Parents across the country are trying to fill the empty days this summer for their kids, after many camps and programs were cancelled due to the pandemic. The scramble for playdates, day trips and other activities is a daily preoccupation, but for those with children who are among society’s most vulnerable, the need for daily structure is even more crucial.

“Our parents were at their breaking points,” says Yaffi Scheinberg, executive director of Kayla’s Children Centre (KCC) which operates a day camp in Thornhill, Ont., for children with special needs.

Kathy Laszlo, co-founder and director of Developing and Nurturing Independence (DANI), says it was a similar situation for the families of the adults in its programs, many of whom have been without access to support during the pandemic lockdown. “When there is no respite, there is no health worker coming to your house, there is no one taking out your kid. So you’ve had to do this 24/7 in the last 18 weeks, and it was a great toll on the families.”

KCC and DANI are the only special needs programs of their kind that have reopened in Ontario so far during the COVID-19 pandemic.

KCC runs a school and a variety of programs for children with disabilities and complex medical issues. The organizers were debating whether or not to open this year, due to the risks posed by COVID-19 and the complexity of making sure the campers would be safe. However, they really wanted to support parents of high-needs kids who were looking at a summer without the break the camp provides them with.

“We feel like we’re literally saving lives by having this camp open and giving these kids this opportunity, and giving their parents the chance to recuperate from the trauma that they went through in the last couple of months,” Scheinberg says.

The programs at Kayla’s Children Centre give campers and their families a break from the stresses of months of COVID-19 isolation, says executive director Yaffi Scheinberg. (Perlita Stroh/CBC)

Julie Higgins is one of those parents. Her six-year-old daughter Emily has attended the camp for three years. Emily suffers from Rett Syndrome, a neurological disorder that robs her of control over her body. She also experiences strong, painful muscle spasms.

After being isolated at home for four months with her daughter, Higgins admits the toll the situation was taking on the family was severe.

“It was awful,” says Higgins. “We were in crisis and desperate for anything, it was quite a few months of just survival and just day by day, hour by hour.”

When Higgins heard KCC camp was opening, she decided Emily needed the respite as much as the rest of her family.

“We knew they would take every precaution to make sure it was safe. And obviously you know you’re taking a bit of a risk, but we also took into consideration what it was doing to Emily not being around other people, and that was really hard on her.”

Julie Higgins, left, says that at the KCC camp her daughter Emily gets the structure and therapy she needs to thrive. (Perlita Stroh/CBC)

Also hard on Emily was the loss of skills she was experiencing due to the interruption in her therapies. At KCC she receives physiotherapy and occupational therapy, as well as taking part in recreational activities. All that structure is what Higgins says makes her thrive.

“Even though we tried to do as much as we could at home, it’s not the same. So, she’s getting all that now. She loves it. We can see her strength is back.”

KCC has more than 80 campers this summer and runs the full months of July and August.

Emily’s favourite activities at camp include music class and water play. Higgins, who drives her an hour each way to get to and from the camp each day, says her daughter’s overall mood has improved dramatically since she’s been there.

“She’s happy, so we’re happy.”

Julie Higgins says until the KCC camp was able to open, the stress of isolation during the pandemic was taking a toll on her daughter Emily and the rest of the family. ‘We were in crisis and desperate for anything.’ (Perlita Stroh/CBC)

Delicate decisions

Opening the camp during a pandemic was not easy. KCC consulted with public health officials as well as Toronto’s Hospital for Sick Children when considering how it could open.

The organizers are using a large building where they can space children out, and they’re keeping campers in cohorts of five that do not mix. They take everyone’s temperatures at the door, and ensure all counselors and staff wear masks.

They started planning for the possibility of opening in March and remained in constant touch with parents about their intentions.

Emily’s favourite activities at the KCC camp include music class and water play. (Perlita Stroh/CBC)

Scheinberg knew the decision parents were weighing about sending their kids was a delicate one. Many of the children have underlying health conditions that make them high-risk if they contract COVID-19. But on the first day of camp she knew her staff had made the right decision.

“Lots of our parents dropped off their kids that first week and sat in their cars and sobbed. They had a flood of emotion as everything they’d gone through over the past four months just hit them,” says Scheinberg.

“That was really emotional for us, as a staff, to witness.”

Recreational therapies for adults

Special needs children and their families aren’t the only ones who’ve suffered as a result of the isolation COVID-19 created. Adults with developmental and physical disabilities were also left without the structure of their day programs and specialized therapies.

DANI, also based in Thornhill, has provided these adults with recreational therapies, vocational training and a day program since 2006. When it closed in March due to the pandemic, many of its families were left without care.

Even though DANI did transition to online programming, not all of its clients could participate. That didn’t sit well with Kathy Laszlo, who co-founded the centre after her own special-needs son aged out of programs for children with disabilities.

“I personally feel that even if one person is left behind because they cannot be part of this online learning, it’s one too many,” says Laszlo.

“We always want to put the participants first. We knew it was going to be a major undertaking, but it’s their need and the families’ need.”

Kathy Laszlo says reopening the DANI camp and making sure everyone would be safe was a huge undertaking, but it was well worth the effort. (Perlita Stroh/CBC)

Laszlo was right, reopening DANI was a huge undertaking. The centre fundraised and spent upwards of $25,000 installing plexiglass barriers, investing in personal protective equipment (PPE) and sanitation stations, and hiring a consultant to help them meet government protocols.

Even then, it could only offer its participants two half-days per week to ensure proper social distancing. They are currently able to accommodate most of their 34 regular program participants, and plan to continue doing so as long as restrictions allow.

Laszlo says even this reduced program was worth the effort.

“The parents are overjoyed, they are so grateful. Anything we can do, even three hours twice a week, we see them when they drop off the participants and they can’t thank us enough.”

Gary and Rina Kogon’s daughter Tanya, 42, is one of those able to attend the DANI program. She suffers from cerebral palsy, a global development delay and a seizure disorder. The past four months at home were not easy for her, or her parents.

“She requires 24/7 care, someone nearby,” says Gary. “Unrelenting is a good word, because we don’t have that break … but like everything else with these special needs, you don’t have a choice, you just do it.”

Gary and Rina Kogon’s daughter Tanya requires 24/7 care. Gary says she was excited about the camp reopening, and ‘when she’s happy, we’re satisfied.’ (Perlita Stroh/CBC)

Rina adds that knowing her daughter is in good hands and receiving much-needed stimulation helped her make the decision to send Tanya back to DANI, even with the risk posed by COVID-19.

“When we saw how they were doing it, I felt relieved,” says Rina. “And, she was looking forward to it, she was so excited.”

“When she’s happy we’re satisfied,” adds Gary.

Tanya Kogon, left, walks with some of the staff at the DANI camp. (Perlita Stroh/CBC)

DANI hopes to ramp up its program to full time as remaining COVID-19 restrictions are loosened. The group is also looking for more space so they can bring back more participants, and applying for government grants to expand their online learning program for clients who can’t yet return physically.

Lazlo says her knowledge of what her own son needs drives her to keep going and helping others.

“People with disabilities need a good schedule,” she says. “Most of them don’t chit-chat on the phone, they don’t do Facebook and all those typical things a 20-something would do. They need a personal touch, to be together, to be heard, to talk or be listened to. Or even just to be there.”

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