Category Archives: All About Wonderboy

All About Wonderboy, Family Adventures, Hearing Loss

Sometimes I Can Be Hard-of-Learning

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Today was the Solemnity of the Assumption, a holy day for us. We
went to the 9 a.m. Mass at the chapel of a local nursing home run by
Carmelite sisters. The kids and I sat in the last row, but the boy grew
too noisy, and I had to take the two little ones out to the lobby. By
"too noisy" I mean he’s in this phase where his favorite favorite thing
is to ruff-ruff like a puppy. There we were in this tiny little chapel
full of nuns and elderly people, and my son was barking. During the
homily. Embarrassing much? You could say that.

So I spent the rest of Mass in the lobby, my cheeks burning, trying
to keep the barking to a whisper. Trouble is, Wonderboy can’t HEAR a
whisper. This has a somewhat limiting effect upon his desire to
vocalize sotto voce. I was kicking myself for not getting the
crew up and out early enough to make the 8 a.m. Mass at our own parish,
which has a soundproofed cry room.

When Mass was over, the priest, an elderly fellow himself, walked
straight through the chapel doors to the lobby where I was standing. He
smiled at us, shook my hand, admired the beautiful children. I
apologized for Wonderboy’s noise.

The priest held a hand to his ear.

"Eh? What’s that?" he shouted, in the unmistakable tones of the hard-of-hearing.

It is impossible for me to convey the deliciousness of that moment.
In an instant, my mortification was gone. Of course I still wished that
Wonderboy had kept quiet (he’s been so good during Sunday Mass the last
couple of months—and we sit right near the front of the church, not in
the cry room, which is a rowdy, unpleasant place on a Sunday), but I
realized once again what experience has taught me so many times. We’re
never as great a nuisance as I think we are in situations like this.
Hardly ever is anyone judging us as sternly as I am, behind my flaming
cheeks.

"What’s that you said?" the priest repeated.

I raised my voice, as if I were talking to my semi-deaf son. "I’M SORRY MY LITTLE BOY WAS SO NOISY DURING MASS!"

The priest gave a hearty laugh. "It’s not like I would notice!"

He laid a hand on Wonderboy’s head, gnarled fingers patting the white-blond hair above the blue hearing aids.

"My brother had fourteen children," he said. "Fourteen nieces and nephews, I had. Now those children could make some noise!"

The congregation began to file out: white-haired ladies with
walkers, old men leaning on canes, beaming Carmelite sisters in their
brown habits—every one of them stopping to smile at the children,
ruffle a head of hair, shake a hand. There was no hint of reproof or
censure in anyone’s manner: only warm smiles, friendly greetings, huge
peals of laughter when Wonderboy, God bless him, ruff-ruffed at them.
These good souls seemed universally delighted to see—and yes, even
hear—youngsters in the aisles of their nursing home which, perhaps,
come to think of it, is sometimes all too quiet.

All About Wonderboy, Hearing Loss, Special Needs Children, Wonderboy

The Speech Banana

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This Lilting House post gets more search-engine hits than anything else I’ve written. Every week I am amazed by how many people land on my blog via a search for "speech banana" and related terms. I thought it might be helpful if I reposted it here. This post was written in June of 2006. More recent posts on related subjects can be found in the hearing loss archive, including a photo essay about getting ear molds for hearing aids and advice regarding the newborn hearing screen.

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."

Speechbanana
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.

Boy1
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.

All About Wonderboy, Special Needs Kids, Wonderboy

Get Up and Go (With Video! Woohoo!)

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Wonderboy is a bit of an enigma. So far I have counted six specialists who’ve used some version of the phrase, "We’ve never seen another kid quite like him." Neurosurgeon, surgeon, neurologist, physical therapist, developmental pediatrician, and general practitioner. Possibly two general practitioners. We have come to accept that there is no name or label for what sets our boy apart, no previously mapped-out territory. He is truly, completely, uniquely one of a kind.

