New Diagnosis? Clarke Can Help!

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November 8, 2011

Looking Back: A regular feature written by Martha deHahn

November 8, 2011—My son Patrick was born and raised in rural Western Massachusetts, but these days he’s a regular at the Museum of Modern Art, an expert on the best New York coffee shops, and even rides the subway like a pro. As a soon-to-be second year student at Pace University, he has enthusiastically made New York City his town. I won’t lie; I was a little nervous at the prospect of my first-born son living alone in the big city, but Patrick has never been afraid of new experiences. His enthusiasm for life is contagious.

Martha deHahn with son  Patrick

What a long path it has been. Shortly after Patrick was born, he was diagnosed with a profound hearing loss – which the doctors told us meant that without assistive technologies, he would not be able to hear even the loudest sounds. My husband and I both fall under the “typical” range for hearing, and we knew very little about deafness. Being a new parent and learning that your child has hearing loss can be overwhelming, sad, confusing, exhausting, lonely, depressing, and so much more.

We always knew that we wanted our children to have every opportunity to be happy in life. With Patrick’s diagnosis, we questioned everything: access, services, parenting skills, relationships with friends and family, communication. We were faced with choices and decisions we never expected to have to make. Some parents of deaf children have said that getting a diagnosis is like unintentionally starting a masters degree program, because you have so much to learn, so fast.

We were, however, extremely fortunate to have both a great audiologist and early interventionist. Both were experienced, supportive, and encouraged us to be proactive about our options. They also recognized the importance of getting to know other families like us and put us in contact with an active family support group.

I still believe that even now – in the so-called “information age,” where one can research educational options, hearing aids, or methodologies with the click of a button – there is still incredible value in being able to talk, in person, with people who understand.

We had researched different communication and educational options for Patrick when he was first diagnosed, but were not yet decided on our path. We learned sign language but we really hoped he could be able to talk. We wanted to learn more about how Patrick might benefit from assistive technologies and if he was a good match for the listening and spoken language method.

Our audiologist encouraged us to attend Clarke’s Family weekend – a weekend of workshops hosted by Clarke for parents of deaf children interested in listening and spoken language.

During the morning, my husband Chris took Patrick to play with the children on the playground while I attended workshops. He could not believe what they were doing. He could carry on a conversation with them! They were talking! He was amazed and at night shared with me what he had encountered. We began to think maybe this was an option for us.

It may sound silly, but I think the best part of Clarke’s Family Weekend was when, after we got our kids to sleep, the parents all gathered out in the hall and shared our stories – who we were, who our children were, what we had learned, what we feared. We attended workshops all day but the best part of our sharing was done in the hall of the dorm!

That one weekend helped us make lifelong connections with other families and gave us a real understanding of the communication path we were considering.

Patrick went on to enroll at Clarke, and made tremendous progress in listening and spoken language, eventually attending a mainstream high school and now college. Catherine, our second child, was also born with a profound hearing loss and, like Patrick, she has amazed us with her tenacity and joy for life. Raising two deaf children has had its share of challenges and rewards over the years, and I’m truly grateful for everyone who has been a part of our journey.

Now, 20 years later, I’m still talking to families of children with hearing loss. As Director of Program Information at Clarke, I now help coordinate our annual Family Weekend. In many ways I feel I have come full-circle as a parent of deaf children – and it’s amazing how time has flown. The thank you notes and kind words we receive after each Family Weekend show me how much families value meeting others like them – hearing parents who have children with hearing loss. It is through meeting these families – and seeing older children talk excitedly about school, or camp, or making new friends – that parents glimpse the bright future ahead of them.

And, believe me, it comes faster than you can imagine!

Martha A. deHahn is the Director of Program Information and Outreach at Clarke Schools for Hearing and Speech in Northampton, MA. She is the former Parent Outreach Specialist with the Universal Newborn Hearing Screening Program in Massachusetts. Martha and her husband Chris have two children, Patrick and Catherine, who both have a profound hearing loss and graduated from Clarke Schools for Hearing and Speech.