Siblings Speak Out: Jenni Newbury

Growing Up In Holland: A Sibling’s Report from the Front Lines by Jenni Newbury, NDSC Keynote, August 2011

Reprinted with permission from Jenni Newbury:

“When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy…After months of eager anticipation, the plane lands and the stewardess comes in and says “Welcome to Holland.” Holland? You say. But I thought I was going to Italy, all my life I’ve dreamt of going to Italy.” –Emily Perl Kingsley

Over the past 23 years, I’ve heard Emily Perl Kingsley’s poem “Welcome to Holland” at conferences, trainings, and many other events involving individuals with disabilities. Emily tells us that, although less flashy than Italy, Holland still has beautiful characteristics and the traveler learns to appreciate them even while watching others come and go from Italy.

A few years ago, the NDSC awarded Jennifer Graf Groneberg with the National Media Award for her book titled Roadmap to Holland. The book shared insight and lessons learned in the author’s first two years after her son with Down syndrome was born.

Holland is a common theme in this community — probably because the analogy resonates with so many parents trying to define and describe their experience.

But what about growing up in Holland?

What about those who were born in Holland or simply were so young when they arrived that they can’t remember anything different? Do they appreciate the eccentricity of Holland without missing the glamour of Italy? Do they stay up late at night wondering what it would be like in Italy or are they simply more comfortable, more at home, in Holland? This perspective, and these questions, can only be understood by siblings — shedding light on the distinct connection between those of us who share a similar history, who find ourselves rooted in the particular place of Holland.

I am honored to have the opportunity to share my story with you tonight –a story about me, but really a story that can only be understood when you meet my brother, Jason. I give you my perspective not as a generalization but as a result of the unique opportunities, experiences, and relationships that Jason and I shared. I want to talk to you about our lives and the communities we’ve been a part of, and I want to give you a report as Jason and I stand with a new perspective, looking out over the front lines of Holland.

I started my life at the age of 2 years, 2 months, and 24 days. You see, that was the day I got my very first, and most important job — I became a sister. Being a sister came with many different roles — yet I soon made it my number one priority to get this smile as much as possible. A few years later, I took on new responsibilities, and became a teacher. Whatever Jason was learning — in Physical Therapy, Speech or anything else I witnessed — I made sure I repeated in our playroom. When I started first grade, Jason was forced to join me — I brought home worksheets and made my own for him to complete. I turned in report cards to my mom about Jason’s behavior during “class time.”

But, thinking back over the years of our childhood, Jason and I both had the job of being teachers. No matter how much I had tried to pin him down in my make-shift classroom, Jason had turned our lives into a classroom all his own.

There are countless lessons that I learned from Jason over the years, many of which have continued to challenge me as we transition into our adult lives. But a few key themes come to mind when I think about our childhood.

The first is trust. From a very young age, Jason showed me what it was like to trust someone. Jason trusted me with his heart, his happiness, his life — I’m not sure what I ever did to deserve it — but all I knew is that I didn’t want to do anything to lose it. Jason trusted me when I would take him in the pool before he could swim, and Jason trusted me when I took him across the country on our very first trip to the NDSC without our parents. But most of all, Jason and I trusted our relationship — the type of relationship where we knew that we could share our deepest secrets and not be judged but accepted. To this day, it is Jason’s trust that continues to motivate me — he trusts me to keep my promises, to fight for the right causes, and to come home to visit (or take him with me) as much as possible — and so I do.

The second lesson I learned from Jason is about love — and there are a few elements of this specific lesson. First of all, Jason taught me about loving life. There is no one I have ever met who can love life like Jason. Jason is the friend who will stand up and sing karaoke when everyone else is ready to go home… and Jason is the guy that will sweep you off your feet when you thought you were the only one in the room who heard the music. I imagine it is this love for life that fuels Jason’s ability to unconditionally love others. Many of us talk about love and we demonstrate it often. We love when it is convenient – we love others when they are interesting, when they are beautiful or they make us laugh; we love others when they are useful to us; we love others when they love us in return. But not Jason. Jason demonstrates great love to his family and those close to him, but he demonstrates even greater love to everyone else. Jason holds no grudge, he forgives without bringing guilt and he has shown grace when anyone else would fight back, or fall apart.

