FEBRUARY 18, 2011 1:43PM

Today I Learned Something About Down Syndrome

Rate: 28 Flag

I'm sitting at Starbucks (that's a worldwide chain of coffee shops), checking email, making phone calls, "sipping my triple tall non-fat latte," and thinking about the fact that people with Down Syndrome make me uncomfortable.

My fear is that if I make eye-contact with a Down Syndrome person they will talk to me, I won't understand them, and then I'll feel embarrassed. (Yes Virginia, this phobia is "all about me").

So this particular Starbucks employs a young woman who has Down Syndrome. (I was going say "is afflicted" or "is a victim" of Down Syndrome, but my lack of knowledge of this syndrome leaves me wondering if "afflicted" or "victim" are appropriate descriptions).

The young woman's job is to dust, sweep the floor, clean the display case, bus the tables, and water the plants.  She goes about her business with extreme diligence and a broad smile.

So I was sitting there working on a quote for a customer, when my fear became a reality.  The relative quiet of the establishment was broken with the words, "So how are you doing today?"  I glanced up to see the beaming young woman looking right at me.  With a small amount of anxiety I replied, "I'm doing great.  How are you?" 

It seems impossible but her smile got even bigger.  "I'm great too but thank God it's Friday."  With that she waved and walked off to continue dusting the Tazo Tea display.

"Thank God it's Friday?"  Did she really just say "Thank God it's Friday?"  Does that mean that there's a discernible  difference between this day and any other day in her life?  That perhaps a Saturday spent with family or friends, or by herself, is an appealing alternative to working her shift at Starbucks?

Does this mean that she doesn't just meander her way through the day oblivious to what's going on around her?  She has good days and bad days... not just "days?"

I am beyond guilty of not understanding the nuances of life that a person with Down Syndrome experiences.  It never occurred to me that she would have a thought like "Thank God it's Friday."  I assumed that every day was the same for her and others with Down Syndrome.  In my ignorant mind they seem blissfully disconnected from the challenges of day-to-day life. 

I realized at that moment that I know nothing about Down Syndrome and I let my fear and assumptions dictate how I would interact with people like her.

She walked back to me, carrying a tray of Dixie Cups.  This time I noticed her name tag:  Stephanie.

"Would you like to try a Caramel Apple Spice?"

"Sure."  She stood, waiting for me to taste the drink.  I did.  I didn't like it.

"How is it," she asked?

Up until about five minutes ago I would have avoided telling her the truth, fearful that I might hurt her feelings or confuse her.

"Actually Stephanie,  it's too sweet for me."

"Yeah, too sweet.  I don't like them either."  She strolled over to the next customer.  "Would you like to try a Caramel Apple Spice?"  She points at me.  "He thinks they're too sweet."

Stephanie walked back to me with a look of slight embarrassment.  "My name isn't Stephanie.  It's Amber.  I left my apron home and had to borrow Stephanie's."

I'm glad that I met Amber.  Maybe now I will ignore preconceived ideas that are based on nothing other than vague, uninformed impressions, and realize that the Ambers of the world, just like me, can't wait until the weekend arrives.

Or maybe I'll just continue to meander through the day, oblivious to what's going on around me.  I have a lot more practice doing that. 




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ignorance, down syndrome

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Thank you for this very interesting and confessional vignette. Actually, the point of generalizations of this very same topic is driven home in a Family Guy episode where Chris dated a girl with Down Syndrome. Sarah Palin's reaction was very revealing of her character. If she takes offense to an animated show's joke with plausible deniability that it was about her, how would she perceive the Ambers she may encounter?
Enjoyed reading your article. A refreshing bit of honesty. Many people fear or ridicule what they don't understand. When I became the very young father of a son with Down Syndrome I knew nothing at all about what kind of challenges and future he would face. But ignorance is not the same as prejudice and over the last eighteen years my son and I have both learned a great deal from each other.

Trey Shaver
Editor, Down Syndrome Today (www.downsyndrometoday.com)
Thank you all and Trey, I especially appreciate your comments. When I posted this I hoped that people that have family members with Down Syndrome would understand what I was trying to say.
Great post which touches on something we all may feel about a condition we know nothing about. I'm glad you were open.
Way to go, Amber, she kind of helped you grow a little.

