A break for parents of children with special needs
Exhausted caregivers say Tourism Toronto's respite plan is the answer to their prayers
November 22, 2008FAMILY ISSUES REPORTER
Pamela Dabene almost pinched herself as she gazed through the flickering candlelight into the eyes of her husband Dave. A classical guitarist serenaded diners from the corner of the chic French restaurant as the aroma of rosemary chicken with pomegranate reduction wafted up from Dabene's china dinner plate.
Earlier, the Dabenes had marvelled at the crystal facade of the Royal Ontario Museum and admired the view at dusk from the top of the CN Tower. Later they would head to their king suite at the Sutton Place Hotel in downtown Toronto.
For the Scarborough couple, both 36 and the parents of three sons, it was the first adult holiday in more than 16 years. Their 14-year-old, Kevin, has Down syndrome and autism. He is non-verbal and has behavioural problems, which means he can be hard to manage, especially since hitting puberty.
Both parents work full-time on the early shifts – Pamela as a hospital clerk, Dave as a postal worker. They have always been on call.
A weekend getaway has never been an option. Until this month, thanks to a new program offered by Tourism Toronto aimed at parents of special needs kids in Toronto, Mississauga and York Region.
The program, called Relax, Recharge & Renew, provides parents with an all-expenses paid weekend in the city tailored to their tastes. Equally important, it arranges respite care in a registered facility for their disabled child.
For the Dabenes, it was a rare one-on-one opportunity, knowing that Kevin was safe and well cared for while his brothers, ages 16 and 10, stayed with grandparents. The past few months have been especially worrying, as Kevin has nearly choked several times after eating bits of carpet underpadding and other dangerous objects. To manage his eating disorder, the house has to be kept spotless.
"It was so stress relieving," Pamela says of the weekend respite. "We reconnected with each other and strengthened our bond. This made us (remember) we are a team, we can do this together."
The idea arose when Tourism Toronto, an industry association of 1,200 members including hotels, restaurants and local attractions, decided this year that it wanted to launch an initiative to help the community by capitalizing on its many services.
"We were looking for a way to help kids and we realized that, sometimes, the best way to help them is to do something for their parents," says Andrew Weir, the association's vice-president of communications.
"This is one way we felt we could make a real difference for some specific families. We'd like to do more but, for now, we think we will be able to help about 100 families a year."
The program started quietly in August, with two families taking part each weekend. Parents can go alone or bring other siblings. It includes a limousine pickup and return home, two nights in a hotel, meals, TTC passes and free admission to Toronto attractions tailored to the family's taste and interests, ranging from theatre tickets to professional sports events.
Lorna Powers, supervisor at respiteservices.com, was thrilled when Weir first called to see whether the network, which links families to residential care, camps and personal care workers, wanted to get on board with Toronto Tourism.
"I thought, `Are you kidding me?' No one has ever come forward with this kind of idea," she says. "This is just what families could use, as they are under such tremendous stress when caring for an individual with a disability."
Many are living on one income because someone needs to be home full-time to care for the child, so they can't afford a holiday, never mind find the time to plan one.
Agencies such as Safehaven, Bloorview Children's Rehab and Community Living Toronto quickly agreed to take part and started to identify parents in their communities who were most in need.
Like the Dabenes, Sylvia and Sam Hibbs of Etobicoke have never pampered themselves. They have two sons, David, 19, and 17-year-old son Brandon, who has cerebral palsy and is in a wheelchair. He plays wheelchair hockey, attends Central Etobicoke High School and loves videogames but can't be left alone and needs help eating, bathing and dressing.
Brandon has been to Easter Seals camp for 10-day stints and has had a few weekends in respite care at Safehaven. But when that happens, Sylvia says she and Sam collapse at home watching the odd movie and catching up on sleep and chores.
Last weekend was shaping up to be a lot different, though, as the couple was off to a Friday night dinner at Joe Badali's Ristorante, followed by a day at the Hockey Hall of Fame, the ROM and Casa Loma, and an evening of flamenco dancing.
The parents weren't the only ones excited. Brandon was heading to Safehaven at the same time as several friends. "He calls it his respite weekend from us," says his mother.
Mike O'Connor, vice-president of Badali's, says the busy restaurant was one of many companies eager to donate gift certificates and passes and reserve spots for families like the Hibbses. Tourism Toronto has made it easy for the service industry to participate, he adds, thanks to meticulous planning and organizing.
For Michael De Andrade and Luciene Sestrem, a weekend respite in October was a chance to dote on their other children while daughter Monika was in care at Bloorview. They went to the Ontario Science Centre and to Canada's Wonderland, where they discovered 7-year-old Louise's passion for bone-chilling rides. The kids played in the hotel pool at the Courtyard Marriott while their parents looked on from the Jacuzzi. They ate at the Pickle Barrel and Montana's Restaurant.
"The weekend will never be forgotten," De Andrade and Sestrem wrote in a thank-you note.
Powers says the program is recognition from the community that parents are doing valuable work and are appreciated. Her network is urging other communities to start similar initiatives elsewhere.
De Andrade and Sestrem reiterated the importance of that acknowledgement.
"It is really nice to know that others understand our daily challenges and realize we need a break once in awhile to recharge and refocus."
For information about Relax, Recharge & Renew, parents should contact the agency that provides their child's respite care.