Every now and then someone distraught over their child being newly diagnosed as deaf is brought to my attention. Many times, parents will admit to wondering how they will explain to their child in the future that he/she is different and cannot hear. For many hearing individuals, deafness is considered “abnormal.” My own analysis of such circumstances prompts me to share my story.
I lost my hearing suddenly due to spinal meningitis at the age of four. My mother was understandably heartbroken and terrified all at once. This was in the late 1960s-early1970s before Hands & Voices Guide By Your Side programs, cochlear implants, and access to services in public school systems. At the time, we lived a good hour and a half away from the state school for the deaf and my parents were not willing to board me there, so they became pioneers of sorts, going out of their way to MAKE resources available in order to help me. People were forever telling my parents how sorry they were that their daughter was no longer “normal.” They would always show me pity upon being told I was deaf.
Let me share my perspective as a child. Even though I had normal hearing up to that episode of spinal meningitis, and even though I still, to this day, remember my hospital experience vividly, not once did I struggle with “Oh, I’m Deaf! I’m different than you!” That thought never, ever entered my mind. I believe part of the reason is that through all the “I’m so sorry” comments, my parents made sure that I was treated as normally as possible with just a little tweaking (i.e., they’d ask people to just talk to me normally making sure I was watching them before they spoke).
At home, I was included in everything. My family loved to listen to music after dinner every evening. My dad made a special floor speaker I would lay next to with my hand resting on it to feel the vibrations. I would be able to look at my mother who was mouthing the words to the songs and read her lips. This was my family’s way of including me in their world and I appreciated it. My brothers clued me in on the finer things of life, such as which words NOT to say in front of adults! Who knew? I had it made. I was NOT treated differently, and I did NOT have an opinion about my hearing loss. It was a non-issue with me.
Now my mother, on the other hand, was beside herself. She’d present as very strong when in my presence, but she had episodes of breaking down in tears, sometimes extreme, when I was not aware of it. If anything…this just goes to reiterate that the parents often take things harder than the child does. I had opportunity to understand exactly what my mother went through when my second child was born with a severe club foot and required surgery. His foot has never been normal but my husband and I were determined he would not be treated differently and we encouraged his involvement in athletics, pleasantly surprised to discover he excelled there. As he grew, I would cringe at what I thought must bother him, but he would take it all in stride, probably wondering what was wrong with his mother! I recently spoke with my mom about this and she mentioned she had two other children in the family who didn’t deserve to have their lives turned upside down, thus her reason for keeping things flowing as normally as possible. Thinking about it now, I have done the same in my own family; having four children and refusing to let the physical issue of one child disrupt the flow with the entire family. Instead, we have made accommodations to be sure everyone could participate and feel equal.
By my high school years, I started to wish I could hear like my friends, only because I wanted to talk on the phone with them, go to movies and concerts and actually understand what was going on as it happened, and be in on the latest gossip going around town. Still, I didn’t dwell on my hearing loss, but I did have my private envy moments. When I think about it now, however, it’s not much different than envying the most popular girl in high school, or the most beautiful, or the smartest student in class. Basically, that’s the kind of envy issue I had.
It is okay for parents to feel upset upon discovering their child is deaf, as my mother was, but know that how you raise your deaf or hard of hearing child (positively or negatively) influences their own perspective of their limitations (if they think they have limitations at all). My mom always reminded me of the stuff I could do that my friends could not when I’d make comments such as, “Oh, I wish I could talk on the phone!” She would respond, “Oh, I’m sure you do, but I’m sure your friends sometimes wish they could shut their ears off like you can!” She never had to sit down and explain hearing loss to me. It’s not like when we parents sit down to have “the talk” with our teenagers. Deaf and hard of hearing children go to audiologists, get hearing aids or cochlear implants (or just have checkups), and learn sign language or lip reading skills. It isn’t like we don’t realize we have a hearing loss, especially those of us who were able to hear once before. Nobody needs to tell us…we live it and for the most part, many of us are absolutely fine with it and have no idea what is wrong with our parents. I believe my mother finally stopped worrying about how much I couldn’t hear when she realized that the doctor’s orders to keep me talking was backfiring and she could no longer shut me up!
Your children will survive and succeed on YOUR love for them. Encourage them to defy the odds; there is nothing they cannot attempt to do (within reason, of course! I do not condone jumping off rooftops now!). We have Deaf doctors, lawyers, actors and actresses, pharmacists, denture makers, dentists, so on and so forth. Allow life to go on as usual, keep your expectations high, and you will glance one day at your now-adult child and reflect back on today, wondering why you were so worried. Even though my mom may still have “moments” over 40 years later, she laughs at herself often these days, and I know each hearing parent with a deaf child can get in that same boat with her eventually. Parents like mine have a special place in my heart, mostly because they show their love for their children displayed through a spectrum of a million other emotions. THAT love is what will make parents and their children successful, and THAT is what one needs to hold on to. Everything else, then, falls into place.