Wow, this is something I can definitely relate to. When my family bought a new house in Utica, NY decades ago, when we went to look at it, there was a 35-year-old man with Down syndrome sitting on the living room floor making a huge structure out of building blocks, with bridges towers, very intricate. In the attic there was a huge train town that I imagine had been built for him. The only other developmentally delayed person I had known at that time was a man in our old town who would march in parades yelling nonsense about Army-Navy football games. He was huge with large gangly limbs and big blue eyes. He lived alone with his mother in town. This to me was mental retardation and it always made me a little afraid. Now I know a girl who rides the bus and she doesn't have Down syndrome, but is definitely developmentally delayed. She is so funny and sweet though. We talk every time I see her. She told me one day that it was her mother's birthday and how she had died a year ago. We talked about that for a while, a truly meaningful conversation. Another time I got on the bus with my son, she greeted me and said "He's got a date tonight, it's his birthday," referring to the bus driver. The bus driver laughed and said I just mentioned it to her and now the whole bus knows. We joked about how it would be on the internet or the local news, and had a lot of fun. She explained to me once about the new Panera Cares which just started in Hollywood. She has a great sense of humor, and though I feel I know her, and always speak to her--about all kinds of things, I don't think I remember her name.

When I think of how things used to be for people like Amber and the man who used to live in my old house, I'm very glad we live when we do, even though it's not exactly the best of times. I should have written my own post, I guess, Sorry.
This put a big ol' smile on my face, Roger. Thanks a bunch.
You are honest and that's no sin! Zumapick!
I suggest you read Martha Becks book about giving birth to her Downs Syndrome son in her twenties. Great book!! Great story.
Thanks for a great post. I think we all fear what we don't understand. I had a learning disabled cousin and now that he's gone, I wish I had been a little kinder to him.
What a nice post Roger. I think the message is that you treat everyone with dignity, courtesy and respect from the outset. If they demonstrate that your trust is misplaced then it's time to re-evaluate. We once had someone like that helping out on a political campaign but so as not to derail, I'll blog about it one of these days.
You know, this really pissed me off. It's so obviously about your ignorant and insulting assumptions.

Your remarks suggested that you felt, whether or not you acknowledge it is, that because she visibly has a syndrome associated with mental retardation, she has nothing in common with you. Perhaps not even common humanity.

Imagine how she feels every time some ignorant jerk treats her as unworthy of the common courtesy due to a fellow human being because she looks different.

Do you really need to be told that even the handicapped are people too? What does that say about you? I hope you ask yourself that question.
Malusinka, That's what the story was about... me acknowledging my "ignorant and insulting assumptions."

Thanks all!
( ...sheesh - that was almost wilfully missing the point ... )

Roger I thought this was great. You captured perfectly the fear and the surprise so many feel around those who are different.

A beautiful slice of daily life to go with the coffee. Thank you.
I stumbled across this and felt compelled to comment. I am the very proud mom of a little girl with Ds. I knew nothing about Down syndrome before her birth. I am pleased to say that I am not quite the expert. Emily is the light of my world and the greatest teacher I have ever had.

I hope that more people take the time to realize that those with Down syndrome really are just like the rest of the world. They have good days and bad days, as we all do. I appreciate your honesty.
Roger you are the biggest Sweetheart - your chagrin was palpable here and it could not have been easy to write. I'd say the responses from Trey and gwacemom demonstrate that you acheived that which you set out to do. I guess I grew up with several DS kids around, and it never occurred to me that people think like you do, so I am educated today too :-)
Thanks for this! As the mom to a little girl with Down syndrome, it is nice to hear about when people have these kinds of revelations. To the woman who found this insulting, I can't disagree more! Roger himself acknowledges his prior preconceived notions (he even tags the post with the word 'ignorance'). I would be lying if I said that before I had a child with DS and began meeting and interacting with other people (adults specifically) with DS, I didn't have my own misguided ideas of how those interactions would progress. Thanks for your honesty, and I hope you will hold this nugget of new knowledge closely. It means a lot. Should you come upon another person with DS who does not speak as well as Amber, remember simply this. S/he is a person. Be honest, be kind. There are other ways to communicate. Thanks!
Another mother who has a daughter with Down syndrome ... great article! Thanks for being open and honest about your preconceived notions and insecurities; and allowing yourself to learn a little something about Down syndrome. The reality is people w/Ds are 'more alike than different' and I'm glad Amber was able to show you that. I also appreciate the fact that you questioned whether you should even say 'afflicted with' or 'a victim' of and I'm pleased to see that you didn't use either. People who have Ds are definitely not victims. Another one that makes me cringe is "suffering from" - my daughter is not suffering. What you said "has Down syndrome" is exactly right. It's something Amber has, not who she is.

