going to make it an issue for DS, they're not suddenly going to feel bad about it, if they were they'd never have said anything to start with. (I have cultivated a good glare though)

When it comes to things the DC are entitled to, it's not about you or how deserving you are, if they can benefit from it, that's where I steel myself and go, nope he deserves it, I'm not going to back down till he gets it - even if it's the quitest politest argument they've had, lol - or I delegate, DP is much more confident than me, so he can do things too.

I got to the point (in a muti agency school meeting) where I looked round and thought, I'm the only one who is going to always be acting in DS's best interests, I need to do this - if I don't, no-one else will.

The thing is, you shouldn't blame yourself anyway - it shouldn't be that the squeakiest wheel gets the oil, no-one trains you to be a parent of a child with SNs, in fact it's bloody hard just working out what it is you're supposed to be fighting for, nevermind then having to fight for it. Anything that's useful is on the basis that the parent has to find out about it and then fight to get it, if you find that hard to do - it's not your fault, the fault is in the way everything is set up.

kerrymumbles Sun 04-Sep-11 16:32:36

what kind of fucked up edjit makes fun of a child?

oooh.

you should have gone up to them and said,

"do you have a problem?"

peachy my dear - re: badge, parking, etc. WHAT THE FUCK DO YOU CARE what other people you DON'T EVEN KNOW think. ffs.

slap slap.

okay and you're out of it! now grow a pair woman

tabulahrasa Sun 04-Sep-11 16:35:50

I don't park in P&C speces because my DC are too old - even if it's late at night and there's only 3 other cars there blush
Mine are a fair bit older than peachy's though

MumdiddyMum Sun 04-Sep-11 17:04:44

If you had stood up to them he would have been aware of it and been upset. F**k them frankly. Their opinion is irrelevent. I would have ignored it too.

nickschick Sun 04-Sep-11 17:18:51

Several things here - if youd have said anything to them youd have made it look like you gave a care about what they were saying,you dont. they are young ignorant kids,youd have had a row a row you cant win because they are so ignorant and someone as ignorant to ridicule a disabled person wouldnt stop just because an educated person told them not to,youd have upset your ds more than them (cost even though he has SN he has more brain cells than them),

By not taking extra help or financial support you are doing your ds out of benefits that are rightfully his - a child entitled to support gets that support they dont take it from one to give to another - your ds is due that transport due that placement and due any dla money,by taking it you can do things with him that make him happy - even if its only buying nicer ice cream for him,socks with cartoon characters that he likes.

What would happen if ds got worse? if suddenly you were unable to care for him the way you do and you needed to pay for that care? just because you then need it doesnt mean that you will get it (as this government is seeing fit to get rid of any help) so take it now,nobodies saying you are cashing on your ds health issues nobodies saying how great it is to our economy that you dont take his entitlement - theres that many people ripping of our system taking what they shouldnt be fgs take what your ds is entitled to,you may find it gives you access to other support too- lifes hard as it is with a disabled child its even harder.

My friends son has autism and people do look they cant help it - its very bad mannered and ignorant and I have been known to say 'he doesnt do tricks or anything so if you want to look somewhere else you wont miss anything' grin.

Take the DLA take the parking permit and fuck everyone who thinks you shouldnt - they dont live with what you have to.

TheLadyEvenstar Sun 04-Sep-11 17:20:17

I was wondering whether we could apply for a blue badge what are the specifications for applying?

nickschick Sun 04-Sep-11 17:22:20

just realised they werent young kids im well angry now......

Peachy Sun 04-Sep-11 17:29:42

Mine are 11, 10, 8 and 4 3 but the three year old wasn't with me. DS1 and ds3 have diagnosed asd, ds4 obviously (to me) has it too, I manged to lose alittle bit of temper [lush] at a SLT session about remembering to talk to your children recently (I am a dissertaion away from my MA, why did they make me go?) and get him seen more quickly but PAeds waiting list has doubled lately. It's obvious though, with rare exceptions his play skills are mainly throwing and blinking.

TLE many councils now let you apply so go for it- apaprently teh crucial thing is that ASD is a physically caused disability as it results from brain damage. Now, I am in Wales and they are not that sorted yet- physical in my borough has to eman wheelchair. Chnaging apaprenlty but who knows when.

I did mail my cpouncillor becuase only an idiot can;t see that 2, eventually 3 children with ASD is more difficult than one (and the Head thinks ds2 has ADHD but the lcoal Ed Psych- ahem- doesn't believe it exists) but I got nowhere.

I do need to grow a pair. I am thinking about asking uni when I re-enroll (just PT) if I am eligible for their counselling. DS4's regression hit me a bit I think. I did almost lunge at someone who was so busy on her mobile texting she almost sent ds4 hurtl;ing down 4 flights of stairs but that was extreme.

TheLadyEvenstar Sun 04-Sep-11 17:39:22

Peachy, DS1 was only diagnosed with AS in Feb this year at the age of 12.5yrs.

I hope you get what you want in uni !!!

Peachy Mon 05-Sep-11 08:46:53

Thank you TLE

I am glad your ds got the dx, but it's ahrd, hope you are taking care of yourself X

itisnearlysummer Mon 05-Sep-11 09:34:31

Peachy

APPLY FOR THE BLUE BADGE.

APPLY FOR DLA.

If you are entitled you will get it, if the 'powers that be' decide you're not, you wont.

It really saddens me that you would worry so much about this and what other people think. There are a lot of people on here who spout all sorts of nonsense and abuse towards people receiving BBs/DLA, there are also a lot of people who are hugely supportive, if not in that position themselves.

Tbh, the sort of people who would verbally abuse a stranger in the street who is minding their own business and going about their daily life aren't worth bothering with anyway! As you've seen from the comments these kids made, it will make no difference to the sort of person who is happy to do this.

FWIW, my DH pays enough in tax each month to more than cover DLA/BB for one child. I'm sure he'd be far happier to know it was being used for this purpose for your DS than some of the other things it's spent on!!!

Peachy Mon 05-Sep-11 09:50:50

I am not going to apply for DLA for ds4 until we need the cash, if the cuts are made to toehr income then we might have to but won't until then. It actually amkes me feel better about us as a family, wierd I know but there you go.

Peachy Mon 05-Sep-11 09:51:47

(Only on basis that we already get 2 DLAs and we have enough with DHs work etc to cover all bills before anyone takes from that I am judging anyone who does make the claim- I really am not, we get by OK right now is all)

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