When I Interviewed a Down Syndrome Trailblazer
A few days after Alice was born, I got connected with the Down Syndrome Association of Central Ohio (DSACO). DSACO is a group of parents in central Ohio who all have kids with Down syndrome. There are hundreds, maybe even thousands, of members. I found out that DSACO hosts monthly dinners for members. I couldn’t wait to go, so I attended my first one when Alice was just a few weeks old. It was so comforting for me to meet other moms who were in the same situation as me.
A few moms had kids with Down syndrome that were right around Alice’s age. A few moms had kids with Down syndrome that were school-aged. And then there was one mom, Jan Worthington, who has a son named Scott, 54, who has Down syndrome. As soon as I heard the beginning of Jan’s story, I needed to know the rest. I was fascinated by the idea that she had been on this journey for so long. And especially intrigued that she chose to take her son with Down syndrome home during a time when the vast majority of kids born with Down syndrome were taken away shortly after birth, and put into institutions.
When I met Jan I think I asked her about a million questions. I wanted to know all about her journey with her son: how it was to raise him, what he’s like now and what advice she had for me as I started on my own journey raising a child with Down syndrome. The more I talked to her, the more l realized that her story was so remarkable and inspiring that it simply had to be told. Since journalism is in my blood, I asked Jan if I could interview her for my blog. She was happy to oblige. Jan, Scott, Alice and I met up at Steak ‘n Shake (Scott’s favorite restaurant!) and I asked her all kinds of questions and collected a few photos. Jan is simply an amazing person and a true trailblazer in the Down syndrome world. Once you talk to her for a few minutes, you realize she’s a huge reason that we are where we are now with full inclusion of people with Down syndrome. I’m honored to have met her.
I’m so excited to have had the chance to interview Jan and begin to tell her powerful story. Enjoy!
Tell me a little bit about your life before Scott.
Ray and I had been married for three years when we had Scott. We had an adorable 2-year-old daughter, Lea. We lived in a two-bedroom apartment in the country in Whitehall, Ohio.
What year did you have Scott? How old were you when you had him?
Scotty was born on Oct. 18, 1963. I was 20.
How did Scott’s birth go?
Scotty’s birth was quick. I don’t remember having much pain with the delivery. I don’t remember if Scott cried out. I don’t even remember what time he was born! Only that he was a boy and he was premature. Scotty was born at 30 weeks. He weighed three and a half pounds and he was 17 inches long. He was placed in an incubator immediately, and I didn’t even get to see him before he was whisked away.
The doctors quickly discovered that Scott had a duodenal obstruction. He was operated on when he was just two days old. Then, he ended up being in the hospital for the first few weeks of his life. Eventually, Ray had to go back to work and I had to go back home to care for Lea, but Scotty had to stay in the hospital.
When and how did you find out that Scott had Down syndrome?
It was Monday, Nov. 25, 1963. I was home watching President Kennedy’s funeral on our little black and white TV. Ray had returned to work. The phone rang and the lady on the line said that the pediatrician wanted to see me as soon as possible. When I got there, the pediatrician gave me a good report on Scott’s health. Then he said, “I suspect that your baby might be ‘mongoloid.’” In those days, it was not called “Down syndrome,” it was called “mongolism.”
I leapt straight up out of my chair and screamed, “Oh no!” And then, I blurted out the first thing that came to my mind, “Where is he going to go to school?” The pediatrician replied, “He’s not going to go to school. He’s not going to walk. He’s not going to talk. And he’s probably not even going to live.”
I felt numb. I was so stunned and fearful. My heart was broken.
Two thoughts were racing through my mind.
1. When I was 13 years old my cousin, Beverly, had come to spend the week with me. She brought a little book with her. It was called “Angel Unaware” by Dale Evans. Dale Evans was a very famous movie star. She was my hero! I watched all of her western movies. The book was about her daughter, Robin Elizabeth, who was diagnosed with “mongolism.” The doctors recommended that Dale put Robin in an institution. Dale emphatically rejected the idea. She said they would take the baby home because she was theirs and they loved her! I remembered telling Beverly at the time, “If I ever had a child like that, I would do exactly what Dale Evans did and I would take the baby home.” I then thought that I should go to the courthouse and change Scott’s name to Dale! I had wanted to name him after her to begin with, but Ray had chosen the name Scott instead.
2. I knew that Dale Evans was a woman of devout faith. I didn’t have that background, so how could God place me on the same level as Dale Evans? She’s a hero. I’m just a country girl with a 10th grade education. How can I be trusted with a child that needs so much? How are we going to afford his care?
These thoughts, and more, were racing through my head. But I do remember telling Beverly that day that I would take the baby home and love him. However, when the nurse reached out to hand Scott to me, I hesitated.