Maybe next time you see someone with Down syndrome you'll be the first to make eye contact, smile, and say hi!
Another mom here. My three-year-old daughter has Ds and let me tell you, I smiled when I read this piece. It made me happy.

It's not about everyone being perfect all the time. Because we're not. None of us are. It's about learning when there are lessons to be had. I feel like you did that here and you've presented it in a very honest and heartfelt way that I can appreciate very much. For that, I thank you.
I commend you for being completely open and honest. I have actually known many people with Down Syndrome over the years and even have a good friend with a son with Down Syndrome who will be attending college this coming fall. While I would have no problem speaking to someone with DS on a regular basis, I can easily see where it may be intimidating when you are not in contact with people with DS regularly. Hopefully this is just a first step in your ability to reach out to even more people! Good luck!
I have an adult daughter (24) with Down syndrome. I found your blog post refreshing---and honest. I think many people feel as you do.
They just don't know.
They don't know that people who have Down syndrome go home to loving families/friends/pets. They have social activities, travel and have hobbies. They love to dance, play video games...and yes, have bad days.
They get sick. They have dentist appointments. They have to deal with mean, ignorant, bullying people who want to tease and taunt.
BUT---you took the time to actually get out of yourself and your insecurity to look beyond the face of Down syndrome...and see that Amber is just like you and me.
To every parent who has a child/adult with Down syndrome in our lives---you have made our day. :-)
Wow! Thank you for your honesty and for allowing Amber to penetrate your walls so that you can see how people with Down syndrome are more like others than not. I have a 3 yr old son with Ds and he's an amazing little guy. He may not know Friday from Monday yet, but he sure is smart. I love that your post has gone "viral" in the Down syndrome world on Facebook. You've taken that first step into seeing how wonderful people with Ds are and that they don't just wander around oblivious to the world. They contribute to society and help remind us that there are people with different abilities all around us and that makes the world a much better place. I hope you'll visit Amber again. She sounds pretty cool. And by the way, you hit the nail on the head... people with Ds don't suffer, aren't afflicted or aren't victims. They just have something extra you and I don't have... an extra chromosome. :-)
Well, all the way from Portugal I read your article with a huge smile on my face. I have a 5 year old daughter with DS and I've been very active with the portuguese DS Association precisely because I really believe that these kids can go much further than we think.
I am absolutly sure that I have an "Amber" at home and that she will be up for great projects in the future.
The surprise you faced today, I do face everyday at home.

(and I did have to register on this website in order to comment your article, so it means that I it was really great)
While I don't pretend to know everything about Down syndrome, having only been on this journey for 15 months... what I have learned is that Ds doesn't define my child. The birth of our 10th child, Lily, opened our eyes to so many things...not the least of which was the beauty of others who also possess her magical extra chromosome.
If you have time, I'd love for you to take a peek at a montage I put together last month...our kids are pretty amazing.


Thank you for being honest here...because I felt the same way before I had Lily:)
Wow, awesome post! Thank you for sharing your thoughts here. I have a son that is almost 2 and he has Down syndrome but before he was born I would have felt exactly the same. Avoidance. I wouldn't want to get in an uncomfortable situation, what if they did something strange or caused a scene? I really didn't encounter many people with Down syndrome growing up but probably because I didn't pay attention.

Such a refreshing story as it shows others that people with DS aren't all that different and it also gives hope to parents of these individuals. I want my son to have a job, to carry on a conversation and to just be accepted. So thank you!


Thank you for sharing this. I have a 4 year old grandaughter with down syndrome. This brought tears to my eyes, if only more like you could share the good stories and not so much the bad. Our children with down syndrome are so much more like others than they are different and stories like this might have others look at down syndrome in a whole different light. My grandaughter is the joy of my life and I could not dream of her not in it.
I'm the Mom of a 2 year old girl with Down syndrome.My daughter is amazing,she has opened my eyes,mind,and heart to people who are differently abled. I'm so glad that you allowed Amber to show you how normal people with Down syndrome are.
Thank you for being careful with your wording about Down syndrome.I wish more of the regular media were so careful.My daughter is in no way afflicted or the victim of Down syndrome.

