Archive for the ‘Wonderboy’ Category
My speech-delayed son is in loooove with his voice. Words! When you use them, people react! Things happen! Words are MAGIC! For example, when it is one in the morning and you are feeling lonely, you can say MOM MOM MOM MOM MOM MOM and your mother will come and get you out of your bed and bring you into hers. She will do this because there is already one baby sleeping in her bed and she doesn’t mind being bookended by another.
But then it is possible she will (foolish optimist that she is) attempt to go back to sleep. This situation calls for more words. HI HI HI HI HI MOM is effective, as is BABY SLEEPING! (Even if you pronounce this as "Gaygee ee-ee," she will know what you mean.) This phrase achieves highly satisfactory results. She will instantly be wide awake and will pay lots of attention to you, rubbing your back and possibly murmuring hush sounds to you which you can’t actually hear because you don’t wear your hearing aids in bed.
Another aspect of Word Magic is the power to make people laugh. This is an extremely intoxicating experience and you will be eager to revisit it as often as possible. CLEAN UP, you will shout at your sisters, and this will make them howl. It will also cause them to leap into action, and rooms will become spotless before your mother’s very eyes. This garners the bonus payout of much beaming and hand-clapping from all the women in your life. You will feel like king of the world and probably won’t realize that you are in actuality the court jester.
Sometimes, however, your magical words will cause laughter where laughter seems contraindicated. You don’t see what is funny about asking for your BRUSHTEETH. A fellow needs to brush his teeth, after all, and what’s he supposed to use, his BRUSHHAIR? And when getting dressed in the morning, you fail to see what is so doggone amusing about requesting your HAM. I mean, you’ve put on your shirt, and the next logical step is to put on your ham, right? Are you supposed to go around barelegged all day?
Women. Sometimes they just don’t make any sense.
August 31, 2006 @ 9:04 am | Filed under:
Wonderboy I do most of my posting about Wonderboy over at The Lilting House these days, since special-needs kids are one of my topics there. But this post* is a follow-up to the Quiet Joy piece I wrote here a while back, so I thought I’d link to it for those of you who may not make it over to the ClubMom site as often.
*Broken link fixed—thanks, Karen.
A while back, when I was pregnant with Rilla, I wrote about lying next to Wonderboy at naptime and watching him chatter in sign language before he drifted off to sleep. "I don’t think I’ve ever in my life seen anything sweeter," I wrote, "than a toddler signing ‘love.’ "
Well, I was wrong. Because what that boy is doing now is even sweeter still. He is teaching his baby sister to sign. He’ll touch her forehead with his thumb, fingers pointing up: Daddy. Same sign on her chin: Mommy. He strokes her cheek in our special name-sign for Rose, then takes her through the rest of the family. Jane, Beanie, baby.
He forgets to name himself. He’s too busy taking her chubby hands in his and trying to get her to cross her arms over her chest. She belly-laughs, beaming at him. She may not be able to sign it, but she knows he is teaching her love.
I’m going to throw this topic open for discussion, because I am certainly no expert here. I am learning as I go. (Which is pretty much the definition of parenting.) I know from talking to other mothers of kids with special needs or medical issues that it can be really challenging (understatement) to figure out what behaviors are caused by the child’s issues, and what has more to with age or temperament. Of course these things are never black and white; there is usually a variety of reasons for why a child is doing something you’d rather he didn’t do. Deciding how to address the problem is the big challenge.
I remember an incident from when Jane was two, during one of her prolonged hospital stays for chemo. Most of the time she was astonishingly cooperative during treatment, but on this day she was emphatically not happy. "Not happy" as in shrieking her lungs out in the middle of the hall. In a flash we were surrounded by about seventeen medical personnel wearing expressions of worry and alarm. Was she seizing? Had she pulled out her line? I remember kneeling beside Jane, looking up at the army of doctors and nurses, explaining to them that no, it’s just that she’s two.
What had happened was that I (gasp) said no to her. No, you can’t sprint down the hall when you’re attached to an i.v. pole. She was two years old and in the mood to sprint, and her tantrum had nothing to do with her illness at all. It could just as well have happened in a grocery store or at church. She just happened to be spending her toddlerhood in a hospital, and when toddler ‘tude kicked in, it happened in a place where the staff was trained to assume screaming and flailing of limbs indicated a medical emergency.