I stood there in shock. My mind was racing. Was I able to take care of this tiny little creature that needed so much? My heart felt like it was breaking in two. My arms felt so heavy when I finally lifted them to receive him from the nurse. I left the hospital that day without optimism for the future of this child.
I stared down at Scott as we left and I felt so heavy with grief and fear. But he simply stared back at me with the prettiest, brightest blue eyes. I felt my heart lurch, but he laid very quiet in my arms…just looking up at me.
My mom told me not to tell anybody about Scott until the doctor told me for sure about his condition. She said he wouldn’t have a chance in life if I told anyone. But I knew. I just knew. And the doctor knew too, even though he said he only “suspected.”
(Later on, I found out that the doctors knew that Scott had Down syndrome all along, but they didn’t expect him to live during his initial hospital stay after birth, so they didn’t bother to tell me. My delivery doctor confessed to me later that if he died, they weren’t going to tell me.)
The day after I finally brought Scott home from the hospital, I went to my family doctor. I expressed doubts about my ability to care for him. Instead of encouraging me, he suggested that I put him in an institution! I wasn’t prepared for that answer and I welled up with fear. I didn’t know what an institution was and I couldn’t conjure up an image. But that wasn’t an option for Dale Evans, so it wasn’t an option for me either.
How did your family react to Scott having Down syndrome?
My in-laws had a hard time accepting it. My parents were skeptical. They didn’t really talk about it much. I, on the other hand, couldn’t shut up about it. And by the time Scott was 2 or 3 years old, they all warmed up to him because they realized how adorable he was!
Did you have any support as you tried to navigate your new life with a child with Down syndrome?
No — not at the beginning at least. I had nowhere to turn for help or support. When Scotty was still a newborn, I went to the library to look up Down syndrome. I didn’t find any information that gave me hope. “Mongoloids” were described as “’imbeciles’ with a lifespan of two to five years.” Needless to say, I experienced great anxiety for the next several years.
Shortly after Scott was born, I somehow learned about another family that lived on one of the country roads near us that also had a son with Down syndrome. One evening, I went to their house and knocked on the door. The mother came to the door. I asked if I could see her son. She called him to the door and I just stared at him. It gave me a lot of comfort to see that another mother had chosen to bring home her baby with Down syndrome. I’d say he was about 5 years old.
I said, “Thank you,” and then turned around and drove off. I never saw them again. I never even thought to reach out to her for help.
Then, when Scotty was 3 years old, we bought a new house and found out about a small school nearby for preschoolers who had different challenges. Two of the other children had Down syndrome, and the remaining kids had other challenges. The school was in a church within walking distance of our new home. The prerequisites were that he was between three and 6 years old, potty trained and could walk on his own. Scotty qualified. I used a little red wagon to pull him there and back again every weekday morning.
The school taught Scotty personal hygiene, how to tie his shoes and how to interact with a group of peers. It also gave me the opportunity to meet other mothers in my same situation. Collectively, we could share experiences and ideas about how to best rear our children and prepare them for next steps. We were all struggling through a circumstance in which we had no prior experience and very little information.
I’m so happy that today’s new mothers have each other and that — with the help of DSACO — they’re able to meet and share experiences.
What was Scott like growing up? How did his development compare to that of his siblings?
Well, we ended up having another little boy 10 months after Scott was born. His name is Billy. Scotty’s progress was delayed, but Billy’s growth and progress was typical. One day when Scotty was about a year and a half, a lady knocked on my door and announced that she was from a county office that offered support to families, so I invited her in!
Mrs. Schue was kind and informative. She told me what kind of toys to buy for Scotty. She said he was progressing well and he was alert and curious. Mrs. Schue ended up coming back each month for a visit. During each visit, she measured Scotty’s progress. She said that Billy was a great contributor to Scotty’s progress. When Billy sat up, then Scotty wanted to sit up. Billy crawled, Scotty crawled. Scotty wanted to walk like Billy and then use the potty like Billy.
It was like having twins! And then the mischief in double doses came along. Scotty stole Billy’s bottle, Billy stole Scotty’s binkie, Scotty wanted to sleep in Billy’s bed with Billy! Billy wanted his bed to himself. They were always squabbling, and Scott was always the instigator. Scotty had so much energy, but Billy was more passive. Scotty got into everything. And after Scotty made the mess, then Billy would jump in the fray. They wore me out every day.
We didn’t really know what to expect from Scotty because the doctors told us that he would not reach any milestones. Well, he reached every milestone. That meant everything he did, we clapped and laughed and encouraged more from him. Lea and Billy progressed just fine too, but they didn’t get nearly as much fanfare and attention.
