Evan didn’t have his newborn hearing screening until he was about 2 ½ months old.
This was no one’s fault, really. I remember the audiologist was going to do it when he was much smaller, but she would have to do it again after his big surgery anyway, so we decided to just have her wait.
When we finally discovered that he had severe-to-profound hearing loss, he was 6 months old. I was surprised, of course, but, by comparison to what we were experiencing at the time, with him having been back in the hospital for almost a month and intubated, it was rather low on the hierarchy of worries.
Thankfully, we are in a different season now, and Evan is home and working on his developmental milestones as he approaches his first birthday. The more he grows, though, the more I become aware of the significant challenges that come with having a child who is deaf.
I could likely list them for days, but, for today, I’ll just focus on some things I’m learning as a newbie mom in this deaf/hard of hearing community.
There are a LOT of options.
Upon receiving Evan’s original diagnosis, I figured that he would get hearing aids, they would make him hear normally, and we could learn sign language to be able to communicate in case he lost a hearing aid or the batteries ran out.
Not. That. Simple.
For starters, learning sign is not that simple, particularly when taking care of a baby and a toddler. Plus, Evan’s hearing aids don’t help much with his degree of loss, so cochlear implants are something we have had to learn about, including the three manufacturers and picking one.
On top of that, American Sign Language isn’t the only option. There’s Cued Speech, and Signed English, and Listening and Spoken Language. And there are schools that focus on one or multiple of those at a time. And there are families that focus on one or none of those, some with very strong opinions for or against differing options.
There are oh-so many layers to the options that exist, which is something I was never aware of, even though I considered myself to be moderately in-the-know about deafness, having had a handful of students with hearing technology in my teaching career.
Nope…I was clueless…and certainly still am in many ways. I’m working on it, though. 🙂
People are really unaware about deafness.
Like I said before,I had direct experience with several kids with varying levels of hearing loss. Despite how much I thought I knew, there was SO much that I didn’t.
At an event I attended to connect with other moms of children with hearing loss, a mom shared a letter that her daughter hands out to her teachers at the start of each school year. Among other things, it pointed out to them that, if they need to “whisper” something to her, they need to do it into her processor and not her ear. Whispering in her ear is ineffective because the microphone of her cochlear implant is at the back of her head.
How many times had I made this mistake with the child I had with cochlear implants and not even thought twice about it? What other mistakes have I made (or DO I make) without even realizing it?
Cochlear implants are not just fancy hearing aids.
Up until only recently, I thought cochlear implants were really just an advanced hearing aid. In reality, they are nothing like hearing aids. I’m a bit embarrassed to admit that I didn’t even know the outer portion was connected by a magnet.
Cochlear implants are a learning process all their own, which I am doing quite a bit of research about these days.
It requires a total shift in the way you interact that is way more challenging than expected.
At our first session with Evan’s Developmental Hearing Therapist (also something I didn’t know was a thing), she suggested starting to use basic signs whenever we did corresponding things in our daily routine: Milk, diaper, eat, bath, all done, Mommy, Daddy, etc.
I was totally on board and thought it would be no problem. I’m still on board, but it has taken SO much longer to get into the habit of using signs than I expected that it would. Really, it’s changing the entire way you’re used to communicating without even thinking about it.
There are so many other parents eager to help.
I have met no shortage of parents who are so willing to share their experiences and advice. In fact, at the moms’ event that I mentioned earlier, there were many moms with grown kids who were attending for the sole purpose of being helpful to other moms (although the night away probably didn’t hurt, haha).
There is a lot to learn, but it is so fascinating, and obviously so worth it.