Julia's story is about a family with a child who has severe hearing levels in addition to complex medical needs, and the family's approach to supports and services.
As we eagerly awaited the arrival of our second daughter, we had no reason to suspect she wouldn’t be another healthy baby like our first.
We were taken by complete surprise when she was born with a duplication on her 15th chromosome which affected her vision, motor skills and feeding. She had significant global delays and complex health issues, and then was also identified with severe bilateral sensorineural hearing loss at 17 months of age.
I remember feeling at the time that her hearing loss was just one more thing to add to what we were already dealing with and at least hearing loss was something I knew a little about. I had attended an elementary school as a child that housed a Hearing Resource Program so there was always at least one deaf child in my class along with an interpreter. It wasn’t until a while later that I realized the implication hearing loss would have on learning language and communicating, particularly because Julia also had reduced vision.
We found support and a sense of belonging when we met with the various Early Intervention programs. We were surrounded by people who could relate to our situation and emotions. However, we still weren’t sure exactly where our family was going to fit into this new world. We did settle on one agency for services, but over the past four years, we have continued to explore options and search for families like ours. As a result, we have become involved with many different organizations and groups of friends. Rather than finding that one group that would fit us perfectly, we found many groups, and get different types of support and information from each. I wish I had known in the beginning of this journey how many wonderful people we would meet along the way.
Julia currently attends our neighbourhood elementary school with her sister where she is loved by her peer group and well supported by dedicated professionals. At the moment this feels like the right fit for our family, but we will continue to re-evaluate as we go along.
I think our family does a terrific job balancing periods of upheaval and stress (usually related to the numerous appointments and hospital stays that come along with complicated medical needs) with times where we just enjoy our day-to-day life. We aim to stay positive, take advantage of fun activities and strive to live a great life with our amazing family and friends.