Archive for the ‘Hearing Loss’ Category
Did you know that ears are one of the few body parts that never stop growing? I think noses might be the other. Besides hair and fingernails, obviously.
When you wear behind-the-ear hearing aids, the hearing aids last for years, but the ear molds—the little custom-made silicone or acrylic doohickeys that fits into your ear—need replacing every so often. As your ear grows, the ear mold ceases to fit, and first you get a feedback problem, and then eventually the mold just won’t stay in the ear at all.
So you go to the audiologist’s office, and she makes new impressions of your ears with a quick-hardening goo. You ship the impressions off to a lab, and in a couple of weeks you’ll have your brand new ear molds.
If you are three years old, you may find this process somewhat entertaining, if mildly uncomfortable. If you are six years old and the uncomfortable part is happening to your brother, not to you, you will consider it a ripping good time. Beanie pronounced it “huge fun.”
I get a large number of hits every day from hearing-aid-related searches, including variations of “toddler ear molds,” so I thought it might be helpful if I posted a walk-through of the process. Besides, pictures are always fun.
First the audiologist checks your ears, making sure there isn’t too much wax in there—that might mess up the shape of the impression. Then she carefully inserts a little foam stopper to make sure none of the impression goo goes too far up the ear canal.
Then she pops the two kinds of goo out of their little bubble wrappers, and she mixes them together into a pliable substance that can be squeezed out of a syringe but will harden within a few minutes. Beanie, supervising, thought this mixing process looked pretty nifty and is now wondering how to work “become an audiologist” into her plan to be a scuba-diver with ten children.
The audiologist scoops the goo into the syringe and carefully squeezes it into the ear, sort of like making an icing rose on a birthday cake. Now you have to sit and wait. You can’t poke at the goo, much as you might wish to. Nor can you pull on the string that is connected to the little foam stopper inside your ear canal. Patience, grasshopper.
Meanwhile, the audiologist squirts the leftover goo out of the syringe. This, I am told, is THE BEST PART.
Let’s do the other ear while we’re waiting. It’s okay to drool.
Finished! Time to pull out the impression. No need to be suspicious; it won’t bite.
The impressions go into a box and are dispatched to the Lab, that mysterious place where ear molds are born.
Now comes the fun part! (The other fun part, says Beanie.) What color ear molds do you want? The sky’s the limit. No, Bean, your brother isn’t getting the sparkles.
What color did he get? You’ll have to wait two weeks to find out.
…that the thing about having another baby when you have a hard-of-hearing toddler is that at least once a month you will catch yourself trying to put the toddler’s hearing aids into the baby’s ear.
Whoops.
(Amy, consider yourself warned!)
Today my ClubMom topics, homeschooling and special-needs kids, come together. I’m taking Wonderboy to our local public school—yes! I said public school!—for a meeting and evaluation with the special education office, a speech therapist, and the district audiologist. Even though we plan to home-educate this child like all our others, we can and will avail ourselves of the special services made available to all children according to federal law.
From birth to age three, qualifying children can receive services such as speech therapy, physical therapy, and occupational therapy through Early Intervention programs. Wonderboy received all of the above, in our home, beginning at about four months of age. (For PT & OT, that is. When his hearing loss was diagnosed months later, we added speech & hearing therapies.) The first step in the Early Intervention process is an evaluation that leads to the writing of a big ole document called an IFSP—an Individualized Family Service Plan.
At age three, children age out of Early Intervention and from that point on, the special services they qualify for come through the local public school district. The IFSP gives way to a new document, the IEP, or Individualized Education Plan. The IEP spells out what services the child requires and how the district is to go about answering the need. The whole IEP process can be tricky to navigate, or so I’ve picked up from several friends (public-schoolers, not homeschoolers) whose older children were diagnosed with learning disabilities or autism spectrum disorders. Those parents had to be sharp-witted advocates for their children to make sure that all their classroom needs were being met.
