Ethan Saylor was the first grandchild for Bob and Dottie Saylor. He had a special relationship with Grandma and Nanny (as he called Granddad). Ethan spent a lot of time with them and Thursday nights were always Ethan nights. His Mom or one of his caretakers would drop him off at their house and he would eat dinner with them. Some of his favorites were pizza, rice and brownies. He spent a lot of time at the head of the table, usually going through one of him many notebooks, or playing cards or board games. Ethan loved to sneak food when he thought no one was looking. Grandma often found Hershey Kiss wrappers hidden throughout the house after he went home. Ethan loved to sing and play his harmonica. On cold days, he could often be found sitting on the front porch on the glider playing his harmonica and singing at the top of his lungs. Most of the time you had to listen carefully to understand what he was singing… one of his favorites was “Amazing Grace”.
4 Comments
Josh has always been able to express himself with his clothes. He may not fully understand why you shouldn't wear a leather jacket outside in the summer (it looks cool so what's MY problem?) Sometime he doesn't care about wearing a coat in winter - especially if it covers up his ensemble.... but he knows what he likes! Right now - it's two or more gloves (not necessarily pairs) with the fingers cut out - layered for effect - and whichever hat or wig suits his mood.
This is my nephew Ethan Saylor. I had the honor of being his aunt for 26 years before he died tragically in January 2013. I spent a lot of time with Ethan when he was younger. I have so many great memories of Ethan when he was little... we use to go for car rides and listen to the Men in Black song by Will Smith. He loved it, and the louder, the better! He also liked going the the airport and watching the small planes take off. When my husband and I adopted our daughter, Macy and Ethan immediately formed a special bond that was just as strong as the bond Ethan and I had. E is Ethan, but E is also for everlasting... This kind of love.... ....is everlasting!!
Today's story comes from Susan Holcombe - mother of Rion. A video of Rion's reaction to receiving the news that he had been accepted to Clemson University went viral. He's a true athlete (swimming, basketball, and baseball). Thank you Susan for sharing another story with us! (You can read more about Rion in two stories on our Guest Blog page.) When Rion was 13, he expressed to us that he wanted to join a basketball team. Now, Rion is great at “shooting hoops”, but he knows little about passing, dribbling, fouls, outs, etc….But we never say no to Rion. We signed him up for a Christian basketball program called Upward Basketball. Some of the other 12 year-old boys on the team were very accepting while the competitive ones kept the ball from him. Game after game, Rion would be on the court with no one passing him the ball. This frustrated him to no end. Also, Rion is very sensitive to sudden loud noises and the buzzer scared him to death. For this reason, he played with earphones on his head to block out the blaring noise. I am sure this looked strange to the others. It was during the third or fourth game that the coach encouraged a boy to toss Rion the ball. Rion had this special shot he would always make in practice. He would always make it from the sides, just right or left of the basket, no matter the distance. Rion was motioned to go to his “special spot” and sure enough, he made the shot! From that game on, the boys would toss him the ball when they could and he made that basket over and over!
