Tuesday, July 19, 2005

Peculiar Statement

For all those who have a child with Down Syndrome, I ask this question:
Have you ever had someone come up to you and say that your child doesn't look like he/she has down syndrome.

OK, what is your response to that statement? That's just like someone saying to me, your Jewish? You don't look Jewish. Ok, well I am.
That statement always amuses me and I'm certain that I'm not the only one out there not knowing how to respond "PC". It's a statement that just gets tossed out there into the wonderful world and has no place to go. Just thinking about the statement puts a grin on my face.

Is this statement designed to make me feel better about my child? I felt great before.

Your responses please.

PS. For those of you who do not have a child with Down Syndrome, please feel free to respond. I truly would like to know your opinion of this statement and what the appropriate response should be. Is it tossed out to "make us feel better" or is it a sign of someone being a little uncomfortable (which is understandable)? Just know that we love our children with special needs just as much as our typical children. We are not ashamed of them in any way, in fact it's quite the opposite, we are very very proud parents.

16 comments:

Donna said...

B, I've been sitting here for 10 minutes trying to think of how I would respond to that statement, but I can't think of anything.

I would hope that I would never say anything like that, but if I did I think it would be because I felt like I had to say something, but didn't know what.

I hope you get some responses to this.

BStrong said...

Donna,
You got it. When people feel like they need to say something it usually means they feel a little uncomfortable. Thank you for your comment.

Preemie Mum said...

Ok I've been trying to work out how to answer this too, because my son has Autism, & a learning disability - he no longer has any outward signs of a disability ie we've lost tubing, monitors etc. that we used to have when he was little.

The closest we get to that kind of remark is "well you would never believe he'd been through what he has would you??" Like they expect him to have two heads, or 'preemie' written across his forehead!!

I have to admit to having had a family member say "well at least he looks normal"

I do a good fish impression, mouth open and closing whilst I try to work out how to respond to stupid remarks!!

Julana said...

Bstrong,
I have also been caught speechless a few times by these kinds of remarks, coming from well-meaning people.
At first, I was offended. I finally just accepted them as well-meant.
I say, "oh, you think so?" or "thank you," whatever I think sounds unoffensive to them.

I realize they're the ones with problems (of perception), not my child. That's where they are.
I would be interested in Barbara Curtis's thoughts on this, if she ever gets back from her travels.
:-)

BStrong said...

Julana,
I agree. It does catch me off guard. I'm not really offended by the statement, it just throws me back in disbelief.

I guess it's just another odd statement that I can add to the list. I have a feeling that I will one day publish a book on these experiences. It will be located in the humor section at B&N and Borders.

I believe Barbara is back from Denver. She would be a good person to bounce this off of.

Molly & the boys said...

Bstrong- I too get this regarding our sweet son Andrew who is 7 months and has DSyndrome. I feel like saying, "wow, you don't look stupid, but hmmmm I guess you must be!" But, that is what I think when I am feeling cynical. I get that statment of, "he sure doesn't really look like he has DS" a lot. I do wonder where it comes from. Are people trying to make me feel better by saying that he doesn't have "that look."? I honestly think that they are trying to be complimentary, but they have never really thought about what they are saying. I have also had the comment, "he doesn't have severe Down Syndrome features, so does that mean that his IQ will be higher than other Down Syndrome children?" This one stopped me in my tracks. "He has unlimited potential" was my only respones. I then said,"you know, I don't know the plans that God has for any of my children yet. I just know he has great plans for all of them."
Ok, so now I have published a blog on YOUR blog, sorry for that.
My SIL came across your blog and sent me the link since we are 8 months behind you in our family adventure with Down Syndrome. I have enjoyed reading your posts!
take care,
Molly

Julana said...

"he doesn't have severe Down Syndrome features, so does that mean that his IQ will be higher than other Down Syndrome children?"

Molly,
That is so funny. :-)
And just proves the point, people are ignorant, and need patience.
Julana

BStrong said...

Molly,
Thank you for your post. Do you have a Blog? I believe that people think they are making us feel better by that statement. Strangers or people who are not close with my family seem to think that we must be miserable and disappointed about our child with DS, which is obviously not the case. Also, many are still not aware of the opportunities and capabilities of these children. Remember, not to long ago, if you had a child with DS they were institutionalized. For the most part that is still the mind set that people have. Hopefully we can change that perception. There are many Bloggers out there that have dedicated sites for DS, Autism.... in an effort to make people aware that these kids and their families are not really that different from their families.

I have a link on my blog "Living with DS, the Family Experience that you should take a look at. The findings are quite remarkable.

I look forward to hearing from you again.
Cheers

barbara curtis said...

