BC Hands & Voices

By: Sheryl Hatton

I must admit, I was pretty excited when I sat down to write this piece; reflecting on my experiences as a typically hearing sibling of a child with hearing loss brought back lots of fond memories. I should clarify, however, that with just the one sibling, having a sister with hearing loss was my normal, and I don’t have personal experience of having a sibling without a hearing loss. I had never been a big sister before, so that was a new adventure in itself. Just like any older sibling, I remember having to learn to share everything: my toys (when she stole them), my clothes (when she stole them), my friends, and my parents! Having a hard of hearing sister meant that I also got to experience other things that many kids don’t. It’s a lot of fun to look back on this now as an adult, and I’m happy to share some of these memories with you.

We learned of my sisters hearing loss when she was two years old. At this point, I had just started school, and was old enough to understand what was happening with her. Some of my earliest memories are from my sister’s audiologist and ENT appointments; I have very vivid memories of a tiny toy monkey  “jumping out” from a box and banging miniature cymbals!

My sister’s hearing loss was identified as moderate to moderately-severe sensorineural  hearing loss for both ears. Once she was fitted with hearing aids, her language developed very quickly. I remember watching my mom work tirelessly to teach my sister letter and word sounds; “tum”, ‘bum” and “thumb” were a particular challenge and frequently mixed up early on…at times to my enjoyment. I don’t recall thinking this was strange or different than what my friends would see in their homes. Although I knew that she went to a specialized pre-school to help her in her speech and hearing development, I never really thought anything of it.

I do remember being intrigued with all the cool things that my sister got to do, and that I wanted to experience them for myself. Rituals with us laying in bed with hydrogen peroxide tickling our ears as it bubbled was a particular highlight. (Warning: do not try this at home without the advice of your doctor!). In retrospect, I learned from this that too much earwax can be a problem for a child who wears hearing aids but at the time, it was just a lot of fun for me. I very much wanted to be involved, and took great enjoyment in helping our mom test hearing aid batteries and the hearing aids themselves with a stethoscope. This skill came in useful when my sister entered grade school; I was given the task at school of testing her “phonic ear” (FM system) each morning until she was old enough to do it herself. I took great pride in that role. 

At home, I figured out, much to our parents’ frustration, that jumping up and down on the floor on one side of the house was a great way to get my sisters attention when she was on the other side. I also learned to enunciate my words, speak loudly, face her when I was speaking, and use my hands to enhance my speech. These were not things that were taught to me explicitly, just ways that we naturally adapted. As an adult, and a teacher, I am very grateful for these early lessons in communication strategy.

I also realized that having someone who can lip-read in your life is both a blessing and a curse; it’s great if you want someone to help you spy, but not so great if you are trying to have a private conversation with someone else! Although I never would have admitted it to my parents at the time, I often tormented my sister by mouthing insults at her (so my parents wouldn’t hear it), just to get her riled up. Despite my role in her torture, I was intensely protective of my sister at the same time, and would never have let anyone else get away with similar actions. 

My sister had her share of annoying quirks too, and she certainly knew how to use her hearing aids to her advantage. When she didn’t like what someone was saying, she found her own means of tuning them out. What began as a toddler telling us “no-talka-me” and turning off her hearing aids, evolved into a chant of “I don’t have to listen to this….I don’t have to listen to this…” followed by the familiar click of hearing aids being switched off. As a teenager, she would use the excuse of “oh, my hearing aids weren’t in, I didn’t know you were waiting” to ensure she got more time in the washroom than me before school each morning. I, in turn, learned how to pick a lock!

As we grew up, I saw my sister develop many friendships, play sports, camp, swim, and excel at a mainstream school; all things one would expect from a child with typical hearing. As a teen, though, I was aware of my sister’s insecurities around people seeing her hearing aids, and I would see her struggle in situations with a great deal of background noise. Like anyone of that age group, she didn’t want to be different. I never truly understood those challenges, most likely because for me she was just like everyone else. 

