What Rilla’s saying at the end there is “With Alex, Leah, and Hopkins.” Totally unprompted, I swear.
When I watched our Christmas 2005 video the other day, the bit that gave me the biggest pang of nostalgia was watching Wonderboy signing away. He hardly signs at all anymore, now that he talks so much. I’m thrilled with his verbal speech, but I really miss the signing. It’s funny to think back on how much ASL dominated our lives (in a rich and satisfying way) for a couple of years there, and now our use and pursuit of sign language has slipped to the back burner, becoming something of a hobby rather than a daily necessity. Jane still wants to certify as an ASL interpreter someday, and every few months we pull out our materials and learn another chunk of vocabulary and grammar. There are community college courses we might take next year. It’s a beautiful and important language, and I don’t want to let it go, even if our boy doesn’t need rely on it for communication the way he once did.
And of course the Signing Time DVDs remain in great demand with my little people, as the video above attests. With Rilla, we’re seeing all the benefits of sign language we saw with the first three girls—because rudimentary ASL was a part of our baby & toddler life from the get-go, long before we had a Wonderboy or knew he had hearing loss.
Here are some old posts singing the praises of our favorite kiddie DVDs:
A blog friend was curious to know why we decided to get Wonderboy’s speech therapy and audiology services from the public school district instead of through a private (i.e. medical) source. It was a tough decision, and I still have moments where I second-guess it. Navigating the system, dealing with an IEP—not to mention the IEP team—hasn’t always been easy. But most of the time I think it was the best choice, bearing in mind that no alternative is perfect.
The advantages, for us, of accessing these services are:
• close to home
• free (including ear molds and hearing aid batteries)
• no waiting time before a scheduled session
• our ST and audi are easy to reach via email or phone, are excellent at keeping lines of communication open with us, and are eager to work with us on a friendly, personal level.
These are very important factors, all of them. For therapy situations in a medical environment, such as the local children’s hospital where Wonderboy currently receives physical therapy—his PT needs are medical and involve consultation with orthopedics doctors—we must accept long travel times, difficulty finding parking, parking fees, insurance co-payments, a bit of time in the waiting room even before a scheduled session, and a more detached relationship with the therapist. Our current PT at Children’s is certainly warm and friendly and has an excellent rapport with my son, but she works in a Big Hospital System with all sorts of bureaucratic red tape crisscrossing between us. I can’t call her directly on the phone; we certainly aren’t going to be emailing back and forth. It’s a different kind of relationship.
The speech therapist (our “new” speech therapist—not really new anymore, as Wonderboy has been seeing her for over a year now—this is not the therapist who sandbagged me in the “not always easy” post I linked above) and audiologist we work with in the school district are wonderful: excellent at their jobs, very respectful of our choices as parents, and eager communicators. We are in regular contact via phone and email, not to mention our weekly sessions. Wonderboy adores them both and looks forward to ” ’peech days.”
The down side, of course, is having to deal with the whole maddening IEP process and School District Policy. I have to be constantly on guard against encroachments upon our rights—not by the individual therapists, but by the school district. The district representatives are completely frank and somewhat apologetic about their need to “cover themselves” from any possible legal action disgruntled parents might take against them. This particular district has been burned before, it seems, by parents who filed lawsuits because they felt, after the fact, that the district had not “done enough” for their children.
District reps have told me quite frankly that they “just don’t know what to do with a parent like” me, i.e. a parent who believes meeting my son’s needs is my responsibility and not the public school district’s.
One tangle we ran into this summer was over the matter of evaluations for PT and OT. Wonderboy has muscle tone issues and motor delay, all part of his neurological, shall we say, unusualness. 😉 Because he has congenitally short, tight muscles, we have had to do a daily stretching regimen with him since he was four months old. About once a year, we check in with PT to make sure we are still doing everything correctly, and to see whether there are any new areas we ought to concentrate on. Every time he has a growth spurt, his muscles get even tighter (because bone grows faster than muscle), and when that happens, sometimes we’ll do a kind of booster session with a professional PT for a few months. That’s what we’re doing right now: three months of every-other-week PT at the children’s hospital to work on some specific issues.
I scheduled an OT evaluation at Children’s as well. (Which is a whole other story in itself, one I’ll have to save for another post.) His fine motor skills seem to be developing very nicely, but his doctors thought an eval would be a good idea to look at some global sensory issues and stuff (to be technical about it).
The school district had a very, very, very hard time accepting my assertion that we would be declining their offer of OT and APE (adaptive physical education, the closest they can come to PT) evals this fall. Since I already had PT and OT evals scheduled at Children’s, and since we intended to get PT and, if necessary, OT at the hospital rather than through the school district, I saw no reason to squeeze yet more appointments into our already busier-than-ideal schedule. I declined the district’s eval offer and gave them the dates of our scheduled evals at Children’s just so they’d no we were on top of this.
