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The Personal Side of Down Syndrome

When a Doctor delivers a diagnosis of Down syndrome, they can share all of the medical research, statistics, etc. with you.  What they can’t tell you, is the personal side of Down syndrome.  And that can make all the difference in the world.  Below are various stories and testimonials about what it is like to love someone with Down syndrome.  These are the things that a medical professional can’t tell you, and what is the most important.

From “Common Threads, Celebrating Life with Down Syndrome” by Cynthia S. Kidder and Brian Skotko.

Published by Band of Angels – Please visit their site at to purchase DS Awareness products and this book

“I see a child who places her love and concern for a fellow human over her fear of rejection and hurt.  I see a child without judgment or prejudice.  I see a child who places others before self.  I see a child who perseveres.  I see a child with courage.  I see a child willing to take a risk to love.  I see a hero.  I see my daughter.”

– Kelly Watkins, mother of Katherine Lowe Watkins, a 6 year old with Down syndrome in Paducah, Kentucky

They Go Together Strongsville, Ohio

When the touring Broadway cast for Grease came to Cleveland, it only seemed natural for Kristing Skotko and her family to see one of the first shows.  For quite some time, Kristin, a 19-year-ol aith Down syndrome, had been hopelessly devoted to Danny, the show’s main character.

About 30 minutes before the show began at Cleveland’s Playhouse Theater, one of the cast members came out and asked the audience to join him for a dance competition on stage.  “Who in their right mind would go up on stage before thousands of people and boogie?” said Brian, Kristin’s brother.  At just that moment, Kristin yanked his arm and said, “Let’s go.”

“Absolutely not,” said her mother, “You sit down.”  But Kristin was determined to dance.  Besides, she had the aisle seat, so no one could stop her.  “What was I supposed to do?” said her brother, “I got up and tried to get to her before she made it to the stage.”  The aisles were filled with latecomers, so by the time Brian made it to the orchestra pit, she was already on stage.  “At this point, there were already some 20 individuals on stage.  So I was thinking we could just dance in the corner,” he said.

Brian joined her on stage.  But the announcer did say it was a “competition.”  After the stage was filled, he told the contestants to dance their hearts out because if he touched them on the top of their heads, they had to return to their seats.  “Now I have to admit, Kristin is a pretty good dancer,” said Brian, “But I was just saying to myself, ‘touch us,’ ‘touch us,’ ‘touch us!’”

Here’s the way it worked: each couple had about 20 seconds to dance; and in the end, the audience would clap for their favorite.  So Kristin and Brian did a rather complicated swing move called the “pretzel.”  “Sometimes at home, we would just fool around and dance that step,” said Brian.  “But now it was for real.”  Well, the audience loved it, and they won the competition.  Both of them took a big bow and were awarded official Grease shirts.  Additionally, during the radio scene of the actual musical, the announcer incorporated Kristin’s name into some of the song lyrics.  “She was completely thrilled,” said her parents.

But Kristin also taught her brother an important lesson.  “In that single night, Kristin taught me never to be afraid of the unknown.  Opportunities like that come around only once in your life, and you have to seize them.  She didn’t care what others thought; she didn’t care about messing up.  She cared only about fulfilling a dream.  For that, she will always be my hero,” said Brian.  Wahoo, yeah!

Story by Brian Skotko

Story from Gifts
One of our EPDSC families, the Farrells, were included in the book “GIFTS: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives”.

by Dena Castellano-Farrell

It’s nearly dinnertime. I’m sitting in the living room, savoring the smell of (food) coming from the kitchen, and smiling at my three boys. Garrett, age six, is leading his brothers in an energetic version of Ring Around the Rosy. Braeden, age five, is putting his heart and soul into the song as he teaches his little brother Griffin, age two, the moves. Griffin is giggling so hard just watching his brothers that he can barely stand up. Ashes, Ashes, we all fall down! The three of them collapse and the giggling escalates.  When Griffin does stand up unassisted, you would think he just hit a grand slam. “Mommy! He did it!” his brothers chorus. “Griffin stood up all by himself!”  “Way to go, Griffin!” Of course I’m smiling; I am the luckiest woman on earth.

When Griffin was diagnosed with Down syndrome, I had so many worries about what this would mean for all three of my sons. Garrett and Braeden had just turned three and four years old. How could we manage this? I worried that we wouldn’t be able to give them enough attention because we would be devoting all our time to Griffin’s special needs. (I thought for some reason that Griffin would require round-the-clock care and our undivided attention.) I dreaded the seemingly inevitable neglect of their needs. I even planned ahead, teaching them at their young ages to write their first names, figuring I certainly wouldn’t have time to teach them once I was consumed with Griffin’s care.  And as I envisioned the older boys’ future, I worried that they would somehow be burdened with their brother. I imagined they would have to take over the role of parent to a grown child someday, sharing the responsibility of caring for Griffin.