I can see how they made that mistake. These things are not always clear cut. My Wonderboy is a sweet, sweet child. But he’s also, shall we say, a bit rigid. And determined. That determination serves him well; after all, it’s what got him off the floor and onto the furniture. But he is two and a half, and his goals are not always quite as satisfactory, from my point of view, as, say, walking and climbing. And often I find myself navigating difficult and uncharted waters. If he’s doing something inappropriate, how much has to do with his issues (I sort of hate that word) and how much with his age, or his mood, or circumstance? That’s a rhetorical question, you understand. No one can answer it for me. The answer changes every day, with every situation.
But the challenge is consistent, and I think it’s a challenge faced by a lot of parents. Wonderboy grows daily more fluent in two languages: English and ASL. But there are many times when he refuses to use either one. He’ll sit in his chair and reach toward the fridge making totally obnoxious fussing sounds. This is not OK, I tell him. Use your words. Do you want some yogurt? I have my strategies for retraining this inappropriate behavior: I sign his choices (he can’t hear me when he’s fussing); I refuse to give him anything if he fusses for it. ("Inappropriate behavior gets you the opposite of what you want" is one of my basic principles of child-rearing.) Fussing that escalates to a tantrum gets him plopped in the playpen penalty box. (At least, it did until I packed the playpen away for house-showing. Now I use his bed.)
But during such lovely little episodes, of course I’m wondering how much of his behavior is bad habit in need of retraining, and how much is the big old frustrating communication gap that goes along with hearing loss, which will be less of a hurdle as he gets older.
I’m just using that scenario as an example of the kind of thing I mean. Before he was able to stand up, he’d sit and cry or shriek for someone to get him. Of course I felt sorry for him, stuck there, dependent on someone else for mobility; I couldn’t leave him crying on the floor. But neither could I allow him to think the way you get what you want is to scream for it. I had fears of raising an imperious, obnoxious little tyrant who thought his physical limitations gave him carte blanche to order people around, like Colin in The Secret Garden.
So day after day—hour after hour, it sometimes seemed—I worked with him, insisting that he sign "help" before I’d get him up. Sometimes I felt so mean. Sometimes it went on too long. Sometimes we had to BE somewhere, or one of his sisters needed me, and I had to just grab him and go—which, of course, is just the kind of inconsistency that delays the formation of the good habit. But little by little, we got there. He learned to ask for help. Nicely.
And I know he’ll learn to ask for yogurt, nicely. It just takes so much diligence on my part, and that can be exhausting—the need to always be focused, to be thinking about how I react rather than simply reacting on autopilot.
As I said, I know I’m far from the only mom in this boat. So I figured I’d open the topic to you all and see if it’s a subject you’re interested in pursuing. I’m not all homeschooling and fun learning stuff here; I’m special-needs kids too. (And also: large families. And: big scary cross-country moves. But I digress.) I would love to hear your stories and insights about raising kids who pose behavioral challenges on top of the regular challenge of being, you know, two years old. (Or three, or four, or five…)
Exactly two months ago, you shared our joy over this: a two-and-a-half year old boy who was finally able to stand up by himself.
Today we are celebrating THIS. That’s a long way to come in a pretty short time. Climbing! The furniture! It’s hard to believe he was the baby who had to wear splints on his legs to straighten them out.
Hundreds of hours of physical therapy? Priceless.
Yesterday morning, while I was stumbling around in my pre-tea haze, Wonderboy asked for a Signing Time dvd. He watched for a few minutes and then shouted, "MOM! Nee hee ai!"
Me: Um, what?
Boy (pointing at ear): NEE hee ai, Mom. Hee ai!
His tone was loud and patient, the way people in comedies shout at foreigners as if they are hard of hearing instead of non-English-speaking. Oh, right. Hard of hearing. The light bulb went off.
Me: You need your hearing aids?
Boy: (laughs)
He’s always been astonishingly tolerant of his hearing aids, but having him recognize that he’d enjoy his show more with them in was a very cool moment indeed.
Wonderboy got his new ear molds last week, but he came home with only one hearing aid. The FM attachment on the other one wasn’t working right and the whole thing had to be sent in for repair. His FM system is a super-nifty piece of technology: a little silver doohickey (to use the technical term) attaches to the bottom of each hearing aid and picks up whatever is spoken into the little clip-on microphone that is the other half of the system. See, if I’m wearing the mic, my voice gets piped directly into Wonderboy’s hearing aid, louder and clearer than all the other sounds the aid is amplifying.
