Samantha Spiegelman, 24, has a rare genetic metabolic syndrome called glucose transporter 1 (Glut-1). “She has seizures daily,” said her mother Felicia Fox, which presents unique challenges during a virulent pandemic that leaves us all housebound.
Fox is isolating at home with her daughter and elderly mother, relying on one to two hours a day of homecare to help with activities of daily living.
“Prior to COVID-19, life was tough. My daughter can never be left alone,” Fox said. “Now it’s worse. Samantha has no programming to attend or participate in.”
Ellen Schwartz, founder of Project Give Back, pushes goodness forward by offering Spiegelman and others with special needs a musical respite. In memory of her beloved son, Jacob Schwartz, she has revitalized his weekly music program.
“Music was the language that Jakey spoke. He felt through music,” Schwartz said.
Singing, camaraderie and the single “I Rise Above” was the byproduct of the performers who came to sing to Jacob.
“For a while I couldn’t continue the music sessions. It was too painful. But I brought it back online – Jakey would be so proud.”
Schwartz’s heart knows no bounds. Leaning on empathy and the power of kindness, she has taken to social media and challenges students to send a love letter to somebody they adore or create a sign to leave in a window for people to see and smile.
In the wake of the pandemic, agencies across the city are intensely working to keep their clients connected.
Kayla’s Children Centre (KCC) is an organization that services children and teens who are medically fragile and those with complex medical needs, developmental disabilities and autism.
“A lot of the children that come to our school have an entire team to support them,” said Yaffi Scheinberg, executive director and the head of school at KCC.
Parents are working hand in hand with KCC therapists and educators via Telehealth sessions and online classwork.
Téa, a non-verbal nine-year-old, has Rett syndrome, which necessitates a wheelchair for mobility and constant medical care for life-threatening seizures. Téa requires specialized eye gaze technology to communicate and participate in cognitive activities, as well as the one-to-one support from specially trained professionals. Through KCC’s one-to-one in-home support program, Téa has been able to continue with therapeutic interventions and keep up with the curriculum being delivered online to the rest of her Grade 4 class.
“Risk assessment needs to be 360 degrees,” says Téa’s mother, Arianna. “When organizations like KCC were forced to physically close, no one knew what that looked like in the context of best practice. KCC mobilized an effective plan for my daughter and delivered the necessary resources and equipment to our door.”
Even a crisis has a silver lining.
“When I first got the email – how school was closing due to COVID-19 – I panicked,” Rachel said. “How will I give my son (Jay) with cerebral palsy all the therapies that he got in school? Will his progress go down the drain?”
READ: COVID-19 TERRIFIES PARENTS OF SERIOUSLY ILL CHILDREN
Parents are learning tools that they need to care for their children.
“Jay has been taking independent steps during the school year with his physiotherapist, but never felt confident in taking any steps at home,” Rachel said. “Once Zoom physio was the only option, he started taking those independent steps at home too which has been our goal for years.”
Yachad Toronto provides social and recreational programs for the Toronto Jewish special needs community, with participants aged 10 to nearly 60.
“What separates us from the others is that we do programming in the evening,” said Jennifer Turack, director of development Yachad, The Canadian Jewish Council for Disabilities.
Since the pandemic, Yachad is offering free classes via Zoom. Activities include bingo, Zumba, game night, cooking for Shabbat, devar Torah and a musical Havdalah program.
Thirty-year-old Shaindy has been a member of Yachad for about three years.
“Shaindy gets into her full Zumba gear and is so happy to interact and see friends,” said Yocheved Weinberger, Shaindy’s mother. “A whole new world opened up, as everything is online. I printed off the calendar for Yachad Los Angeles, New York and Israel; now Shaindy has about 25 programs a week she can access. A lot of these programs run during the day because of the time difference.”
Yachad encourages the community to participate. As Devorah Marmer, the director of programing at Yachad, said, “We have a link on Facebook and Instagram. You don’t have to be a member to join.”