When I Realized My Son the 'Late Talker' Is Deaf
My son was a late walker. He didn’t crawl until he was 9 months old, so I thought maybe he was just on the slow side. Soon after his first steps at 16 months, he was taking off, running like there was no stopping him. See, I told myself. He caught up. And you were worried!
When Sam didn’t start talking until he was almost 2, I thought it was just another milestone he was a bit late on. “Kids have their own timeline,” everyone told me. Still, when I heard the nearly complete sentences uttered by his cousin and friends who were the same age, I was concerned.
“You can’t compare him to girls,” my mother said. “Girls always advance earlier than boys.”
So I waited. There was always this nagging worry, though, that his speech wasn’t within the range of what was typical. I’m just competitive, I thought. That’s where this is coming from. There’s nothing “wrong” with Sam.
At Sam’s 2-year well visit, I mentioned his lack of speech to his pediatrician. She had me fill out an assessment of his development, testing him on various activities to see what he could and couldn’t do. I wanted him to pass, but I also wanted to know if he was behind.
Despite his late walking, his motor skills were right where they needed to be. He was social, so they didn’t suspect autism. But something still seemed not right: his speech and communication were way behind.
An Early Intervention team was brought in, and Sam saw a developmental pediatrician. Both found the same thing as the initial test we did at home. Sam would need speech therapy, along with developmental therapy for good measure.
“It’s just a speech delay,” people told me. “They are so common.”
“My son needed speech therapy and now look at him! You can’t shut him up,” one mom said of her 11-year-old.
I began to believe that with help, Sam would get to where he needed to be. Maybe he’d hit his milestones late, but that’s OK, right? Every kid is different.
“He’s so good at climbing,” a mom friend said. “All kids have their strengths and weaknesses. Sam is so physical, it makes sense that his speech is a little late.”
The Early Intervention people told me to have his hearing checked, just in case. More tests to make Sam go through. And for what? I thought. I knew he could hear me when I talked. He responded, even if most of the time I couldn’t understand what he was saying back.
I took Sam into the audiologist’s booth at his appointment. Sounds came from a speaker on the right or left, and he was rewarded with flashing lights when he looked in the correct direction. I thought he did OK.
The doctor came into the room after the test. “Sam’s hearing isn’t quite where it should be, especially in one ear,” the doctor said. “I’d like to do a test, called an auditory brain response or ABR, under sedation.”
Sedation, what? I knew he could hear. This didn’t seem right. I wanted a second opinion before putting him through anesthesia. But the second audiologist a few weeks later gave it to me straight. “I’m very concerned about Sam’s hearing,” she said. “He can hear some sounds, low frequencies, but can’t hear high ones. It’s not because of fluid — we checked and there is none. This is a problem in his inner ear. It’s permanent and he will need hearing aids.”
The news didn’t sink in right away. Hearing aids, huh? No big deal. We’ll get him those and then he’ll be able to hear and his speech will be fine.
First we had to have the audiologist’s results medically confirmed with the ABR. We tried it without sedation, but a 2-year-old can’t really sit still for as long as the test takes. So I had to schedule the sedated procedure, yet another month away. He was falling further and further behind because of my denial.
The sedated ABR confirmed what was suspected: Sam had mild hearing loss in one ear and moderate to severe in the other. He would need hearing aids for the rest of his life to maximize the hearing he had left.
I didn’t know what caused his hearing loss. I didn’t know why he had passed his newborn hearing screening. I didn’t know if we should focus on his speech or teach him sign language. What I did know, though, is that his milestones would be different. He was on his own.
The wait to get his hearing aids was excruciating, as every day that passed he seemed further behind. He started having meltdowns due to his inability to communicate. I understood. I was frustrated too.
A couple months later, the aids were ready. There wasn’t that “a-ha” moment I half-expected when Sam first put them on, like those videos on YouTube. In fact, he hated them. Slowly, though, he stopped pulling them out — except as leverage if he was mad about something else. I can’t have a cookie, you say? Then I’ll pull out my hearing aids.
Once he had his official diagnosis, Sam could receive services from a teacher of the deaf, who could better address his particular challenges. Slowly, Sam started talking more. People said what a change they saw in him. Now he is more focused during tasks and play, and is more excited to talk about things he’s done — although I still can’t understand most of what he’s saying.
Play dates can be difficult for us, because it’s harder for Sam to express his needs, wants, and feelings. It’s often a guessing game. “I can’t understand what Sam’s saying,” one little girl Sam’s age recently told me. “I know,” I said. “I can’t understand him either.”
How nice it would be if I could. If I didn’t have to guess what he was trying to ask me as we both melt into tears of frustration. If I didn’t have to wonder what elaborate story he was happily telling me in his own little language. We’ve started some signing, but he hasn’t picked up on it as much as I thought he would. He is very verbal and seems like he wants to speak. He’s getting there, slowly.
Sam’s milestones are different from other kids’. I’m learning to let go of being competitive and accept that his skills are still developing. Still, the elation I feel when he says a new word, or corrects a mispronunciation, or strings three words together, or sings a tune I can recognize, is palpable. He is smart, and he is working hard. Sam is on his own path, reaching his own milestones in his own time. Just like everyone said he would.