My wife, Cheryl, and our youngest daughter, Rose, who has Down syndrome, visited our local high school's child development class when Rose was almost five years old. They met with over a 100 teenagers in eight different classes to talk about our family, raising a child with Down syndrome, and our experiences with sign language. The students knew they would be meeting a mom and her “disabled” daughter, but I wonder if they weren’t quite sure what to expect. Their grandparents’ generation had sent away children with this label to live in institutions. Their parents’ generation, when given the prenatal choice, has overwhelmingly chosen not to welcome a child with an extra chromosome into their own lives. The students’ generation was just beginning to gain the experience necessary to understand that who we accept into our lives is most limited by our own prejudices and not by anyone else’s abilities.
So a mom and her daughter stood at the front of the class waiting for their introductions and ready to share a few of their answers. Cheryl’s appearance and mannerisms could have reminded any of the students of their own mothers. Rose had an element of the unknown about her. With her neatly-trimmed, wispy blond hair and preschool wardrobe, she could have been a little sister or a young neighbor, but the shape of her hazel brown eyes and her smooth facial features sent an uncertain message.
"Hi, I'm Cheryl McAuliffe. I'm a mom of three girls; Erin’s a sophomore here, Katie's in sixth grade, and this is Rose, my youngest daughter. She does have Down syndrome. She's four years old, almost five, and she goes to school at our town’s Early Childhood Center. I'm going to talk about my family's life with Rose and about signing today. And Rose is going to help me. Rose, do you want to sign your name for the class?"
"Rose!" Rose spoke clearly and loudly, no signs from her hands. Her speech had come on with a rush through this year in four-year-old preschool. For many months, she had been greeting folks with her voice and not with her hands.
"Can you sign your name?" Cheryl tried again.
"Rose!" came the spoken answer again, even more firm. The months of overlapping speech and sign were fast coming to an end. Speech was now definitely Rose's primary communication choice. What was Mom thinking anyway?
"OK, thanks. Maybe we'll try later." Cheryl said. A brave but infrequent public speaker, she had brought along a few home videos to fill some of the class time and as an easy guarantee of plenty of Rose signing.
Cheryl started with a brief talk on her first experiences as Rose's mom. She touched upon some of the tough issues related to Rose having Down syndrome, from the initial news of her diagnosis, to her difficult birth, to our scare as Rose struggled to recover from heart surgery, to coping with the first year of unexpected medical difficulties, g-tube feedings, learning to eat, and more. It was then, as always, a difficult and significant part of our lives. Rose has more than her share of scars, but her body has healed and grown, as we all have. As Rose grew, the stories became much less scary and more everyday—learning to walk, learning to communicate, working with our Birth-to-3 therapists, and starting school on her third birthday.
At first, Rose listened to her mom’s stories and kept close. But as she became more comfortable with her new surroundings, she moved into the audience to find an empty chair and sit among the other students. The students’ attention was drawn between following Cheryl’s uncommon stories of our everyday experiences and watching Rose's calm, attentive classroom behavior. Rose enjoyed her freedom and continued to move through the classroom, finding another open seat next to another new friend, settling in each time to pick up her mom’s story. Once Rose noticed that this classroom, just like her pre-K class, had its own bathroom, and being an independent child with a need-to-go, she was on her way. The door banged shut behind her, and the steady noise of her progress competed with Cheryl’s presentation. There were lids banging, the toilet paper roll being played out, flushing sounds, the whoosh of water in the sink, and paper towels being pulled down until the door swung open again and an independent and content Rose quietly rejoined the class.
Cheryl moved to the main topic, sign language. Speech was an early challenge for Rose, as is not uncommon in children with Down syndrome. Our first exposure was when one-year-old Rose’s Birth-to-Three therapist introduced signing as a communication aid. The first few signs were simple, whole-hand gestures easy for a young child to form in order to express some basic needs—more, milk, mommy, and daddy. Within six months, she had mastered signs for greetings, favorite foods, and all family names, including our dog.
We worked with her, signing and parallel talking through her daily routines, adding words from our guide, ‘the big yellow book’ of Signing Exact English (SEE). Soon our enthusiasm and Rose’s aptitude quickly outpaced our Birth-to-3 therapist’s expectations. In a little more than a year, Rose had more than 60 signs that covered her extended family and friends’ names and many more signs for her daily activities. Most signs were learned through tens or hundreds of spoken and signed repetitions mixed throughout our days. One obvious exception: after seeing her sisters enjoying a cold sweet treat on a hot summer evening, Rose learned
ice cream on the first take. Motivation is key.
By the time Rose was three years old and ready to start school, she brought with her more than a curiosity to learn; she brought a vocabulary of 150 learned signs and almost another 100 being learned. Her new school was more than ready to bridge her nonverbal gap. Rose’s classroom teacher and speech therapist both signed SEE, the preferred sign system in classrooms where people are combining sign with the spoken words and grammar of English. Over the next year, as Rose made new friends and worked on speech, occupational, and physical therapy, her signing vocabulary peaked at over 350 signs.
