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Understanding CHARGE Syndrome: Raising My Child Who Is Deaf-Blind

Editor’s Note: Last week, Amanda Bowdoin shared the story of the birth of her son, JD, who is deaf-blind with CHARGE Syndrome. Today in part two, Amanda shares the joy and fear of raising her child.

JD at age 11 sitting on a haybail

Understanding CHARGE Syndrome: Raising My Son, JD

JD spent most of his early years surrounded by nurses, therapists, and doctors. I decided when the twins were 3 years old to go into the program at Stephen F. Austin State University for Visual Impairment. At this time, JD was starting to wear glasses. Because he was born without ears (Microtia Atresia), he had to wear a head band to keep the glasses on. He also started to wear hearing aids. When JD was seven, he went through a four-part surgery over a year to get new ears and a new hearing aid. The proudest moment was him hearing my voice for the first time and smiling.

He now has visual impairment services at school and has a teacher for the deaf that works with him. Today, JD is in fifth grade along with Olivia who still mothers him. She signs to him and makes sure he is surrounded by friends. My husband and I keep him active and advocate for him.

As a mom, I always get asked, "How do you do it? I couldn’t do it." My response is always the same, "Yes, you can do it." My husband and I are closer now than ever, and we wouldn’t change it for anything. We have learned so much through our son’s environment about patience. We have learned that JD learns on his own time, and yes, he is stubborn, but he doesn’t give up.

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