Here I am, late to the discussion.
In the beginning, when people said or did stupid things, and I would start to feel annoyed, I would remember that I was once in their shoes. I was once a person who was a little afraid or uncertain or uncomfortable myself. And to be honest, I still do sometimes when I am around people with disabilities that I'm not familiar with. Do I offer help or would that offend them? Can I ask them what's going on with them? You know, stuff like that.
Having Jonny was as though Tripp and I were intitated into a different realm that people couldn't understand. They wanted to feel sorry for us and make us feel better, and so were puzzled when we tried to put them at ease.
Some people were wonderful, like my friend Sandy who said, "Well, he'll never be President, but that's just as well, isn't it?" I loved that she could crack a joke and be confident I wouldn't break.
Finally, I came to see that in God's eyes we all have disabilities - so many things around us we don't see the way he sees them. I know because Jonny and Jesse and Daniel and Justin (the last three were baby boys with DS we adopted after Jonny was born) have taught me to see things differently.
And I guess the bottom line is they've given me more compassion for everyone, so those remarks just roll off my back nowadays.

Sarahlynn said...

From now on, I think I will try to say something like, "Well, it's only a small part of who she is," if I hear that comment.

More commonly, I hear friends say things like, "When I look at Ellie, I don't see Down syndrome. I see Ellie." And I like that comment just fine. : )

Naomi said...

I've had this a couple times and am never quite sure how to take it. I think people usually mean it in a positive light and it's usually when they have no idea what to say. Most peoples idea of someone with DS is very very stereotypical (and negative) and is based at least 50 years ago. I'm hoping that as people see more and more positive images of people with DS then they're perception will change and they wont see DS characteristics as negative and wish them away.

Anja Huebel said...

Yes, it happened to me again just today. It's usually older women who say it and I suppose in their days having a child with DS was a kind of disgrace to hide. Today I said something like "that doesn't matter" and then went on to say what a darling baby Christopher is.

jotcr2 said...

My baby, Sheena, is 7 months. I have had that comment a few times. Last time I just laughed, because it caught me off guard. In that case it was a genuine, and she had not noticed Sheena had DS even though she'd been staying in the same hospital ward for 24 hours. On other occassions, I think people say it as a way of making you feel better. Other times, when people say, 'Yeah, I realised', that also catches me off guard. Such conflicting messages.

Alice said...

I can see that you posted this question a long time ago but it really struck a cord with me. My son Alfie is only 6 months old and people are ALWAYS saying - 'oh he doesn't look like he has Down's' followed by 'he doesn't have it badly - you can tell'! I normally say "Well I think you either have it or you don't, and he's definately got it". Sometimes I say, ' Well everyone always thought I had Down's Syndrome when I was a kid too' (which just confuses them - but is true as my sister and I both have epicanthic folds and 'the look'), but normally I just say ' yes I think he's the most beautiful baby that was ever born'.
Really good to see what other people have written.
I really enjoy your blog by the way - I'd like to link to it but I don't know how yet. My blog is aliceiscanadian.blogspot.com in case you get a minute (not likely I expect at the moment!) Good luck with your baby. Thanks for the great work... Alice

Anonymous said...

yup, this is what they say. I also get " Oh, is he special", My response is " to me he is" and my all time favorite " God only gives these kind of kids to very special people", lol.

I have lived in this world for three years now, and I get this all the time. How he doesn't look like he has down syndrome.

I thought maybe with time his facial features might change, because of all the comments, but they haven't yet, so I guess it doesn't. Who knows.

When people tell me that he doesn't look like he has down syndrome, I just say Yes, I know, isn't it amazing. What else can you say.

People Amaze me.

Anonymous said...

I'm aware that this is quite an old post, but I recently have been working with children with disabillities. Two of the children at the school I have a entorship at have DS and they are completely different. I don't think that when someone makes a comment like that they are meaning anything by it at all. People who may not know all the details about DS (most of the population) know enough to recognize the facial characteristics that are associated with DS. I think that if your child doesn't stongly exhibit those characteristics, then people get thrown off their gaurd because those facial characteristics are what helps them understand that the child has DS. Make snse? I know that if I made that comment, it would be out of an observation, not to "make you feel better" or because I was uncomfortable. I know that having a child with DS may make you feel like everyone is judging you or noticing you, but it isn't going to be in a negative way all the time. I don't think you should judge people for making a comment like that because it is harmless and not meant to be offensive. As far as a response, all you would have to say is "Yeah, I get that a lot." It's just like someone in McDonald's telling me that I look like Taylor Swift or some other person. I don't have to say thank you to that comment. It's just an observation. The person isn't trying to say that I look like a country singer/songwriter that sounds awful live. There are no implications, it is simply an observation.