The Oakville Beaver, W ednesday M arch 1, 2006 -.3 Maybe your kids aren't ignoring you P a r e n ts o f tw o h e a r in g im p a ir e d k id s u r g e p a r e n t s to h a v e t h e ir te s te d c h ild r e n By Howard Mozel OAKVILLE BEAVER STAFF Raising a deaf and a hearing impaired child is not the hopeless tragedy outsiders might think, say Frank and Mary Kay McCoy-Sturm, but a labour of love which has evolved into an experience that has brought them even closer as a family. In fact, the couple is now looking forward to Katrina, 6, and Erick, 4, pursuing their dreams like any other child with much of the credit going to VOICE for Deaf and Hearing Impaired Children, a grassroots, par ent-driven volunteer organization. "I don't know what we would have done without them, especially during that first year," said Mary Kay. Added Frank: `VOICE helps emo tionally and socially. They can relate to our struggles." The first few months after a child has been diagnosed as deaf or having a hearing impairment can be confus ing and frightening for parents, who may be overwhelmed by conflicting information as they make vital deci sions that affect their child' s educa tion and future. VOICE helps families connect with each other throughout its net work of chapters, plus regular chap ter meetings, one-on-one assistance, education, auditory verbal 'therapy, newsletters, an annual conference and even a summer camp. More than simply extolling the virtues of VOICE'S H alton/H am ilton/N iagara/Peel Chapter as a way of thanking its members, Mary Kay was adamant this story also provide awareness to other parents about the necessity of getting their children's hearing tested early. "I think there's so many kids out there undiagnosed," said Mary Kay, who in retrospect harbours some guilt over not recognizing the signs of her own children' s impairment, especially Katrina' s. Prior to Katrina' s diagnosis, Mary Kay remembers times she called out to her bike-riding daughter to stop, only to have the youngster ignore her mother and be punished for not lis tening. Erick was tested at 23 months of age and found to have what' s called a bilateral profound hearing loss, or very little residual hearing. The audiologist then suggested it might be a good idea to test his siblings. Katrina, four at the time, was found to have a bilateral moderate hearing loss that allows her to hear the world in only whispers. Frank explained that the exact SABRINA BYRNES / OAKVILLE BEAVER HAPPY FAMILY: four- year-old Erick. Mary Kay McCoy-Sturm and her husband Frank with their two children, six-year-old Katrina and cause is difficult to determine, given the maze-like physiology of the inner ear, but it does involve the number, positioning and/or development of the delicate hairs there plus the fluid levels within. "Erick is severely limited in one of these factors," said Frank who, along with his wife, admit they were igno rant about the issues associated with hearing loss. \ . When first told about their chil dren's impairment, both parents first feared the stereotype that Katrina and Erick would "lose out on everything" in life. After all, they say, the first thing most people tell the couple after being told is "I'm sorry." That' s why Mary Kay is so insis tent that parents - many of whom are in denial - have their children exam ined. "The last thing people check is hearing," said Mary Kay, who has heard too many stories about chil dren being diagnosed well into their school-age years. "I would have never thought - to have their hearing checked." Sometimes kids are even pre scribed behaviour-modifying drugs rather than the truth being deter mined. "Screening is available and a hear ing test takes only 30 minutes," said Mary Kay. Timing is important, not only for the child's personal development, but also Tor financial considerations. Erick was diagnosed a mere month before the 24-month cut-off for cov erage under the Early Infant Program. Age four at the time of her diagnosis, Katrina's expenses were not covered. "Some parents are in denial and wait then are not covered," said Mary Kay. "For Katrina, we paid for every thing, but you do what you need to for your kids." The same day, Erick was diag nosed, the audiologist turned the couple on to VOICE. Mary Kay called and. spoke to several mothers and thus began their journey of under standing and hope. For example, the couple had to decide what route their children' s care would take, such as would they learn sign language or receive hearing aids and/or implants. (She knows of children as young as nine months fitted with implants.) "We wanted Erick to have the fullest life possible so we decided to teach him to listen and to speak," said Mary Kay, explaining that coping mechanisms like lip-readirtg had to be undone. Both parents then attended a VOICE social and ended up staying until 1 a.m. speaking to other mem ber parents.. "You realize that you're not alone and no matter