Wonderboy’s hearing loss came as a shock to us. Sure, we knew he’d failed the newborn hearing test. Three times. But those rounds of testing were administered in the NICU where there is always a humming and beeping of background noise, and the tech had told us that ambient noise could skew the test results. We had more pressing things to worry about: his (minor) heart defect; his recovery from omphalocele repair surgery; the genetic testing necessary to determine whether he had a potentially serious chromosomal syndrome; the fact that he was going home on oxygen. At least he was going home, and we tucked the hearing-test business to the back of our minds and focused on the immediate business of keeping him alive.
Every month the health department sent us a letter reminding us to have the hearing screen repeated. Sure thing, we said, just as soon as things slow down a bit. We were constantly having to take him to some specialist or another. The chromosome study came back negative: his medical issues were not due to a genetic syndrome. He was just one of those babies for whom something goes slightly awry early on in utero, resulting in a number of physical abnormalities down the line. An MRI had shown brain abnormality, but what its effects would be, no one could say: time will tell, they said. (They are still saying that.) He had extremely high muscle tone (hypertonia) and could not stretch out his arms and legs very far. His fists were tightly clenched. He started physical therapy at four months of age. He required emergency surgery to repair a double hernia with incarcerated bowel. The cardiologist was still keeping a close eye on his heart. The hearing test would just have to wait.
Besides, we told ourselves, we know he isn’t deaf. He startled to loud noises. Of all the things there were to worry about, we really didn’t think hearing loss was one of them.
But by six months, we had suspicions. He wasn’t babbling. He didn’t turn his head at the sound of my voice, lighting up with recognition before even seeing me, as our other children had. We took him back for another hearing screen.
He failed.
The audiologist said something about a "mild" hearing loss, and I thought that didn’t sound too bad. "Oh, no," she told me, hastening to set me straight. "It isn’t like a ‘mild’ fever. ANY hearing loss is serious. Most speech sounds fall at the bottom of the scale, so if you have any hearing loss at all, you’re going to have trouble with speech."
As it turned out, Wonderboy’s loss was a bit more serious than the audiologist first thought. Further testing placed him at the "moderate" level on the scale of mild—moderate—severe—profound. Unaided, Wonderboy’s ears can’t detect sounds softer than 50 decibels. Most speech sounds fall in the 20-decibel-or-lower range. Our little guy can hear vowel sounds, the louder middles of words, but few of the consonants that shape sound into speech. For Wonderboy, people probably sound a lot like Charlie Brown’s teacher. Wah-WAH-wah-wah-waahh-wah. We learned about the speech banana: the area on a graph that shows where speech sounds fall in the decibel and frequency ranges. Wonderboy can’t hear sounds above the horizontal 50 line on that chart.
(More or less. He has a sloping loss which is slightly better at the lower frequencies.)
By his first birthday he was wearing hearing aids, and what a huge difference we could see! Aided, he tests around the 20-decibel range. He hears and understands a great deal of what we say. He is two and a half years old now, and he is finally beginning to add some consonant sounds to his verbal speech. Daddy used to be "Ah-ee" and now he is "Gaggy." (This cracks me up. You can get a lot of mileage out of calling your husband Gag.) Grandpa is Amp-Ha. Wonderboy’s baby sister is "Gay-gee." As you can see, he doesn’t have a B sound yet. His M is perfect, though; I have been Mommy, clear as a bell, for over a year.
But Wonderboy’s verbal speech is only part of the picture. His actual vocabulary is enormous, thanks to sign language. He uses a combination of sign and speech; we all do. Although it appears he will be primarily a verbal person as he gets older, sign language will always be an important second language for him. Hearing aids, incredible as the technology is nowadays, don’t do you any good at the swimming pool. Just for instance.
Hard of hearing. It used to be a phrase that conjured up in my mind the image of a grizzled old man with an ear trumpet. What? What’d ye say? Speak up, lad! (Apparently he is a grizzled old Scotsman.) Now it applies to my son. Words pop up on a TV screen, "closed captioned for the deaf and hard of hearing," and I’ll give a little mental jump: Oh! That means Wonderboy!
Watching our children learn to speak is one of the great delights of parenthood. We mothers tend to collect their funny pronunciations, their experimentation with the meanings of words. This time around, my joy has been doubled, for I get to see communication unfold in two languages. His funny little toddler signs are just as endearing as any "helidopter" or "oapymeal" ever uttered by a two-year-old. ("Oapymeal" was one of Jane’s. It meant oatmeal. I served it often just to hear her say it.)
I put some links in my sidebar for American Sign Language resources. I can’t say enough about the wonders and benefits of ASL, not just for deaf and hard of hearing children, but for all babies and toddlers, especially those with any type of speech delay. ASL is a beautiful, nuanced language, a visual poetry. I count myself privileged to have been put in the way of learning it. Jane is determined to certify as an interpreter someday, and I have to admit I’m a little jealous. I wish I’d learned at her age.
Wonderboy makes a fist and touches a knuckle to his cheek, wiggling the hand. "Ah-hul!" he shouts. Apple, in two languages. The speech banana? We’ll get there, one way or another.
*Audiogram image courtesy of GoHear.org.
Tags: special needs children, American Sign Language, baby sign language, hard of hearing
Wonderboy had new ear molds made last week. Ear molds are little custom-fitted silicone doohickeys that fit a person’s ear canal exactly and attach to behind-the-ear hearing aids. The actual hearing aids last for years, but a growing baby needs new ear molds every three to six months. Wonderboy’s current pair have started to fall out occasionally, so it was time to get new ones made.
