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lsw146

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Have bought some of these - a badge that says 'I have autism, please be patient with me', 'I'm not naughty I'm on the autistic spectrum' and 'god gives special children to special parents for a special reason'. I've also bought a chamr bracelet from Ebay with the autism awareness ribbon on (in silver) and lots of people comment on it - it gives the opportunity to explain too. :thumbs:

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what a fantastic idea! i will definately be getting one of these for my little guy. he hates people touching him, especially people he doesn't know. these will help him when we are out and about B)B)

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I was looking at the rubber wristbands they are selling on ebay but I was put off by the fact that they didn't seem to be donating the money to an autism charity, I don't want to line someones pockets with profits at their expense.

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Thats true - a lot of them aren't for charity, but they DO help raise awareness. Maybe some of us should start our own ebay shop and donte the proveeds to NAS. I'm currently doing a sponsored slim for NAS (and I NEED to do it too :tearful: ) so am doing my bit!!!!!

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I would love some of these (badges) for my Ivan, but I'm sure he would object to wearing one as he finds new clothes very upsetting- I bought him one of those Thomas tank engine zip pulls and he refused to wear it (despite trying on and off for several months). Those window stickers ( Emergency Alert, Occupant With Autism May not respond) are a really good idea- I will definately get a few.

 

Great link, cheers B)

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Ah, no... I HATE doing this...

I really should learn to keep my gob shut sometimes; but i really., really struggle if it's something I care about...

So APOLOGIES upfront...

I have no problem with the 'I have autism, please be patient with me' badge (well only the fact that it's a very obvious "label") but i don't like the other two badges mentioned AT ALL.

"I'm not naughty, I'm on the autistic spectrum": Ben has certain behaviours that arise as a consequence of his Autism. He also has some pretty bad behaviours that arise purely because he's an eight year old boy. I can't tell where these behaviours begin and end, and I can't identify the crossover points where one set of imperatives impact on the other, but I do know that 'blaming' it all on autism is a direct route to disempowerment and disenfranchisement, and that the long term effects of 'enabling' such perceptions isn't going to help anyone on the spectrum to achieve anything...

"God gives special children to special parents for special reasons": So what about those parents who AREN't 'special', who can't cope and are begging and pleading for support services that aren't there. Are they being 'punished'? And if so, what does that make their kids: instruments of that punishment? Heavy burden to lay on a child, in my opinion, and an almighty crushing blow to parents who might already be feeling pretty lousy about themselves WITHOUT good reason, purely because parenting came with some additional responsibilities they weren't anticipating...

ALL children are special. The label 'special' (as in special needs) is one that can do as much harm as it does good if it's applied in the wrong way. I think I am a 'special' parent, but i don't think that has anything to do with Ben's ASD, and in some ways I'd probably be able to do a better job of being 'special' if some of the pressures that ASD create for us weren't there. Whatever Gods special reason was, I wish he'd share it with me... or is he just using me to pander to his own vanity like he did when he tested job? [if HE considers that blasphemous, he's not the stand up guy I like to think he is, by the way]...

 

So, again apologies to anyone I might have offended, and believe me I'm not trying to tell anyone they are 'wrong' for holding a different opinion to mine. I'd just be doing myself a diservice if i kept my gob shut on this one, 'cos i believe emphatically that the road to empowerment demands compromise and understanding and acceptance of difference without the need for explanations and labels, and certainly without the need for an implied divine agenda.

L&P

(and sorry again)

BD :D

PS: I said it a while ago, I don't get my horse out very often, but isn't he a tall one!! ;)

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In recent months i have bought a couple of autism awareness bands and a few of the silver charms. I wear the charms on a heart necklace my son chose for my birthday last year. I also bought a couple of charms for his one 2 one teacher at the end of term, but luckily she is moving into yr 3 juniors with us. :)

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Baddad, I agree with what you say. It also worries me that a badge declaring a child is Autistic could leave that child vulnerable to people who want to pray on children. I do however think if worn whilst an adult is present it can be helpful to child and parent. It could make some less confident parents feel more able to mix with people more easilly.

 

Viper.

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Baddad

 

didn't take any offence and agree that some of the statements could do more harm than good.

 

That is why I thought of pinning a badge on the inside of her jacket so that if she is out and about and suddenly having a bad time that she finds hard to explain then she has a fall back position. each kid is different though and changeable. At the moment B is wanting a diagnosis and likes the explanation of AS she finds it soothing? and wants to talk about it with close freinds and family, a badge might just help them remember to change their approach without us constantly having to repeat ourselves.

