Growing up, even as a child of the 80s, I’ve have never been great with technology. I can post pictures on Facebook and record my favorite Housewife reality show on my DVR, but nothing much more advanced. When our family began our journey with two children with hearing loss, technology was an idea that terrified me. As I began my research after our children were diagnosed, I quickly felt that without getting an engineering or medical degree in my spare time, I would never understand the explanations I was given for the equipment being used to identify their hearing loss–nor the technology being suggested to help my babies hear better. Our son Harrison was identified at birth and our daughter Alexis was correctly diagnosed at four years old after a misdiagnosis at birth.
I thought my involvement with hearing aids stopped at picking out cute colors, not learning a second-language to understand words like hertz, tympanograms, sensorineural, and cookie-bite hearing loss (a configuration of hearing loss with less sound perception in the middle frequencies). I felt like I was drowning in a sea of alphabet soup with all the ABRs, OAEs, ENTs, FMs, IEPs and IFSPs. Dealing with all of this while adjusting to being a new mom of three children all under age four was too much for my sleep deprived non-technical mind. For the first few months, I put the dreaded “T” word out of my mind, vowing only to deal with it on an ‘as needed’ basis as they entered school.
As the years went on, and my kids got older, I noticed how my lack of knowledge for technology was limiting them, both in and out of the classroom. My children were having problems with their FM equipment in their schools, and I didn’t know what other options there were. My son was beginning to struggle hearing his soccer coach as the fields got bigger and instruction was coming from further away. My daughter began to shy away from popular adolescent activities such as talking on the phone and going to movies because she could not hear the words clearly. I watched how different my middle son Cole, who has typical hearing, was moving through life compared to my two kids with hearing loss.
Motivated by Necessity
I decided it was time to embrace my fear of technology and, along with my children, learn all I could. I began researching personal FM systems, personal closed captioning devices, closed captioning devices available in public areas, captioned telephones–anything I could find to help bridge the gap so my kids could participate as their peers did. Along with community organizations, school professionals and various websites, other parents of kids with hearing loss were the most helpful in sharing what worked and didn’t work for their kids and guiding me to available options. There has been lots of trial and error, and it’s still a dreaded task for me to research technology. Yet we’ve learned which movie theaters provide our preferred “rear view mirror” closed captioning devices rather than the “captioning glasses”. We’ve experienced which captioning devices are out of range in the balcony seats at our local playhouse. We’ve purchased personal FM Systems and devices to connect hearing aids wirelessly to TVs/music/computers for our children to use outside of school in various activities. We can’t wait for the weather in Las Vegas to cool down and we can wirelessly connect our stereo to the kids’ hearing aids at the drive-in theater so they can sit outside the car and still hear the movie! We’ve downloaded apps and received a telephone from a local deaf/hard of hearing services agency so they can have their phone conversations captioned. The kids have their own bed shaker alarm clocks to help with independence. While having access to all our technology definitely makes life easier, it does not solve all the issues my kids have faced. Simply knowing what options are available (and knowing our kids’ rights through IDEA and the ADA – Americans with Disabilities Act), my husband and I have had educated discussions with the schools and professionals and offer solutions to problems.
Finding A New Passion
To my surprise, all this technology I had been dreading for years wasn’t all that scary. The most surprising element in giving up my own fear was the fact that my daughter discovered her own passion for technology as it pertained to her personally having hearing loss. Beginning last year, our children began attending school at a STEAM Academy (Science, Technology, Engineering, Art, and Math). Our daughter especially began to embrace her hearing loss and used it as the basis for every technology based-presentation she could, including “The History of Hearing Devices” and “People Who Are Deaf/Hard of Hearing Can Do Anything”. She recently attended a Girl Scout summer camp focused on technology, and her final project was to code a computer game. While I can still barely turn on a computer without reading the directions, I was not only amazed she generated a “Choose Your Own Adventure” type game, but that she chose Heller Keller as the main character. She navigated her “Helen” avatar on journeys all over the world for other kids to learn about her experiences. Watching my daughter present this computer game she had coded by herself brought tears to my eyes. I remembered how terrified I was six years ago at not only the thought of how to raise children who had hearing loss, but also the responsibility of understanding the technology that tends to come along with our kids. In an instant, my personal journey with technology, while never-ending, had come full circle. Letting go of my own past fears was the true gift I can give to my children. And, thanks to my technology-creating daughter, I can now quote Helen Keller as saying; “Fear: the best way out is through.”
Editor’s note: Jones serves the NV Chapter as Guide by Your Side Coordinator.
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