At the end of the season, Rion was awarded the MVP for scoring the most points and for having a Christian attitude throughout each game. The best part of this experience? When Rion made a shot, parents from BOTH teams stood up and cheered and he was always congratulated by the opponents at the end of each game. By Helen Royal (Mother of Christian) I got the chance to talk to Helen when I interviewed her about her son's beautiful pottery. We shared such an instant connection that when it came time to write, I had to create two different stories. One about the fantastic accomplishments of her son, and one more about what I learned from Helen. Since then, Helen has become a true friend and source of encouragement. I'm so grateful that she agreed to share one of her stories in her own words with us for the Challenge! Thank you Helen! (From Stephanie)
"Let the Bright seraphim, in burning row The sound of Kiri Te Kanawa's etherial soprano voice coming from our living room streamed above the three of us sitting on the back porch. My husband Mike, our two year old son Andrew and I, pregnant with our sixth child, often took advantage of the opportunity to enjoy the fireworks from across the Ashley River on warm spring evenings. But this was an unusual occasion... It was Easter. Why were there fireworks on Easter night? Celebratory refrains from Handel's Samson describing heavenly fireworks ...the joyous melody sung by Dame Kiri Te Kanawa's shimmering voice was reflected by the clear sounds of the trumpet in response. Vibrant colors soaring and bursting into fiery patterns reflected themselves in the river. WE were reflecting....wondering.....gradually considering the possibility that the grand finale of the fireworks might just perfectly coincide with the finale of Handel's oratorio...."their LOUD.....UPLIFTED......Angel trumpet's blow! Our hearts responded in quiet disbelief and suspended breath as the last notes of the song wound their way around the fading sparks across the river. No one ON EARTH had planned this multimedia production. There was mystery involved here. After the harbor breezes cleared away all but what remained in our hearts, we quietly retreated inside, our hearts overflowing with gratitude for witnessing such unusual splendor. A few minutes passed. Still in awe, I realized our celebration was not yet over: someone else was responding to the magnificent concert. I became aware of the early pangs of labor. And just before dawn our son, Joshua Christian Royal, was born. Christian's birthday will be celebrated on Easter Day this year, 22 years after our hearts were melted by an unearthly glory. (Though Christian's entrance into this world was indeed dramatic, my adjustment to the surprise of having a baby born with Down Syndrome after having five "typical" children was not at all easy. I fell in love with my child, but it was not without going through some shock and grief. Slowly, the differences between him and my other children became to me his own "specialties". The characteristics that made him so particularly lovable to me, my husband and his siblings, were absolutely his DIFFERENCES!) (From Stephanie: Here's a video of the song Helen refers to in her story)
Advocacy is a word that means different things to different people. As the organizer of this A to Z challenge, I thought it would be a good place to start us off on this particular section of The Road - a month long alphabetical celebration of OUR STORIES! Images In our community there are lots of symbols that we use to express our advocacy - the blue and yellow ribbon, and the "Lots of Socks" campaign that the World Down Syndrome Day organization uses are two of the most well known. There's debate among advocates about what these symbols say to those outside of our community, and whether they, in conjunction with pictures and /or positive stories, help or hurt the cause of "social justice." In my humble opinion, one thing that these symbols, pictures, and stories do is show solidarity. There are some days, for all of us, that just seeing them helps. They let us know that we're not alone. Awareness Another "A" word that sparks discussion in our community is Awareness. The debate goes something like this: How close are awareness and advocacy linked? Does promoting awareness lead to change, or is it just a way for us to feel good about ourselves? Thoughts I don't have the answer to these questions. I can only share my perspective and how I look at things: Change is slow - in order for it to happen, we need to keep having the difficult conversations. Support is important - and often overlooked. The main purpose of "community" is to come together around a specific area of interest. Whatever we don't agree on (and there is a LOT) the one thing we have in common is the love of someone who has Down syndrome. We're all trying to do our best. Voice is key - and should include everyone. As I write, talk, tweet, blog, or post, I'm telling my own story. As a parent, it's a story of love and caregiving. Each parent's story is unique and has value. If we want to help the world what it's like to be a person who has Down syndrome, we have to sit back and let our loved ones do the talking. I share my story, and my memories, and I also try to share my son's own words whenever possible. For those who have trouble communicating with words, maybe there are other ways. Josh tends to express himself with his clothes/wigs/accessories. Pictures help him show the world how he sees himself. Advocacy is... I'm not here to define advocacy for you. We all do it everyday. How we do it is as different as we are. Each path to advocacy is important. My hope is that we can all learn to accept each other, just as we teach the world to accept our loved ones who have Down syndrome. Let's lead the world in advocacy by example - real inclusion and acceptance of all opinions, differences, and perspectives. How do you define advocacy? Do you know someone who has difficulty expressing themselves with words? What are some other ways you could share their story? |
Group EffortWe're taking the challenge! Together we'll post 26 articles from A to Z on Down syndrome, advocacy, awareness, and The Road We've Shared. Archives
May 2014
Categories
All
|