You are not alone!

“The number you are trying to reach is no longer in service. Please hang up, and try again.”
State Hearing Screen phone number

 “Well…we can’t say anything for sure. Unfortunately, failing the OAE (test) doesn’t tell us a whole lot, really. You’ll wanna follow up with your Family MD.”
Early Intervention Coordinator

 (Rings a bell behind baby to no response) “You need to start signing with him right away. Can I teach you a few signs?”
Early Intervention SLP, during initial evaluation

 “No, it’s really unlikely that he’s deaf. Looks like his hearing might be off just because of a little fluid—the ENT will be able to diagnose him and get you started. He’ll be fine, momma. Relax.”
Family MD

 “Hello. My name is Dr. ____ (shakes rattle to the side of my baby’s head). Yes. Yes. Your baby is deaf. He was born with it. Congenital. You’ll need to get him bilateral cochlear implants. They do them very young now.”
ENT

 “If you use sign he won’t qualify for our school. He’ll fall way behind. You need to get him started here by 18 months. If you’re not planning a move here, right now, you might as well not do this at all.”
CI Surgeon, 8 minutes before surgery

 “It’s a choice. Every child is different. Most importantly, you have to see the CI as a tool. He will always be deaf, but he is not broken. Deaf is a culture, not just hearing loss.”
Deaf Advisor from State School for the Deaf, via interpreter

How many different voices are in your head today?
How many “right ways” are you desperately trying for your child?

Here’s our story, in a nutshell:

Shepard was born at home (on purpose) in late 2012. I declined to pursue a hearing screen after receiving an old phone number. Why would he be deaf? We have no hearing loss in the family.

Over the next 7 months I sang and read to him, and mimicked his sounds like I knew I was supposed to. My other bio-son and foster son fought like cats and dogs, but Shepard nursed on and never seemed to pick up on the tension. Something isn’t right here. His sounds aren’t progressing like they should.

No one can diagnose via Google like a mom, amiright? But we had to wait out months of tests and referrals. You know the drill. Finally— someone could tell me with certainty, with Audiogram proof in hand: Profoundly Deaf.

Shepard is deaf. It was a solid month post-diagnosis before I could say those words out loud without crying.

The conversations my husband and I had revealed our very different perspectives on this revelation.

I was grieving the loss of my happy boy’s future friendships. He would always be so different. I was grieving the obstacles he would face—just a baby and already with the world set up against him. So many careers, so much education I counted as loss for him. I was dealing with guilt that I had hurt him somehow in utero.

And the voices! The dozens of voices who knew how we should proceed in raising him; All completely different, opposing. I like having people approve of all my choices. That is impossible here. Only one choice was clear for me: I have a nerdy fascination with language and culture; so it was a pretty easy sell to give Shepard Deaf culture and ASL. God made him deaf, and Deaf he will be.

For my husband, another choice was clear. Shepard would be fine. We would get him cochlear implants. We could fix this. Technology is amazing these days. Kids are used to seeing differences; he’ll have friends. He’s so happy and friendly, right. Signing? Yeah, we can use some of that too.

We took the research, the experts, his physiology. We prayed and cried. And we got to work, informed enough to know that choosing to live in two, unfortunately opposed worlds was not a cakewalk. We also determined that Shepard’s best interest was the goal—not speech, not ASL, not people’s approval.

Over the past year we have had more appointments, more therapy, more paperwork than in every year prior combined. But today we’re OK. Shepard is better than OK.

We work hard almost everyday, and still feel grief occasionally. But far more often we go to bed grateful for new relationships, a new language, new milestones. Shepard is not less because of his deafness. Shepard is Shepard. He’s unbroken, independent of technology, and, most importantly, he is still my happy boy.

Stephanie Butler
Parent of a child with hearing loss