Jane brought a friend along to the audiologist’s office to watch the procedure. The girls enjoyed watching the audi shoot goo into Wonderboy’s ears, one at a time—pleasantly blue goo which looked like gaudy swirls of cake frosting when she was finished. Wonderboy was less amused. But he’s a good sport and allowed himself to be distracted by our beloved infant hearing loss specialist, C., during the short wait for the goo to firm up. Then pop!, out it came, a perfect impression of his ear canal.
The impressions are sent to a lab, where they are used to make the new molds. Jane and her pal were dazzled by the choice of colors…didn’t I think he’d like purple molds, or maybe lime green? I opted for the faintly blue transparent kind–but they glow in the dark, so there was satisfaction all around.
I was unprepared for how much I would adore Wonderboy’s hearing aids. I love that he likes wearing them, fusses if I don’t put them in first thing each morning, tips his head expectantly while I check the batteries. They are officially my favorite form of technology, surpassing even this computer (gasp) and my propane fireplace (which is saying something—that thing draws me like a magnet).
I love that when I turned down the volume of the CD player in the car yesterday to field a question from the back seat, Wonderboy started calling out “Mah! Mah! Mah!” This is his all-purpose syllable; it means, depending on context: “Mom,” “More,” “Dad,” “Jane,” “Could you hurry up with those peas, please!” In this case, I understood it to mean, “Turn the music back on.” We were listening to the CD that came with our Signing Time videos. He knows the songs and wiggles his fingers while he listens, watching his own hand intently—his way of singing along.
“Mah!” he insisted, and I had to laugh at myself, because in my last Charlotte book I wrote a scene in which young Charlotte is inordinately proud of her baby brother for packing so much meaning into the word “Buh.” Well, maybe Charlotte was overreaching, but Wonderboy really is working to pack content into the few sounds he can currently shape. And he’s succeeding: that “Mah” speaks volumes. Driving down the road, I cranked up the volume, singing my own internal ode to hearing aids and ear molds.
Related post: Making ear molds
Our family favorite: the Signing Time DVDs and videos. My girls got these for Christmas and we’re all captivated! See All About Wonderboy to find out why we’re learning sign language. Signing Time creator Rachel Coleman, her daughter Leah (who is deaf), and Leah’s cousin Alex (who is hearing) have got my children signing and singing up a storm! We bought them because of the signs and fell in love with them because of the songs—Rachel is a gifted singer and songwriter. Highly recommended. Check them out at www.signingtime.com.
Need practice reading fingerspelling? This site spells out words for you in the manual alphabet, and you type in your answer. It repeats the word over and over until you get it right. ASL Fingerspelling Quiz
Other websites I like:
Signing Online
ASL Browser
ASL University
Related posts:
• Signing Time DVDs
• More about Signing Time
• Rilla Signs
• Unsolicited Signing Time Commercial
• Signing with Babies, My Favorite Topic
He is 13 months old and has had his hearing aids for two months. His hearing loss, diagnosed last fall, came as a surprise to us—we spent his first nine months focused on various and sundry other medical issues. First it was the omphalocele, discovered immediately after birth: a small section of intestine had herniated into his umbilical cord. He was rushed to the university hospital, where our favorite surgeon in the world tucked his bowels back where they belonged and custom-stitched him a belly button. (It’s a beauty, too.)
Then came the string of new and alarming discoveries: seemed like half the departments in the hospital had something to say about our boy. Cardiology, genetics, neurology, neo-natal…plus a couple of others who were able to cross him off their lists, thank goodness. The next six months were an adventure of appointment-juggling, full of surprises. In March, a second surgery. In April, he was diagnosed with hypertonia (high muscle tone) and developmental delay. Wonderboy’s physical therapy became our new family pastime. His sisters are a big help with the homework.
An MRI in June showed specific types of brain abnormality but offered little insight as to what to expect in terms of future mobility. PT has worked wonders, but there is a long way to go. He’s a tough little guy, and his physical therapist is a gem–a gentle, patient soul with a wonderfully warm manner. Wonderboy loves her even if he doesn’t always love what she makes him do.
Just about the time we were getting a handle on the PT, we began to be concerned about his hearing. More tests, a surgery to insert tubes, yet more tests—and finally confirmation of what we already knew: he is hard of hearing.
Now that he has the hearing aids, he can hear everything we say to him. We’re teaching him how to make sense of it. Sign language helps, so we’ve all immersed ourselves in the study of ASL (American Sign Language) and I’m not sure which one of us loves it more. My shy Rose blooms when her hands can do the talking—she loves being able to tell me something without opening her mouth. Beanie is learning to fingerspell before she can read. And Jane is burning with an insatiable need to know WHY each specific sign is what it is.
The first time Wonderboy signed “Mommy” I thought my heart would burst. Now he says “Maaaa” and that’s just as magical. He enchants friends and neighbors by studying their faces when they speak, those big eyes serious and fascinated, a little smile quirking the corner of his mouth. And I think there can be no audience in the world more satisfying to sing to than a hard-of-hearing baby. His spellbound gaze says I’m the wonder, as if I’ve somehow invented this marvelous thing called music all by myself.
I think the real wonder is how God works it out: the child with hearing loss teaches me how to listen; the one who can’t talk yet has the most profound things to say.
Related posts:
• Signing Time DVDs
• More about Signing Time
• Rilla Signs
• Unsolicited Signing Time Commercial
• Signing with Babies, My Favorite Topic