what you've gone through, someone there has experi enced it," said Mary Kay. "VOICE is such a support for us. They just keep you going when you're discouraged." Organization gives hearing impaired a VOICE - VOICE - which celebrated its 40th anniversary last and speak. VOICE* also develops and implements pro year - was established by parents to offer support to other grams and services that encompass four main areas: par ent support, public education, auditory/verbal therapy families with children who are deaf and hard of hearing. These Toronto parents wanted their hearing impaired programs plus advocacy. VOICE'S Halton/Hamilton/Niagara/Peel Chapter children to be educated alongside their hearing peers in regular schools and by working collectively they reaped holds two fundraisers, a year - a golf tournament in the benefits of sharing information and providing sup · September and the annual Valentine's Day Dance in February. The latter event - held recently at the port to one another. Today, families continue to connect through the Burlington Convention Centre - raised both awareness VOICE network. In fact, the registered charity has and more than $23,000. The money goes directly to the chapter for everything thrived over the years and has developed into one of the largest parent support organizations for families of chil from educational toys to audio verbal therapy. In short, dren with hearing loss. VOICE maintains approximately the cash keeps VOICE going which in turn keeps families 1,000 members in 17 chapters within Ontario, Alberta, going. One new initiative is the VOICE Yahoo! Group, a listManitoba and Quebec. The group's mission is to ensure that all* hearing ,serv that allows busy parents from all chapters who can't impaired children have the right to develop their ability always make monthly meetings to post messages and to listen and speak and have access to services which will questions for other members. To sign up, simply visit www.voicefordeafkids.com, enable them to do so. To that end, the organization's principal objectives click on "Meet VOICE Members" and follow the prompts. For more information on VOICE, contact chapter are to provide hope and support to parents, as well as to promote the fact that deaf children can learn to listen chair Bill Quesnal at 905-633-9949. At a VOICE summer camp, Mary Kay and Frank met children fitted with implants and others carrying on with life without a care. "With VOICE we can see where our children will be," said Mary Kay. While Katrina was ultimately fit ted with hearing aids to amplify sounds around her, Erick received a Cochlear implant - an electronic device that restores partial hearing that is surgically implanted in the inner ear and activated by a device worn outside the ear. Unlike a hearing aid, it does not make sound louder or clearer. Instead, the device bypasses damaged parts of the auditory system and directly stimulates the nerve of hear ing, allowing individuals who are pro foundly hearing-impaired to receive sound. Needless to say, it took Erick' s brain a while to catch up with the hearing world. At present, he wears an ear-piece, which is attached to both a "bodyworn" processor on his waist (pow ered by a new AA battery every day) and a contact affixed to the magnetic implant in his head above his left ear. Some time in the future he will be fit ted with a more sophisticated behindthe-ear version. Frank is not sure when Erick' s speech will reach his appropriate age, but in the meantime he remains pleased with his outgoing and ener getic son's progress. "People say 'He's talking. I thought you said he was deaf?"' said Mary Kay, who explained that with VOICE'S help, she and Frank are con tinually educating others in addition to themselves. Both children's equipment can also include an FM. transmitter ver sion through which their parents (and teachers in school) can speak in normal- tones to communicate with them. No need for shouting across a park, said Frank, who explained that personal security is a spin-off benefit since the couple, and their children can always stay in touch. "There are lots of pluses," he adds. All this'technology has provided some welcome humour, though, like the time Erick called out for his par ents who found him lightly attached by his skull magnet to a metal pole. Erick and Katrina's hearing impairment has also caused Mary Kay and Frank to re-evaluate their priori ties and strike a better balance between work and their children. A closer relationship has been the result. "You can't put a price on that," said Frank. Although many challenges remain and the couple understands that realizing their children's full potential will be a long haul, the glass remains half-full. "The trade-off is we've spent more time together as a family. It's been very rewarding," said Frank, opti mistic that Katrina and Erick will have a fulfilling life. "They'll be fine." Visit www.voicefordeafkids.com.