Written by Roni Darragh
Veronica (Roni) Darragh is the Finance and Operations Coordinator for the Larner College of Medicine’s Office of Medical Communications. In honor of both Deaf History Month and National American Sign Language (ASL) Day, she is sharing her son Quinn’s story.
Today, on this last day of Deaf History Month, I want to share my family’s journey with you.
Why?
In sharing our personal experiences, stories, and cultures, we let others know they are not alone. There are people out there like them – to whom they can turn for advice and comfort. In sharing our personal experiences, stories, and cultures we create and strengthen our community.
I am neither deaf nor hard of hearing.
My journey into the deaf community has been led by my son, Quinn. It’s Quinn to whom this story truly belongs.
Quinn is six years old and is currently in kindergarten.
He is in KINDERGARTEN!
QUINN IS IN KINDERGARTEN!
Why do I seem overly excited about something that may seem ‘normal’ to other parents?
Most infants begin hearing in the womb, giving them a head start with receptive hearing (the ability to receive, process, and begin to understand spoken language) voice recognition, environmental sounds, and more. They develop vocally and start babbling around three months old and progressively add to the babble – creating mostly recognizable speech around 18 months old. Every child and situation are unique, but this has been the benchmark used for development comparisons.
That means that most children in kindergarten, who are between five and six years old, have been ‘hearing’ for 6+ years.
At six years old, Quinn’s ‘receptive hearing age’ is approximately three-and-a-half years old.
Our Journey Begins
Quinn was diagnosed with bilateral enlarged vestibular aqueducts (EVA) and bilateral mondini dysplasia when he was two and a half years old. This means that his cochlea (our beautiful inner ears that are shaped like nautilus seashells) are incomplete. Quinn is profoundly deaf with bilateral sensorineural hearing loss.
Some individuals with sensorineural hearing loss, like Quinn, may qualify to be cochlear implant recipients. If the individual receives cochlear implants (CIs), it may allow them to learn how to and develop a functional level of hearing (recognition of normal and everyday environmental sounds, ability to locate sounds, and access to speech) over a period of time.
The choice to get cochlear implants or for a parent or guardian to have their young child receive implants is that, it is a choice. We in turn, wanted to give that choice to Quinn to make, knowing for CIs to be impactful, that timing was also a crucial calculation.
In the beginning of our journey, CIs were out of the picture. It seemed daunting to put our beautiful child through complicated and lengthy surgery. Our early intervention team encouraged us to attend a weekend retreat at Burke Mountain, through The Care Project. The Care Project is a nonprofit organization that gathers professionals and families together to truly address the emotional side that comes with hearing loss, and provides insights for families, communities, and contacts. They provide information and resources that you don’t even realize you will need. At this retreat, we met several other children of varying ages (birth to 7 years) that were also CI recipients.
Watching these children communicate with their parents (utilizing American Sign Language (ASL), some spoken English, some signed English, and other modalities) gave my husband and I hope. Not that there wasn’t hope before, but hope is a funny thing that can mire into the muck after 50+ hour work weeks, commutes, basic day-to-day necessities, and then squeezing in appointments that are emotionally and physically taxing for all.
My husband and I made the choice for Quinn to receive implants when he was fully declared a candidate. The decision-making process was incredibly chaotic, mind numbing, heart-wrenching, and we spent many long nights and early mornings researching. Ultimately, we felt CIs were a tool – a tool that allows for choice – a tool that will give Quinn the opportunity to have access to sound and continue to access sound as he grows older if he chooses.
Quinn received his CIs and became what we call our “Bionic Baby” on November 24, 2017.
Education
Our journey lit a fire in my heart for education and advocacy.
First, to educate myself, my community, and others about the difference between vocal speech, communication, and language.
Vocal speech is not a language, it is a communication tool. American Sign Language (ASL) and English are languages.
In addition to vocal speech, we use writing, texting, emailing, messaging applications – we use so many tools to communicate in today’s world – communication is rarely only vocally speech-based.
For Quinn, CIs are yet another tool for communication that he can choose to use or not use.
Additionally, my husband and I have fully immersed ourselves and Quinn in learning ASL. We have beautiful mentors and advocates that teach us, grow with us, help us thrive, and (pre-pandemic) gave the best hugs when we needed them. They SEE our incredible child and how hard he is working and not simply his diagnosis.
Now, as Quinn learns and grows, we defer to him and the way he knows his own body. He chooses if he wants his ‘ears’ on or off.
Advocacy
A medical diagnosis can put you under some uncanny microscopes.
Successful outcomes require complete transparency, communication, organization, and the willingness to lay it all on the line on everyone’s part – the care team, the patient, the patient’s family. Successful outcomes and progress require advocacy. They also require meetings. Appointments. Funding, in particular, as services are not free.
We must advocate for ourselves and for Quinn daily – to medical professionals, school officials – even family. We must advocate for the right to make choices that we feel are right for our family and our child. We must advocate to our families and within our communities that they not only learn but embrace ASL.
Why?
I remember, after Quinn first received his CI’s, we attended a presentation by the University of Vermont ASL Club. During the presentation, deaf individuals shared their journeys and their stories. What I remember most clearly, is that each of them shared they had little-to-no connection with their families. Only one presenter’s family was inclusive of them.
My heart hurt when we left. The thought of my brilliant child growing up and not feeling included at a family function was devastating.
The Journey Continues
As of today, Quinn is thriving, both as a CI recipient who has access to sound, and as a deaf individual.
Through advocacy and hard work, we’ve been able to immerse him in an environment that is rich in language, emotional intelligence, and joy. Quinn now has mentors, peers, and teachers who surround him with supports I never could have envisioned.
Quinn enjoys challenges and problem solving and he works incredibly hard at both accessing sound and learning ASL. He grows every single day in so many ways and his fluency in ASL is leaving me in the dust!
He is deeply enamored with the moon and space, his math skills are incredible, and he has better handwriting than most folks I know. He loves kale, popcorn, strawberries, and Creemee Season is his favorite! He plays Mario Kart and always manages to beat me at Chutes & Ladders.
He is my little tornado of stardust and sunshine, and he has taught our family so much already.
Quinn has given us more than we could have ever imagined.
Read more about Quinn’s journey on Roni’s blog: Quinn’s Journey to Sound: A Bionic Boy Hearing the World
