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.

Thursday, May 28, 2009

My Point and I DO have One

OK, so I stole that title from Ellen. I love Ellen Degeneres. She is funny, forward thinking, great looking for our age. Yes, Ellen and I are the same age. We even share a name as I was born Joyce Ellen. But what I love the most about Ellen, is she is willing to explore territory that might not feel safe. Not everyone agrees with her choices. Yet, she has a following of dedicated fans.
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And that's my whole point with this series of posts about dance. Yes, Dance. For me, it was not about the fancy costumes, the tiaras, the hair, or even the performances. It was a little about being a princess, more about coordination, even more about gross motor skills, and even more about following directions. But what it really was about is INCLUSION. Just being with girls. Friends.
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Was it easy walking into that dance studio? The only mother of a child dancing with Down syndrome. NO. Did it bother me when Sarah couldn't quite keep up with the other girls? YES. Did I wish my daughter was like them? AT TIMES. Did I hear negative comments? Occasionally. Did I run the other way. NO. Why not you ask?


Look at this picture. LOOK HARD. Study it. What do you see?
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Four girls waiting their turn to dance.
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Wearing the same costumes.
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Hair on top of their head.
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Playing Disney Uno.
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Sitting on Sarah's blanket.
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WITH Sarah.
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Willingly.
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No pressure, no coercion.

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Just being friends.

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Sarah looks like them.
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She acts like them.
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She looks like she belongs there.
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And GUESS WHAT?

SHE DOES. I urge you as parents to go out of your comfort zone. Get out of the small groups that look like you. That have kids who share that extra chromosome. Do something that expands your boundaries. Don't immediately jump into an extracurricular "special program." Do it for you, for your child, for the families with a child with Ds that will follow you. More importantly, do it for all the other children and their families. That is how we spread our message the best.

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It doesn't have to be dance. I could repeat this same story with soccer and softball. It could be karate, Gymboree, Scouts, swimming, skating, bowling. MY point is, don't take the route of comfort. Start early. Don't give up when confronted with negativity. The rewards will be so grand, so far reaching, so euphoric. And the lessons you will teach along the way are priceless. And that is my POINT.

42 comments:

Karyn said...

Thank you so much for posting this so inspiring message! Getting out there and active is the key to success and acceptance for us all. It helps others accept children with DS, but it also helps our acceptance in our hearts of our own child. Thanks so much!

Kim said...

And a great point that is!! Thanks for encouraging others to take that step of faith!

Kimberly said...

Thank you so much for sharing this message. I've been toying with putting my son into some summer sport or activity. He is only 5 and I'm not so sure that he would really "get" it. Which makes me want to just take the safe route, the easy route and sit this summer out. You've given me that extra boost of courage that I need. Thanks!

ABandCsMom said...

Thank you for posting this it's such a great point. We want our children to be accepted by others. It is up to us to make sure that happens. Again, thanks for posting this.

Jenn said...

Excellent point to make! There's so much I don't know yet about my child but thanks to you and Sarah when this adoption is done I'm going to be thinking about a lot of things differently than I would have without your blog!

Peace and blessings!

Kim Rees said...

Joyce, you are such an inspiration to sooo many! Thank you sooo much for writing exactly how you feel and never being afraid to share. Sarah is sooo lucky that you took those extra steps of faith and allowed her to experience something that turned out to be an incredible experience and gave her sooo many wonderful memories she will never forget!

Kristen said...

That is a very good point!! It was wise of you then and wise of you now to share such a valuable point!

Cammie Heflin said...

I love seeing Sarah with her friends it is awesome!

Chrystal said...

Fantastic! Thank you!

Lora Leigh said...

Thank you for posting this. My husband and I were recently discussing a move in the future because there are no special needs activites where we are from. I held Raeleigh out of Gymnastics/Dance last Fall because I said she wasn't ready...but really I'm terrified of her being rejected. Thanks again.

RK said...

THIS is why you are so valuable to us as a community of moms of little ones...this is the kind of thing I know, yet I still feel some trepidation to think about it. I hope I'm brave enough. I'm sure going to try to be!

I did really love all the dance pics!!

Emily said...

Point taken! Thank you so much for those posts! I will do all I can to get him involved.

Melissa said...

I have enjoyed these posts so much! One of my dreams is to take my little girl to dance classes and dree her up in a ballerina costume. now that we are adoting a little girl with DS I had wondered if I would have to give up that dream. This has encouraged me to give it a try. I just hope she wants to dance ;o)

AZ Chapman said...

great post would love to see more photos come vist dose sarah still dance

Heather said...

Beautiful post Joyce.I have loved the pictures and I saw it... really.Each and every picture I saw it.I just so hope and dream of Zoey being there.Thank you for your constant reminder to never stop dreaming the dream and hoping the hope.

Nan P. said...

Your point is a very good one. Every one can benefit from inclusion of diversity. This is how barriers can be brought down.

The hardest thing must be stepping out of the comfort zone the first time, but for every one's sake, it is an important thing to do.

Your reminder is most welcome and opportune.

Amy said...

Joyce, as the mom of a 2 1/2 year old little girl with Ds (and adopting a 3 year old little boy with Ds from eastern Europe as we speak) and having had no prior knowledge about Ds at ALL before my daughter was born... This blog is SUCH an inspiration to me. It shows me WHAT my daughter (and soon son) are capable of. Thank you for encouraging others to think outside the boundaries. I am that family coming behind Sarah that you've paved the way for. Not to over dramatize it, but I feel like this blog has played a big role in my brain going towards Abby being in a "typical" setting FIRST and only a special one if she needs to be. Because why not? She CAN. Even at two years old I can SEE that she feels so left out if I don't paint her toenails when I paint her big sisters'. :) This kid WANTS to be included, and as she gets older I have THIS to look at and say- "Sarah did it, why can't Abby?"