It’s difficult to grow up in Holland without learning about hardship, and with that, perseverance. This brings me to my third lesson, and at Jason’s request, I am calling this courage. This was the first theme that came up in our conversation when I spoke to Jason about this keynote address. He talked about the summer that I spent teaching him how to ride a bike. It wasn’t just perseverance that made him continue to get back on — but – knowing he was likely to fall again, it took great courage. And the more I thought about it, the more I agreed. It took great courage for Jason to take the bus every day to school, even though he was teased and bullied. It took great courage for Jason to yell at the people behind us when I stalled the car on a hill the very first day I got my driver’s license. And it took great courage for Jason to return to high school after realizing that walking with his class at graduation did not mean that he would receive a diploma like all of his peers. You see, perseverance is important when you’re working towards a goal but when you spend enough time facing disappointments, courage is what will keep you going.

And so growing up with Jason, I learned about trust, about love, and about courage. And as these lessons were being taught, Jason and I quickly learned that not everyone lived in Holland, and not everyone appreciated Jason for the lessons he had to teach. And so, as we grew up, we learned the value — and security — found in those who shared our same roots.

For the past 10-15 years, my parents have made it a point to attend as many NDSC conferences as possible. The conference became an annual family trip — and our only real vacation each year. I still remember overhearing the phone call my mom made to the airlines the year they booked tickets with frequent flyer miles. “I’d like to redeem the miles for four round-trip tickets… to Pittsburgh. Yes, I understand that they could be used for anywhere in the country including Hawaii. Yes, I understand I live in NJ. No, I would still like to use them for Pittsburgh.” We listened each year for the announcement of next year’s conference, anxiously waiting for our next big destination.

The first time I was old enough to visit the NDSC Brothers & Sisters Conference, I marveled at the fact that so many others shared my stories and experiences. I wasn’t the only sibling who had to explain to their friends what it meant to have Down syndrome, and I wasn’t the only sibling who hid by the bus stop to make sure my brother didn’t get bullied. This community knew me, and I knew them.

A few years later, at the 2003 NDSC in Philadelphia, I met two teens, who had taken additional steps towards this acceptance that I envisioned. The boys had started a group in their high school called PALS, offering socialization opportunities for students with and without disabilities. I agreed to bring the organization back to my own school, and brought together over 100 students at our first meeting.

A few months later, the two boys presented me with an idea. They had gotten a summer programming agency interested in sponsoring a camp for teens with Down syndrome and they asked if I wanted to be involved. Recognizing that this was a program that Jason could immediately benefit from, I jumped on board and we hosted our first ever Camp PALS in 2004 with 16 campers and 16 counselors.

At the end of the week, campers, counselors and parents shared their experiences. A few of our counselors were siblings that first year and so we experienced camp through the same lens — we watched as these other teenagers volunteered their time to give our siblings the best week of their lives. And then we watched as these counselors, many of whom had never met anyone with Down syndrome before, thanked us and our parents for the experience. Something had clicked — in some way we had managed to give these counselors the same opportunity to learn from the campers that I had growing up with Jason.

We returned to the NDSC conference in 2004 that summer and were honored to receive the President’s Award for our work. This was an exciting moment of recognition, and it challenged us to do more.

Through the next few years, as Jason and I grew, so did Camp PALS — 24 campers in 2005, then 33 in 2006, by 2009, we had 81 campers and 100 volunteer staff. Jason and I grew closer through this experience, building our skills and our relationship as our community expanded.

I began to recognize the social opportunities Camp PALS provided for Jason and thought about the simple things, like recreation programs, that Jason wasn’t a part of at home. So, during the school year I partnered with our local township to put together a year-long inclusive sports program. The three seasons of programming went so well that the department gave us permission to organize a day camp — 7 weeks in the afternoons — working as a supplementary option to Extended School Year. The school board hesitated at first, but when 40 high school students showed up at their school board meeting to speak on the value of this experience, they changed their minds.

