As I was preparing to become a mom, I knew I’d need to be my child’s voice at points. I’ve always been one to take action when necessary, even prior to having a child, so I wasn’t particularly worried about speaking up for my kids. However, I never anticipated having a child with a profound hearing loss.
I quickly learned that being a parent and being a parent of a special needs child are two different things. Being a mom of a deaf kiddo takes a different kind of advocacy, and it’s been a learning process to determine how to best speak up for my baby. Here are a few things about being an effective advocate for your child with hearing loss that I’ve learned along the way.
Upon receiving my son’s diagnosis, I began researching extensively on the types and causes of hearing loss. I knew that in the months to come, I’d be having many conversations about his diagnosis. I wanted to know as much as possible going into those situations. In the age of the internet, there is so much information at our fingertips. I learned so much in a short period of time simply through Googling and connecting with other parents in similar situations.
In turn, this information helped me as I was navigating medical appointments and early intervention meetings. It was much less overwhelming to already know much of the information going into those meetings, versus learning it in the meeting and having to process through it all.
Be as organized as possible
One of the very first things I did after learning of Cooper’s hearing loss and the severity of it was to start a binder with all his medical information. I knew we would be getting overloaded with information and there was no way I would be able to retain it all. His binder has everything from his hearing tests, appointment summaries, contact info for our medical team, and insurance information. The answer to nearly every possible question is in those pages. It brings me peace of mind to know that.