My Story
The day began quietly enough as Rita's mom
and dad headed to the Foothills Hospital in Calgary for some routine fetal
monitoring as the due date approached.
The nurse strapped on the sensor and noticed the baby wasn't
moving. She suggested the baby was asleep
and mom should drink some juice to wake it up--to no avail. A group of resident physicians were walking
through the maternity area, on their way to see another patient, and stopped in their tracks as they looked
over at the tracing.
"There's a decel. There's another decel." said the
resident, looking alarmed.
"What's a decel?" asked the
parents.
"It means the baby's heart is slowing
down. There is fetal distress."
A team sprang to action--taking bloodwork,
wheeling the stretcher into the delivery room, with an anaesthetist quickly
running from another delivery room as an
emergency was in progress and an immediate caesarean was needed.
So began Rita's traumatic entry into this
world. Her parents first saw her hooked
up to machines on her way to the NICU. A
doctor came to talk to them. He
explained her head was small and she had an extra fold of skin at the inner
corner of her eyes. Her ears were small
and there was a Simeon crease in her hand.
What was the doctor trying to say?
If her head was small, did that mean her brain was small? Yes, it did.
A geneticist would come to visit.
The geneticist came and explained that this
baby had many of the features of Down syndrome.
How sure was she that the baby had Down syndrome? 99% sure was her answer which was confirmed
by a blood test.
The days and months that followed were a
blur of medical appointments. Rita had a
heart defect and needed open heart surgery. Her eyes were crossed. Could she hear? Was there liver damage from hypoxia during birth?
She needed early intervention to stimulate her development. It went on and on, but Rita paid it no mind
and continued to grow, to learn and carry on with her life.
Though she could not walk until 3 years of
age, she happily scooted about the house on her bottom, shredding every pair of
pants that she had over time. Her first
and only word at that time was "up."
It didn't really mean anything; she just said it randomly. Shortly thereafter, speech therapy began, and
Rita learned to speak in sign language at first, learning about 30 words in
sign to indicate her wants and needs. At
the age of 4, Rita began to attend the PREP program in Calgary, where more
speech therapy was initiated. One day,
Rita's mom came to sit in during speech.
Rita wanted to leave the room, but the therapist said she had to ask
properly with words. Rita, with a
combination of sounds and gestures indicated her desire "EEE oh aye" which was "Me go play." This was a turning point and she never looked
back.
Rita was the very first child in her
Calgary school with special needs. There
was some resistance to allowing her into the classroom. "What would the other parents
think?" asked the principal.
"How can we manage?"
Nevertheless, the family pushed forward, grateful for the support of the
PREP program who helped negotiate the process.
Rita's grade 1 teacher, Mrs. Simm was very
nervous. Despite her many decades of
teaching, she had never taught someone with a developmental disability. She thought she didn't know how. However, she was willing to give it a
shot. Very quickly Mrs. Simm made the
transition from fear to elation as Rita made steady progress. Mrs. Simm used creative means to stimulate
reading--using photos of Rita holding large pieces of bristol board of various
colours, to learn how to read her colours.
One day, Rita's mom was surprised to see Rita identifying the letters
and numbers on the license plate of the family car. Said Mrs Simm "Rita
works harder than any child in this class."
Rita continued in an inclusive setting at
school until grade 6. At that point, it
seemed that the best way forward would be to switch over to special
education. Rita was being left further
and further behind in the mainstream classroom and really was spending all her
time with her educational assistant and not with peers. So, Rita changed to a new school and settled
in well.
At this point in her life Rita was also
preparing for becoming a bat mitzvah, together with her mother. At first, she took bat mitzvah lessons to
learn to recite her portions in Hebrew, from a cantor. However, it quickly became apparent that she
was not the same as other students and he really could not accommodate to her
differences. Luckily, Sandy Corenblum, a
cousin, was experienced as a Hebrew teacher and very well versed in exceptional
students. Thus began the weekly visits
to Sandy's house where Rita would learn to site read words in Hebrew--sometimes
with games like having to fish the words written on slips of paper, out of a
basket with her toes and then to read them.
At the end of each lesson, Rita went to the refrigerator where Morah
Sandy provided a scoop of cream cheese.
It was Rita's privilege to feed the cream cheese to Sandy's dog named
"Schmatta." Schmatta was a
small white hound and well suited her name which means "rag" in
Yiddish.
The bat mitzvah itself was a momentous
occasion as once again it was a first to have a child with special needs become
a bat mitzvah on a Saturday morning in front of the whole congregation. It was more common for people to quietly
celebrate on a weekday if the child was atypical. Rita happily got up and said her piece,
including a speech--she always loved giving speeches. Many in the congregation were moved to tears
and everyone felt the importance and joy in the celebration.