In all, as a sibling of a child with hearing loss, I can honestly say I wouldn’t change a thing. Our lives were pretty normal. Our childhood was fun and rich. My experiences have helped me to be a more aware and empathetic person, and inspired ongoing curiosity to learn about unique learning strengths and needs. In many ways, her “impairment” has been a gift in helping shape who I am today. 

I wear various hats in my life but one that I’m particularly proud of is that of being a ‘mum’. As the parent of two young girls, I tell them that my most important job in life is to keep them safe. After that, it’s to nurture them, and foster a love of life in them so they can become resilient, engaged people. That’s a pretty tall order, and sometimes it’s easy to forget how big our job as parents can be, and how important our role is in shaping their futures. We are, after all, surrounded by professionals in our lives. And whether we have teachers, doctors, or other experts in our world, their knowledge can seem so much greater than ours.

As parents of children who are deaf or hard of hearing (d/hh), this is even more true. Indeed, if our child’s hearing loss was picked up during their youngest days, we can find ourselves supported by a team of early intervention professionals while we are still trying to find our feet as new parents. Although these experts can provide outstanding support, the information may be overwhelming and the learning curve can be steep. We might even be tempted to hand over a degree of responsibility in the decision-making for our children. However, research has shown that the most important relationship for a child in their language development is that of their mother (or other primary caregiver).

I was reminded of this recently when I was lucky enough to attend the annual Hands & Voices Leadership Conference, held in Texas for 2015. This was a great opportunity for me to reflect not just on my d/hh daughter’s development and needs, but also on my own journey as a parent to a d/hh child. With my ‘mum’ hat on, there were two presentations that really resonated with me. The first was about the social and emotional needs of d/hh children by Susan Rolinger and John Cool, and the second was on pragmatic language development for d/hh children by Christine Yoshinaga-Itano.

An important message for me was the importance of the quality of the communication we have between parent and child; the content of our communication is more important than the mode we use when fostering social and emotional wellbeing. For example, we need to make sure that we’re engaging in two-way conversations with our children, explaining social behaviours and situations to them, and naming and describing emotions. It doesn’t matter if we’re using our voices or our hands to do this.

Another interesting point was that pre-kindergarten d/hh children tend to spend less time with their peers than hearing children. When I think about it, this was certainly true for my daughter during her first two years, since a lot of our time then was spent with her early intervention team. This was indispensable to her blossoming into the beautiful four-year old that she is today. Now, that we’re reaping the benefits of that intense time, early intervention takes up less of our weekly schedule, and my daughter is able to enjoy more time with peers through preschool, music and gym classes, and getting together with her friends.

Building on these points was the fascinating issue raised around social language: even when our d/hh children have generally age-appropriate language skills, might they still  struggle with mastering the rules for social language? Their vocabulary, grammar, speech articulation might be great but they might find it difficult to master the socially appropriate use and understanding of language, known as pragmatics. This gap can feed back to their wellbeing; problems with pragmatics can undermine their social confidence and acceptance.

What a lot of food-for-thought! The Hands & Voices conference reminded me that, just like this parent-driven organization, my husband and I are the ones who move our family forward. As part of a well-supported team, we are the ones who are best placed to make the right choices for our child.

Like 95% d/hh children, my daughter was born to hearing parents. My knowledge of parenting a d/hh child was low to start with but I built those skills with the support of our early intervention team. They helped me develop my communication, and my advocacy skills. They did this by not only teaching me but also setting such excellent examples. I’ve been lucky to work with amazing early interventionists. Right from the start, I was given compassion and guidance but above all else I was shown respect; respect that I could make the best choices for my daughter with their support. I was treated as a leader in my parenting choices.

Now that I’ve seen what great collaborations can come out of successful parent-professional relationships, I hope to carry this forward with me as my daughter transitions to kindergarten next year. When I walk into the first Individual Education Plan meeting, working with a new team of professionals, I’m going to hold my head high wearing my ‘mum’ hat. I’ll proudly say to myself ‘I’m the mum. I’m my child’s biggest advocate.’