MATTHEW and Joshua Bowring are passionate about music and will dance to just about anything - except when their mother, Denise, adds her voice to the mix.
"They don't like their mother singing," laughs the North Vancouver mother of three. "They do the sign, 'No!' I thought you were supposed to sound like an angel once you became a mother? It didn't work."
Denise's boys, students at Seymour Heights elementary, will have a lot of opportunity to get their groove on next weekend when the 47th annual Variety Show of Hearts Telethon airs Feb. 16-17. The broadcast supports Variety - The Children's Charity, which raises funds and distributes grants throughout the province to children with special needs and their families, as well as organizations serving them. The telethon will air on Global B.C. and will feature performances by internationally renowned entertainers, interspersed with stories of B.C. families with children with special needs, like the Bowrings, who are among those who've
been helped by the charity.
Denise and her husband Mike's first child, Julea, now 12, does not have any health issues. Following the birth of their twins, they realized something was awry when Matthew and Joshua weren't reaching certain expected milestones. Following extensive referrals and testing, the boys received their official diagnosis at age two. Matthew and Joshua have Fragile X syndrome, a genetic condition involving changes in part of the X chromosome, and autism. They're non-verbal, though communicate through sign language, hand drawings and the use of PECS (Picture Exchange Communication System), in conjunction with software program Boardmaker.
Now eight years old, they're at a toddler level in terms of their mental and physical abilities.
"When you visually see them with another eight year old there's a difference, clearly," says Denise.
The boys require constant care to manage their behaviour, which is becoming increasingly challenging to manage, due to their growing size. Maintaining their attention, and preventing them from flopping, screaming and resisting, are common challenges faced by the Bowrings, and their caregivers and therapists. Change is also difficult for them to accept, especially in terms of individuals they're working with, impossible to avoid due to illness, maternity leave, holiday time, staff turnover, etc.
That said, the boys lead happy, active lives and enjoy school, swimming, cartoons, drawing, crafts, painting, going for sleep overs, as well as time with their family.
"They're very busy," says Denise. Improving their communication is a major focus to prevent them from experiencing frustration. Activities are therefore focused on helping them express themselves and forge connections with others.
"They're very visual, computers are wonderful to them," says Denise.
Variety recently contributed to Matthew and Joshua's positive development by giving them an iPad and a laptop, important learning tools.
The iPad's portability is helpful in terms of the pictures the family uses to communicate.
"The boys' sign language is only so much right now and the pictures enable them to tell me what they want or to tell them what I want them to do so it's a big communication piece for us," says Denise.
Certain apps aid them in their fine motor skills development (finger swiping, and letter and number tracing), and with counting, reading and spelling.
"It's some of the same programs that the school has," she says.
The laptop, which Denise and Mike use to access Boardmaker, also provides a means of connection between family members, seeing them bond over certain shows and videos.
"It gives us a fun time to communicate," says Denise. "We talk about what's on the screen and 'What's Sportacus doing, or Dora doing? And where's Swiper?' Downtime, but together and still chit-chatting."
The Bowrings are incredibly grateful for their strong community of support, seeing members go above and beyond to help the boys. However, navigating the public, private and non-profit sectors to ensure the twins get the best treatment, day care and access to a variety of essential therapies (speech, occupational, behavioural, etc.) is a complicated web of service delivery and it's common for them to continually encounter roadblocks. While much of what the twins need is covered under provincial health and medical plans, some additional therapy that would prove beneficial, is not covered, leaving the family struggling with a mounting financial burden that is exacerbated as Denise has had to reduce her weekly work hours to manage their appointments and other needs.
"There's a lot of positive there too. Anybody who's on their team, they're there, they're doing what they can with the resources that they have," she says.
The support of organizations like Variety is much appreciated and is filling an important need for the Bowrings as well as families across the province, therefore Denise encourages community members to support the telethon.
"We need more help. The children need more help," she says.
Last year's telethon raised approximately $7 million for children with special needs and more than 1.5 million people tuned in.
The 47th annual Variety Show of Hearts Telethon will air on Global BC starting Saturday, Feb. 16 at 7 p.m. and continue through to Sunday, Feb. 17 at 6 p.m. Concerts airing over the course of the weekend include: a live performance by Chantal Kreviazuk; Adele: Live at the Royal Albert Hall; a Rihanna concert in Manchester; Paul McCartney: Chaos and Creation at Abbey Road; a VH1 Divas tribute to Whitney Houston; Justin Bieber in London; Michael Bublé at Madison Square Garden; and the winner of Variety's Got Talent.
To make a donation, phone 310-KIDS or visit variety.bc.ca.