After such joy, it was devastating, a
couple of months later to find out that Rita's dad, Jay, was suffering from a
rare form of bladder cancer. The next
year and half were filled with medical procedures and treatments, but there was
no cure. Jay quietly passed away in the
Agape Hospice in Calgary in 2002.
In 2003, Rita began a new life in Toronto
with her mom and sisters. Mom worked for
an uncle, and Rita began attending Drewry Secondary School, in a special education classroom. High school marked Rita's rebellious
phase--stealing the teacher's keys and hiding them in a locker, for
example. Trying to run away at recess
time was another adventure. She did
spend a few afternoons in detention.
However, she also had some great times in high school, becoming a member
of the sign language choir! To this day
she still breaks into sign language when she hears "It's a Wonderful
World."
Towards the end of high school, Rita began
a co-op placement with an organization called Common Ground. This was a parent-initiated program that
started as a bakeshop and grew to include some satellite coffee shops called
"Coffee Sheds." Students and
partners, as the permanent staff were called, worked in the kitchen or in
customer service. The program was supervised by job coaches and the workers and
students all had developmental disabilities.
Rita rotated through these areas and learned new skills.
At the age of 21, high school ended. For adults with developmental disabilities in
Ontario, funding for programming was and still is, quite sparse.
All programs required the participants arrive independently either by
public transit or private transportation--prohibitively expensive. Rita did not know how to take public transit
by herself. Luckily, her job coach at
Common Ground lived near Rita and was willing to help train Rita to take public
transit. Rita's sister Rachel, and Mom
also pitched in and over the next year, Rita gradually became more independent. She learned to use a cell phone, how to be
safe in public and how to deal with unexpected situations.
The first solo trips were a bit scary. One day Rita got on the wrong streetcar and
ended up at the fairgrounds, opposite to the end of town where she was
supposed to go. However, the streetcar
driver kept her calm and took her around the loop, heading back in the right
direction. She got home safely.
Another time, a bus did one of the infamous
Toronto transit "short turns"--where passengers must exit the bus
part way along the route and wait for another bus to continue the
journey. Unfortunately, Rita did not
realize that the short turn had placed her on a cross street, not the street
she was supposed to be on. She waited
and waited, but the right bus didn't come.
Finally, Mom drove down to the area and for a while was in a panic,
unable to locate Rita. Rita reported by
phone, that she was inside a store. The
proprietor finally took the phone and in broken English, revealed that Rita was
in a computer cafe, on the wrong street.
Crisis averted. The next time a
bus driver tried to short turn on that street, Rita explained that she's not
allowed to get off at Wilson Avenue because she gets lost there. The bus driver obligingly called his
supervisor, and the short turn was cancelled.
Rita continued on her way.
Rita loved to commute independently and
would rather take the bus than be driven to destinations. She even refused rides home if her mom
happened to be at a meeting nearby at dismissal time. She would wave as Mom drove by in the car.
In addition to her job serving coffee and
snacks at the Coffee Shed, Rita attended and continues to attend a day
program. Dani is the program, another
parent founded entity. Here she
participates in many activities: drama,
art, music, social programs, cooking, vocational programs and more.
Through Dani she has made many close friends and developed new
skills. Each year she excitedly participates
in a theatre production. Art night is
another highlight. There's a special
theme and a wonderful exhibit along with presentations such as a fashion show
and an art auction.
Rita has developed into a confident young
lady. She has a great sense of humour
and is a very empathetic friend. She
never misses a friend's birthday and in fact has created birthday cards for
everybody she knows. She enjoys watching
movies (often the same one over and over again). Singing is another pursuit of Rita's. YouTube provides the accompaniment and Rita
sings and dances in her chair. What she may lack in tonality, she compensates
for with her enthusiasm for each song.
She is a creature of habit and doesn't
always like things to change. For
instance, she must watch the news at 5 pm or else! She strongly objects to any scheduling
irregularities--preparation is needed to get her to accept a new routine.
Nevertheless, during the current covid
crisis, she has adapted and faithfully participates in each and every Zoom
session offered. She's also made some
new friends on Zoom and is never bored despite being at home for the past 6
months. She really misses riding public
transit and looks forward to the day when she can once again ride the bus all
by herself.
Looking into the far-off future is still a
bit murky. Housing opportunities for
people with disabilities in Ontario are few and far between. Determining the next phase is a daunting
challenge-one that is on the mind of all parents of adults with disabilities in
the province.
For the present, Rita's life at home
continues. She wakes up every day raring
to go, greeting her friends on Zoom and enthusiastically listing the things
that she is thankful for during the group sharing time.