Archive for March 18, 2015
When a child is diagnosed with a hearing loss, the first thing that tends to happen is the quick referrals for more tests and intervention for the child. This is all good and well, we need to support and help the child as best we can. BUT, what about the parents, what about the family? Are they not at the heart of that child’s world?
The more I talk to, and read about families raising deaf children and the more I reflect on my own experience, the clearer it becomes: isolation.
Deafness, often referred to as the silent disability, is not only silent for the child, but in a sense, this initial diagnoses creates an isolation, a silent vacuum for the parents and families.
Where do you begin when you learn that your child can’t hear? You are sent from test to test, a long list of professionals, therapies and referrals. All focused on the child.
Yet, sitting in the seat, is a parent facing a diagnoses of their shattered dreams. Their hopes crushed. Staring at a child, who just this morning, looked as if they could hear the sweet “I love you” of the parent’s voice…
Sitting in the seat, a parent detaching from the world around them, a parent preparing for auto-pilot, shutting down their needs, ignoring their fears, doing what is expected in a haste of the child’s immediate needs…building up the invisible barrier. A parent, insulated by the isolation and detachment.
Sitting here, reflecting on the parents met, discussions had, and personal articles read. The hints of isolation need not be there!
All we need is for someone to acknowledge the immense power of a diagnoses different to our dreams and realities. We need the humanity behind the diagnoses. A different approach, a way to bridge the gap that often results in the complete isolation a parent feels when their child is diagnosed with hearing loss.
Who do we turn to, who will understand the thoughts, fears, countless questions and emotions rushing through our every being? Where do we find “others” like us?
We need a consistent sensitivity towards the parents before rushing off for more tests and referrals. Acknowledge that any diagnoses, different to what we know to be perfectly healthy, is enough for us to shut down and go into auto-pilot…
We need to move towards holistic medical practices, where we no longer just see to the physical, but where we also acknowledge the psychological and emotional impact a diagnoses have on the parents, and the family.
What if it became standard practice for ALL pediatric facilities to have direct referrals to trained counselors/parent support groups who can guide and support families when their child is diagnosed with a disability/illness?
Is it not true that the parent’s well being is crucial to successful intervention and management of any diagnoses that impacts on a child’s health, development and growth? No parent should navigate their journey in isolation…silence can be deafening to a mother’s soul and a father’s heart!
The Internet is wonderful, but it can also be misleading for parents who are new on the journey. We need to connect with real people, people who can relate, families who are living what we are hearing for the first time. Isolated in their silent need, let us parents, who have traveled this journey, reach out and break the barriers of silence…
During a break at a recent Hands & Voices staff and board meeting, I took a good look around the room. Some of the staff and board members were engaged in one-on-one conversations. Others were in groups.
Over the years, every single person on the board and staff came to Hands & Voices because of one thing: a passion for families with deaf and hard of hearing children.
Isn’t that so frou-frou? Passion? I mean, come on.
Dedication. Involvement. Contribution. Those are certainly words to describe people who serve at every level of Hands & Voices.
What’s the core of what we do at Hands & Voices? What are we about? Who are we about? What’s our mission? What are our values? What is the “why” of what we do?
To those who may not be deeply familiar for what we stand for and how we support families, there’s often the misconception that we’re all about choices for families. That it’s all about communication methods and modalities.
But it’s not that.
It’s all too easy to get hung up on trying to balance the dance of equality among the choices out there. When you do that, you never win. It’s never balanced. It can’t be. This whole journey with deaf and hard of hearing children can’t be summed up by communication alone. To do that is to compartmentalize the journey.
At Hands & Voices we are sometimes bombarded with finger-pointing by others who insist we must remain neutral, balanced, and equal on every level in our daily work.
Instead, our work goes deeper than that. It’s about the emotional ups and downs of being a parent and understanding this journey. It’s about reaching out so that no one has to journey alone. It’s about providing support during the rough times and celebrating the joys.
Call it frou-frou if you will. We call it passion. It’s the fuel that drives us to do this day in and day out–without always having the funding to do so.
Passion is what keeps us up at nights responding to a parent who is frantic about the next day’s IEP meeting.
Passion is what allows us to have the energy to drive three hours to host an event for parents and children.
Passion is what pushes us to share resources, knowledge, and encouragement so other parents can be empowered on their own journeys.
Mom to David, Lauren, & Steven
Co-Coordinator of Deaf and Hard of Hearing Infusion at Hands & Voices