I recently had the opportunity to speak with Stephanie Marrufo, author of the new book All the Ways I Hear You and a parent of a child with hearing loss. If you haven’t ordered your copy of this book, you need to! I’ve ordered several copies (both print and digital) and have read it at home with my three daughters (who don’t have hearing loss) and it was a hit! I’m looking forward to using it in sessions when I return from maternity leave in a couple of months. In the meantime though, read below for details from my candid conversation with Stephanie about her new book and all things hearing loss. I especially love her advice for new parents of children with hearing loss!!
How did you find out about Silas’s hearing loss?
Our journey was a little bit interesting because even though (the medical community is) getting so good about newborn hearing screenings with the technology that we have, it took a really long time to get to his diagnosis. There was enough evidence along the way, I found out later, and starting out he was born he failed his 24 hour screening. He was perfectly healthy otherwise...healthy pregnancy, no illnesses, no known exposures, normal delivery, the whole works. Failed his hearing test at 24 hours. We did it again a few weeks later...and his tympanogram was showing there was fluid. It got to the point where we tried antibiotics, chiropractic, changing feeding positions, etc. and it didn’t clear up. Then the next step was to put tubes in. He got his first set at 7 months and now he’s on his 5th set of tubes at 4 years old. That’s where we started to walk that line of almost falling through the cracks. Once the middle ear fluid was gone, I was told multiple times, “Well it looks pretty good except...come back in three months.” I heard “come back in three months” a lot of times. “Let’s just check it again later.” We did this a lot. It got to the point where I knew something was off. I didn’t know what it was. He would turn to me when I made noises but he wasn’t babbling, he wasn’t mimicking...there was something off.
It was around that 2 year old mark when I got a little more aggressive and tried another audiologist (our fourth), who looked at Silas’s records and said that further testing was probably warranted as far back as 7 months old. We did an ABR with him and what we found was a reverse slope sensorineural hearing loss (in fairness to the professionals involved, it’s an unusual loss pattern). He was finally diagnosed with hearing loss at almost 2 1/2 years old, which in hindsight is unfortunate because of all of those really great early intervention services that are available until age three.
By the time he was diagnosed though, I was so relieved. Because I had an answer. I thought, “OK, I can do something now!” Once the diagnosis was there, all of a sudden we had tools. We had early intervention, we had hearing aids, we had other types of testing, we had speech therapy and we had access to a community of parents, children and deaf and hard-of-hearing adults that had been where we were.
The majority of babies who refer on a newborn hearing screening do not have a permanent hearing loss. Do you remember what you were initially told when given the results of Silas’s hearing screenings?
Yes. We were told it was probably just fluid from the birthing process. I think there’s some confusion there just with the verbiage (about the results of newborn hearing screenings)...I understand not wanting to use “pass” and” fail” because of the permanence I guess of those types of terms, but “refer” isn’t something that makes sense to people...so there’s some grey in there. It was a really interesting process.
How did you come up with the idea to write a children’s book?
Upon his diagnosis, one of the tools that I decided would be very helpful for my son and our whole family was books. We love books. I set out to find age-appropriate picture books that featured or included deaf and hard of hearing children, and I really struggled. I did not have an idea to write a children’s book that included this variety of devices and conditions. I knew nothing about cochlear implants(CIs). I had seen a bone anchored hearing system before, but I had no idea what it was called or how it worked. Deaf-blindness was not on my radar at all—that was all feedback from other parents. When you start asking, “Who’s got books for our kids? Where are the kids with hearing aids in children’s books? Hearing loss isn’t that uncommon. These books have to exist.” That’s when you get the feedback, “You think that’s hard? Try finding a book with a child who’s deaf and blind!”
That’s when I started realizing that we can all benefit from having this kind of inclusive resource. It doesn’t need to be perfect. These children don’t care if I am oversimplifying the way a CI or hearing aids work, they just want to see a picture of a happy, empowered kid who looks like them!
What is the message of the story?
The purpose is to remind children with hearing loss that they are amazing. They are awesome. They’re perfect the way that they are. No one wants to change them and we don’t want them to feel like they want to change themselves. So that empowerment piece is a top priority. Secondarily, the story is a great way to introduce hearing children to hearing technology and various communication styles, too.
When you set out to start writing this book 18 months ago, did you ever envision that this is how it would all unfold?
No. I honestly can’t believe how well this book has been received and how fast the word is spreading. I was months into this process before I felt I actually had something that was worth writing down and pushing forward. This is the way my brain operates, I learn by teaching. When I dive into something, I go deep. I really want to understand. Once the light bulb goes on, I stop and think “Everyone needs to know this. I need to tell them! This is important!” And, that’s when I started writing. This story is shifting this trajectory of what I thought I was going to do with my adult life! And more than once, I almost didn’t proceed. I almost stopped and put it away because I would get frozen in my fear of being inadequate or not doing the subject justice. I’m not an expert in hearing loss. But, as it turns out, being a well-informed, motivated and invested mother is more than enough!
From the time that you first had this idea, what would you say was the most challenging aspect of the process for you?
Walking that line of doing the person, the device, the condition justice, while still speaking to my audience, which is 3- to 6-year-olds. I didn’t have to know everything about a CI. I just needed to be able to explain it in a way that a 5-year-old who might be seeing the device for the first time, would then say, “Oh, that’s cool. Want to go play?” Kids don’t stamp on a bias with it. To them, noticing and asking about a hearing device is just an observation. As a parent, I love when kids ask! Adults are harder, the preconceived notions are deeper. Many times I’ve heard adults say to me that they just thought of hearing as an on or off switch; children are either deaf or they’re hearing. We recognize that adults (especially older adults) can have reduced hearing, but we don’t think about degrees of hearing loss when it comes to children.
Did anyone give you any opinions about how you should or should not communicate with Silas?
Sure. I can’t say that I’ve had conversations that have been abrasive, but that might partly be because my perspective is what I’ve said in this book: the best way to hear and the best way to communicate is the way that works best for you. And I think the part that we have to be so mindful of—especially for families of small children—is that communication needs and strategies can change. You can change your mind. It’s ok to use some sign language and verbal language and cued speech...it’s ok.
I remember, right after Sy was diagnosed, someone asked me if I was going to teach him sign language. I didn’t have the framework yet to know how to answer that question. I kind of got blindsided because I didn’t know what the “right answer” was supposed to be. I think it’s important that your team of providers, your family, your friends and your child’s caretakers maintain an open mind and aren’t going to coerce you or make you feel a certain way about different communication styles...because we don’t know what’s going to happen or what communication options will be the best for him yet. We don’t know if his hearing is going to worsen. So, it’s ok to have options, it’s ok to change your mind, and it’s ok to do what works best for your family.
What would you like to say to parents who have just learned their baby has a hearing loss? What would you like them to know?
It’s ok if right now you just have to tie a knot in that rope that you’ve been sliding down and hang on. Just hang on. It’s going to be fine. Things are going to calm down, the dust is going to settle, your path or paths will become more clear. Your baby is just as perfect as they were right before this information came through. Take care of yourself, manage your stress, and take the time to process your feelings surrounding the whole situation. Some parts of this journey are going to be tough at times (all the evaluations, appointments, scoring, testing, meetings, etc.), so it’s going to be really important for your child to be reminded often how amazing they are and that you wouldn’t change a single thing about them.
How can people purchase your book?
Buy it on Amazon Here
https://www.stephaniemarrufobooks.com
Stephanie Marrufo Books Facebook Page