I blog about my daughter at http://www.cheryl-rubyslife.blogspot.com/
Wow. Could we just have everyone read this?? If everyone were to THINK about this and act on the conclusions, how much easier this world would be, both for those who deal with disabilities personally and in their families!! And thank you for not only thinking about it, but writing about it so others can think about it! Here's wishing you a few new friendships with people you may have been uncomfortable with before...
Oh, yes...one more thing. Everyone think about the "invisible" disabilities as well--I am the parent of a child with autism, and it is completely understandable to me how people can feel uncomfortable around him--he isn't very predictable, and his behaviors can bother people--but it's such a blessing when people understand, or try to understand, his interests and point of view!! Thanks again for this piece...
I'm so grateful for all of the very positive feedback on this piece. Thank you all very much!
Hey Roger

Just thought I'd add to the positive comments you have received. No parent who has a child with a disability would be anything other than thrilled to read your post. We can all learn from those around us, some of us are lucky enough to learn from those that others dismiss.

Just thought I'd add that your article has made it to Australia and yes I also have a daughter with DS she is 6.
I find your honesty very refreshing. I am still learning about Down syndrome and I have the best teacher... my five year old son. He makes me laugh every day and has such a zest for life! He looks at all people without judgement and accepts them for who they are. All I ask in return is that people accept him for who he is ... a beautful human being!
My mother was phobic of DS, and similar, and so we were raised with unreasonable fears, like yourself. Amber is really high functioning, whereas the sister of my friend is not. But, with her other issues like OCD, and depression, she still shines (now at 45) as very friendly, lots of chatty how are you's, and always very involved in her friends and social group. She always has a boyfriend, with a gift for getting even the most withdrawn dev. disabled guys to talk to her. In no way meant to be dismissive, the hobbit village in LOTR reminded me of what a village of DS people would look like, laughing, friendly, kind, always hugging and sharing and smiling and eating. Not too bad to not know friday from sunday if all days were good like that.
Thanks for writing this. I am the mother of 14 month old identical twin boys who have Down syndrome. My greatest joys in life have come since they were born. Though I was completely unprepared to hear the words 'Down syndrome' after the delivery of my sons it has not only changed me, my life and my outlook on EVERYTHING it has also cemented my belief in the general goodness and kindness of perfect strangers.

I have been blessed to meet many families of children with Ds, many people who have Ds and many more than have no idea what to think of Ds. Your experience with Amber is amazing and brought me to tears.

Thank you for not being afraid and for opening your heart and mind to the idea that people with Ds are more alike us 'typical' folks than they are different. Now that you know your life will surely be far more enriched.

Have a wonderful day! Please know that I am going to repost the link to this for everyone to see- it is a beautiful piece and it should be shared.

Sincerely, Meghan Wilkinson proud mother to Casey and Connor.
Roger, this is a wonderfully honest post, and teaches a profound lesson about interacting with people who somehow we can perceive are 'less than' ourselves. Good work. Thank you for sharing. Am posting to FB.
Thank you for your candid thoughts. I think fear of the unknown, whatever the circumstance, makes most people cringe. It is human nature. As a parent of a 23 month old with Ds, I was pleasantly surprised to see common sense exercised when referring to Amber as a "young woman who has Down syndrome" as opposed to "Downs girl", etc. I applaud you for having the cajones to post such a taboo topic, especially at a time where 90% of babies with or with even a chance of having Ds are aborted. Your words mean more than you know.


I have a child with Down Syndrome. HE's the best thing that has ever happened in my life! When I first started reading this I had no idea where you were going. You are correct to not call DS an affliction and Amber is not a victim. She was just born that way. I apperciate the article. There's nothing to be afraid of when you meet a person with DS. Just remember they look at the world a little different then most. You may want to go back and have another conversation with Amber. She may teach you a few things about life no one else would or could.
Whatever is strange to us is strange to us because "we just don't know." For most of us, becoming more comfortable with something foreign takes an experience or encounter to provide a little insight that can blossom into illumination. For some, it's meeting a girl named Stephanie whose name is really Amber who is really glad it's Friday while she's working at Starbucks. For some, it's having a family member with something that previously made us uncomfortable but who now is a regular fixture in our lives who is, well, actually pretty regular. For me, it was having a little boy named Larkin. I hope when Larkin is older, and he reaches out to someone who's maybe a little uncomfortable, that someone will be like you. The best testimony comes from someone who's been there, done that. Thank you for sharing yours.
As a mother of ten children whose youngest child has DS, I really appreciate this article. I think we tend to fear what we do not understand and ignorance breeds prejudice. If more people would step out of their comfort zones they'd realize that people with DS are human beings with feelings, talents, and dreams. We need to see them as people, not as chromosome counts. We need to educate each other. For this reason, my third novel, "The Upside of Down," includes a subplot about DS. I'm hoping that those who read it will come away with a little more understanding of a genetic condition that affects 400,000 Americans.

