My Name is Sarah

MY NAME IS SARAH. I am a quilt designer and the sewcial director of Sarah's Sewcial Lounge. I also have a business called Down Right Charming. I sell my quilts mostly on etsy and I make pillowcases to donate to patients in the hospital in memory of my friend Kristen Kirton. I am a young adult living with Down syndrome. I hope you enjoy reading about my life journey.

Monday, January 12, 2009

Some More Good Questions

A message from Mom: As I promised when I took over Sarah's blog, I would like to address another question, actually a series of questions that were recently emailed to us: "This is something I've been wondering almost from the beginning: do older kids and adults with Ds know they have Ds? I mean, I guess I assume that they do, but what does it mean to them? What does it mean to Sarah? Does she understand her condition? How does she feel about it? How and when does a parent tell their child that they have Ds?"

What great questions. I will share a little story. I would also like to ask other readers what their experience has been because, I am sure each family has a different one.

The truth is, I do not ever remember sitting Sarah down and saying "Sarah, you have Down syndrome." The fact is for the first ten years of Sarah' s life, we focused more on her being medically fragile, than we did on the Ds, even though many of her medical issues were likely related to having Down syndrome. We had her in so many community activities: sports, dance, Girl Scouts and after school programs, as well as being fully included in the classroom from K-6, that I'm not sure she felt that much different in her younger years.

The first time I remember having a serious conversation with her was the evening we watched the Lifetime movie: The Memory Keeper's Daughter, about a year ago (she was 18 at the time). She was so saddened that the nurse took the baby away and kept asking why. I tried to tell Sarah in a round about way that it was because they thought they couldn't handle taking care of her. She looked at me with her famous puppy dog eyes and frown expression and said "Oh Please, just because she has Down syndrome like me?" It sorta rocked me for a moment because I did not realize that she had that strong of an understanding to make that connection. So I asked her what she thought about having Down syndrome and she said, "whatever."

A few months later we were at our condo in Columbus and had gone to the local Kroger grocery store. There are a few adults that work there with Down syndrome but I have never said anything about it to Sarah(although I do find myself purposely getting in their line even if it is longer). So on this day, I had been reading a magazine waiting my turn and then started unloading the food from the cart. All of a sudden I realize that Sarah is not with me. Normally I would not panic, but this is a huge store and Sarah does not come here very often. So I start the frantic head darting in every direction only a mom can do, when I see her over talking to this young man. Actually, as I watch more closely they are doing the teenage flirt thing. Hmm.....

After he bags our groceries and puts them in our cart, I smile and say goodbye. I am almost at the door and turn around to make sure Sarah is with me. She is still over talking to this guy. Now, I am getting a little irritated, so I yell: "C'mon Sarah." The two of them then do this thing with their fists and hands that is some symbolic goodbye they probably picked up from TV. They both knew it, very well I might add. When we get to the car, I said to Sarah, "So it looks like you have a new boyfriend." Indignantly she says to me, " Mom, he is just a friend, and if you haven't noticed he has Down syndrome just like me. We stick together, ya know." And with that, she put her headphones on and turned on her Ipod, which meant she had tuned me out.

I smiled as I drove off. It really was a cute thing to watch. But more importantly, she told me so many things that day. First, that she is just like any other teenager: when she finds a man attractive she can go into the preying mode of flirtation. Yet, indirectly she also told me that she knows she is somehow different, and she seeks out those that are like her, but hey mom it's no big deal.

30 comments:

Tracey said...

It is really neat to hear stories about teenagers (with DS) and how they interact. This is good informaiton to know - My friend Kim's Mattie will be a teenager one day - and probably flirting with boys too! Thanks for sharing this story...

Lovin Mama said...

Such cool stories. I know I seek out people I think are like myself. I think we all do it.

Nan P. said...

Thank you for these stories... It all feels so "normal" - God, how I hate using this word, but I am sure you know what I mean...

