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When My Son Told Me He Was Ashamed of His Disability

My 12-year-old son Colton has moderate-to-severe bilateral hearing loss and wears hearing aids. His hearing loss causes him to miss out on a lot of information, but he does not always realize it. After all, how do you know what you are not hearing when you cannot hear very well? Knowing American Sign Language (ASL) will give him access to another mode of communication with other individuals who might be deaf and hard of hearing. With the help of an ASL interpreter he is less likely to miss information in his middle school classes.  This will also help him if he attends college, where he will likely spend time in large lecture halls with poor acoustics. Thankfully, many public universities and also entertainment venues will provide ASL interpreters when they are needed. It is a more common practice than most people realize.

Lately, he has been struggling in his ASL class, and last night I could tell he was feeling down. When I asked him what was on his mind, he said, “I can’t help it, but I feel ashamed of my hearing loss and I don’t really want to learn ASL because I don’t want other people to think I am deaf.” I could see the tears forming in his eyes as he quietly asked me, “Do you think I will be successful in life? Do you worry about me and my future? What if I end up totally deaf?”

“Yes, I do,” I thought to myself as I worked to keep my own tears from flowing.

The truth is I do worry about his future, because even though his hearing is stable right now and his doctor is confident it will remain so, there is still a very small chance that the benign but destructive tumors (bilateral cholesteatomas) that destroyed much of his hearing could come back. Hearing aids help, but only to a certain degree. He has trouble in large rooms like gymnasiums, which have poor acoustics, crowded places like restaurants, and in environments with a lot of backgrounds noise. Complicating things further, his hearing has a tendency to fluctuate, and his lip-reading skills are not the greatest. Lip-reading is a talent not everyone naturally develops.

So, what do you say to your child when he tells you he is ashamed of his disability?

Like always, I tried to keep it positive. I said, “Colton, even if you were to become profoundly deaf, you would still be the kind, intelligent and caring young man that are right now. Being deaf or hard-of-hearing is not something of which you should be ashamed. Deaf and hard-of-hearing people can do everything…”

I stopped speaking mid-sentence as I looked into my son’s big brown eyes, because they were staring back at me with a look of worry and sadness. It was a look that said, Mom, I know you love me, but you are not hearing me. Mom, I am worried about what people think of me, because it is so hard to be 12 years old, hard-of-hearing and to just fit in and feel like I belong. Mom, I am worried about going deaf; in fact, I am so worried that I do not want to even consider the possibility of it. Learning ASL forces me to think about it and it scares me. Mom, I am afraid and I am worried about my future.

I said this: “Colton, I am sorry it’s so hard and I wish I could fix it all for you. First, I want you to know that most 12-year-olds feel different in one way or another, and it is normal to feel like you do not fit in at this age. I also want you to know that it’s OK to be afraid and to feel whatever it is you are feeling right now. Let’s just take one day at a time. Maybe it’s just not the right time for you to learn ASL, or maybe we can find a way of learning ASL that is more suited to your style of learning. Colton, I do not have all the answers right now, but I promise I will do all I can to help you feel comfortable in becoming whoever or whatever you decide to be or do in this life.”

As we hugged, I said to him, “I love you, and to me, you are already beyond successful.” He gave me a smile and then we moved on, like we always do.

We felt what we needed to feel, and then we moved on. I realized I can’t make my son be OK with his hearing loss, but I can support him while he finds his own way to acceptance.

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