Pants
His physical abnormalities—and that is not a word that bothers me; "normal" refers simply to qualities shared by the majority of people, and there can be no denying that there are many things about Wonderboy that are NOT like most people—his abnormalities are not genetic. His chromosomes, the geneticists tell us, are normal. No extras, none missing, not even any little pieces of a chromosome missing: the big fancy tests they ran confirmed this.

No, in his case, it seems something went slightly awry during the first few weeks he was developing in utero. All of his physical abnormalities are what’s called "midline issues." Run a line down the middle of his body and you’re pointing at the places where he isn’t put together like your average Joe. Skull, brain, inner ear, heart, abdomen, tail. Um, yes, tail. He was born with an unusually long and protruding tailbone. It stuck out beyond the end of his bottom a little, a hard little bump that made it painful for him to sit on hard surfaces. Last summer it had to be surgically removed to prevent the skin over the coccyx from breaking down and getting infected. It took us months to get used to not seeing it when we changed his diaper. But he can sit comfortably now, and that’s a great thing.

He has very high muscle tone, a neurological issue that made it hard for him to stretch out his arms and legs to their full range when he was a baby. He started physical therapy at five months of age, and after hours and hours of stretching and exercising and basically sort of kneading him like Silly Putty (um, really stiff inelastic Silly Putty that doesn’t have any of the pliable properties that pretty much defines Silly Putty, so that’s a stupid simile to have chosen, but there you go), he has gradually gained the flexibility necessary for things like walking. He walks! Really really well! Time was, we weren’t sure that was a given. Now here he is two and a half, trying to run.

But. One of the most "we’ve never seen anything like this" things about Wonderboy is that he has these  bizarre gaps in his development. I guess he didn’t get his copy of "What to Expect the First Two Years" in the womb so he doesn’t know in what order things are supposed to happen. Case in point: he’s been walking for over a year, but he couldn’t stand up until last month. If he was lying down, he couldn’t get up into a sit, a crawl, or a stand. Sitting? Couldn’t get onto his feet. Or hands and knees. Could only just sit there.

Stands_1
You could pick him up and set him on his feet and he’d take off like a little wind-up toy. But if he was just lying on the bed or the floor, he was stuck there. And for a kid who can’t hear well, who relies on visual contact for communication and happiness, being stuck was scary. So he never sat down. All day long. Except when one of us would get on the floor with him to play or do PT, he just trucked around on those knobby little legs of his.

And then, last month, the miracle happened. He—just—did—it. All the months of physical therapy paid off, all the hours we’ve spent, the big sprawling bunch of us, taking turns having floor time with him, making up games that stretched his tight muscles and worked some strength into those bony little arms.

This unbelievable victory occurred about three days after a PT session. We couldn’t wait to show his physical therapist, the wonderful Molly. But it happened that for one reason and another, it was over a month before we had another session with Molly. By then Wonderboy had spent hours practicing his new skill with immense delight and to much applause from admiring sisters. He spent a couple of weeks with his forehead carpet-burned from using it to balance as he maneuvered himself to his feet. Let me tell you, this getting-up business is HARD WORK. I bet you take it for granted. I know I did. Watching Wonderboy struggle, I have realized it requires an astonishing amount of muscular finesse and strength. Now I feel like a powerhouse every time I stand up from my chair. Did you see that! Dozens of muscles working in sophisticated interplay, and I didn’t even break a sweat!

So by the time Molly got here last week, Wonderboy was primed. Scott put him on his belly on the floor, and the boy GOT RIGHT UP. Okay, it still takes him about thirty seconds and some forehead-scraping. But he can do it. Every time. Molly was blown away.

And then she blew us away, because after watching the boy demonstrate his fabulous new skill some fifteen or twenty times, she announced that Her Work Here Was Finished. For now, at least. To our surprise and joy, Wonderboy has graduated from physical therapy. You may commence the trumpet fanfare because this is HUGE news.