For us, it’s a bit simpler. Wonderboy "graduated" from PT before we left Virginia (amazing, amazing! miracle boy!), but he will almost certainly continue to need some speech therapy during the next several years. His verbal language skills are growing by leaps and bounds—really, it’s so exciting; he’s using long sentences now, like when I hollered "Ladies! Dinner’s ready in five minutes!" and he BOOKED down the hall shouting, "GIRLS! Time to eat! Dinner!" Excellent progress. But of course since he still lacks most consonants, it sounded more like "GUH! I oo ee! Ginnah!"
I want to make sure he has every advantage. I know his verbal skills will continue to improve naturally as he gets older. But he may need extra help to master certain sounds. And so after we got settled in here, I called the district spec ed office to see what kind of speech program they have. After a lot of faxing (his IFSP and audiology reports) and phone calls—just the normal process!—we set up an evaluation with the aforementioned folks.
Today we’ll be meeting to determine what goes into his IEP. I’m going to blog the process, because I haven’t found too much else out there about homeschoolers and IEPs. I might hold off on attending the speech therapy sessions until next fall, depending on how today’s eval goes. At Wonderboy’s age (he’ll be three this week!), speech therapy takes place in small parent-child sessions at the school up the road. That sounds great—but I can already see that timing will be tricky. I don’t know that I want to chop up a morning once a week with a jaunt to speech therapy. That’ll monkey with my older kids’ schedule.
But we can figure out the logistics later. Right now, step one: the speech evaluation.
If I earned a wage for all the hours I’ve clocked on my kids’ medical issues, well…I’d be a case manager, not a mother. But I’d also be rich.
I spent this first month in California shoving to the back of my mind a looming dread over the necessity of Finding New Doctors. Oh, how this pains me. We had the most fabulous family practice back in Virginia. Excellent and attentive doctors, compassionate and capable office staff, kind nurses. I loved everyone there, really loved them! Even the lab tech who took my blood. I miss her. I miss the whole gang. Thanks to Wonderboy, we spent so much time in their offices we might as well have kept extra toothbrushes there.
Best of all, oh so marvelous, was Dr. H., whose name I’d like to shout all over the internet but if I did her phone would never stop ringing because SHE MADE HOUSE CALLS. She was the doctor I’d been looking for my whole life, or at least since Jane got sick in 97. Scott and I used to sit in the hospital lamenting the fact that no one in our families had married a doctor, because we could have really really used one in the family, someone to call up and say "Listen, there’s This New Weird Thing going on—do I haaave to haul the kid into the office? Or can this just be a wait and see?"
And then Dr. H. walked into our lives—through our front door!—and I swear I was like a sixth-grader all over again. Hi, you’re so awesome, will you be my best friend?
You want to know how awesome? When I told her I was going to be driving all five kids to California by myself, SHE OFFERED TO FLY WITH ME INSTEAD.
I almost took her up on it, but I was afraid I might accidentally lock her up in a secret room in our house and never never let her go. And she has kids of her own who need her. Humph. So when the time came, I hugged her goodbye and bawled like a baby all over her stethoscope.
And here I am, poring over our new provider directory, cowering at the thought of starting all over with some stranger. It’s like dating again after a bad breakup.
There really ought to be an eHarmony for finding doctors.
One pediatric practice here was highly recommended by several of our new friends. I took a deep breath and made the call, which felt like going on a blind date. Nice voice on the phone says that yes, they are taking new patients but the first available well-child appointments are in January.
I’m fine with that, as long as they’ll see us before then if someone gets sick. I’ve been burned this way before—some docs won’t see you for sick visits unless you’re already a patient. But these folks say, nope, not a problem, if someone gets sick we’ll get you in right away.
So, okay, it’s a start.
