By Kristen Stratton, California Hands & Voices
I have spent a lifetime trying to figure out where I fit in as a hard of hearing person in a hearing world. I grew up in a family with a strong history of hearing loss but without the richness of language or culture; that seemed reserved for only those who were truly deaf. I didn’t know “Deaf” as compared to “deaf”. I didn’t know about the world beyond mine that had a full and complete language which was as beautiful as it was intricate and complex. I didn’t know anything until I became the mother of a Deaf child.
By the time my third child came along, I felt seasoned in my parenting. I fed my kids organic foods, did Pinterest crafts, was a devoted stay-at-home parent, forgoing my plans to be a successful attorney. I threw all my energy and abilities into motherhood.
I knew our family carried a history of progressive sensorineural hearing loss. I was identified hard of hearing at the age of five, and became a hearing aid user at age 15. I knew to proactively have my children visit the audiologist.
Our third child’s labor was routine, until it wasn’t. My son was born struggling to breathe and had very low APGAR scores. Due to reasons unknown, reasons which I no longer stay up at night trying to figure out, our beautiful son was brain-injured. It took years of doctor visits and missed milestones and misdiagnoses to finally learn my son had cerebral palsy and he was developmentally delayed. Later, he developed seizures which made his already complicated language and learning even more of a struggle. During the diagnosis process, we also learned he had a severe bilateral progressive sensorineural hearing loss. Honestly, the hearing loss was the least of my concerns. I was just trying to keep my kid alive!
When he was not quite two, and at the same time we learned my son had this hearing loss, we sent off his lab work for further diagnostic study. Shortly after, we were told he had a fatal genetic disease. While attending hearing aid and ear mold fitting appointments with our toddler, we were also communicating with a program director at the National Institute of Health. We were grieving, broken, and preparing to fly to Bethesda, Maryland to enroll our son in an experimental study to extend his life. He might only make it to 3-5 years of age. We couldn’t plan on a long future full of language and dinner-time chats and college graduations.
Call it a miracle or a medical mistake, but repeat lab work done just a few weeks before our planned trip to Bethesda was suddenly clear and we were told he did NOT have a fatal disease. Phew. Okay, so now what?
Now we began to catch our breath enough to figure out how we were going to choose to support the language and educational needs of this child with an already severe and progressive hearing loss. I re-examined my own educational needs as a child and adult. I remembered being in class, where my only accommodation was sitting up front and working extra hard to ensure that I didn’t miss anything (which, of course I did).
I decided that my son’s needs were different and we were going to give him opportunities to succeed in all manners of communication. We chose to give him a community and an identity. We chose to learn American Sign Language.
It was intimidating. It still is. Even with my own hearing loss, I am still working on feeling worthy enough to use an interpreter. For my son, I don’t feel the need to justify any of his access needs. He deserves access to the world and that’s what we are trying to give him: a healthy marriage between being Deaf and having other special needs and being unapologetically himself.
In that journey, we have overcome many, many barriers to access within the medical, educational, and religious communities and also within our own families. What we have been able to do with those experiences is share a wealth of knowledge which was hard-fought and expensive, time consuming and overwhelming, and we have turned difficult experiences into something good.
I am now working as an ASTra Advocate on behalf of CA Hands & Voices, serving families who request educational advocacy support. I am also applying (finally) to law schools. That proclamation is now published, so I will have to follow through! The most miraculous transformation hasn’t been related to any one person, but rather the whole community of people who have the privilege to know our son. He is the embodiment of pure love. His smile, his warmth, playfulness, perseverance and fierce drive to be independent despite all that he has to deal with medically is a truly awesome gift to witness.
Some people use the term Deaf Plus to describe a child or individual who possesses Deafness as well as other diagnoses. While that is not a preferred term among some people in the Deaf and hard of hearing communities, I have chosen to use it for its metaphorical power. The “plus” represents all the many people we have added to our lives who enrich my son’s journey by so generously sharing their language, love, time and energy. The plus also represents what a blessing he is to our family and how much value he has added and forced us to grow as people. The term Deaf Plus in our home represents not what special needs have taken away from a would-have-been neurotypical child; it is a statement which reminds us all of how much we gained with our third sweet miracle baby. I couldn’t be more proud to be his mama.