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My wife Cheryl and our
youngest daughter, Rose, who has Down syndrome and is almost five years
old, recently visited our local high school's child development classes.
Over the course of three weeks they met with over a hundred 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 out their lives
in institutions. Their
parents’ generation had overwhelmingly chosen not to welcome a child
with an extra chromosome into their own families. The students’
generation may have considered these difficult questions of life outside
the narrow norm but they were 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 easily reminded any
of the students of their own mothers.
Rose had an element of unknown about her. With her neatly-trimmed,
wispy blond hair and preschool wardrobe she could have been a little
sister or a young neighborhood kid but the shape of her hazel brown eyes
and her fine, smooth facial features sent an uncertain message.
"Hi, I'm
Cheryl McAuliffe. I'm a mom of three girls.
Erin
's a sophomore here at the High School. Katie's in 6th grade at
Sage
Park
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 answer back, even more firm. The months of overlapping speech and
sign were fast coming to an end. Speech was now firmly 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, Cheryl 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 with Rose. She 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 much more
everyday: learning to walk, learning to communicate, working with our
Birth-to-3 therapists, and starting school on her 3rd birthday.
At first,
Rose listened to her mom’s stories and kept close by.
But as she became more comfortable with her new surroundings, she
would move into the audience to find an empty chair and sit alongside 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,
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 on to the main topic of
their visit, our family’s experience with sign language. Speech was an
early challenge for Rose, as is not uncommon in children with Down
syndrome. Cheryl told of our first exposure to sign language when Rose was
about a year old and our Birth-to-Three therapist introduced us to signing
as a communication aid. The first few signs were simple, whole hand
gestures easy for a one-year-old to form and let Rose express some basic
needs such as more, milk, mommy, and daddy.
Her initial signing progress was noticeable but not spectacular. As
the months went by, however, her spoken words were still few but her
signing vocabulary continued to grow steadily.
Within about six months she had mastered signs for greetings,
favorite foods and family names: Mom, Dad, Erin, Katie, and Pepper, our
dog.
We worked
with her, signing and parallel talking through the routines of her 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 that covered 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 two older 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, and her new school was more than ready
to bridge her nonverbal gap. Rose’s new classroom teacher and speech
therapist both signed with SEE, the preferred sign system in classrooms
like Rose’s, where people are combining sign with the spoken words and
grammar of English. Over the
next year, as Rose started on her academic career, 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
just 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 3-year-old Rose sitting on our living room couch, just a little
uneasy that she was being asked to sign to a camera.
Still she ran through a short 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.
Then Cheryl followed with another short home movie, filmed by big sister
Erin, of Rose in a more natural setting with me, Dad, playing, talking,
and signing back and forth on a walk to our neighborhood park. Cheryl
added narrations for the class, interrupting Rose’s signs as the movie
showed her playing hide-and-seek, climbing on the playscape and exploring
the park on a cold, early spring day. The videos were just a glimpse of
Rose and her signing abilities but the message was clear to the students.
These home movies weren’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 went beyond their own young adult abilities. She wasn’t
disabled, she was different-abled. In some areas she was very abled. In
fact, Rose was clearly a very cool kid.
After the
videos, Rose helped Cheryl distribute a handout to the class of 15 starter
signs. Cheryl ran the class
through their first signing practice, modeling the signs for them. The
students sat in groups at tables around the classroom working on their new
signing vocabulary. 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 called “Word Signs – A First Book of Sign
Language” and stepped to the front of the nearest table.
She opened the book to the first page, holding it in the classic
teacher-to-class position so the students could see clearly 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 abundantly 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. But I had no first
hand experience from which to draw my own conclusions.
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 comfort and understanding to over a hundred high school students, to
be stored away for sometime in the future when they or someone they know
and 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. She has always and continues to show us that she is a
very interesting, very capable person. 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 often precocious manner left them with
a lasting positive lifetime impression. But
the students themselves can tell you their feelings much better than me.
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 …I never knew how simple signing could be, 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
things and Rose showed me that she does that very well. Rose, you're
a very brilliant girl. Keep up the good work."
"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 …I never knew how simple signing could be, 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
things and Rose showed me that she does that very well. Rose, you're
a very brilliant girl. Keep up the good work."
"Rose, I am so proud of you! You are such
a smart girl! A couple of months ago I was thinking about learning sign
language but I held off and didn't get the books. But your visit is
pushing me to go start now so I could sign with people and adorable girls
like you."
"Rose really is a miracle. She is smart
and has come a long way from not talking at all. It's sad to hear
about her surgeries because she is so sweet and adorable. She shows
her smartness and she has great character."
"Thank you for coming and showing us all
the different types of sign language. Rose is very cute and very
smart.”
"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."
“Thank you for your patience and the effort
you put into talking to out class, and your daughter is really smart for
her age."
"I learned a lot about Down’s 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 expecting 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 that 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 fearless, love-filled life of
potential realized. The
student you welcome into your classroom today, the co-worker you learn
from, the neighbor you live with, the
friend you grow up, the child you love into your life tomorrow 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 new found wisdom gives me hope that tomorrow
is going to be so much better than today.
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