BUT. My next question was about finding an audiologist for Wonderboy. He needs new ear molds for his hearing aids about every six months. The current pair was made in late June. Already they’re getting a little loose; he’ll need a new pair in Jan or Feb for sure. And I know how these things work. We’ll have to have the new-patient visit to the audiologist too, with hearing tests, and then they’ll probably have us come back a second time to get the ear molds made. And then it’ll take a few weeks for the new molds to come in. Time, time, it all takes time. I’m an experienced case manager now and I know you have to anticipate the patient’s needs.
So the new pediatrician’s office recommended an audiologist. But THAT office says there’s a two-month wait for new-patient appointments there, too. And also? They can’t make an appointment for Wonderboy without a prescription from his pediatrician.
Me: "A prescription? Do you mean a referral? We have a PPO now; we don’t need specialist referrals as long as they’re in the network. Which you are."
Audiology office: "No, a prescription. For a hearing test."
Ohhhhkay. Right. Because, you know, there’s such a black market for hearing tests. Hearing test abuse, it’s a real problem in urban centers. Especially among three-year-olds. Their mothers are always trying to sneak in preschoolers with perfect hearing just to get a quick buzz off those intoxicating beeps and clicks.
I called the pediatrician’s office back. I told Scott it was a test: how they respond to this situation will give me a good idea of what has the upper hand in their practice: human need or red tape.
The first person I spoke with scored well. When I explained that I can’t wait until January (when our new-patient appointment is scheduled) to get the prescription because then it will be MARCH before the audiologist can see us, and probably APRIL at the earliest before we get new ear molds, and even though Wonderboy doesn’t need new molds now, he will certainly need them before April—when I (gasp, pant) explained all this, the Unnamed Office Person on the phone totally understood the problem. She took all our info and said she’ll have a nurse call back.
So now I’m waiting for round two. Meanwhile, I keep finding myself staring at the phone, with Dr. H’s number on the tips of my fingers. Chill out, I tell myself. They have good doctors in California too. I might call her anyway, because now that she’s officially not our doctor anymore, I am totally latching onto her claiming her as a friend. And if she ever does fly out here for a visit I promise not to make her give us all checkups.
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
This week’s Carnival of Homeschooling is up and About. I haven’t had a chance to explore yet because we are distracted here by a lot of things having to do with ears. Today is New Ear Mold day. (“Ear mold” being almost as icky a phrase as yesterday’s winner, “muscular warts.”) But we loooove ear molds here. Ear molds are the little custom-made pieces of plasticky stuff that connect to Wonderboy’s hearing aids. The molds must fit snugly in the ear, so you need new ones every six months or so. For the rest of your life. Because ears are the only body part (except maybe noses?) that never stop growing. Never, no matter how old you are. That is why elderly gentlemen have such large earlobes.
This means a lifetime of ear-mold-making is in store for my boy. Fortunately, the hearing aids themselves last a good long while. Five years, we hope, because they cost more than the computer I’m writing on. More than two of these computers, in fact. The aids go behind your ear and a little tube snakes over the ear into the ear mold, thus piping sound directly into your ear canal. I ♥ modern technology.
Cool fact about ear molds: they come in different colors. Any color you want! Well, almost. If you want your basic rainbow shades, at least, or a flesh tone. Last time we went for the glow-in-the-dark version. In the light, they’re just a nondescript clear color, so you forget all about their glowing properties until you walk into a dark room with the child and suddenly there are little luminous blobs floating in the air. This makes for great fun at bedtime: holding the aid-wearing toddler, sneak into your other children’s bedroom after lights-out and listen to them yelp at the sight of ectoplasm bobbing across the room several feet. Heh.
This time Scott is the one who got to take the boy for the mold-making. They are there right now. I don’t know what color he’ll choose.* This is somewhat nervewracking. What if he goes for the yellow and it winds up looking like ear wax?