Hard-of-hearing kids in school use FM systems to help the teacher’s voice reach their ears above all the ambient noise. Here at home, we use Wonderboy’s FM to help him hear the soft speech sounds that otherwise elude him. The mic has a decent range, and it is extremely amusing to switch his hearing aids to FM and have someone in another room start talking into the microphone. The boy’s face will light up and he’ll trot off to locate the speaker, pouncing with a triumphant yell when he is successful in his quest.
"AIR!" he’ll shout, which of course means "Aha, THERE you are!" (As if I needed to explain that.)
But right now he’s only got the one aid. And when Scott switches on the FM and sneaks to the next room to murmur "I’m gonna get you…" into the microphone, Wonderboy is like a dog chasing his tail. He pivots to the right, because that’s the ear with the hearing aid in it. Daddy isn’t there, so the boy just keeps on turning. At about 180 degrees he starts to laugh, knowing the joke is on him again, but he can’t help it, he just has to keep on looking right and right and right.
Scott will be peeking from the other room, and the whirling boy will be too much for him. When he laughs his booming laugh, he gives himself away. Wonderboy’s spin is arrested and he books through the door to attack his daddy. Air he goes.
Wonderboy has speech therapy today. It’s been a while (we’ve been on a break since Rilla was born in April) and I’m eager to hear what his therapist has to say. He’s made big strides in both speech and sign since the last time she saw him. Between this and his newfound ability to get up, he’s had quite an amazing couple of months.
Every now and then, though, I step back from my up-close-and-elated view of his accomplishments and recognize that as far as he has come, he still has a long way to go. When I wrote that post about the speech banana last week, I ended the first draft with “The speech banana? It doesn’t scare me” and later amended that to “The speech banana? We’ll get there one way or the other.” Even the revised version was nagging at me as not being quite what I meant, and I realized that it’s because of the difference between speech and comprehension, between expressive and receptive language skills.
In that post, in those sentences, I was talking about receptive language, what he hears, sees, and understands. His receptive language skills are excellent, given the degree of his hearing loss. He understands a great deal of what we say. Sort of. Yesterday I was unloading the dishwasher and I took out a pot.
“Pot!” I said, showing him.
“Ah!” he agreed—signing “hot.”
Um. Not quite, but I like that he was repeating what he thought he’d heard. He can’t hear the P, see, and I hadn’t signed along with my speech that time. He really needs the visual cues for comprehension.
Despite hitches like this, he really is doing beautifully as far as receptive language goes, gaining comprehension at a lightning rate. And that’s what I was thinking of when I said the speech banana, and where his range of hearing falls on the chart, doesn’t scare me. He may not hear all the sounds, even with hearing aids, but if he’s understanding as much as he is at age two, I really believe he’ll have total comprehension when he’s older.
His expressive language ability, however: that’s another ball of wax. Here again, I’m not worried about his being eventually able to express his thoughts in one way or another. He is already using a combination of sign and speech to communicate, and thanks to the gorgeous marvel that is ASL, he can tell me most of what a two-year-old wants to say. And then with verbal speech, he seems to be smitten. He loves to talk, spends much of the day practicing words. Without his signs to cue me, I probably wouldn’t be able to translate them: to know that “ah ah ee ah” is caterpillar and “eh-ah” is elephant.
“Watermelon,” I’ll say, signing it also.
“Ah ah eng!” he’ll shout triumphantly, believing that he is echoing me completely. His hand comes to his mouth, three fingers pointing up like a W, tapping his chin—”water”—and then he pokes the back of his hand with a finger, like tapping a melon. Watermelon. Ah-ah-eng. I gotcha.
So, yes, when it comes to his slow crawl toward verbal speech I am comfortable, but not complacent. I think we’ve got a lot of work ahead of us if he is going to manage some of these consonants that elude his ears. We play babbling games; I press his lips together and say “buh buh buh,” trying to help him catch the B. He laughs, touches my mouth, says, “Uh uh uh.” So far, that B is nowhere on his radar.
But oh how he loves to experiment with talking! His joy is infectious; you can’t help but grin.
“Amp Ha ain ow-hie!” he tells me, his flying fingers clueing me in to his meaning. Grandpa train outside. Yes, buddy, you and Grandpa saw a train on your walk, didn’t you? Two months ago. That ain made a big impression on this little boy.
Big impression on my heart, too.
Related posts:
• Signing Time DVDs
• More about Signing Time
• Rilla Signs
• Unsolicited Signing Time Commercial
• Signing with Babies, My Favorite Topic
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.
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.
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.)
Related Tags: special needs children, hypertonia, high muscle tone, early intervention, physical therapy, special needs
