AMIBU to hate the idea of a child's T-shirt advertising their diagnosis?

[Arabica]

Hello! Haven't been on for ages but when it comes to soliciting opinion, there's only one place to go for an SN related AMIBU--
My daughter has a rare genetic syndrome and there is talk (on our facebook support forum) of T-shirts to advertise the fact that our kids have this diagnosis. T-shirts that the kids would wear, that is. I have no objection to the parents wearing a T-shirt if they want to.
I feel, very strongly, that putting T-shirts on the kids is wrong, mainly because my daughter (and all the other children that I know of with her diagnosis) is unable to communicate whether she would like to wear it. I also feel it's inappropriate because although she has this syndrome, it doesn't define her--it's only one aspect of who she is.
Would love to know what other people think.

Personally I am not keen on them either , especially the 'I'm not naughty I'm autistic' ones or the aggressive 'I have XYZ what's your excuse?' . To be honest if the diagnosis is rare, it is unlikely to educate Joe Public .

In my area there are cards provided for those who wish to carry an explanation of their disability ..we have them at school (I work in SS) because rarely a member of the public will witness an incident, and we can pass a card that invites them to ring us if they need to have something explained.

Having said all of that.. my son is autistic and learning disabled.. but occasionally shows humour.. on holiday he wanted a t shirt with 'I'm not normal' and a big smiley face on it!! But he is 14 and that was HIS choice:):)

That's fine if it's his choice. I think the parents on the support group are really trying to get attention for themselves--there's a lot of talk about our kids being superheroes because of all they have to put up with, and how special we are as parents of SN kids, which I feel really squirmy about. Maybe it's a US v UK thing.

I get why you might choose to use a T-shirt in those circumstances, but I don't feel there would be a similar need in DD's case.

I hate them personally. I think that we shouldn't have to label them literally in order for people to understand them. People should be treating them decently regardless. perhaps I've just had too many incidents with annoying members of the general public lately.

DD is very sociable and extremely enthusiastic about meeting new people, especially when on public transport. I can see that I might need to explain her behaviour when she looks less like a nursery-age child, but at the moment people just seem to accept her without explanations.

any more opinions gratefully received!

My dd2 was born without her hand so she is immediately obvious, so wouldn't need a t-shirt anyway. However this also attracts a certain amount of attention, a good proportion of which is negative.

I think there is a use for them for a child who may display behaviour that can be age inappropriate, however has anyone found a negative reaction to wearing them. eg another parent seeing your child and removing their child who was playing nicely with yours "in case" something happened, or insisting your child shouldn't be there as a "danger"?

I would also think there's an age it's probably becomes less appropriate. Don't know what age. Perhaps when they become more aware of themselves?

I get what you're saying about the parents wanting attention. In my dd2's condition I have certainly come across parents with that sort of attitude. Where you feel they're displaying their child for attention for themselves. I suppose it comes from the attitude that several people expressed when she was born of "you're obviously such special parents that you were chosen to have her like that" which I found somewhat strange. In that case I'd rather not be "such a special parent" thank you.

personally it's not something I'd want for dd3(6), it wouldn't mean anything to anyone as no one has ever heard of it anyway so it wouldn't explain any behaviour or difficulties that she has. If people have questions I'd rather they just asked than made assumptions based on a slogan on a tshirt. I'd be more tempted to go for something like this atm but that might be slightly confrontational!

Like the shirt Ninja :o

I have used them with dd1 in the past.

we don't really anymore, as she is now a very tall 7 (nearly 8) year old, and so, imo, it is 'obvious' that she isn't just being naughty - and so lemon sucking members of the public can just piss off, quite frankly.

but when she was a bit younger (4 or 5) - when it looked like she 'should' have grown out of these behaviours, but clearly hadn't, we used to use t shirts at times like going through airports or similar.

her shirts usually said something like "i'm autistic, please be patient with me' or "I may n ot understand you if you talk to me" or similar. we found that by 5 ish, she was being addressed by people at check in, or security, and they were expecting her to answer (she did answer, but not usually what they were expecting ). it was just another flag (obviously dh and I would say somehting to secuirty, or cabin crew or whomever) to help ease our journey.

it also helped eg with people sitting next to her on the flight when they were trying to get past - since she clearly had a shirt on saying 'I may not understand you' then it was easier all round.

there are rpobably a couple of them that still fit, and I would not rule out using under similar circumstances in the future. because dd1 does not really display any challenging behaviours, it can be hard for people to get that she is not ignoring them, she just doesn't (necessarily) understand.