I have bought one badge for her that says

You're looking at me because I am different I am looking at you because you ugly

 

Once I explained the humour behind it she wore it to school and when she was paranoid that people were looking at her she felt better that she didn't have to comment the badge did it for her.

Bit cruel but just getting a balance I feel!!??

Edited by lsw146

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:clap::clap::clap: Well said Baddad.

 

I remember going to an SEN conference where the guy speaking was the Head of SEN in our region. He began his speech by saying that 'Special Children' were born to 'Special Parents' at this point one Mum stood up and said rubbish - well not really but you get the idea :lol: She said that she had not gone to be patronised and many of us agreed. Some Parents even got up and walked out. One Mum asked for the sick bucket :sick:

 

I also clearly remember seeing a wonderful lady speak at a different conference. She was with a leading Children's Charity for the disabled. Having worked with disabled young people for many many years she said that children with SEN DO NOT want to be 'special' they want to be like everyone else and most hate the label.

 

I have tried hard to remember that one and I have to admit that my youngest certainly does not want to be 'special'

 

I do not know that I personally hold with wearing anything and would not encourage either of mine to carry rude and potentially volatile messages to show others that could ,in my opinion, lead to even worse bullying.

 

I do however carry an ASD card and have used it. Only last week in fact at the Tall Ships race when we were caught up in the Parade of the Sails, which Matthew was loving, until he realised that we were well and truly stuck in the Parade with no way out. He went white and began to panic and melt down. I went and gave the card to a steward, who within seconds found us the 'out clause' qickly and quietly. Matthew felt better and did not feel 'special' because it was done without any fuss. But he did know that we had used the card.

 

Carole

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Thanks Carole. You're right about the potentional of further bullying from an inappropriately used mesage.

Only advantage over pinning a badge on the inside of a jacket is that my daughter can't mispalce it as easy as a card but as I am still undecided as to how she would use any tool like this (i.e as a crutch to make a fuss or as a 'get out' when things where going wrong) I haven't made any purchases.

Still on the upward climb of the learning curve (do you ever get to the top?) as not had diagnosis yet and feeling in limbo whilst trying to move forward.

A little humour can go a long way.

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People are often amazed when I say that we live in a house with loads of laughter. But we do. Yes we have some pretty grim times to so all the more reason to make sure we have some fun.

 

There is humor living with autism and we have a rule in our house that we are all fair game and up for laughs, so long as we laugh with someone and not at them. Suprisingly it works, although I doubt that it is very PC. :lol: Vistors can find it a bit strange when David announces that he saving for a limited edition of whatever and is doing so to feed his compulsive and obsessive needs :o

 

Carole

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the best line from my daughter recently was when I asked her how one of her dances had gone because I had misse dit through work and she said

 

"It was okay from the head up but the neck down was a bit iffy"

 

A joke that actually made sense and could be laughed at spontaneously was such a revalation.

 

Of course now she outside obsessing over her Geo Mag and the fact that she can't contstruct the Eifell Tower before tea :lol::huh:

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Totally agree Baddad! I also hate the way that a lot of American charities seem to be obsessed with 'curing' autism - what is wrong with a little understanding for them in the meantime??? I also think that we could be in for a lot of different problems if we just suddenly took their autism away, post traumatic stress anyone? Can you imagine suddenly thinking and seeing a completely different way, how would you understand that? Just a theory but if your life suddenly changed, your brain was altered so you thought differently and saw the world differently, how would you feel? I'd be pretty freaked out by it for sure!

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Phew -

relieved to find i'm not the only one...

One thing I AM all for is raising awareness about autism, so stuff that does that (like the wrist band that prompted a discussion etc) is great. I just don't like stuff that promotes autism as some sort of elitist 'club', or that implies some sort of superiority. These are exactly the sorts of attitudes that do our own kids so much harm when 'NT' society is held up as the model for them to aspire to.

As far as humour goes, Ben and I thrive on it, and there are no taboos about either ASD or NT 'stereotypes'. Knowing 'yourself' is a warts-and-all process, and how can you overcome something if you're in denial about it in the first place?

One of my favourite 'autism' things is the old 'Active but Odd' definition of Lorna Wing's - a fabulous T.Shirt slogan from the point of view of a conversation starter, but SO open to interpretation. I have yet to meet anyone who's not idiosyncratic enough to fit the bill, or any one yet who would feel comfortable with the label 'Active but Entirely Predictable' which, to my mind, would seem the only possible opposite number.

