Honoring Each Family:
A Message to Professionals
Our son, Jordan, was born in January 2002 at a birthing center in Idaho. The pregnancy, labor, and delivery were picture perfect. At one day old, we were contacted by the affiliate hospital for a newborn hearing screening.
I knew a little about newborn hearing screenings because I happen to be both a nationally-certified interpreter for the deaf, and an outreach coordinator for a relay provider. Because of my vocation, I work and live in and around the Deaf community. There is, however, no history of hearing loss in either my family or my husband's.
While Jordan didn't pass his first, or second, or third OAE screening at the hospital over a seven day period, the nurse who performed the screenings assured us Jordan's hearing was probably just fine-that this happens all the time. Her comments each time didn't engender much confidence in the system, the equipment, or the screener herself; and in hindsight, we could have easily become a statistic on one of those 'lost to follow up' reports. All this due to a lack of professionalism on the screener's part, and a lack of adherence to screening protocol.
Jordan was scheduled for a fourth OAE when fate led us to an Idaho Council for the Deaf and Hard of Hearing meeting where Ron and I were going to show off our new bundle. I happened to mention to someone how absurd it was Jordan wasn't passing his hearing screenings.and what a great story it would be someday. My comments were overheard by none other than our state's newborn hearing screening coordinator, who encouraged me to have Jordan tested immediately with a diagnostic ABR.
As you may have guessed.a few days later, Jordan was diagnosed with a moderately-severe bilateral loss. I was devastated-I sat there and sobbed, needing someone to hold my hand and tell me it wasn't true. The audiologist that day was new to screening infants and didn't know what to do with the crushed mom seated in front of her. She appeared very uncomfortable, and busied herself with paperwork scheduling Jordan to see an ENT. Jordan's diagnosis would have been much less painful had this audiologist been given the benefit of some counseling classes to augment her clinical skills.
And so began our life with Jordan. I still grieve for his hearing loss, because Jordan will have a tougher life than I had envisioned for him. I want Jordan to be an equal participant in life just like his older brother and sister-and we will have to fight to make that happen. Our extended families have also deeply grieved, especially my mom.
As much as I was heartbroken, and as odd as it may sound, there is a part of me that's pleased Jordan is deaf-that he is a part of the deaf community, which I dearly love. I must do active self-care to keep myself feeling less schizophrenic on this mental pendulum that swings between happiness and grief. That said, I am so glad Jordan's hearing loss was early-identified. We were able to bond with Jordan and love him in special ways from birth. We do not experience the guilt of looking back through his infancy and toddlerhood and seeing all of the lost opportunities to provide language access.
So - our next step after identification was to figure out how to do everything 'right.' I assumed I was an informed parent, so the decisions and follow-through should be rather clear cut-nothing could have been further from the truth. Even more perplexing was that some people surrounding me also believed that I had all the answers. Many people told Ron and me how lucky Jordan was with a mom like me. It surprised me how much I didn't want to hear this; and Jordan is equally lucky to have Ron as a father. Ron's love and dedication for our kids overflows.
I'm sure you have experienced flashes of insight in both your personal and professional lives. One such 'aha' came to me at a time of great need. When Jordan was about 8 months old, a friend of mine (who happens to be deaf) pulled me aside and simply asked, "How's Jordan?" Tears came as I answered, "We're not doing anything right. Jordan won't wear his hearing aids-they are out so much of the time that we forget to attempt to put them back in. He's too little to sign, and he won't look at me when I sign to him. I'm laying awake at night listing all of the lost opportunities to give Jordan access to language." My friend looked at me and said, "Don't forget Jordan is a whole child, not just a set of broken ears. Try to let go of making every moment a 'language moment.' Love all of him, even his ears." What inspired advice that was- from it I've found the less I stress about doing things 'right,' the better mom I am, which, incidentally, is conducive to the language development Jordan needs.
When Jordan was about 13 months old, we took him in for another sound booth test, this time with his hearing aids on. All of his previous tests had been largely unaided. We had always considered our son "deaf" since his unaided scores showed his hearing loss was about 75-80 decibels bilaterally, and he rarely kept his aids in-and we didn't have scores to see how much the hearing aids were helping anyway. We were astounded by his aided scores-he could hear much better than we'd ever imagined. Ron and I gave each other high fives and we went home. I later called my best friend to tell her the good news and, surprising to me, bitter tears filled my eyes. Why was I so upset Jordan could hear? The emotional pendulum swung again.
I think my reaction that day stems from the fact that I know many hard-of-hearing people who rarely had enough supports in their lives because it was perceived they could hear 'pretty well,' and who sadly never really fit in anywhere. A dear friend of mine refers to some hard-of-hearing children as "stealth children".they are often not on the radar screen and go through life as spectators, rather than as participants. With Jordan, we had just begun to come to grips with the fact he is deaf-now even that was being taken away and replaced with hard-of-hearing, which to me was somehow worse. Hard of hearing is not quite hearing, but not quite deaf. So who was my son? Would people misunderstand his needs even more so since he could "hear?" Would he struggle with self identity? Would my husband understand my struggle? My best friend encouraged me to tell Ron why this news was frightening to me, and I'm happy I did.
And so our choices became more complex-finding the 'right' answers was becoming even more daunting. The landscape seemingly transformed into a series of divergent paths: Signing or speaking? Cochlear implant or hearing aids? Residential school for the deaf or a mainstreamed program?
Key to my learnings from all of this and a primary message for each of you today is that there is no right path or wrong path when you're raising a child with a hearing loss-only blends of options that must fit and honor each family. I'm amazed at the stories from great families who support their children with a variety of communication methods and schooling options.
We have chosen to surround ourselves with professionals, parents and friends who offer us unbiased support. We've received immense support from Idaho's hearing screening consortium, our wonderful audiologist, speech therapist, Idaho Hands and Voices, early interventionist, Council for the deaf and HOH, and Idaho School for the Deaf. We were given a wireless FM system for our home from the Lion's Club. Our infant toddler program gave us visual alerting devices for our doorbell and telephone, and paid for sign language classes for our extended family. With all of this in place, we hope Jordan will grow to feel truly significant in our home and community, and will be confident in his ability to communicate.
I have learned that although my son has a hearing loss, he is not defined by his hearing loss. He is a child who is defining himself by what he can do in the world around him. He is whole. He is a joy.
I thank you all for what you do for families like mine. The moments when Ron and I have felt most uplifted and empowered as parents have been when we sought and received support from people like you-who are professionals in your fields, yet have carefully nurtured the ability to be sensitive and caring. People who put down their clipboards and hold us while we grieve. People who remember we are not only clients, we are moms and dads. How we have appreciated each of you as you, who support our families without bias, who honor each child's uniqueness, and who encourage parents to find the blend of options that best meet their child's and family's needs.