Faith’s diagnosis story
I remember the day that my daughter was deaf. She left the room when she realized I needed some time to process this news. My husband looked at me, and tears started to flow. He held me silently and said she would be fine because we knew what she needed to grow up. My husband and I both have profound deafness. Faith is our fourth and only child born deaf, while our three sons are hearing. It was a total shock to discover that she was deaf.
My reaction is often a surprise to many people, but several factors contributed. Our third son, who was born with complex and significant needs that require 24/7 care, had us worried throughout the pregnancy. We were told that Faith’s birth would not be free of disabilities because he has a syndrome with no name, SWAN. He is undergoing genetic testing and currently has a disorder without a label. My husband and I both know what it is like to be deaf and live in a world that hears, so I did not want this for Faith. My husband reminded me that technology has advanced, that awareness is better now than it was when we were kids, that people are slowly accepting British Sign Language as an official language, and that we have more rights and protection today than we did when we were young.
Faith’s first school year was a blur of appointments. We quickly assembled a team to support her, including speech therapists and her teacher of people who are deaf or hard of hearing. She also had a community pediatrician. All her appointments, along with her brother’s team of specialists, meant that we spent the majority of her first year traveling from one position to another. My husband was frequently away at work, so I often found myself on my own. He was always supportive and would constantly text me to see if I was okay.
After Faith’s cochlear implant at 16 months, things began to calm down. It was still a lot of appointments, but I became more confident in saying, “We need to take a break.” Rearrange the work for a later time. It is important to take care of yourself when you have multiple children with special needs.
Faith is currently in a wonderful school that supports her brilliantly. It is also important to note that Faith has a selective mutism, which can make things more complicated. We’re still working on a solution, but there are some issues. We both know what it is like to be a deaf kid in a mainstream hearing school without any sign language support. I want to help others understand what deaf kids go through and how they can make their schooling more inclusive and better for them.
In a perfect world, BSL would be taught in all Scottish schools as part of their curriculum. The ability to both sign and speak would be a great benefit to children like Faith. It’s easy for deaf children to miss important information in the classroom. Faith’s frustrations when she returns home from school, tired from constantly listening to staff and her peers, or frustrated because she misunderstood or didn’t get something would be reduced. We’ll get there eventually.
