Flashback 3 months to end of school year. We just returned from 8th Grade Continuation Ceremony. This evening marked the end of a wonderful 3 years in middle school for our daughter, Sophia. Not many students find those middle school years so pleasant. But for Sophia they were a capping on the end of years of struggle in elementary school and the beginning of a more “normal” life. You see, Sophia was born with a bilateral profound hearing loss; she is deaf. She “continued” on to high school tonight at an emotional ceremony where she was noted for her ability to masterfully command an audience, her warm personality and openness to others. Her middle school time included: being on honor roll every semester, being the goalie on Field Hockey team 2 years, being the lead star in circus as a trapeze and fabric artist, having speaking roles in 2 plays, being elected by teachers to the Leadership team, and most importantly in collecting a wide and nice array of good friends.
We left the event in tears that not enough was said about all the obstacles that Sophia has overcome. No mention of her deafness. No mention that she is the first hearing impaired student at this elite private school. No mention that she is the only handicapped member of this illustrious class. Isn’t it funny that we wanted recognition of all that, when in fact as parents we have been advocating from the moment she was born for exactly this moment: when she is thought of as no different, that her hearing loss is not her defining moment? She in fact “fits in.” Her needs have become small enough that people don’t think about it so much. Her peers just think of her as Sophia and they treat her with respect she deserves.
These are all great accomplishments when you think about the fact that 13 years ago a doctor told us that Sophia had a profound hearing loss; that she was born deaf. When asked if she would ever talk or speak, his reply was “Maybe …maybe not.” You see she was born at a time when cochlear implants were not available to children. We were told by doctors and therapists in California that slowly and with great work she might learn to talk, but we didn’t see others around us talking…only signing. We were told by deaf adults that we should not be “forcing” our baby to learn to hear and talk” with all the therapy we were doing; we had no right. We moved to Colorado to get a cochlear implant and to go to special schools and still there were roadblocks with 13 appeals to get insurance for her equipment and therapies, with specialists that didn’t want to implant her, with hundreds of hours of therapies, with slow progress despite great efforts. And, then we wanted her to go to our neighborhood school. We were told that she couldn’t make it there: that she would never be able to advocate for herself and that she needed too much help. Still we pressed on. We were told that we could be a “test case” in mainstreaming at the public school. She went and she finished, but she suffered great bullying throughout elementary school. And then we went looking for a middle school community that embraced Sophia for her differences. Consequently, her successes and happiness began to soar.
Continuation is an event to note for any parent. But we were struck tonight by how much more poignant it feels given the obstacles and challenges that Sophia has had to overcome to get to this place and how NOT ordinary all those efforts really were. File boxes of insurance appeals and IEP negotiations document my life as a parent. My job has become constant work at teaching teachers, nagging audiologists, and pushing our daughter to be her best and to ask for what she needs. To be fair we have a “normal kid” and typical friends and a regular life of too busy parenting. But we have all had a harder life because of the work and challenges.
And I guess that brings me back to where I began. When the school faculty failed to mention Sophia’s hearing loss, it bothered us so. Not only for the selfish reasons of wanting someone to know how far we’d all come. But really this is Sophia’s story and it is beautiful and it is a success and it should be “flaunted.” We don’t feel that Sophia will make her way despite her hearing loss. We believe that her role is to make her way BECAUSE of her hearing loss. This beautiful, poised, warm, funny, sweet, sensitive creature is not defined by being deaf, but neither can she separate herself from it.
Telling her story may lead to her success. And, she came out of this world the way she did maybe for some reason, but in any case she is beautiful in every way and we can’t imagine shying from accepting and flaunting her story.
She is going to change the world.