Sorry... waffling...

L&P

A very Tired (and therefore waffly)

BD :D

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Hey Baddad - do seem to remember you mounting that horse during a previous discussion we had :lol: Did just want to say that this time I agree with you B)

Luv Witsend.

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Lucky me I have one of each 'Active but Odd' being Matthew but he is odd in a very cute way :wub: and Active and Entirely Predictable' which is my professor David and yes I :wub: love him to.

 

Carole

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So tired had to reset password for 3rd time before logging on!! wish I had my daughters memory.

 

Quite often reply to the "but she is lovely isn't she" type statements by saying I would never take away the AS because she wouldn't be the B we love.

 

Read on another link about the gift of AS and every day I see something new in my daughter which may or may not have been there without the consequential problems but are more likely to be because of the different perspective she has on the world and it can be really beautiful.

 

Jo

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I hate the responses you get when you tell some people they have ASD

 

'ahhhh an they are so gorgeous too what a shame'

 

'ohhhh she'll grow out of it, I know so and so who had a kid like that and they are totally normal now' - WHAT???? :wacko: Or was that just my nutty neighbour?

 

Not to mention the ones who try to talk you round if you say they will have this disability for the rest of their lives - I'm not talking doom and gloom here, it's just a fact! :rolleyes:

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Sorry if I got anyone's back up. My son is VERY recently diagnosed and I think part of my acceptance of this whole thing is to try and protect him.

 

I bought these items so that people don't stare and make me (and therefore him) feel worse.

 

Totally take the point that it may encoruage people to pray on vulnerable kids and didn't consider that view before so thanks.

 

I'm just trying to do the best by him - I've never known anyone with ASD or AS so am finding my feet slowly.

 

Its also a weakness of mine that if something is not quite right, I throw money at it, and I guess thats part of what I've been doing.

 

Sorry - didn't want to make waves.

 

:unsure:

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Just a final thought re: "Special" kids. Don't want to be controversial but my son IS special, as is my daughter. One has ASD and one doesn't but they are MY kids so whether the 'special' indicates special needs, or simply just special to me, is almost irrelevant.

 

I'm seriously deflated now.

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Don't feel bad, TM...your opinion is just as valid as any one else's, even if it's different >:D<<'>

 

It's a difficult time just after a diagnosis, and I'm sure none of the posters here would want to make you feel bad.

 

I think the reason many of us find the 'special parent' thing difficult is because it's so often used as a way of fobbing us off and not providing the right support.

 

I think it's a personal choice whether to use slogans like 'Autistic not naughty'. It would never have been approprite for my son, but a friend of mine (years ago now) had some printed for her son who was non-verbal, and she found them very useful.

 

So...there are probably just as many members who agree with you as agree with Badders!

 

Take care, and don't feel down >:D<<'>

 

Bid :) (fleeting visit home before off on hols again!)

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TylersMum,

 

Bid's right, there's no need to feel deflated, just because you don't agree doesn't mean you are wrong. We are all entitled to our opinion.

 

Nellie >:D<<'>

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Tylers Mum - so sorry if I have upset you. >:D<<'>

 

This is one of those topics that we all have different opinions about and that is B) because we are all different. Hell all three of my kids are extra 'special' to me. But I can understand why a child would not want to feel different. So I agree with Bid and Nellie because parents are often fobbed off after professionals use the word special. I really am sorry if I have upset you :(

 

Carole

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Thanks - I just felt really bad that I got it so wrong, in some other ASD parents views. :oops:

 

I am still struggling BIG TIME with other peoples views of him. In Tesco's about a month ago, one cashier coughed loudly to attract the attention of 3 of her colleagues then nodded towards him, when Tyler was in full screaming fit mode and they all just stared at him like he was an alien, then scowled at me because I obviously couldn't control him.

 

I was so cross that I didn't explain. I really felt she didn't deserve an explanation but for those who are a bit more sensitive, I just thought a badge might be helpful. :(

 

On a slightly more sensible note, there is a great site http://www.kidsbands.co.uk/ which sells paper but unbreakable bands. I bought some of these, and they have fab funky designs, which the kids wear on their wrists (and I mean ANY kids!) and they have contact details on them. They don't come unstuck, you have to cut them off with scissors and they don't irritate my daughter who has sensitive skin.

 

Such a 'peace of mind' product for days out, and mine love choosing which design (although it is usually the crocodile ones).

 

Thought it might be nice to finish this posting off with something that might be useful :D

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I think it is all a matter of personal judgement really, something may work for you that doesn't for other people, we weren't criticising you personally, but there are reasons that some of us would choose not to have the tshirts and stuff.

