Presents come in all different wrappings and packages. Of course, we need to open the gift to see the wonders it contains. Not so different, I think, when you are expecting a child.
While I was pregnant with Emily, I had no idea she would be any different than our three other children. She was very active inside me, and I gained a healthy thirty-five pounds. There were no indications that this birth would be any different from my previous ones. Emily weighed 8 pounds 8 oz. at birth, but she was three weeks early. This early arrival didn’t arouse any suspicions in us. Emily was nursing well. When she was born, we were in a room to ourselves for the first few days.
When Emily was two days old, a pediatrician was called in to see her. He was quite blunt and asked if we had a history of mental retardation in our family. At this point, we asked him “why the questions” and he replied the nurses in the nursery had suspected Emily had Down syndrome. He had been called in to observe. He told us that some of Emily’s features, such as her narrow, slanted eyes, small ears, and low muscle tone, indicated she had “Downs”. Emily didn’t have a simian crease in the palm of her hand, which was a common indicator, but this doctor had the crease!
Then the hardest work began, that of telling all of our family and friends. On the one hand, we were sharing sad news and I felt the need to encourage others and make family feel better. But on the other hand, at the same time, we had just given birth to a healthy little girl and we (mostly Dave) were ready to celebrate this.
Almost as soon as Emily was born, I went into “teacher mode” and began implementing programs to help her reach her potential. If the books I read said a baby with Down syndrome would walk between sixteen months and three years, by golly, Em was going to walk by sixteen months. We had an Infant Stimulation worker, Carol, who came to our home biweekly to work with Emily and I. Carol would work on Emily’s language and fine motor development while I took copious notes and made diagrams so I could remember the exercises to work on daily once Carol left. I transferred these exercises to check lists on charts so I could check off ten repetitions of each exercise daily. Carol was an invaluable resource to us, and because she could see we took Em’s development seriously, she invited a physio-therapist from Halton Region to come and do an assessment on Emily and see if she thought Em could benefit from physio input. Up until this date, thirty-six years ago, no child with Down syndrome was on this program in our area.
Mary, the physio-therapist, assessed Emily who scored low on her level of muscle tone, even for a child with Down syndrome. However, Mary could see we were willing to “put in the work” with Em and she became an instrumental part of our program. Mary began visiting other children with Down syndrome as well, and when the numbers became too great, she started group sessions in Milton where mothers would bring their babies with Down syndrome to a central location, and she would work one-on-one with each mom. To alleviate the problem of note taking, Mary conscripted me to be her videographer. I would videotape Mary working with each baby. Mary would transfer this video to a VHS tape which the family could take home and watch to review these important skills. Mary became a great family friend, and she is always inspired to visit with Emily and is so proud of her accomplishments.
I remember thinking that I was fooling everyone when I took Emily out and that no one could even tell she had Down syndrome. One time a lady came up to us in the grocery store and commented on Emily being “mongoloid”. After I recovered from the shock and outdated term for Down syndrome, I couldn’t believe she could tell! Years later, when I looked at pictures of Emily as a baby, I realized I was only fooling myself. I had wanted to “fix” Emily and make her the very best she could be.
I looked into the Philidelphia Institute who had developed a patterning program for children with Down syndrome. I met with a Mom who lived nearby and was on the program with her daughter. After seeing it, we felt strongly the program wasn’t for us. I did read their “Teach Your Baby to Read,” and implemented their flash card approach to building sight vocabulary. When Emily was sitting at various times throughout the day, I would flash the cards in front of her. I made books for her to read from family pictures. By the time Emily reached kindergarten she had quite a large repertoire of sight words, which gave her a bit of a head start.
I did feel Emily was blessed to have siblings to mirror and to love her. She took her place in the family and truly owned her spot as the fourth child, second youngest. She was Mark’s big sister. The children pitched in as much as they could with these daily exercises I put Emily through. When she was learning to crawl, we put a towel under her tummy, which Beckie held up and I would position myself over her and use my knees to prod her legs forward and my hands would move her hands in the proper alternate pattern. I did wear out a pair of jeans in the knees doing this! I remember feeling like Dave got to be the “fun guy” when he got home at night. He would tumble and play with all of the children and wrestle with them on the carpet. He was always wonderful at that, and once he arrived home he was all theirs. The girls took dance lessons, and the boys played rep hockey, and they all participated in Kids Club and Sunday School. Wherever we went, Emily came along and we found all of our friends and family were extremely supportive of Emily and very interested in her development.
