Down Syndrome Etiquette

[tweetyfoo]

I’ve been thinking about doing this post for a while. It hasn’t been triggered by anything that anyone has said or done. I have not been offended by anyone. The reason I do it, is because before Aaron, I didn’t know anything about Down Syndrome. I had never come into contact with anyone with Down Syndrome. So, that made me think, that maybe others are the same, maybe they don’t know.

There are a few things that “shouldn’t” be said – mostly people never intend on being rude, but are unintentionally. That’s ok, if you don’t know any better J

The first, and most common mistake made, is that people will often refer to “Down Syndrome Baby/Child”, “we” (the parents and the children) prefer Baby/Child with Down Syndrome – it’s not a label, they are not defined by the fact that they have Down Syndrome. Likewise – a baby, child or Adult is not “Down’s” – i.e. to say “Aaron is Down’s” would be offensive.

Another thing that is often asked, I’m guessing without malicious intent is “Did you not have the tests?” While probably an innocent question – there is an implication here that the person asking this assumes that had the test picked up DS, then the parent would have had an abortion. This one really gets to me.

Babies/Children/Adults with Down Syndrome are all individuals like the rest of us, not a “group” of people. My most loathed phrase is “They are so loving/happy etc etc”. “They” nothing! , aren’t all kids loving (mostly)? Aaron is loving – but he can have a meltdown like the best of them!

When you hear that a baby has DS, some things not to say are

“You can’t tell by looking at them” – Why would it matter if you “can’t tell”
“Oh, thats a shame” – no it isn’t!
“I’m sorry” – Why?
"They don't look Downsie, they must not have it bad" WTF - there are no "degrees" of Down Syndrome, you have it or you don't

There are 3 gorgeous babies with Down Syndrome on the forum (that I know of), so I thought it would be good to share this with all you lovely ladies, I really don’t mean to upset or offend anyone, and I hope that I haven’t.

 

[Samsgirl]

I honestly don't think people mean to say hurtful things. Obviously there are some mean people out there. Then there are people who don't engage brain and then there are those and I am guessing this is most people who just don't understand enough and just say things without thinking.

Can I just say I think you are an jnspiration and your little fella is a wee treasure.

Xxx

 

[clairebear22]

Great post hun! x

 

[busymummy]

I think this is great Tweety. I have even found myself on here at times worrying about sticking my foot in it incase I say something that may offend. So I find this helpful as obviously we would not intend to cause any offence but like you say, if you haven't come in to contact with someone who has down syndrome, it can be difficult to know if you are saying the right thing x

 

[tinks77]

Thanks for this. I suppose if you've never been around anyone with a condition or disability you can try too hard to not put your foot in it that you actually do lol

I for one love Aaron for being Aaron. His cheeky cheesy grin brightens my day. He's one of those children/people that if he was a stranger that smiled at you in the street you couldn't help but smile back rather than think he was a bloody weirdo

 

[Gayle30]

I too think its a great post. I just love Aaron, but not for any other reason than hes just adorable. I love all babies, but Aarons spirit captures me. Probably cause he has such an amaxing mummy whom its a pleasure to get to know. I know it must absolutley kill to hear them phrases/questions. I hope people dont say/do with malice, and rather its just a lack of knowledge and simple understanding. I for one am always jymping in 7's first. So apologies if in the past or future I say anything wrong. I have the inability to think before engaging big fat gob with brain. Lol.

I think you have summed it up perfectly. Xxxxxx

tapatalking

 

[Princess81]

I think it's a great post too, and I agree with samsgirl that people just "put their foot in it". I think the fact that he has already shown his fighters spirit, regardless of anything, speaks volumes x

tapatalking!!

 

[BevG]

i think that can pretty much be applied to any baby with any condition, including birth marks etc. i used to be a support worker and so i know the way ppl can be around any kind of disibility or condition. ppl arent usually saying things like that intentionally and im sure tweety knows that lol its just for anyone who is curious how to speak or act around anyone they might meet in the future.

 

[Karate Kid]

Thanks Tweety, I am constantly putting my foot in it without meaning too. I think awareness of etiquette is always a good thing.

Xx

 

[cosmicgirl]

good post x

 

[l_maclean]

Good post. I know some people genuinely don't realise things are offensive - but some folk are just plain stupid.


Learning "difficulties" bugs me - its a disability!! Especially when it's folk I work with who should know better. X


On my iPhone - so cant see tickers

 

[CARNAT22]

I know I've asked you if you had the testing hun, but not because of the abortion issue but as I was genuinely curious as to whether you were at 'high risk' or not?

I am pretty sure I put a disclaimer before asking along the lines of please feel free to tell me to piss off if I am being out of line (at least I hope I did)

It's hard to know sometimes, I have a young cousin who has DS as you know and I still put my foot in it with my aunt all the time. I am not one to beat around the bush and pussy foot about the issue - Jacob has DS and we cannot change that BUT I am also happy to be shown the error of my ways. If something offends my aunt then she makes sure she tell us. We've all learned over the years together.

Education is key and by spreading the word you are helping opinions change and making people feel more confident around kiddies who have DS.

xxxxxxxx

 

[Lolly85x]

Good post Tweety. I think you've brought so much DS awareness to so many people on this forum
I do agree that some people might just open there mouths before they think what they say, or they have no manners!xxx

 

[tweetyfoo]

Nat - honestly no one has said anything to offend me.

Most of the chat doesn't bother me, as I know its all innocent.

I do particularly despise any sentence that starts with "they" as if Aaron is some sort of Alien

Even when Aaron was in hospital I referred to him as a "Down's Baby" So its been a learning curve for me too.

The testing question, I've had many a mum tell me that when they tell someone their baby has DS, that the response is "Did you not have the testing" that has a very strong message attached to it. I'm quite happy for people to ask me if I had any testing - because I like to educate people on what the blood test is - because tbh I had no clue when I had it done.

There's been a lot of controversy over DS testing in recent days and I have mixed feelings about it - but I'll save that rant for another day

 

[positivity :)]

Great post not only for PF but I will take your advise and use it in future outside of the forum too x

 

[Les1504]

Thanks for sharing this tweety. There are two children with Down Syndrome at the school I work in and I have learned so much just by talking to and playing with them! Both children just want to be treated like their classmates! A lot of rudeness is due to a lack of knowledge x

 

[tweetyfoo]

Another thing to add - and I know it has been said, and I don't want to offend anyone, but I feel I need to share.

Aaron is not any more special than any other baby, he is not a gift from God - any more than any other baby, and I am not a special parent, chosen to have a special baby.

The point is ALL babies are special and Aaron is just the same as all the other special babies, and I'm just the same as all other mummies, and certainly not an inspiration.

I will reiterate, I'm not offended by anyone that has said this, as I know it is all said with the best intention x

 

[MrsHop]

Thank you for this post tweety!

As a daughter of a disabled parent I totally agree with the sentiment that anyone with a disability shouldn't be defined by it. A disability is something you have, not something you are. My mother has MS and TN, it's not who she is and a lot of people never get past that.

 

[fresh]

It's a good idea as even me knowing I was having a baby with DS with all the info from the DSA, it misses off a lot of this etiquette info
I never learnt until I started mixing with other mummies and daddies

 

[fresh]

Even my dad said 'he's not that severe downs' and my mum told us that special babies are born to special parents
I could never say anything as at the time it felt nice and made us feel better

But now I know that's insulting to a lot if people