I worried that our marriage was not strong enough for this. Sure, I always felt that we were happy but this was something we had never been through as a couple. We had gotten through challenges before, such as unexpected job changes and parenting two boys born thirteen months apart. But could we handle all three of these brothers?

I also worried about how I would handle these difficulties on a personal level. Would I feel resentful of this child who would no doubt take up most of our time? Would he depend on us for the rest of our lives? In my darkest moments, I worried that I wouldn’t love him as much as his brothers because he wasn’t my idea of “perfect.”

Most of all, I worried about Griffin. Would he suffer? Would he be able to attend his brothers’ school? Would he be teased? Would he ever be independent? I cringed at the words “group home” when reading the literature from our geneticist and couldn’t even utter the phrase without crying. I equated allowing him to live in a group home with sending him away to an institution; I couldn’t begin to fathom that situation.

Well, Griffin is now two, and my heart is much more settled. No problems with loving him—I’m totally smitten! And my fears about resenting him or favoring him have been laid to rest. We spend three hours a week with Griffin’s therapists; one each for speech, gross motor skills, and fine motor skills. Part of their job is to show us how to incorporate his therapies into our family life.  Whether it’s chasing his brothers through a tunnel, letting them “read” to him, or teaching him the fine art of dumping water in (and out of!) the tub, Garrett and Braeden are the best models and motivators Griffin could have. But we don’t always make Griffin our focus. His three therapists understand that Griffin is not our only child and we shouldn’t take away from our other boys for his sake. So Garrett and Braeden get their turns in the spotlight too!

Griffin does not make us worry any more than our other boys. We no longer worry about his dependence; instead, we are planning for his independence. I no longer worry about his future; instead, I wonder about it. I used to think I knew what was in store for him. Now, I realize that I honestly have no idea. He might go to college. He might get married. He might live with us if he wants to—although, considering his desire to do everything his brothers are doing, I don’t think he will!

Most importantly, his brothers adore him. They see him as any other little brother, sometimes annoying, sometimes getting into their toys. Yet they fight over who gets to help change his diaper (unless it’s a stinky one!). If Griffin needs or wants to live with one of them someday, arguing over who gets him may just tear them apart! But, I don’t think that will be the case.

I think they will be competing to see who gets to be best man at his wedding!

Dena lives on the east coast with her husband Christopher and their three children, Garrett (1999), Braeden (2001) and Griffin (2004).  Griffin was diagnosed with Down syndrome via amniocentesis twenty weeks into the pregnancy.  Dena is an adjunct instructor in the math department at a local community college.

Self Advocates:Catherine Riley

Catherine is a 33 year oldassistant.  Catherine achieved that position based upon hands-on training she received in her high school transition program.  Impressed with her skills, the district hired her upon graduation and promoted her from office work to classroom assistant.  She currently works in 1st and 2nd grade inclusion classes, where she assists special education, regular education, and ESL students.  She has a busy social life which includes belonging to a gym for twenty years, being a Eucharistic minister at her church, and having a close network of friends through her job, church, and gym.  Her hobbies include: reading novels and the daily newspaper, writing poetry, listening to music, dancing, and watching reality TV.  Recently diagnosed with Celiac Disease, she keeps daily food journals and manages her weight independently.  For the last fifteen years Catherine, along with her sister, Molly, and her mother, Nola,  has been the key-note speaker at conventions, conferences, workshops, colleges, and universities, as well as speaking to parents, teachers and other professionals who provide services to people with intellectual disabilities. She has spoken throughout PA about Growing up with Down syndrome, as a self-advocate for people with intellectual disabilities. Catherine is an outstanding example of the message she advocates “that individuals with disabilities have the remarkable ability to live full, productive, independent lives.”

Poem by Catherine Riley:

Sometimes I feel that I am different but I am not different.

I am a person who has feelings and dreams.

I’ve always wondered why people talk about me or call me names.

I just wish that they could see me for who I am

And treat me as normal as every other human being on this earth.

Then we could be friends.

Just give me a chance to tell you how I feel.

Having Down syndrome is a part of me that will never go away.

Yes, I have a disability, but I am normal, just like you.

I have wishes and dreams, and most of all,

I am a person who has a full life.

I can dance and I can write.

I have creativity and everything that I need in life.

God made me who I am and you who you are,

Sometimes different shapes and sizes, and even colors.

Instead of judging me for what I have,

Take a good look at yourself and then at me.

Only then will you see the real person inside of me.

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