Hope for Moms When Your Child Is Diagnosed with Hearing Loss
By Alaine Jacobs
On January 10, 2016, I woke up with the anticipation of being a first-time mom. My entire pregnancy had been high risk with a lot of what-if scenarios. We decided that for the baby’s safety we needed to induce him to be born three weeks early. What I didn’t know on this day seven years ago is that this one event would change the course of our lives forever.
The Jacobs family with parents Michael and Alaine holding (from left) James (4), Patrick (6), and Leda (1), in 2022.
Cochlear Implants Before Age 1
I’m a mom of two boys who were born deaf due to a rare genetic condition called Warsaw breakage syndrome. Both of the boys received cochlear implants at 11 months old. Our third baby was born with typical hearing, and she was my first full-term, non-NICU baby.
Hearing loss does not run in our family. To say that it was a complete shock when our first two children were born with hearing loss is an understatement. At the time I had so many questions: How would we educate them? Do we all have to learn sign language now? How did this happen to us?
The challenges of caring for a newborn and a 2 year old, both with hearing loss, left me exhausted and overwhelmed. We had multiple therapy sessions for each child every week and two different sets of speech goals. All the while I was trying to care for the basic needs of a toddler and a baby.
Both James and Patrick were born with a rare genetic syndrome that caused their hearing loss.
Learning to Advocate
At the beginning I thought that everything was hard. I spent so much time talking to other parents and specialists about what would be best for each of our sons to learn language. It felt very overwhelming at times.
However, as the years went by I learned more and we all got better at living with hearing loss in our family. I got certified as a Master IEP Coach to better understand the IEP (individualized educational plan) process when our older son started kindergarten.
Our second son was born with a small cochlear nerve, which affects his ability to hear even with his cochlear implants fully optimized. We started to use American Sign Language in our family to help our 4 year old better communicate with us and his teachers at school.
At seven years into this journey I can now say that I feel both competent and confident in advocating for my children with cochlear implants.
The most important lesson that I’ve learned so far? That hope and healing are possible even in the middle of the journey.
The Jacobs family was completed in 2021 with the arrival of their baby girl, Leda, shown here at age 1, and whom the boys both adore.
Hope and Healing for Families
I’m now passionate about helping other moms live their own story of hope and healing amid hearing loss in their children. Through my blog, A Regular Mom Blog, and as an administrator for the Triangle Hitch-Up group in North Carolina, I encourage and support moms of children with cochlear implants.
I understand how overwhelming it feels for a mom to receive that first diagnosis that your child has hearing loss. There is a statistic that 90 percent of kids who are born with hearing loss are born to typical hearing parents. This means that there are many parents out there just like you who are raising deaf or hard of hearing kids without having the experience of being deaf or hard of hearing themselves.
If I can leave other moms with a word of encouragement today, it would be that even if things seem really hard right now, it will get easier.
You will find a daily routine for your kids that incorporates speech goals and sign language.
You will learn through trial and error how to effectively advocate for your kids.
And then you will teach your kids how to advocate for themselves one day.
Before you know it, you will be the mom who is counseling another parent new to hearing loss. And you will realize how far you and your children have come in their hearing loss journey.
I can’t wait to cheer you on along the way!
Alaine Jacobs is a blogger and a freelance writer who lives in North Carolina with her husband and three kids. She loves to encourage, educate, and empower moms with kids who have hearing loss. For more information on hearing loss with kids, find Alaine at A Regular Mom Blog.