Then speech happened, seemingly overnight, but really the result of her development and her team’s hard work. The major pieces fell into place, and Rose made the shift from manual to verbal expression. After a few months of overlapping speech and sign, she was well on her way. We had waited so long to hear Rose speak, and now we had the pleasure of her spoken words in abundance. Her expressive vocabulary, for years limited by the pace of the signs introduced by her family or teachers, was now hers for the taking. She jumped at the opportunity, and more opportunities opened up for her. Speech is a wonderful, universal means of communication.
Cheryl popped a video in to show the class Rose at her signing peak. First up was three-year-old Rose sitting on our living room couch, a little uneasy that she was being asked to sign to a camera. Still, she ran through a list of beginner signs:
eat, drink, bed, more, finish, all done (her made up sign), cracker, bottle, mother, daddy, music, block, boat, ball, cat, and
dog. Cheryl followed with another short video of Rose in a more natural setting with me, Dad, playing, talking, and signing back and forth on a walk to the park. Cheryl narrated for the class, interrupting Rose’s signs as the video showed her playing hide-and-seek, climbing on the playscape, and exploring on a spring day. This was just a glimpse of Rose and her abilities but the message was clear to the students. This wasn’t about what Rose couldn’t do; this was about what she could do. From the students’ perspectives, here was this active, attractive little girl, wearing a label that carried mysterious fears, and yet she had mastered a language that was beyond them. She wasn’t
disabled, she was
differently-abled. In some areas, she was very
abled. In fact, Rose was a very cool kid.
After the videos, Rose helped Cheryl distribute a handout to the class—15 starter signs. Cheryl ran the class through their first signing practice, modeling the signs for them with the students grouped at tables. Rose recognized the familiar roles of the teacher and students from her own classroom experiences. Then, as always, she was more than eager to play the teacher. Cheryl had brought along a few of Rose’s early board books to share with the class. Rose picked up one,
Word Signs – A First Book of Sign Language, and stepped to the front of the nearest table. She opened the book, holding it in the classic teacher-to-class position so the students could see and pointed to the first sign.
“OK,
socks. Like this.” Rose said and then signed
socks for the group. “Now your turn.”
The students answered with their signs, following Rose’s model.
“OK. Good.”
Rose said and pointed to the next page. “Now
crayons.” She signed
crayons. “Your turn.” The students answered again with their signs.
“Good.” Rose said. She turned the page and continued to methodically and patiently work her way through the entire book, page by page, sign by sign. It was clear who was teaching and who was learning.
Rose has had an immeasurable positive impact on so many lives. If I had known four-year-old Rose when we first learned of her diagnosis of Down syndrome, I would have been immensely relieved. In my ignorance fed by outdated stories, I imagined all the worst possibilities. My own understanding was delayed until I could witness Rose begin to grow into her own person.
Now Cheryl and Rose were able to bring that advance comfort and understanding to more than 100 students, to be stored away for sometime when they or someone they love learns they are going to have a child with Down syndrome or some other disability. Rose amazed them like she amazes all people, just by being herself. Unspoken were the misconceptions and ill-informed prejudices and fears that were quietly put aside to be replaced with a healthy, life-affirming image. Their witness to her composure, her model student behavior and teaching contributions, her beauty and cuteness, her humor and precocious manner left them with a lasting positive impression. But the students themselves can tell you their feelings much better than I. Here are some notes from the considerable stack of thank-you letters Cheryl and Rose received:
"You really taught me a lot about sign language, and I thought it was really cool. Rose is a very smart and adorable little girl… it amazed me the way Rose responded and knew the different signs at such a young age. I find it very important for children to experience new thing,s and Rose showed me that she does that very well."
"I think it was a great idea that your family taught Rose sign language because even though she has Down syndrome it puts her ahead of everyone."
"I learned a lot about Down syndrome children. I didn't realize that they could live such normal lives. Your daughter is very cute and smart.”
"I just want to say that I enjoyed you very much, and I learned a lot from Rose. Hey, Rose, keep teaching because you are doing an excellent job!"
We celebrate that we live in a time and place where public high school students can meet a little girl like Rose. The tide is turning for the better. Still, the reality is that in today’s world children that carry a label like hers are routinely denied the opportunities of realizing their life’s full potential, and for that, we all suffer. What is possible is that children like Rose can and do succeed in school and in life. What is missing is this example widely shared in most people’s lives. Too few of us have experienced first hand the differences that are found living outside the narrow, accepted norm. What can be done is limited to whatever has been done, and any other possibility is met with a fear of the unknown that can be devastating and overwhelming. What is the starkest measure of this? More than nine out of ten expectant parents given a prenatal diagnosis of Down syndrome decide to not have the child. A child’s life perceived to be too different is too painful to be considered possible, and that fear of the unknown drives a vital yet uninformed decision. Most parents-to-be, with no personal experience to guide and assure them, will choose not to have a “different” child rather than risk having a child who won’t belong in the lives they imagine for themselves. The need to belong is powerful, and the fear brought on by ignorance is so far from the truth. All the more reason we actively seek and embrace the differences in all our lives and in our communities. Differences are not a barrier. Differences are the path to a full life. The student you welcome into your classroom today, the co-worker you learn from, the neighbor you share with, the friend you grow up, the child you love into your life are all part of that path. I am hoping that the seed of new ideas and possibilities has been planted in a hundred young minds and hearts. Their newfound wisdom gives me hope that tomorrow is going to be so much better than today.