He may need PT again someday to help develop other motor skills. But for now—and with this boy, NOW is where we are, day by day, moment by gorgeous, miraculous moment—for now he doesn’t need the extra help.

And that is a really big deal.

Jane caught him on tape this morning, getting up onto his feet. It’s our little thirty second tribute to the marvels of Early Intervention, and our big giant thank you to Molly.

Click to watch the video. (Sorry, folks, I didn’t realize it was auto-loading for some of you! Thanks for the heads-up, Daryl.)

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All About Wonderboy

Big Huge Exciting News

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Wonderboy.

Stood Up.

All. By. Himself.

If you have not been following Wonderboy’s adventures, you might be wondering what the big deal is about that. He turned two in December, can walk and climb stairs, and enjoys trying to jump. But his particular developmental delays (a combination of several factors including high muscle tone, poor motor planning, hearing loss, and other issues) have caused him to have peculiar gaps in his gross motor skills. He cannot sit up from a lying-down position (neither belly nor back), and until today, he had never managed to stand up without assistance.

But today, during one of their typical roughhouse/practice sessions, Scott put the Boy on his belly, and to our delight and his own jubilation, Wonderboy pushed up onto his knees, and then slowly, with great effort, continued pushing until he was on his feet, hands still touching the floor. He rocked backward a bit, found his balance, shifted his hands one at a time to his knees—and straightened up. And broke into a thousand-watt grin. And cheered and laughed and stomped his feet.

And threw himself for joy into his daddy’s arms.

Hug

All About Wonderboy, Family Adventures, Who We Are

The Quiet Joy

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Every noon and every night I lie down with Wonderboy to cuddle him while he falls asleep. I read him a story, turn out the light, and pretend to go to sleep myself. (Okay, most of the time I’m pretending…) My two-year-old son, naturally, is not immediately inclined to start snoring. He’d much rather play.

Because he cannot get up by himself, there’s no problem keeping him in bed. He simply wants to talk. He babbles away in both verbal speech and sign language, sometimes singing (with vigorous hand motions accompanied by rhythmic grunts), sometimes reliving the book we just read by running through all his favorite animal sounds, and finally, in a last-ditch effort to entice mommy into conversation, by applying heart-melting tactics: “Love Mommy! Love Mommy!” he’ll sign, over and over, throwing in a couple of his best spoken words—Hi! Hi! Hi!—for good measure.

I tell you what, this is mighty hard to resist. His head is snuggled against my arm; he doesn’t know I’m watching through slitted eyes, just dying to smother him with kisses. I don’t think I’ve ever in my life seen anything sweeter than a toddler signing “love.”

Finally he’ll drift off to sleep. I lie there, listening to his breathing, watching his hands twitch occasionally as he talks in his sleep. By this time, his unborn sister is usually wide awake, and I often wonder how he can sleep through the pummeling she gives his back. I suppose my belly diminishes the force of impact somewhat.

I think about him, and I think about this baby who will be joining us in the outside world before long. Eleven years ago, when I was pregnant with Jane and people would ask, “Are you hoping for a boy or a girl?” I’d reply with the standard, “I don’t care, as long as the baby is healthy.” This wasn’t exactly true: secretly I was hoping for a girl.

Both hopes came true. I delivered a healthy baby girl, and I was so happy, so grateful. This little girl didn’t remain healthy, though. By the time she was Wonderboy’s age, she was fighting for her life. The battle against leukemia was grueling and scary. When, nine months after her diagnosis, Scott and I learned we were expecting another child, I uttered that “I don’t care what it is, as long as it’s healthy” line with even greater fervency.

