Now What? Making it Through the First Year

Adapted from Krystyann Krywko, Ed.D.

Five years ago, I found myself standing in the same shoes that you are in today – after I found out that our son is Hard of Hearing. At the time, both my husband and I had typical hearing (I now wear hearing aids). Neither of us had any knowledge of raising a child who is Hard of Hearing, or contact with other families.

The first year after my son’s diagnosis went by in a blur. We had so much to learn. We also had to deal with our emotions as we made decisions about treatment and communication approaches. There was a sense of urgency because our son was three years old when he was diagnosed, which meant he had already missed so much exposure to language.

It was a year of trial and error. We met with specialists and therapists. We watched while our son was tested and observed. We learned new terminology and the jargon of raising a child who is Deaf/Hard of Hearing (DHH). We learned how to troubleshoot hearing aids at 7:00 a.m. We became experts at keeping hearing aids in the ear of an active three-year-old. We answered our first questions from curious parents and children on the playground who wanted to know what our son had in his ears. We continued to fill our son’s world with sound, language, and music.

I look at my son now and think about all those fears I had that never came true. My son has friends, loves sports, enjoys reading, and he is comfortable in his own skin. I think about all the lessons I have learned along the way and would like to share some of them with you as you start out on your own journey.

DO connect with other parents whose children are DHH. Alberta Hands & Voices can offer suggestions on how to meet other families in your area. If you live in an isolated part of the province, you can always join groups on Twitter, Facebook, and LinkedIn that offer virtual networks of families who are raising children who are DHH.

DON’T change your parenting style. Try to keep things as normal as possible. Most of the changes in parenting will be centered on the additional responsibilities of having a child who is DHH, such as maintaining hearing equipment, scheduling appointments, advocating for your child’s needs, and attending Individual Program Plan (IPP) meetings.

What won’t change is the support your child will need. She needs to know that your relationship and her place in the family will remain the same. Give her extra hugs when she needs them, but don’t fall into the trap of over-compensating by treating her differently. She should have just as many responsibilities and expectations as your other children.

DO keep an open mind when you receive information from professionals and other parents. When we were first told that my son should go to a special school for children who are DHH, we were resistant. We wanted him to attend our community school. But when we visited the school for children who are DHH, we were amazed at how it was set up. Now we couldn’t imagine sending him anywhere else.

DON’T search the Internet obsessively. While it is important to gather additional information about your child’s diagnosis, be careful not to go overboard. Whether you are reading about a new research finding or advice on a parent’s blog, it is important to recognize that your child’s DHH diagnosis is unique. Some unique variables include: her age when you discovered that she is Deaf or Hard of Hearing; the amount and nature of residual hearing; and her personality – whether she is engaged, curious, and active, or more shy and withdrawn.

Ask your audiologist for some reliable websites to start with.  Alberta Hands & Voices will also point you in the right direction.

DO teach your child to self-advocate. This can start as soon as your child receives hearing aids/cochlear implants or starts to work with an educational interpreter in the classroom. Let her know it is important to tell a grown up if something is wrong with her hearing equipment. Practice at home by taking a battery out of one of her hearing aids before she puts it on. Give her a couple of minutes to see if she notices anything different. If not, say “Surprise! I took your
battery out. Do you notice anything different about your right ear?”

Let her know that it is okay to ask someone to repeat if she doesn’t understand. There will be times when the speaker is either talking too quietly or background noises are too overwhelming. Provide her with language she can use, such as saying, “Excuse me, can you please tell me that again,” so that she can begin to feel comfortable asking others to repeat. If your child communicates in sign language, she will need to learn how to communicate with others who have typical hearing and no knowledge of sign.

These are just some of the lessons I have learned over the years of raising my son. If you are looking for more information please visit my website –
www.kidswithhearingloss.org.

I am an award-winning education writer and researcher, specializing in hearing
loss and how it affects children and families. Originally from Calgary, Alberta, I
spent 15 years living in New York City where my husband and I started to raise our
family. We recently left the hustle of the city behind, and now live in Westchester
County, New York.