Down Syndrome Guild of Greater Kansas City
5960 Dearborn Street, Suite 100
Mission, KS 66202
Proud Fathers Tell Their Story
DSG is proud of our amazing fathers who stand tall as advocates for their children each and every day. We are pleased to have a Dads Appreciating Down Syndrome chapter here in KC which operates under our umbrella. Visit dadskc.org to learn more about how you can get involved.
Funny how one little chromosome can change so much in so many lives. Some call it a disease, others call it a disorder, most call it what it is, Down syndrome. I call it God’s plan. When my daughter Lauren was born I hurt all over. I wondered why this was happening to us. What did we do? What didn’t we do? Why were we being challenged like this? How would this affect us? How would it affect our other children? Time passed so slowly. Minutes seemed like hours and hours seemed like days. Questions raced through my mind and I didn’t have any of the answers. I needed answers, or at least I thought I did. Then it just all became clear.
Acceptance is a funny thing. It just falls upon you. One day you think that you are so very far from it and the next day it is inside of you. These moments in life can only be one thing; they must be God's Grace alive in each of us. I have come to know these moments as "Little Wonders" moments. Too often we miss them or simply don't recognize them because we are too busy looking at the big picture rather than the small details that together make up the picture's beauty.
When Lauren was born we didn't suspect we would have a baby with Down syndrome. I watched while the nurses cleaned her and tried to assist with her breathing. Then, she opened her eyes for a brief moment. My heart dropped as I looked into her eyes and knew at that very moment that she had Down syndrome. I could see it in her eyes.
For the next 48 hours she didn't open her eyes for more than a second at a time. It was during this time that life seemed to stand still. Then suddenly she had a period of time that she was wide eyed. Looking around taking in the sights, admiring the beauty that surrounded her, her new world. It was at that time I had another Little Wonders moment and I believe this was the moment of clarity. I looked into her eyes and was able to see my little girl. She wasn't “a baby with Down’s Syndrome” but instead simply my Lauren Elizabeth. Her deep blue eyes shined like the morning sun across a glassy lake.
It was then that I could look into them and not be frightened at what I saw but rather now appreciate the gift, my reward. She wasn’t a test or a challenge from God but rather a reward. My questions became answers. I knew that my life would never be the same but now I looked forward to the new experience. I was sure that my other children would understand acceptance and know love in a wonderful way. I quickly realized that Lauren had become the teacher in the family and the rest of us students.
Now, a year later, we continue to learn. We learn how to appreciate every day. Approach every day with a smile. Sure, we have challenges just like everyone else. But now they don’t seem so overwhelming. Our family tries to look at life and appreciate it for what it is rather than what we think it should be. We continue to cherish each other and recognize each of us for what we are, gifts to one another. Our family’s perspective will forever be changed and I thank God for it.
By, Scott Thompson
STEPHEN SHOWS THE WAY
When our son Stephen entered high school in 1998, we were feeling pretty good about how his life had progressed. It had been a long, eventful journey but Stephen, through his hard work and courage, was included in the regular school system with support, he had a small group of friends, he was involved in sports programs through Special Olympics, and as manager of both football and basketball teams at Shawnee Mission East and he was able to be on his own much of the day. He appeared happy and content. Then one day, with one question, we realized that what had been accomplished was not an end but only a beginning and that Stephen had taken the lead in planning his future.
That day, Stephen came home from school with a flyer to present to us and we could tell he was excited about it. It announced “College Night” for students trying to determine where they might be interested in going to school. At first, I dismissed it and said that I didn’t think we could go, that it really didn’t involve us. I felt terrible but we have never wanted Stephen to have a false sense of what his capabilities are. I continued to think about it and I saw that I had hurt him and he was confused. His brother and sister had gone to college and it had been a huge event in their lives. What made this so different for him? Our philosophy since the day he was born has been that he lead a life that is as much like his older two siblings as possible. So, I reconsidered and I took him to “College Night.” The next day, June and I also began researching to find out if there actually were any post graduate schools for people with special needs.
During the next two years, we visited programs around the country, from California to Connecticut. Each had its advantages and disadvantages. But, we chose the program at Eastern New Mexico University in Roswell, New Mexico because it most completely integrated the students with special needs into the general population, both residentially and socially.
Stephen spent two years in Roswell and loved every minute. Going to college was a tremendous growth experience for Stephen and taught him much in the area of independent living. But, as always, June and I didn’t fully appreciate how much Stephen had grown and Stephen was way ahead of us in determining what his next step in life should be.
While Stephen was in Roswell, June and I had begun meeting with friends who had children of similar age and with similar needs as Stephen. The purpose of the meetings was to exchange information about what Stephen’s life would be like when he returned to Kansas City. But, none of the ideas exchanged during those meetings, which ranged from group homes to buying duplexes or fourplexes, seemed to be a good fit for our son. Consequently, we had begun to believe we might need to start a new program in Kansas City. Plans for that program had not made significant progress, however, before Stephen came home the summer before his last year at Roswell. Stephen’s negative reaction to living at home (for the first time in his life, he developed attitude) convinced us we had better have something in place by the time he graduated.