Thank you, Roger, for being willing to risk a part of yourself and in so doing, realizing a truth and then sharing that truth with others--that's how we will break down the phobias and make the world a better place for those with DS. Thank you!
As a mother of ten children whose youngest child has DS, I really appreciate this article. I think we tend to fear what we do not understand and ignorance breeds prejudice. If more people would step out of their comfort zones they'd realize that people with DS are human beings with feelings, talents, and dreams. We need to see them as people, not as chromosome counts. We need to educate each other. For this reason, my third novel, "The Upside of Down," includes a subplot about DS. I'm hoping that those who read it will come away with a little more understanding of a genetic condition that affects 400,000 Americans.

Thank you, Roger, for being willing to risk a part of yourself and in so doing, realizing a truth and then sharing that truth with others--that's how we will break down the phobias and make the world a better place for those with DS. Thank you!
Loved this! Everything about it. I have an 8 year old daughter with Down syndrome and reading this definitely made me smile. Thanks for taking the time to get to know Amber. It's all about acceptance and celebrating everyone. All of the Ambers out there. :)
It's one thing to think what you did. It's another to confess it publicly and share how you got from there to where you are now. That took courage, and I commend you for it.

For me, the light bulb turned on in the late 80's, back during the cold war, when I had an opportunity to go behind the Iron Curtain. Technically, the people in whose home I stayed were my "enemy," but I realized that Sting was right. The Russians really did love their children, too.

Our emotions are a universal language that we share with everyone on the planet. We're all glad it's Friday!

My niece has Down syndrome. The expression "more than the sum of their parts" applies to her in an unusual way. At 3, she cannot talk yet, but when I am with her, there's more love than the two of us can hold.

It takes an advanced soul to choose her circumstances. I bow before her.
Roger, fantastic post...honest, real, vulnerable and important. The book Deborah Young is referring to is "Expecting Adam" by Martha Beck. A fascinating book that will give you to an even more amazing perspective of DS. I enjoyed reading all the comments from those who have relatives with DS. This was a great post Roger. I wish it had been an EP and a cover. You touched many people with this.
As a mom to a daughter with DS I suppose the natural response was to be angry at your writing and shrug it off as another ingnorant writing by an uneducated, uninformed member of the general population of society, but I was not angy nor in any way offended. What you've written is an honest account of how people who have no experience or personal relationship with anyone who happens to have Down syndrome feel. What your encounter to Amber did was to educate you and in whatever small way make you have a change of heart. THIS is why its so very important, crucial even, that people who are differently abled be accepted as a positively contributing member of society, so that people like you who thought the lives of individuals with Down syndrome were less meaningful and unfilling can see with your very own eyes that people with disabilities are actually more alike you and me than they are different. Don't you look forward to your weekend's just as much as Amber? I know I do, I know my 13 year old daughter does too. Thank you for taking the time to write about your true feelings and encounter with Amber. While you may not have realized it, this is a positive advocacy story for people with Down syndrome and those who love them.
Hi Roger,
Thank you for posting this. I put it on my Facebook page in honour of my wonderful niece Marie who has Downs. She is a recent high school graduate, a really good painter, waitresses in the summer at a tea salon and is apprenticing to be a baker's assistant. It was brave of you to say DS people make you nervous. And very brave to show how silly that notion is. How quickly in 2-3 sentences of conversation, myths and prejudices can be dispelled. We're all people, and we all thank god when it's Friday.
Sorry to take so long to respond.
I can understand the transformation your viewpoint went through. Before driving taxi in Santa Fe, I was cautious of people with similar ... situations ... as Amber. Part of the training I received was sensitivity awareness. It also helped that a regular taxi customer had Down's. He's the most positive, upbeat person I've met in my life. He was also the subject of a newspaper article when his employer (McDonald's) named him employee of the year.