Sarah demonstrates that she is a very clever person, and that having DS is "whatever". Just like when people realise that I am orginally French but living in Ireland for most of my life I feel like saying to them: "so what?"

Very clever indeed. And very reasuring for Cathal's future.

JRS said...

Thank you thank you thank you for sharing this story! ---Jen

datri said...

I just LOVE this post! Yep, no big deal mom.

Maureen said...

I know this is a long way off for me, and if this is too intrusive please say so, but Joyce, have you had the where do babies come from conversation with Sarah? Has she expressed interest that she would like to be a mother some day? I wonder what that day will be like for Penny. I mean, I kind of "lucked out" that her heart condition is so severe that it would not be a good idea in any case to be pregnant. And from my side, will it sadden me when/if my son has children and I don't get to have that in the context of a daughter/mother bond. I mean, you haven't been there yet but have you had feelings like this or am I weird?

Michelle said...

What a great post! I always wonder about this, when we talk about DS with our older children. I guess I feel like if we just talk about it casually as it presents itself ... well, I guess I hope it's something that the kids are always aware of.

Sarah sounds like such a clever, kind girl. I'm so glad you're sharing her with us!

Michelle said...

thanks for sharing your story; I liked the story you ended with too :) I've often wondered when/how to start discussing with Kayla that she has Down syndrome, I guess we'll take it when it comes!

Cheri said...

Wow, thanks for sharing that story! My computer had crashed so I am behind on reading so can't wait to go back and read more of what you have written. I have thought about this topic a lot as well.

There is a young man who bags groceries at our Pavilions and I am always going to his line if he is there...I have thought about saying something to him like, "My son has Down syndrome too" but didn't know if that would be weird to him, or if he even knows if he has it...so I have said nothing but I do try and start a conversation with him now every time we happen to be there together. Reid was crying one day and he told Reid, "You better stop crying or santa won't come" in a really cute voice trying to help calm him down. Didn't work...but it was cute anyway!

Thanks for sharing!

rylie's mom said...

I love this post and I love how she said "whatever". Thanks for sharing!

Tsquared417 said...

I want to be you when I grow up! Your posts touch my heart. Thank you for sharing...I always wonder when the day will come (if ever) for Olivia...maybe not b/c her syndrome is extremely rare...but maybe. I'm sure she would offer me the same "whatever" as Sarah...that sounds like Olivia!

Stephanie said...

Even at Aiden's age, I think he knows. There are 8 kids in his class at school, 4 with Down syndrome. He does tend to lean more towards them then he does the other kids.

Beth said...

Joyce, I think you're going to have to start your own blog! We all want to hear more! We love reading Sarah, but we love your posts as well!

I love Sarah's approach to Down syndrome. I'm hoping that Hannah will have the same attitude.

I don't know what Hannah (10) thinks about Down syndrome at this point. She does know she has Ds, but I don't think she has an awareness of what that really means. We have always talked about Ds, because we've always wanted her to be comfortable with the terminology.

I have a funny story to share from when she was 4 years old. We have always talked about Down syndrome, which friends of hers had Down syndrome, and which ones didn't.

One day she was playing with a baby doll, and I heard her say her baby had Down syndrome. So I asked her, "What is Down syndrome?" She said, "It's a t-shirt".

This completely cracked me up! I knew exactly what she was talking about because she always would read our Buddy Walk t-shirts that said, "The Down Syndrome Association of Charlotte". She just figured that the T-shirt was "Down syndrome"--after all, all her friends with Down syndrome were at the Buddy Walk and had T-shirts too!

By now she definitely knows it's more than just a t-shirt! She knows the science of Ds--that she has extra DNA--the directions that tell her body how to grow.

Recently I noticed that she is really good at recognizing when someone has Ds. She recently met a teenager who was in a creative movement class with her. Later that night I asked her about "Nick". She said, "Oh, the one who has Down syndrome?"

We'll see what happens as she becomes more self-aware.

Mommy and Peepers said...

