Wednesday, September 29, 2010

A Sibling Perspective

This is a sweet article written by a girl who has a brother with DS.

I can totally relate (and agree!) to Jenni's last statement: "So what is it like to have a sibling with Down Syndrome? It is an honor."

Yes, it is an honor and blessing to be able to have a sibling with Down syndrome. Osiyyah enriches my life and my families life so much. Not a day goes by where he doesn't put a smile on my face or make me laugh about something. And there are still days that go by that he totally amazes me on how much he really understands and can do (it's so much!).

I will forever be thankful that God blessed our family with a child with Down syndrome. And I hope that someday He will bless us with another one (or more) ;).

by Jenni Newbury

I don't remember life before Jason was born. I imagine I enjoyed my two years as an only child, but I simply have no recollection of life without him. The memories I do have include:pulling Jason across our tile floor to hear him giggle, sitting together on the couch as we went on an imaginary trip with my dolls, and running alongside him the very first time he rode a two-wheel bicycle. There are other memories as well: visiting doctor's offices, watching therapists come in and out of our house, and constantly translating Jason's developing speech to others. The memories meld together, not one more specific than another, not one less "normal" than another.

The first time I remember defining Down Syndrome was when my parents and I gave a presentation to Jason's fourth grade class. We knew his peers were asking questions and felt if we could explain some details, they would be more accepting as they got older. They were, at times - but not always. As a big sister I defended my brother when others took advantage of him or teased him. Many times Jason didn't even notice, but I felt it was my responsibility to guard his dignity.

As we grew up, I worked to create new ways for Jason to be included. In high school I created a club that hosted social opportunities for students with and without disabilities. I co-founded Camp PALS, a weeklong sleep away camp for young adults with Down Syndrome. In college, I founded Princeton Disability Awareness and hosted an annual Down Syndrome Conference for children with Down Syndrome, their siblings and families. Through each of these programs, I worked to bring others into the world where I lived, and provide them with the experience of knowing someone with Down Syndrome.

For many who have never met someone with Down Syndrome, it might be difficult to imagine how much can be gained from someone with a disability, someone who--by society's standards--is lacking. People with Down Syndrome are burdened by many stereotypes--most degrading, if not offensive.  None of them come to mind when I think Jason. Through Jason, I have learned what it means to be strong, courageous, sincere, and honest. Jason has shown me how to forgive others, how to experience joy in the smallest of moments, and how to love radically.

After graduating Princeton, I found a new home working for Special Olympics. Their mission challenges and inspires me every day, but the real honor is working for an organization that has directly enhanced Jason's life. Beyond sport, which has provided Jason with many opportunities, Special Olympics has taught him about advocacy.

Over the past two years, Jason has developed a new hero--his name is Tim Shriver. Although not completely lacking in superhuman powers, Tim became Jason's hero for a simple reason: he gave Jason a voice. When Jason spoke, Tim listened. When Jason attended a meeting, Tim asked for his insight. When Jason was by himself, Tim joined him. Through this simple acceptance, these acts of inclusion, and this demonstration that he valued Jason, Tim transformed Jason's world and empowered him to begin reaching his full potential. Tim represents only a small example of the power that a movement like Special Olympics brings with it. A power that, to no one's surprise, started with the passion and determination of a sibling.

So why does this matter? As a sibling of someone with Down Syndrome, the question I am asked most often is the following: Would you change it if you could? If you could separate Jason from his diagnosis of Down Syndrome, would you take away the disability?

Looking back, I consider the many ways I've worked to make Jason included, to have people see his value. The common theme is that I've never once considered changing Jason. I try to give others new experiences, transform people's misconceptions and re-direct their expectations. Like a recent Special Olympics advertisement I read, my goal has been to make others rethink, to consider "truth without judgment, love without boundaries, respect without requirements." If I am eliminating a disability, the disability is not in Jason--it's in the world.

So what is it like to have a sibling with Down Syndrome? It is an honor. Jason's life is nothing short of a gift, and his presence in mine is one of God's greatest blessings.

(Jenni Newbury currently resides in Washington, DC where she works for Special Olympics Project UNIFY as the Curriculum and Education Resource Manager. Most of her free time is spent working on the growth and expansion of Camp PALS. Since Jenni graduated from Princeton and left home in New Jersey, she and Jason have been adjusting to the new distance between them - but she is hoping to eventually convince Jason to move down to DC.)



Looking Up said...

Love it!

Adelaide Dupont said...

Shows you more of the heroism of Tim Shriver.

It is of course the daughters and sons, brothers and sisters, friends and those in the community.

Never forgetting the agency and personhood. And the voice as much as the face.

I have not fully read the speech...

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