Meanwhile, Jason and I began getting more involved with Special Olympics — what was previously an opportunity for Jason to engage in sport while I volunteered or cheered him on — became a new way to find community.

A few years later, when I got to college, the campus felt empty — it was too easy to fall into the trap of self-absorption and disregard for the outside world. I missed Jason and the perspective he had always given me — so I decided to bring the benefits of perspective to Princeton and, using the NDSC conference as a model, I organized the now annual Princeton Down Syndrome Awareness conference which welcomes about 500 individuals with Down Syndrome and their families to campus every Fall.

With each new stage in life, it felt like Jason and I were being pulled further apart — and so I pushed harder to re-create the world we had always shared. I started to learn it wasn’t just siblings who I connected with — but others who had been touched, others who taken the time to develop relationships with people like Jason– and so our community grew larger.

Much of the new programming was linked to specific stages of our lives and so it faded into the background as Jason and I got older. Yet, for eight years now, we have had Camp PALS as a constant: always relevant and always waiting in that third week of June, like a finish line at the end of each school year.

As the years went on at Camp PALS, and we continued to expand, I couldn’t help but wonder what was bringing people back year after year. Why were college students leaving internships, paying for flights across the country? Why were high school students missing finals? Why were young professionals using an entire week of vacation time?

For me, Camp PALS felt like the only week I could breathe, the only week where I got to relive the pure joy of childhood, the carefree moments of spontaneous dance parties and endless karaoke battles. It was everything Jason and I had always enjoyed — just with other people. And so I began to understand the addiction — people were getting a glimpse of a world they had only imagined — a world where the boundaries of judgment, the fear of exclusion and the stress of fitting into some predesigned mold — were gone. Camp PALS was a place where people became something they couldn’t be anywhere else in the world — where they could be themselves at a level they that they never thought was possible.

The relationships strengthened as the counselors and campers grew up over the years. We learned each other’s stories; sharing unique pieces of ourselves as we submitted to an experience that we knew would change our lives with every summer. I remember the night Alex and I stayed up until 3am talking about the romantic relationships we wished that our brothers could have. Or the day Katherine shared with us why she felt so connected to camp – her parents had been told that she would have Down syndrome before she was born. Though the doctors were wrong, Katherine still felt a connection to this population and so returns every year as a counselor. I remember the excitement I felt when Sam told me about his job at Wegmans and his dream to go to college – I wanted that so much for Jason and Sam helped me see those possibilities. And I remember the fire in Mike when he shared with me that while he had originally thought camp was simply a place his brother and he could attend together, it had become something that challenged him — that made him want to do more during the rest of the year.

After each week was over, our counselors would turn to us — aching to know what was next. And so we sent them to the only other place we knew as home — the NDSC conference. We sent them to this community because this is where we started ours. We bring our counselors and campers back to this place year after year — to host exhibits, lead sessions, or just to experience the event — because we knew that after Camp PALS there is nothing that feels closer to our world than the community at this convention.

And through all these stories, the business of planning and the whirlwind of now 113 campers and 150 volunteer staff members, the dust settles, and it’s me and Jason, just like it was when my life started.
I watched through the years as Jason experienced camp with new counselors, new teams, new friends. I watched him grow into a teenager and then into a young man, someone who I can talk to about relationships, about disappointments and about the hopes and dreams I have for us. And as our lives have drifted apart, it has been Jason’s trust, Jason’s love, and Jason’s courage that has kept us together. Whether it’s the text message I get in the morning that reads nothing but “I love you” or the excited greeting I get after returning from Greece when Jason says, “Don’t worry Jen, I prayed that you would be safe,” it is Jason who keeps me going.

The bond between us is hard to describe but became slightly clearer to me the other day. I was telling Jason about the presentations we’d be doing at this conference, and I informed him that we’d be talking a lot about our relationship. “What types of things should we say?” I asked. Jason replied promptly: “Well, you know, we will talk about how we both have Down syndrome.” And for a split second, I thought, “I guess we will.” After a few moments, I looked at Jason, and said — “Bud, you know I don’t have Down syndrome.” “I know,” he said, “but we do all those types of things together.” I thought about this for a while and I came to the conclusion that if having Down syndrome is experiencing Camp PALS, sharing in this community, and growing together as advocates, then Jason is right. It really doesn’t matter which one of us has Down syndrome, or in fact, if both of us did. We’re in this particular place together, and we’re in it for a reason.