:) Thank you.

stephanie said...

I hope you plan on blogging for the next 20 years or so. Emilia is only 7months old and I know as she gets older there will be more and more questions and situations I never thought of, but... you have already been there and done that!You are an incredible advocate for children with special needs and a wealth of knowledge to parents just beginning on this journey, thanks so much.

wife, mother and so much more! said...

BRAVO!! I totally agree!! Our little saint's can do just as much as typical kids, probably even more if we allow them!

Tsquared417 said...

I completely and wholeheartedly agree! It's not easy, but it's a must.

Thanks for the tears this morning!!

Anonymous said...

LOVE, LOVE, posts like this and of course, LOVE your POINT!.

Thank you Joyce :)

The VW's said...

AWESOME!!! I totally got what you were getting to and it is awesome!

I wish that Gavin could be involved in these types of things!

I have had the pleasure of having other children with DS involved in my other boy's activities. I believe that it gave my boys such a gift having these children with DS involved in the same activities! Our children with DS are here on earth to teach us so much and I bet Sarah taught those girls so much! Great job taking the risk Momma and sharing her with the world!

Sarah is such an inspiration!!!

sheree said...

GREAT post, Joyce!

Your advocacy is so insirational to me and I can only hope to be such a wonderful mother to my gabby as you have been to Sarah!

I will DEFINITELY get out of my comfort zone if it means having a daughter as happy and "included" as Sarah has and will continue to be!

Michelle said...

Joyce, I can't even tell you how awesome it is that you and Sarah have joined the blogging community - I really enjoy both of your posts so much. I think Sarah is absolutely lovely, and I hope Ruby grows up with as many friends and interests as Sarah has.

JRS said...

Thank you so much for this lesson. It's one I'm taking to heart. I've loved the pics, but your words really struck home (as usual).
---Jen

Michelle said...

Loved this message! and that's what I said in one of my comments that I saw - a girl being included! :)

Maya said...

Wonderful post Joyce! Thank you. I am very prone to keeping us in our "comfort zone." Yours is a wonderful and important reminder that I promise to carry with me when the time comes to sign up for new classes.

Mary said...

Great message!

starrlife said...

Wonderful post! In our rural community we have to be inclusive since there aren't enough kids with special needs to create their own places. It is such a balance...I am a lucky person in my community!

rickismom said...

One--- in general I agree TOTALLY with you. I tried to get Ricki into a "normal" dance group, but unfortunately was not successfull....
My daughter Ricki is 14
HOWEVER, if a child is INCLUDED all day, I suggest that ONCE A WEEK there be SOME activity that is with other kids with DS., so that they learn to accept that aspect of themselves, and so if they EVER need to be in a special needs program of some type, they won't say, no that is not for me....

Scarehaircare said...

I am all teary now. I had The Love Magnet in an all-Down syndrome dance group in Utah. We moved to Idaho and I haven't looked for another dance place. The Love Magnet has been begging to dance. It's time I found a place. You are right. It's all about inclusion.

Jen said...

Joyce, thank you for this. I needed this reminder and confirmation that we are headed in the right direction with our son, and it means a lot coming from you!

Perplexing Situation said...

ha, I've been toying with joining a local moms group but hesitant because there are no other special little babies. Thanks for the encouragement! I needed to think smarter.

Karly said...

This is exactly the message I needed to hear. Thank you so much for the inspiration to give my daughter the experiences she deserves. The instinct to protect her is not always for her protection, sometimes it's for mine. I know she will turn out much stronger than I realize.

Kacey Bode said...

Thank you for these last few posts! I can not wait till Ella is old enough to start doing these things. When I think about the future, her in dance, or sports, I do get a bit nervous but you are so right, I just have to try it!!

Kele said...
This comment has been removed by the author.
Kele said...

Goodness gracious, how ironic you would post this... Saturday Mikah had her dance recital, as I sat through this THREE HOUR recital, watching precious toddlers, I can't tell you how much I thought of Presley, I thought of all the things you mentioned, 'Will she be able to do this one day', 'Will others kids embrace her', 'Will other MOM's embrace her', 'Will she be able to keep up',
I have always known I want to mainstream Pres when and where I can, for her AND for society to take note, but as her Mommy, I have no doubt it will be difficult to ever watch her struggle. Thank you so much for sharing this, because of these exact thoughts being so recent, it made me cry and it made me think God was talking to me through you... 'it WILL be okay, SHE will be okay!!'
Thank you so much!

Jeanette said...

Joyce, so many parents need to hear this. Thanks for the reminder!!!! I can't wait to see my Sydney in a dance costume someday... she just loves music.

Shawndi84 said...

I love all of your post's Joyce! You inspire all of us! You guys are such great parents!

amy said...

THANK YOU JOYCE! you and sarah are inspirations for so many people in my little world.... and dance is near and dear to our hearts (my mom has a studio) and the issue of getting sophie in there as much as possible is at the forefront for me a lot of the time -- and it's good to hear someone who's been through it say it's good to push for it to happen.

Beth said...

Thank you for posting this! Very well written! My 4yr old daughter is currently in her 2nd yr of Tap and Ballet. She LOVES it and asks each day if this is day to Tap. Her 1st yr I almost kept her out of the recital as I didn't know how she'd react. I had the other Mothers persuade me to put Hannah in the recital. That day brought tears to my eyes; she did both the Tap and Ballet routine BETTER than some of the "typical" girls!!! She taught me a very important message...never underestimate what she can do!

Anonymous said...

Very beautiful! I grew up dancing myself. Here are some other beautiful dancers that live in madrid. cut and paste to enjoy. :)

http://current.com/items/89879849_dancing-with-down-syndrome.htm