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 walked through the maternity area on their way to see another patient. They 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 and wheeling the stretcher into the delivery room. An anesthetist quickly ran from another delivery room as an emergency was in progress and needed an immediate cesarean.
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 that her head is small and has an extra fold of skin at the inner corner of her eyes. Her ears are small, and there is a Simeon crease in her hand. What is the doctor trying to say? If her head is small, did that mean her brain is tiny? Yes, it did. A geneticist would come to visit.
The geneticist came and explained that this baby has many of the features of Down syndrome. How sure is she that the baby has 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, 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 after that, speech therapy began, and Rita learned to speak in sign language at first, learning about 30 words 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 her speech. Rita wanted to leave the room, but the therapist said she had to ask appropriately with words. With sounds and gestures, Rita indicated her desire “EEE oh aye,” which was “I 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, which 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. Mrs. Simm quickly transitioned from fear to joy as Rita made steady progress.
Mrs. Simm used creative means to stimulate reading. She used photos of Rita holding large pieces of bristol board of various colors to learn how to read her colors. 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. It seemed that the best way forward would be to switch over to special education. She was being left further and further behind in the mainstream classroom. She spent 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 to become a bat mitzvah 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 could not accommodate her differences. Luckily, Sandy Corenblum, a cousin, was experienced as a Hebrew teacher and well-versed in exceptional students.
Thus began the weekly visits to Sandy’s house, where Rita would learn to 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 read them. At the end of each lesson, Rita went to the refrigerator, where Morah Sandy provided a scoop of cream cheese. Rita’s privilege was 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. 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 lessons. Many in the congregation were moved to tears, and everyone felt the importance and joy in the celebration.
After such joy, a couple of months later, it was devastating to find out that Rita’s dad, Jay, was suffering from a rare form of bladder cancer. The following year and a 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 started attending Drewry Secondary School in a special education classroom. For example, high school marked Rita’s rebellious phase, stealing the teacher’s keys and hiding them in a locker.
Trying to run away at recess time was another adventure. Rita 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! 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 parent-initiated program started as a bakeshop and grew to include some satellite coffee shops called “Coffee Sheds.” Students and partners 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.
All Grown Up
At the age of 21, high school ended. For adults with developmental disabilities in Ontario, funding for programming was and still is relatively 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, be safe in public, and 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 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 partway 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 was not allowed to get off at Wilson Avenue because she got lost there. The bus driver obligingly called his supervisor and canceled the short turn. Rita continued on her way.
Rita loved to commute independently and would instead 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 participate in 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, Rita 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 particular theme and a fantastic exhibit and 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. Rita never misses a friend’s birthday and, in fact, has created birthday cards for everybody she knows. Rita enjoys watching movies (often the same one repeatedly).
Singing is another pursuit of Rita’s. YouTube provides the accompaniment, and Rita sings and dances in her chair. She compensates for what she may lack in tonality with her enthusiasm for each song.
Rita 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 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. Rita 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 she is thankful for during group sharing.