And then, two babies later (first our Rose, then bouncing Beanie), I gave birth to a little boy, and he wasn’t healthy. He was, to put it bluntly, rather a mess. Thus began the next chapter of the lesson that started during the long months of Jane’s illness. Being entrusted with the care of a child who is not physically perfect can be yes, painful and scary, but also one of the sweetest, most rewarding experiences a person can have. Do you know how much they teach us, these small, brave, persevering persons? I hadn’t begun to grasp the meaning of that whole “Count it all joy” business in the book of James until I met these children. Now I get it, or at least I get a glimpse of it. There is immeasurable joy not just in the overcoming of trial, but even—I know it sounds implausible, but it’s true—in the trial itself.

Patience, cheerfulness, courage, determination, persistence—these virtues which require such effort from me are a matter of course for this boy of mine. And so it was for his oldest sister, when she was in the thick of her ordeal. If we learn by example, then I have surely learned a great deal from my children.

What riches Wonderboy’s “imperfections” have brought to our lives! A new language, yes; I’ve written about that so often before. But more than that. Watch him work to achieve the magical “all fall down” at the end of Ring-around-the-rosy—see how intently he studies his sisters and with what careful perseverance he attempts to imitate them. He looks at his legs: hey, I can bend them now! Used to be they wouldn’t cooperate with his desires. Grinning, he crouches, he squats, he teeters—he plops onto his bottom! He’s done it! The cheers ring out; the girls’ delight is genuine and very loud. His face, oh his face—now I know what real joy is.

I have heard this truth beautifully articulated by others; this mother knows it, and this one. The book Expecting Adam is one giant love poem on the subject. These are not women who sugarcoat or downplay the challenges; but their writing overflows with quiet joy.

Yesterday at naptime, Wonderboy hung in a little longer before sleep overtook him. After running through all the usual mommy-wooing tactics, he apparently decided he’d have better luck petitioning God. Over his head I watched his hands flash through a litany of prayers: the Sign of the Cross, then the names of all the people we God-bless every night, starting with his daddy and running right on through every member of the family to “the poor, the sick, the needy,” and finally: the Pope. He just about got me then; the temptation to just eat him up (and therefore demolish any possibility of a nap) was overpowering.

Instead I lay there doing some praying of my own. The baby inside me kicked and kicked; I felt her foot against her brother’s back and realized how much my answer to that old question has changed over the years. Of course I hope, for her sake, that she will be a healthy child. No mother hopes for her children to have to walk a difficult road; it is our nature to want their paths to be as pleasant as possible. But no longer could I say and mean (even if I didn’t know the gender of the child): “I don’t care what it is as long as it’s healthy,” with its tacit suggestion that an unhealthy baby means only tragedy and sorrow. If that wish had come true last time, I wouldn’t have my Wonderboy. If this child—or any of my others, for that matter, for Jane is proof that being “born healthy” is no guarantee of perpetual good health—should encounter serious medical difficulties, I know now that no matter how hard the road may be, even if it leads through the depths of Moria, it will carry us through Lothlorien, too. And even in Moria there can be humor and camaraderie and courage and hope among the band of travelers—especially the smallest ones.

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Advent & Christmas, All About Wonderboy, Family Adventures

Celebrating My Boys

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2men
Today is Wonderboy’s 2nd birthday. In his honor, I shall post a link to everything I’ve blogged about him: All About Wonderboy. (And yes, for my own amusement, I sometimes dress my son like his father. What can I say? It cracks me up. And simultaneously melts me.)

It’s also the birthday of my fabulous and incomparible husband, Scott. The day I met him I went back to my dorm room and raved to my suitemates about the guy who’d been cast as my leading man in the spring play: brilliant, funny, devastatingly good-looking (actually I think what I said was “wicked cute”).

Suitemate: Scott Peterson? I had a class with that guy. He’s really cocky and sarcastic.

Me, dreamily: Yeah, I knooooowwwww…..

One snarky one-liner, and I was his for life.

In his honor, here’s a link to some stuff he’s written about family. (Works best if you scroll to the bottom and read your way up.) He’s way funnier than I am. I am particularly fond of this piece. And this one. Come to think of it, this piece explains just why it is the picture above melts me.

