If I could, I would go back to tell myself a few pieces of hearing loss advice. In the aftermath of finding out about our child’s hearing loss, we were a world wind of emotion. Here we were loving our growing family and holding our sweet newborn, and yet on the other hand, I felt lost in grief, finding myself in an abyss of fear and shame. The fear felt heavy and the shame felt debilitating.
Hearing Loss Advice I Wish I had Been Told
1. There is so much hope
Seeing my children with hearing loss laugh, connect, run, speak, and learn was like seeing the sun after a long and thurderous storm. I had no idea what to expect at first. But, hearing aids are nothing short of a miracle. Seriously, amazing. Hearing aids work by taking in my child’s natural hearing, amplifying and clarifying the sound. Hearing aids had a negative connotation for me growing up. While they work in a similar way glasses do, they didn’t feel the same as glasses. This impacted my feelings of resistant to my son’s hearing aids at first.
In fact, I confess, I hated the hearing aids. I didn’t even want to take our family pictures with his hearing aids on. I didn’t like the way they looked on my son. However, underneath those feelings of hate were deeper emotions of grief that stemed from his hearing loss diagnosis. I felt shame that I somehow did something to create this. My grief turned to anger at the thought of my child having to experience this challenge in life. However, today I know and see that with help of his hearing aids he has no limits.
2. It Won’t Feel Like This Forever
Learning to trust his hearing aids – to appreciate them, and then grow to love them has been a journey for me. The love did not happen overnight. Through time, I began to see little by little what an incredible gift his hearing aids are. For both my children, the sounds of “s” and “th” and “f” are pretty much not heard when their hearing aids are off. However, when they are on, those impossible sounds become possible.
Now, years later with some therapy and time behind me, I cannot get over how much love I feel for his hearing aids. They give him the gift of clarified speech so he can hear every “I love you,” his sister’s name, “Sayge” and how “funny” he is. I tell him all the time, how much I love his hearing aids. The reality, is that we all love his hearing aids, even him. Adding fun colors from Phonak, and bright ear molds, have added to Ayden’s ownership of his hearing aids.
He does not want to miss out on much. I am sure there will be a time in life that he doesn’t want to wear them, but for right now, I have a hard time getting him to take them off at night. He wants to sleep in his “Super ears” as we call his hearing aids, every night. I have to sneak in after he has fallen asleep to take them out.
3. Unique Qualities from Hearing Loss
Additionally, my children with hearing loss have gifts that are unique to them- gifts that they have because they have hearing loss. For example, their ability to see right into you, their visual awareness, and their affection. I look at those gifts that they have and I talk about it with them, I share with them with others, and my husband and I marvel at the incredible gift they are – including how their hearing loss continues to shape them.
4. It does get easier
Life will get easier both emotional and practically. Emotionally, I needed support to work through what I was feeling. I met with a therapist, joined a yoga gym, and met with a mom’s group. Each one of those pieces were lifelines for me.
Practically, it gets easier too. For our family, much of the first few years revolved around making sure we didn’t lose a hearing aid, or that they were working. I depended a lot on our early intervention therapist to guide me through the ins and outs of hearing loss. There is so much information that I felt completely overwhelmed. Learning to take it in stride was important. I wish I had let go of trying to explain everything about hearing loss to our family and friends, and be okay with not fully understanding it all.
5. Grieve but let the Joy In
The loss is real, and hard, and heartbreaking. I had friends and family offer up a lot of advice and thoughts. While I know these thoughts were well intended, the feelings of grief I was experiencing felt shameful in and of themselves. How could I be grieving when in my arms was this amazing and very healthy child? So no, we didn’t have the same grief and fears as some parents do, but we did – and still do – have to grieve.
However, in the middle of the grief is joy. The joy is there, rich and loud – screaming for you to take hold. Push that shame aside, push the grief aside and embrace your child watching your face, smiling at you, and holding you tight. I have seen how my children with hearing loss has given them a unique gift of connection that I don’t think they would have otherwise. That is a miracle to me.
6. Seek Support
Do what you can to seek the support you need. That involves therapy, and support groups, and meeting with other families that have hearing loss. When I discovered Phonak’s instragram, I was shocked by the therapeutic role of seeing hearing aids every day in my news feed had on me. I saw beautiful families; cute babies, and children; and hope. I do not see many children with hearing aids in my everyday life – besides my own children. Seeing these people was a vital piece for me to stay grounded in my thoughts and perspective. Many states offer support programs that are free of charge. Having healthy outlets is a must. If it’s not therapy let it be exercise, alone time, journaling, spending time with friends that you can share openly about your feelings, etc. Take care of yourself so you can take care of your family.
7. Learning Curve
Understanding hearing loss is not easy. My children have a lot of hearing. I didn’t feel like we belonged in the deaf community. This strange piece, kept me from seeking support at times, even when I desperately needed it.
People have a lot of opinions about a lot of areas that I was in the process of trying to understand. Will you teach them sign language, will they go to school, will they drive, will they go to college? I got all of these, and more than once. They were 20 chapters in a book I felt like I was still on chapter 1. I didn’t have answers for these questions at first. Let yourself learn and don’t feel like to have to have answers for other people.
8. Get Early Intervention
From the first few days to the first few months, I leaned on our early intervention therapists and support. They were my lifeline. Both my children had a developmental therapist (DT). I was lucky enough to have the same DT with both of my children. She has heard and seen it all from me. From one week asking the validity of the diagnosis, to the next week helping me tell family, to another week, giving me tips on how to advocate for hearing loss. I joke all the time that the therapy is really for me, not for them at this point. For me in the beginning stages, Early Intervention was my crutch for all things hearing loss. Eventually I was able to branch out, but in the beginning stages I completely leaned on EI.
9. Seeking Medical Understanding
On a medical front, the lack of understanding felt heavy. While my son looked healthy on the outside, I wasn’t sure if there were more issues lingering on inside his little body. So, when it came to understanding what was actually going on medically, we leaned on our ENT and Audiologist for guidance.
When Ayden was born, our ENT said, for her best practice, that she encourages families to consider doing four things: EKG, Vision Test, MRI, and Genetic testing. These are ways to rule out and become aware of more serious health issues that might be occurring. Looking back, I would have asked them to do blood work too. We now know that the leading cause for non-genetic hearing loss is caused by a single virus – The CMV virus. This might look different for each family and each child. This might not be the best direction for others. But, leaning on those professionals was very helpful for us in the beginning.
10. Give Yourself Grace
Understanding hearing loss and its impact will take time. In the midst of grieving and learning it can feel overwhelming. Give yourself grace, and time to take it all in. Don’t feel like you have to answer to anybody else, but let yourself bond with your incredible gift – your child.