When I pictured Emily growing up, I thought her intellectual development was of supreme importance. I guess that is why all of this stimulation was so important to me. In hindsight, if I was making suggestions to new parents, I would stress the importance of social development. As with all children, responding to others in a kind, compassionate way, making eye contact, creating a healthy self-image, are all essential for making friendships, working in a job, taking instruction, enjoying others, and showing compassion and empathy for others.
Emily has always embraced her faith. Faith has never been an issue for Emily. Faith in Jesus just makes sense to her. Her favourite part of the church service is worship. She loves the singing. She does listen to the message and can be very moved emotionally by it. If I am away one Sunday, Emily takes notes for me so I don’t miss out. She copies the sermon points from the overhead. This wasn’t a request from me (I never thought of it), she just picked up the slack. Over the years, Emily has helped in the nursery, and served at seniors’ dinners at our church.
As I mentioned earlier, all of our children participated in competitive sports both in our community and at school. Emily went to watch and cheered for her siblings. When she got a little older, Emily started gymnastics, then ballet, recreational soccer and swimming, all in community programs. When Emily was thirteen, Dave saw an article in the paper about a swim program offered by Special Olympics. He took Emily the following week, and we look back on this as a watershed moment. Emily immediately loved the interaction with new friends, which nicely filled the lagging invitations to birthday parties and outings with school friends. We enjoyed seeing this interaction, and we also valued the fitness component and her ability to shine in her own right while having fun. Two years later, we heard about rhythmic gymnastics being offered through Special Olympics. This became Emily’s sport. She had always loved to dance in her room. Emily is also a natural performer and enjoys the spotlight. As Emily climbed the ranks in this sport, she excelled, and her travels took us to China, Greece, and Los Angeles for Special Olympics World Games, as well as countless competition across Canada, the United States and England.
Emily has had many wonderful opportunities to develop leadership qualities through our local Down syndrome association, HDSA. The Graduate Group plans and organizes social events for their group. As well, these young adults volunteer at HDSA events such as our yearly Gala in March, the Holiday Party, the annual Family Barbeque, and of course, our annual Go 21 walk event. Emily and her good friend, Adelle, go “on tour” in March and speak at many local school assemblies sharing about people who have Down syndrome and highlighting their abilities.
Emily works one shift each week at Boston Pizza in Milton and volunteers at the Darling Home for Kids. She also helps every Tuesday at Foxfield Stable and works with the horses once she has finished her riding lesson.
Dave and I, and Emily’s siblings and extended family, feel that God has generously blessed our family with a wonderful gift, in Emily. She makes us laugh; she challenges us to adhere to the moral standards we uphold. She strengthens our faith, makes us look at the world with awe and wonder, and she shows us what is possible through hard work and perseverance. She is very forgiving and most of all loves a good party.
Emily retired from competing in rhythmic gymnastics two years ago, and is a coach with the Georgetown Butterflies. She is now very involved in competitive swimming with Special Olympics. This past weekend, Emily and I were away at the Defi Sportif in Montreal. Emily was swimming the 100 IM (Individual Medley) and was out touched at the finish line by another athlete. Emily would get the silver medal. As the athletes swam to the outside lanes at the end of the race to clear the pool for the next event, I noticed Emily wasn’t leaving her lane. She waited until the athlete who won the race swam by so she could give her a high five. I had tears in my eyes when I saw what had transpired – an unnoticed event to most. This is our Emily. We are so proud of her.
Debbie Boycott is a retired teacher, mother to five, and grandmother of eight. She and her family were founding members of the Halton Down Syndrome Association, along with three other families. She lives outside of Milton with her husband Dave and daughter Emily.