But you’re waiting for the Flesh-Eating Monster update. Well, um, I can’t find him. I assume he is lounging inside the blackened husk of poor Homer’s body, now that he has eaten it hollow. Ohhh, I am hostile toward this thing. I snipped loose the silken threads that held Homer to his twig and moved (shrieking the whole time) him (presumably them, though the Monster was nowhere to be seen, the sneaky bugger) into another container. I can just picture the Creature leaning back in his tragically deceased lair, rubbing his creepy black feet together with glee. Mine, mine, aaalll mine! A rent-free studio apartment with edible walls and a jungle view! Our guess is that he has hidden himself away to do his own pupating thing. We’ve decided (I lost the vote) to keep him around until he transforms, so that we can make a real identification. “Foul Murdering Beast” strikes Jane as unscientific. I also suggested “Grendel” but the children feel that is incompatible with the non-Danish names of the caterpillars. Humph. Hydra, then? Because I just bet if we did cut off his head, he’d sprout a bunch more.
In any case: Herodotus, you are safe! We hope! We cannot guarantee anything because we have not actually seen the Monster since I got that picture of him yesterday. So keep watching your back, little friend. If you see him coming, I recommend a left muscular wart right to the kisser.
*UPDATE: Scott went for what he thought where the glow-in-the-dark ear molds again. But it turns out they’re just clear, no luminous properties. We think. They’ll arrive in two weeks so we’ll know for sure then. Ah well!
Next caterpillar update is here.
Amy asks,
Are you learning alongside your children and just signing as you can, or are you the “expert” in the family? How are you teaching yourself?
Actually, Jane is the family expert. We are all learning together, but she’s ahead of me. My downfall is fingerspelling—I can spell words quickly, but I can’t read fingerspelling to save my life!
We have used (are using) a number of different resources. The Signing Time
DVDs are definitely our family favorites, and all of us—including Wonderboy—have learned dozens of practical, useful, everyday signs from those. A dear friend of mine gave us the four new volumes as a baby gift for Rilla. Such a great present!
I’ve heard there’s now a Signing Time show on PBS—anybody know if that’s correct?
Another video series we have learned from—and I get goosebumps over the fact that we actually went through this program long before Wonderboy was born, just because Jane and I both had an interest in learning ASL—is the Sign with Me
program published by Boys’ Town. This video series (not available on DVD, unfortunately) is aimed at parents of deaf children, with the vocabulary consisting of words frequently used when talking to babies and toddlers. This made it a delight for then-seven-year-old Jane and four-year-old Rose, who enjoyed being able to sign important things like “yucky,” “sticky,” and “Cookie Monster” to their baby sister. After Wonderboy—and his diagnosis—came along, we watched the 3-volume series all over again. And somehow I think having gone through it once already, having watched deaf toddlers signing on the video, helped me take Wonderboy’s hard-of-hearing diagnosis in stride.
Last year Jane and I took a course online. Signing Online is geared for college students or older, but it worked out beautifully for us. Each lesson teaches conversational vocabulary through video clips. Again, we found the vocab extremely pertinent and functional: phrases like “What are you doing?” and “Of course!” really help you to converse in a natural manner. (There are a good many nouns, verbs, etc also.) It was a little pricey but we felt it was worth the expense. I think the full course is the equivalent of a semester at the university level.
However, there are some excellent free resources as well:
• ASL Pro and ASL Browser are free online American Sign Language dictionaries with video demonstrations of each sign.
• ASL University offers a free online tutorial with a combination of video clips and stills.
• I really have no excuse for my lousy fingerspelling skills—I could be honing them with this Fingerspelling Quiz.
• Finally, if your family has a deaf or hard of hearing member, you automatically qualify to use the Captioned Media Program’s free lending library of videos and DVDs—including a wide selection of ASL instructional materials. You can even view them via streaming video! Jane, Rose, Beanie, and I plan to begin a new series in the fall. (I just have to figure out which one.) CMP is funded by the Department of Education and has a library containing thousands of captioned movies, documentaries, and other resources. It’s an amazing program. Your tax dollars at work!
Related posts:
• Signing Time DVDs
• More about Signing Time
• Rilla Signs
• Unsolicited Signing Time Commercial
• Signing with Babies, My Favorite Topic