Thanks, us moms with young kids w/ds sure do need to hear how you handle teenage situations. I am already wondering what to say or if i should. And your posts are awesome. Carolee

Lisa said...

I am so thankful to have been given the opportunity to connect with you Joyce. Thank you for this post, and all the others.

Kele said...

I love that story, thanks for sharing. Since Pres is only 10 monhts I don't have any stories to share but love seeking out stories such as this because I am so curious about Presley's future...

Anne and Whitney: Up, Down and All Around said...

Thank you so much for the wonderful post and for answering questions that I am sure so many of us have! I love Sarah's "whatever" response. You and Sarah are both great resources of information for those of us just beginning this journey of having a child with Down syndrome. Whitney is just 4 1/2 months old, but someday she will be a teenager and it is nice to have some insight ahead of time. (not to mention that even though we try to take one day at a time, you can't help but think about the future sometimes and wonder how to handle certain things!)
THANK YOU for being such an inspiration (both Joyce and Sarah)
:)

SunflowerMom said...

I loved reading this! Sarah has such a great attitude.

Sean, 4, isn't really aware about Ds yet. He has a classmate (Andre) with Ds that he is good friends with, though. When we took him to get glasses, he put a pair on, looked in the mirror and said "Andre!" He thought he looked like his friend, who also wears glasses. Amazing!

Andy and Ellen Stumbo said...

I have noticed that adults with Ds notice other adults with Ds. Even kids notice each other too!

Nichole is really little, but I suppose we will talk about it as a part of who she is as she grows up.

JennyH said...

Good info. I wonder about that too.

Hope Sarah gets better fast.

Melissa @ Banana Migraine said...

I really appreciate you taking the time to answer questions and share your stories. Thank you so much!!

Laurie said...

My husband asks me about this question at least once a week.
Thank you so much for this post. What a wonderful and inspirational story!!

The VW's said...

I LOVE this story about Sarah! Thanks for sharing it with us! What an inspirational girl you have!

Becca said...

What a great story! Those of us with young children with Ds do often wonder what kind of awareness they will have as they grow up. I love the graceful way Sarah really seems to go with the flow! She's an extraordinary young woman!

Debbie Yost said...

What a great story! Thanks for sharing it. You and Sarah are such an inspiration to so many of us.

I remember hearing somewhere that you should not hide your child has Down syndrome from him/her, but not necessarily make a big deal about it either. We just live our lives, participating in things that involve Down syndrome because that is part of our life.

rickismom said...

I will reply to this on today's post (or no one will see it...)

Bonnie said...

How cool! Sarah is so bright Joyce. It would be so awesome to get her to write a song about how she feels too! :-) Maybe we will try for that in the next semester!

Mauzy said...

My first post here, and just figuring the blog out...have to find out why Sarah isn't posting....

I know that first, saying what Sarah thought about "being Down syndrome" kinda bothered me.....

We always talk about Down syndrome, Nash recognizes others with Down syndrome at age 7 and and it's just part of our world. I say, "insert child's name here" has Ds, just like you, in conversation when appropriate, like before DSI events, or playdates when he was little.
I truly don't understand the hidden reasons at all although I have heard this from other parents with older children that have Ds. I think Sarah's response is proof that having Ds is just part of the package, and well, "whatever".

Karen said...

Thank you for reposting this. I'd missed it the first time. Wonderful! You know, even at Micah's age, he seeks out those that are like him. There's a weird bond between them that I can't understand. I'm glad that he does, though. And that Sarah explained it to us.

starrlife said...

Kayli is ten and we have had this same conversation with our neighbors daughter who has DS who is now 15. I do think that Kayli has some sense of difference perhaps thinking about DS since our Buddy Walk. It does not seem to bother her and it is great to hear of Sarah's responses! I know that my mom worries about Kayli and her growing up- driving, babies,marriage and many people grieve as thought they anticipate that none of these things are possible. I've learned to wait and see and follow my daughter- she and I will figure these things out together just like everyone else. I all seems to unfold doesn't it? Thanks and have a very Happy New Year!