Silverfrog, I can see why you found your shirts useful but, as I say, DD (and the other kids with her syndrome) doesn't really do anything (much) that a bystander might find weird and that I couldn't explain myself.

Ninja, great T-shirt! Would suggest it but think they have written me off as a grumpy non-fluffy uptight militant commie atheist Brit already (actually am proud to be all of those...maybe that's what should be on the T shirt)

DeWe, that is totally where they all seem to be coming from. Like there's some kind of cupboard labelled 'Special Parents Only' that the stork goes to when delivering babies like ours. Come to think of it I have read a ghastly poem along those lines, albeit with angels instead of cupboards.

haha arabica, think you may have a tough job fitting that lot on a tshirt

yes, I can see what you mean and why you migth not want to use a shirt.

we found it easier as dd1 used to get very bothered by people talking to her (again, no outward displays of challenging behaviour) and there were times when eg dh and I were frantically unpacking handluggage for security, rescuing a crawling dd2 (since she had been released from the sling for it to go through security...), explaining why we had over-the-limit liquids, taking shoes off etc - and another member of staff would be telling dd1 to go on through the security gate to wait the other side, and she didn't move, lots of people tutting behind us about holding up the queue etc - easier all round if dd is wearing a shirt which explains (when dh and I are otherwise occupied) why she isn't responding.

but we haven't used them in the last couple of years, as she is more able to cope with being spoken to, and so doesn't need the first line of defence that her shirts used to be.

I've seen the t-shirts and they may have been useful when DS2 was younger and less obviously autistic due to age, but I couldn't bring myself to get one.Though Silverfrog's don't sound too bad, less confrontational. TBH, I also hate 'Cheeky Monkey,' or 'Daddy's Little Princess,' as well, so there may be some of that prejudice in there.

My dd 13 asked me if you can buy a tshirt that says you have ASD on it. I asked her why and she said so that when she starts work and they ask for her medical history as they always do then she could just show them her tshirt instead of having to talk to them!!

I hate those T-shirts too, and I wouldn't have put DD in a T-shirt advertising my fave football team either, even though will disown her if she fails to support Leeds Utd

anyone else (would love to hear from someone else whose child doesn't present with challenging behaviour)

Sazale, it looks like I was referring to your post when I said I hate those T-shirts. I meant the 'Daddy's little princess' / 'Cheeky Monkey' ones referred to in the post by Ellenjane

I hate them because I believe we should respect a child's right to privacy. Ds would be mortified had I ever considered alerting Joe Public to his difficulties.
I am a mouthy cow though so when ds was displaying his challenging behaviour I would always have a reply for anyone who dared to comment or stare Now he's not at all challenging but his stims attract attention so I give the starers a tongue lashing about that as well
I just find them too much like the Victorian freak show business. I can't see that they'd attract tolerance because if folks are ignorant then a t shirts not going to alter that but I do think they'd attract more stares and comments instead.

I think it has to be a decision for an individual to make, so there is no right or wrong answer. So make your choice, but don't shrivel up and cringe when you see someone else who has made a different decision to you.
Except for the 'Special angels for special people' lot. That makes me want to throw up. Along with the assumption that parents of a child with SN have extra reserves of compassion and general all-round superhero-ness above and beyond the norm.
Mostly we cope because what is the alternative for our children if we don't?

Fallen "assumption that parents of a child with SN have extra reserves of compassion and general all-round superhero-ness above and beyond the norm." that description is soo far removed from me you wouldn't believe. I've always said to these people who believe "special kids for special people" that someone got their bearings wrong when they sent me mine

insanityscratching has it right tbh. I would no more put a shirt on DS2 saying that he has autism than I would ask DH to wear a shirt that says he is suffering from depression, or someone to wear a shirt that they have epilepsy. Adults with other medical conditions aren't expected to wear shirts defining them as an illness instead of a person, so why should children in order to be "tolerated" by the public in general. This is his private medical information, and nobody else has a right to that info. I've always found it appalling the questions people ask and expect an answer to - and I don't mean simple questions, I mean probing intrusive questions that are none of their business (and that you'd NEVER ask an adult - but for some reason seem fair game to ask about a child in front of that child!)

I have to say, we wouldn't put a tshirt like that on DS, but - he is high functioning ASD (though no actual diagnosis yet - just - wait and see) and he is MOSTLY ok in public. Apart from the odd massive meltdown - mostly what people see is a little boy who is verbal way beyond his years (he is only 4) - so it still has a cute factor, and I don't really have to explain anything.

Yes, well said--it is private, and DD's information to disclose, should she feel the need. Nobody has heard of her syndrome anyway!
I just don't get the 'super-special angel mommy' bollocks.