*This was originally written over a year ago. Sometimes I just need to write even if I keep it to myself, but today, on the 2nd anniversary of her diagnosis, I am ready to share.*
In the world of hearing loss I feel like the label “Late Identified” is a big red stamp across my daughter’s forehead. These days most deaf children are diagnosed through a brief newborn hearing screening before they even leave the hospital. Since SJ wasn’t born at the hospital we never had any testing done until she was over two years old.
SJ’s birth was perfect. It was hands down one of the most amazing, beautiful, and spiritual moments of my life, but if I could change the past then I would have had a screening test done after the home birth.
As with any treatment plan, like with cancer or autism, the earlier you can diagnose and intervene, the better. There are so many benefits to getting started at a young age when it comes to language, and we lost two years of valuable time. However, having those years of not knowing did have some benefits.
When I blogged for the first time about SJ’s hearing, Amanda (from Oh Amanda) left me a link to a woman she called her hero. That woman was Rachel Coleman of Signing Time. I read her story, got several of her videos, and she soon became my hero as well. Her daughter Leah was also late identified because the hospital had taken a break from newborn screenings for a brief time before they became mandatory and that was when Leah was born. Here is what Rachel said about her daughter being late identified.
“Was it meant to be? I don’t know. I wonder how over-protective and lame I would have been if they had handed me my newborn baby and said, by the way she’s profoundly deaf. Looking back I can see the blessing it was that we got to know Leah for her first year with the complete expectation that she could do anything, she was limitless. When we did hear her diagnosis “severe to profound hearing impairment” when she was 14 months old, we mourned. We cried. We felt silly. We couldn’t believe it. We thought there was a mistake. We hoped it would go away. We felt all of that and more at once! Finally we looked at Leah and she was still her happy beautiful self. And we recognized that for Leah nothing had changed. Nothing was wrong.”
Boy do I relate to that! When we first came to SJ’s school, one of the advisers had commended me on how well I’ve done at communicating with SJ despite her hearing loss. She told me that many parents have a hard time just talking with their deaf children and unknowingly tend to turn their conversation toward someone that is listening to them. I’d like to take credit for being so loving, but I didn’t know she was deaf.
Another therapist was astounded by SJ’s cognitive abilities and said she had never worked with a deaf child potty trained at such a young age. I’d like to take credit for that too, but once again I didn’t realize I was potty training a deaf child (and besides that she initiated it). For over two years I treated her like any other baby/toddler. We didn’t fret. We weren’t trying to protect her. We weren’t taking action. We just loved her as she was, and in the mean time she loved us back and proved to be a very capable, thriving, joyous little lady.
I know now more than ever how vital communication and language is. However, in those years we “lost” by not starting therapy or using hearing devices we also gained a lot and I learned a valuable lesson. She understood me. She may not have understood my words, but our love transcended all of that. Our hearts spoke to one another. I have always told my kids that I love them more than words can say and for SJ I’ve lived that truth.