When Sonya was diagnosed as deaf at just two weeks of age, I never felt more alone. No one in our family (to our knowledge) was deaf, and none of my friends had children with hearing loss. I didn’t know where to turn or who to talk to. In those early days, I didn’t realize how valuable communities that congregated on Facebook could be to my family, as we faced so many unknowns. Today, I am connected to three wonderful Facebook Groups: Parents of Cochlear Kids, Parents of Children with Cochlear Implants and Parents of Children with Hearing Aids. I strongly encourage parents not yet connected to these groups to do so. You can find valuable information, seek advice and connect with so many different people who are affected by hearing loss.
I recently asked parents in these groups the following question: “What is the best piece of advice you have for parents of babies with hearing loss?” I received so many amazing comments. I am sharing them here:
“Don’t let the shock and grief overwhelm you. Your child is perfect and your family might be different from what you thought it would be, but the hearing loss will become the new normal.”
“I was so upset and stressed out when we found out, and we didn’t really know much about cochlear implants. Those sound approximations online for what it sounds like to hear with CIs are horrible and I wish I never listened to them. Instead I wish I read posts from parents on this group and adults with CIs on what their experiences are like. It’s very scary at the beginning but everything works itself out one way or another.”
“You may be heartbroken for your little baby, and that’s okay. Be heartbroken, be upset, cry, scream, but move forward. Your baby will be okay and you will be okay.”
“Give yourself time to grieve. You will be upset, mad and question why this happened to your child and that’s all okay. Don’t compare your child to any other. All our kids have a different story and every experience will be different.”
“Find other parents to talk to who have been through the same experience.”
“It’s not the end of the world, it’s the beginning of a new one.”
“Read everything you can get your hands on. Ask all the questions. You are your child’s best advocate and it helps to understand what’s happening. Narrate your every move. Everything. Language rich environment. Accept the child you have. The “Welcome to Holland” poem expresses it well. This is how life is, we roll with what we are given and we find the joy in it.”
[And here is a link to that wonderful poem, in case you haven’t yet read it]
“You will very quickly realize you are stronger than you ever realized. But with that strength comes so much fear, doubt, and uncertainty. And that is perfectly okay. Cry, scream, and get angry because the person that emerges can face anything. And all the while your child will know no different and still be your perfect child. They will laugh and smile and still think you the center of their universe. And once the hearing journey begins and you hit your first milestone there will be no greater feeling in the entire world.”
“Keep talking to your baby! No matter how silly you feel. It matters!”
“‘Acceptance comes and goes.’ Hands down the best thing the person from early intervention said to me. Also, reading a lot from a deaf perspective made me realize my daughter may be perfectly happy with who she is and to see it more as deaf gain rather than hearing loss.”
“Language acquisition through sign language and spoken is so very crucial in the first few years. Sign language doesn’t inhibit spoken English! Help parents understand all is not lost because their kiddo is hard of hearing or deaf. One does not have to be hearing or speaking to be successful. Reach out to the deaf community for advice as well.”
“I am 100 percent happy that we went ahead with using ASL and speech together. Zero regrets. Best choice ever. My four-year-old loves both. It’s all about opening doors for her, not closing any of them. I also have zero regrets that we chose to implant. In the end, I did not need the complete approval of either the auditory/verbal only people or the deaf community. What I needed was to know that my daughter was given every opportunity available. She can choose to live however she wants to later. We will have given her the tools to go verbal or to join the deaf/ASL community or to do some combo of both.”
“Go with your gut ALWAYS. You are your child’s best advocate.”
Thank you, to all of the parents who shared their thoughts. I hope readers find them as helpful and comforting as I do.
Do you have advice that helped you? Please share it in the comments section below!
P.s. You might be interested in reading my earliest posts including:
How to Tell People Your Child Has Hearing Loss (And How to Respond)