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Fair comment. And I think that it depends on how high/low functioning your child is, on how you manage them/yourself, and how you feel about other peoples views.

 

The other thing is, these things can change over a course of time. I've noticed a lot of the postings say that people get used to ignoring the stares of others - I'm certainly not there yet.

 

Not sure I'd put Tyler (or myself!) in a t-shirt but a badge seems to help both him and I, for the time being.

 

I felt like I had started something (completely unintentional) that had made people a bit cross. I was so pleased to be able to be part of this site, I didn't want it to turn into some kind of unnecessary debate. I love being able to bounce things off other parents that understand and I don't want to detract from that.

 

We are all involved with ASD/AS in some way, shape or form and this forum has already provided me with some much needed (and appreciated) support. :thumbs:

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I feel the same as Tylers mum. I wish that I had the unawareness that my AS son has. As far as he's concerned everyone wants to be with him, talk to him and listen to anything he has to say. As friend says that she wishes she had his unselfconsciousness (is that a word?) I wish I did too. I am still struggling with the looks we get during meltdown, the tuts and me feeling that I have to apologise for any 'bad' behaviour. This is not his problem it is mine. I hope that with time I will learn to ignore what other people think :pray:

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TM >:D<<'>

 

Don't feel excluded from the forum!

 

If you're worried about this thread, you should take a look at some of the ones starring Baddad! :lol::lol:

 

Sometimes we disagree here, but we are all 'happy to disagree', and the bottom line is that we all support each other >:D<<'>

 

There's plenty of room for different opinions on our forum :thumbs:

 

Bid :)

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TM >:D<<'>

 

Don't feel excluded from the forum!

 

If you're worried about this thread, you should take a look at some of the ones starring Baddad! :lol:  :lol:

?!?

 

Hi Tylers mum -

 

As I said in my original post, I wouldn't tell anyone they were wrong for having a different opinion to my own... God, the world would be a boring place if everyone saw things exactly the same way, and i suspect the human race would have given up evolving centuries ago to boot!!

 

Please don't take anything I said to heart - it's possible (but very very unlikely ;) ;) :devil::devil:) that I am actually wrong...

Fact of the matter is we are all just parents trying to do what we think is best for our kids, and there ain't no rule book on that, so we can only do what we feel is right and see how it pans out in the long term.

 

And as for you, bid, :shame:

Thought we'd seen the last of you for a while: Wheres MY STICK OF ROCK??

L&P

BD :D

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hi all, you should try this website its address is www.buttonsandmore.com it sells all sorts of autism awarness stuff thats very inexpensive it is an american site run by a man named richard who as a daughter sarah with autism all his items sold go to raising money for autism research i have being buying from richard for over two years now hes a fantastic father and his items say it all he has just teamed up with the lady selling on ebay however she sells the products at a more expensive price and doesnt donate to charity allso richard has a lot more choice and is very prompt with delivery i definatly recammend having a look at his web site also if there isnt a badge on there that appeals contact him and he will make you anything you wish, ill say the address once more cause i cant do links its www.buttonsandmore.com hope you like the site big it up for richard hes a good guy :thumbs::thumbs::thumbs:B)B):notworthy::notworthy:

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Hi everyone

 

what started off as innocent certainly brewed up some trouble and did go to bed not long after posting the original topic and reading some replies feeling bad BUT I came to realise we are all wanting the same the best way for our children to be as happy as possible and that means finding the tools that are right for our children and there environment.

 

We were out at a family lunch today and B was brilliant but the waiter kept making jokes about her food not being ready or available or that she would have to do the washing up etc B's response (as you can imagine) was slightly alarmed but at the same time not reciprocal. I really wanted to say please stop because B doesn't get it. The only reason I think she didn't flip is because the rest of the family reacted to the joke positvely and she knows our body language etc better. I think I am just looking for a simple way of B being able to help others understand her lack of reciprocity etcwithout appearing rude and being shunned.

 

Tylers-Mum

 

you offered me some great advice on another post and I wish you loads of strength now you have your diagnosis.

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Has anyone got Autistic card from NAS , I've found that pretty useful as well and don't forget the group in ebay that is welcome to people, it's called Autism , I have posted a link on another thread , so pop along and give us a try !

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i have to say i feel pretty well...... on the fence i can see good and bad sides to these "trinkets" oh and by the way BADDAD! such big words! i am only of simple mind! :wacko:

:lol::lol:

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