The sights and sounds of the holiday season are a vivid memory, relived year after year. Neighbourhoods aglow with twinkling lights, trees adorned with beautiful decorations, warm laughter of loved ones, and the unmistakable murmur of countless shoppers echoing through the mall.
Things will be different this year, for everyone.
For the first time in her life, Megan, a woman with deafblindness, will not be spending Christmas at home with her family. “We will drop off her presents and stocking to her home, one of DeafBlind Ontario Services’ residential locations, as well as FaceTime with Megan and her intervenor on Christmas day,” says Kathy Momtahan, Megan’s mom.
Deafblindness is a combined loss of hearing and vision that impacts access to information, communication, and mobility. At just 8 months old, Megan’s family learned that she is deafblind and has Zellweger Spectrum Disorder, a degenerative neurological disorder.
“Learning how to parent a child with deafblindness was a big challenge… It was difficult finding specialists who knew about her disorder. We had to do our own research and take her out of the country for answers and what treatment was available,” says Kathy.
People with deafblindness often face additional medical challenges, making them an especially vulnerable group. The people supported by DeafBlind Ontario Services, like Megan, have been in lockdown since March, keeping them safe during the pandemic.
We all know what it’s like to be in isolation. Now, imagine how this affects someone with deafblindness.
Intervenors are professionally trained to act as the “eyes” and “ears” of the individual with deafblindness through the sense of touch. “Intervenor Services means that Megan has specialized support that knows her communication methods and preferences, her health and safety needs, all the while planning for a fun and rich adult life,” says Kathy.
With a disability that is already isolating, the need for specialized Intervenor Services is vital now more than ever. This holiday season, DeafBlind Ontario Services’ intervenors across the province will bring a sense of comfort and normalcy during a difficult time.
“As a child, Megan enjoyed being with her family during the holidays. With some hearing in her left ear and a cochlear implant on her right, Megan enjoyed listening to Christmas carols and all the hustle and bustle of activity, not to mention getting extra servings of chocolate pudding around Christmastime,” says Kathy.
For Kathy, her husband, and other daughter, it will be a quiet Christmas. “We haven’t decided yet on whether or not we will have a tree. We’ll open presents on Christmas morning as usual, but without Megan here. There will be Zoom calls with family living in other parts of Canada, the U.S., and the U.K. too,” says Kathy.
This year, Megan will experience fun, sensory activities to help her anticipate that Christmas and the New Year are coming. She will listen to Christmas carols as she did as a child and dance around the Christmas tree with the support of her intervenors. And, she will FaceTime with her family too.
“DeafBlind Ontario Services has given Megan the best adult life we could envision for her, with trained and caring intervenors supporting her. She has matured a great deal in the last few years and has adapted to living away from home much better than we expected,” says Kathy.
DeafBlind Ontario Services provides accessible residential and customized support services across the province, including in Ottawa, Embrun, and Vars. Their holistic approach to Intervenor Services empowers people with deafblindness to achieve their goals and dreams.
To help support individuals like Megan and make a difference this holiday season, visit www.deafblindontario.com/donate