And so the story doesn’t stop here. Jason and I grew up in Holland, and there we found community, security, and joy. But the truth is we can’t stay here forever, and so we stand at the front lines.

Over the past 8 years, I’ve put my time and energy into developing programming that brings people into our world. I know that with each immersive experience, our counselors and volunteers leave with a different perspective, and a changed mindset about individuals with Down syndrome. And so we’ve created this perfect world of acceptance and understanding, an oasis that we dream about throughout the year with increasing anticipation as the summer months roll around.

But anyone who is part of our community knows that this oasis is not always real life. People with Down syndrome and those that love them are trapped in a society of vicious stigma and low expectations. The discrimination is endless, and it hurts each and every time. It hurts when an innocent student is bullied or excluded, it hurts when a potential employee is turned down or a new employee is let go because they don’t have room, or they don’t have the energy to support him. It hurts every time someone crosses to the other side of the sidewalk, someone in a restaurant stares from across the room, or someone far away turns to a friend and says something like “That’s so retarded.”

In school, I often wondered if Jason knew when others were picking on him or if it just went over his head. It wasn’t until a few years ago that I first heard Jason talk about being bullied. We had been invited to the 2009 World Special Olympics Winter Games in Boise, Idaho and we were out to dinner with Tim Shriver and some other colleagues. The topic of the R-word or the word “retard(ed)” had come up and so Tim asked Jason what he thought. I expected Jason was only half-listening to the conversation and so I panicked a bit when he sat up in his chair and began to speak. He shared with the group about how he himself had been called the r-word many times at school, and how he struggled to deal with it. I had never heard Jason speak so frankly about this type of experience before. He came home from that trip and began writing letters, journal entries and speeches about the importance of eliminating the r-word. He worked with Special Olympics New Jersey to get public speaking training, and 16 months later he addressed the Special Olympics Global Congress in Morocco sharing his ideas and passion for the cause. This one moment of empowerment — this moment of opportunity for his voice to be heard — set a spark in Jason and left a lingering impact on me.

This moment showed me that, after all the programming, the environments designed to make others feel secure and included; it was time for Jason and I to step out into the real world.

Jason took a message that he wanted others to hear — how was I motivating others? I began to reflect on Camp PALS and other experiences — we gave everyone this week of transformation, this opportunity to see the world differently, but what did we leave them with when it was over? How were we putting this experience into the greater context of the Down syndrome community? We have an opportunity every year with hundreds of young leaders who want to make a difference —and we want them to know that outside of Camp PALS the world does not look the same.

It’s often easy for others to overlook, but we are in a battle — I think everyone in this community has felt it at one point or another. Special Olympics has coined this new era as a “dignity revolution” – a time for those with intellectual disabilities and those that love them, to step forward and make a change. After working at Special Olympics for the past year, I’ve started to better understand this battle — re-focusing my eyes to take the story of one family and to place it in context of the fight within each of the 3.4 million Special Olympics athletes around the world.

And so, we cannot stand still. We cannot rest in this community of Holland, and we cannot be satisfied by having people enter our world and not leave with a clear message. It is our responsibility — as siblings, as family members, as friends, as self-advocates — to take Holland to them. And so my sibling’s report from the frontlines is this: the dignity revolution is coming. Whether you grew up in Holland, crash-landed in Holland, or are visiting Holland on vacation — we need you in this movement. Holland has more heart and more truth than we could ever understand. Holland has hope and, with the right people, the lessons, the strength, and the life of Holland will be known and celebrated around the world.

I thank God every day for the privilege to grow up in Holland and for the blessing of having Jason in my life. I love you, bud.

Thank you.

Our Resources

See also: Preparing Your Other Children chapter in our book, “Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome.”