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 which had a full and complete language and 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 become 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 despite the need for them, I did not become a hearing aid user at age 15. I did not receive any accommodations or supports in school beyond the cursory seat at the front of the class. When my own children were born, I admit I was fearful they would be “like me.” I vividly recall crying when my second child “failed” his hearing test at birth. He had a repeat test several weeks later and I remember telling my husband, “I don’t want this for him.”
When he passed that second test and I felt relieved. As far as I knew, having hearing loss was a deficit in every sense of the world: something that would hold him back and make life harder. I look back on that memory with all the knowledge I have now and have a lot of compassion for that young mom who didn’t know how amazing her kids could be and how beautiful her would was going to become.
Life carried on, we took all our children to routine audiology visits and up until the time I was pregnant with my third child, the only one who had any hearing differences, was me.
My 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 mis-diagnoses 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. He was DHH+++++++. Honestly, the hearing loss was the least of my concerns. I was just trying to keep my kid alive!
I would like to mention how trauma from that birth changed me. Many years of my life were spent putting the shattered pieces of myself, back together. While not all parents have a traumatic birth story, some of our experiences raising children with significant medical needs, creates its own brand of trauma. It becomes the lens, through which we view our world. Trauma is with us in our day to day lives. It permeates our relationships and our careers and irreparably changes us. The best thing I ever did, was go to therapy. I also poured my heart into helping other women have good births and worked as a consumer advocate for maternal healthcare. While I still struggle, therapy, the love of my children and husband, and advocacy saved me.
When my DHH Plus baby was not quite two, we sent off blood work to a lab 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 months later and just a few weeks before our planned trip to Bethesda was suddenly clear and we were told he did NOT have a fatal disease. More trauma…more life altering information. I had quit my job to be home with my son. My husband was sobbing in the ice cream aisle at Walmart. We were talking about end of life planning for our child. I am certainly not ungrateful that he was not dying; but that was a hell of a ride.
Phew. Okay, so now what?
Now we began to catch our breath long enough to figure out how we were going to choose to support the language and educational needs of this child. I re-examined my own childhood and the struggles I faced being stuck between two worlds: not hearing, but not signing.
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. We also invited a Deaf mentor into our home and whenever our son’s health would allow, we networked with the Deaf community.
It was intimidating. It still is. Even with my own hearing loss, I am still working on feeling worthy enough to use an Interpreter (which, for the record, has helped me immensely). 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 within our own families. What we have been able to do with those traumatic experiences is share our wealth of knowledge. It was hard-fought and expensive, time consuming and overwhelming. We have turned what might have broken us and turned it into something beautiful.
I am now working as a Special Education Advocate on behalf of specializing in serving DHH families. I am working my way through Juris Master’s degree and looking forward to qualifying for the California Bar after I complete an Apprenticeship. 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, warmth, playfulness, perseverance and fierce drive to be independent despite all that he must deal with, is a truly awesome.
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 members of 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 how much we gained with our third sweet miracle baby. I couldn’t be more proud to be his mama.
By Kristen Stratton, California H&V
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