It’s their birthday, but I’m the one who gets the best present. I get to hang out with the two of them every day.

Happy Birthday, guys.

082340403x101_aa_scmzzzzzzz_Today is also the feast day of another guy I happen to be fond of: St. Juan Diego. Here’s our favorite book about him: The Lady of Guadalupe by (guess who) Tomie de Paola. Today’s a good day to rustle up a copy: the feast of Our Lady of Guadalupe is just around the corner on December 12th.

All About Wonderboy

Stranger Than Fiction

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Wonderboy has been dominating this blog lately. I realize he doesn’t exactly fit the mostly-literary theme I’ve got going here, but I can’t help it. Who can pass up material this rich?

This kid of mine, this kid of mine. What will he come up with next?

So Tuesday, as you know, was his surgery to repair a hernia (again) and remove his sticky-out tailbone that was making it hard for him to sit, poor guy, and was posing a risk of skin infection to boot. As I wrote in my last entry, the procedures went swimmingly and we got him home in record time. (Scott has a more detailed recap on his blog. But be warned: his language in this one is not for the kiddies. Don’t blame him. It’s the anesthesia.)

Yesterday morning Wonderboy woke up, turned toward me in bed, and smiled. “You seem to be feeling better,” I said. “Hey, buddy, maybe today will be a little more mellow.”

That’s when I saw the blood oozing out of his ear.

Just a little. A spot of red on the sheet, a clump of dried blood in the ear, and when I wiped that out, a bit of red oozing out of the canal. Had he just scratched himself? Or was it something to do with his ear tube? I couldn’t tell.

I called the doctor’s office and left a message for the wonderful new doc who is covering for our other wonderful family doc while the latter is on vacation this week. I love these folks. We’ve seen every doctor in the practice—numerous times—and they’re all great. Sharp, good communicators, efficient, cooperative. Plus their office is only three minutes from my front door. I can never move out of this house.

Anyway, I left a message for Dr. L. But I wasn’t exactly chomping at the bit for her call, because what was I going to do? Put Wonderboy in the car on his sore bottom? Even for a three-minute ride, that’d be torture. Mainly I wanted to see what the doc thought about putting in his hearing aid on that side. Not a good idea, I assumed.

All the rest of yesterday and all this morning, there was no new blood. Just a scratch, I figured. At this point in our parenting career, with the track record our kids have got, optimism is probably nothing more than gussied-up stubbornness, but what the heck. It works for me.

This afternoon when there was still no more bleeding, I decided to try putting in his hearing aid. Took it back out and—oh yes—there was new blood on the ear mold. That must have been one heck of a fingernail, kid, thought I (stubbornly).

Called the doc again. She was just getting off work for the day and asked if I wanted to bring him in tomorrow. “Only if you really think you need to see him,” I said. “I hate to sit him in the carseat so soon, you know?”

And then, in a turn of events more surprising than anything Wonderboy has thrown our way, she said, “Tell you what. I’ll stop by your house on my way home.”

Yes, folks, after all these years: our first house call. This is a momentous day!

She swings by with her trusty otoscope. Looks in his ear. Oh dear. Looks like the tube is not where it belongs. “Embedded” is the word she used. This is not good. This is not a fingernail scratch. This is, maybe, possibly, cause for another surgical procedure. WELL, YEAH, MAYBE NOT, insists the Stubborn Optimist. Scott speculates about the efficacy of a pair of tweezers.

It means, at the least, a trip to the ENT—whose office is forty minutes away. Wonderboy ain’t going for that ride anytime soon. We all decide that (barring more oozing from the ear) this little problem can wait until his rear end is sit-on-able.

“I’m sorry to be the bearer of more odd news,” says the doctor ruefully. Odd news: this is the perfect phrase for our boy. He is Odd News personified. Which I guess makes me the Bearer of Odd News, not Dr. L.

So that’s where we are. But, you know, for us it really WAS a pretty mellow day.