Through hard work by many parents, we managed to start The Mission Project within a few months of Stephen’s returning to Kansas City. Stephen moved into his apartment (with his best friend as a roommate) in August, 2004. Today, he is gainfully employed at Mission Medvet, works out regularly, attends computer, theater and ballroom dancing classes, participates in Special Olympics basketball and bowling, and receives regular support from a group of professionals hired by The Mission Project. June and I continue to have input through our participation on the Board of Directors and through our participation on various committees.
Being Stephen’s parents continues to be a challenging, surprising, delightful and rewarding experience. When Stephen came home that night and presented the challenging idea of attending college, we were confused about what to do. How do parents negotiate between what their son or daughter is capable of and what is unrealistic? But how can you know what your child is capable of, if he or she never has the opportunity to try? In Stephen’s case, we were fortunate to have located a safe environment that allowed Stephen to begin to become independent. We would never have guessed, that fateful night, that Stephen would be living on his own, gainfully employed, busy with activities and surrounded by friends, just 5 years later. Looking back, I have come to realize Stephen knew all along what he wanted but, to accomplish it, he had to show his parents the way.
By Larry Rouse
I KNOW I COULD NOT BE MORE PROUD
The moment the doctor pulled him from my wife’s body, I sensed that we had a baby with Down syndrome. I knew in that instant that our lives had been changed forever. Oh sure, when our other two boys were born, our lives were changed as well… “This was a whole new ballgame,” I thought to myself. I chose not to tell my wife, Dana, what my guess was. I thought that giving birth was enough stress for that moment. We both had known that there was a very slight chance that we could have a baby with Down syndrome, but a level 2 sonogram showed that everything looked good and measured up fine.
A thousand things raced through my mind as I told Dana how beautiful he was, while watching the nurses take him over to be cleaned off and wrapped up. And he was beautiful… very full of energy and complaining at the top of his lungs about all the bright lights and commotion in the delivery room. My wife and the doctor were chatting away as he sewed her up and I watched as they inked up our baby’s feet for the footprint portion of the post delivery, happily snapping photos and shooting home video. We were off on a very new adventure… and I was in love.
Only months earlier, my wife and I were saying how we didn’t think we could handle having a child with Down syndrome. We weren’t the right kind of parents; it would be to stressful, etc. Boy, were we wrong. Not only did we handle it, we embraced it head on. You get over the shock and you learn. You learn about things that will scare you…and make you happy…and make you cry…and make you happy again and again and again. We couldn’t be happier.
But I imagine that there are many people in the world that can not handle it. And I hope and pray that a child with Down syndrome is never given to them. I believe that we were all chosen for this job. These kids need a little extra help and we were the ones picked to carry that out. If you have a child with Down syndrome, then you know you will handle it. You, too, have been chosen. It’s automatic. You have been selected to parent an elite group of kids that beam love into every corner of a room that they stroll into.
Keaton has two older brothers. Ian (11) and Fletcher (5). Talk about plenty of stimulation! It’s wonderful to watch them all play together. Keaton turned 3 in October and is such a joy to have around. I could not imagine life without him in our family. To us, he’s just our third son. I don’t even think about it. Like I said…it’s automatic.
As a father, I want Keaton to be accepted in every circle of life that he encounters… from the small tasks in life to a possible college education. I want that for all my boys. I know that for Keaton, some circles will be bigger than others. But there are big circles for all of us. Our kids just need a little help getting the circle drawn. I believe in my heart that children with Down syndrome make a positive difference in our families lives as well as complete strangers lives… and we should all be proud of every little thing that they learn and do. Praise them and you’ll get back more love than you ever imagined. I know that I could not be more proud.
By Brian Turner
I AM PROUD OF WHO SHE IS
We have all experienced the unknown of what the future holds when we are given the gift of a child with Down syndrome. We are uncertain if our child will be able to experience or accomplish some of the hopes that we hold for the future of any of our children. Also, will she be able to just have an average childhood and have the opportunity to grow and make contributions to our community?
After Jennifer was born, I knew that she was a child with special needs. However, Dianna and I also wanted to give Jennifer the opportunity to be an “average” child with a “normal” childhood. One of our main goals as parents was to allow Jennifer to try whatever she wanted. Our primary expectation was to “try your best.” Whatever “her best” was acceptable so long as Jennifer had the opportunity and tried her best. Because, doing your best has always been a principle belief for me. One of my hopes is that I have been able to give my best effort in helping Jennifer with her activities.
Yes, Jennifer (and our family) have experienced our share of challenges as she has grown over 12+ years. The most recent example was the transition to middle school, where a new group of teachers had to learn about Jennifer. As always in life, communication within our family and to those who work with Jennifer has been key.
When taking some time to reflect on this column, I realize that there have been many instances where Jennifer had the opportunity to be an “average” child who happened to have special needs. For me as her father, some of the best examples were when Jennifer:
• Was voted by her 7th grade class to best exhibit the character trait of kindness
• Achieved the middle school honor roll for her school work
• Was asked by friends to participate in various activities
• Was recognized by her teachers or coaches for her efforts to do “her best”
• Was recognized by her teachers as an Optimist Club Super Citizen
• Was voted by the Lee’s Summit Girls Softball League coaches to receive the “Blue Darter Award” for sportsmanship
• Has given her best effort
My hope is that I have been able to give my best effort to guide Jennifer and to be there for her. I am proud of who she is, what she has accomplished and what the future holds for Jennifer.
By Paul Neihouse