Over the years, Lea and Bill were so instrumental in shaping Scott’s life. He learned horseback riding from Lea, and he was very good at it. He even won ribbons showing his horse in 4-H shows.
Do you have any stories about Scott that you’d like to share?
When Scott was 4 years old, we were driving home and came upon a carnival at a shopping center. The kids wanted to stop, naturally. I said OK, but I explained that I only had $2. With rides being 30 cents each, they could only ride two rides each and then we had to go home. They said OK.
The first ride was a train going around a track. Scotty was having so much fun — clapping, laughing out loud, throwing his arms up in the air, yelling, “wheeeee,” bouncing up and down. The carnie running the ride was thoroughly enjoying watching Scotty. When the ride was over, the carnie gave me back the three tickets and smiled at Scotty. I told the kids they got to ride two more rides. On the second ride, Scotty was so excited and reacted the same way as on the first ride. The carnie got such a kick out of watching him that he gave my tickets back to me.
The same thing ended up happening on all the rides! That means the kids rode every ride twice and we had all of our tickets left over when it was time to go home.
I don’t think the carnies had ever seen a kid like Scotty — just so full of pure joy.
How old is Scott now and what is he up to these days?
Scott is 54 years old now! (And the doctors told me he would not live…) He has lived on his own since he was 20.
Scott really likes to dance and play golf. He participates in a dancing gala every February, and he takes golf lessons every summer. He and Bill play golf together all the time, and Bill volunteers coaching golf lessons for people with Down syndrome.
Scott also works every weekday for six hours each day. He mostly does packaging, which involves assembling and collating literature and boxing things for shipping. He has been working at the same place for about 25 years. He enjoys it very much. He gets paid every two weeks and he’s always so proud to announce, “It’s payday! I’m rich!”
Scott also loves seeing his family. He sees Bill regularly, and he sees Lea at least once a year when we go visit her in Virginia for Scott’s birthday.
How has having a child with Down syndrome changed your life?
I just don’t know what life would have been like without Scott. He has brought an awareness to many, many people.
What is your advice for new moms embarking on this journey of raising a child with Down syndrome?
Two things I failed at: lavish the siblings with attention and keep a journal! If I would’ve kept a journal back then, I’d have a best-seller today.
Did you always take Scott everywhere with you when he was a kid?
Yes, of course! We took Scott everywhere.
We took him to restaurants, concerts, horse shows, Little League baseball games, work, Mexico, New Mexico, Disney World in Florida, shopping, parades, ice cream socials, museums, street fairs, county fairs, state fairs, Texas, weddings, family reunions, funerals. Everywhere we went, so did Scotty.
People stared at him, but I didn’t care. I wanted people to look at him. I wanted them to realize that people with Down syndrome are not “imbeciles.” They’re living, breathing, functioning human beings who have a right to be here — the same right as you and me!
I wanted people to see how cute, curious, loving and friendly he was. I wanted people to realize that there were people like Scott in the world and to wonder where they were. They weren’t out in public. I looked for them. I searched faces of babies and children in public. I didn’t see people like Scott. That’s because people either sent their kids with Down syndrome to institutions, or they hid them at home. And to those that stared, maybe they were thinking about a loved one that was at home.
I ran into that once when I brought Scotty to a Tom Jones concert with me. Two women — one sitting right next to me and one sitting in front of me — told me that they each had a family member who was developmentally disabled at home. Both of them said they never thought about bringing their loved one to something like a concert. I said I never thought about not bringing him.
Bringing attention to these children and getting people to think about them, to start thinking that they have a right to be here — that was my way of thinking.
Few strangers asked questions, but I could see them staring at him. I thought that was good. Most questions came from other children at Lea’s horse shows and Billy’s ball games.
Bill was bullied on the bus about Scott — but the bully was given an awareness. Lea and Billy weathered through and influenced a whole new generation of young minds about people like Scott.
Today, I see people with Down syndrome everywhere. They work, play, attend school, go to college, get married, dance, play golf, star in TV shows. They’re runway models, baby clothes models — and now the Gerber Baby!
We’ve come a long way. It’s been quite a ride, but worth every moment. I believe that ride was given to me by a higher power that I only had a vague and distant consciousness of at the time. If He gave me that job to do — and if that was the plan all along — then I hope I fulfilled His plan for me.
The group of parents who have a child with Down syndrome today refer to themselves as “the lucky few.” Do you consider it a privilege to raise a child with Down syndrome?
Oh, absolutely! In the beginning, I questioned God’s reasoning, but I have since thanked Him many times over for the awesome gift He gave me.
A version of this story originally appeared on wonderlandmommy.blogspot.com.
Photo submitted by contributor.