As I understood the regulations, the district is obligated to offer the evaluations and I as parent have the right to decline them.
The district begged to differ. That applies, they said, to the first time evaluations are offered. But once a child is in their system, once a need has been documented, they must (so they told me) provide these evaluations.
This conversation went back and forth between us all summer—amiably, mind you. I (amiably) dug in my heels, because I guard our family’s time very carefully. Every new appointment is a drain on our time. These medical and therapy-related appointments add up. They could easily dominate our schedule if I let them. There was no reason for us to make two extra trips to the school to duplicate evaluations he has already had, especially since I had no intention of receiving those services through the school district.
Oh, this was hard for the district to accept. Finally, in one rather surprising phone call, an extremely friendly and earnest district rep told me—with immense apology in her tone—that “we were at the point where the district would normally be forced to seek mediation.” Hello! This despite my having provided the district with documentation of the PT and OT evals scheduled at Children’s. But the district really, really didn’t want things to get ugly (i.e. go the mediation and arbitration route). They decided to “compromise” (I put it in quotes because I still believe they are talking about district policy, not state law) by accepting a written statement from me in which I acknowledged that they offered the evals, we declined them, and we are aware we can ask for them at any time.
I was happy to provide such a statement and put the matter to rest. I know that many parents in other school districts are in the position of having to fight to get their children necessary services, and I’m not inclined to get too cranky about having a district all too eager to provide services to my child. But I do think it is vitally important for me, as for all parents, to stay alert and informed about what the law says and what our rights are, and to make sure not to passively cede any of those rights.
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. We are huge fans of the Signing Time DVDs. 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.)
There are some links to American Sign Language resourcesin the sidebar of my old site. (I’ll set up a page here soon as I get a chance.) 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.
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.”
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.
As I’ve mentioned before, mommyspeechtherapy.com is a good source of tips for how to work on specific speech sounds with your children.
As I work (and play) with Wonderboy, I’ve come up with a few games of my own that are helping him practice the new sounds he is learning to produce. One particularly sweet one is how we practice the p sound, which is still relatively new for him. I thought it might help if he could feel it, feel how the air explodes from one’s lips during the puh sound. I touch my lips to his cheek, like a kiss, and say words like piano, pizza, apple, emphasizing the p. He has begun to reciprocate, pressing his little face to my cheek and puhracticing his puhlosives. It’s so cute, I want to eat him up, like pizza or an apple.
We also use the Visual Phonics signs to help make consonant sounds pop for him. Since sign is Wonderboy’s other language, having signs connected with sounds makes a lot of sense to him. If I make the visual phonics sign for the first sound in a word, and then follow with the whole word, both in English and ASL, he gets that the sound itself is something that can be broken out of the word and made on its own. So: buh, buh, baby. The "buh" is the Visual Phonics sign for the sound made by the letter b: you hold the ASL sign for b up to your mouth, and as you say "buh," you move the b sign rapidly away. That’s the phoneme sign.
We do this over and over, all through the day. Guh guh go, kuh kuh car, puh puh pizza. (Yes, more pizza. If you spend much time at my house, you know that we are all about the pizza here. I don’t cook for people. I invite them over for pizza. Can’t make it? Eh, we’ll order that pizza anyway.)
We’re working on developing his listening differentiation skills with a game we play with Rilla. Wonderboy thinks he is teaching things to Rilla (and he is), and this makes it loads of fun for him. He doesn’t realize he’s making big leaps himself.
We have a stack of pictures of objects with sounds we’re working on. Right now it’s the f sound, so we have fish, frog, fire, phone, etc. I lay out two or three of the cards and give Wonderboy or Rilla a block to hold. Then I’ll say the name of one of the items on the cards, and the child whose turn it is puts the block on the right card. It’s a very simple game and both the little ones eat it up.
For Wonderboy, what the game is doing is helping him hear the subtle differences between similar-sounding English words. With his hearing aids, he can hear a good deal of speech, but not everything—not some of the soft, unvoiced consonant sounds. So I lay out pictures of phone and bone, or fish and dish, and the game—which is great fun, especially because of the antics of little miss Rilla—hones his listening skills.
I think he is doing a lot of lip-reading. He’s a crackerjack at the game when he can see my mouth, and has more difficulty if I hide my lips behind a hand. When he sits beside me and chatters away, as is happening almost constantly these days, he cups my chin with one determined little hand, turning my face toward his. This is indescribably sweet, I have to say. At a birthday party a couple of weeks ago, a friend’s mother was watching Wonderboy talk to me, and she said, "That is so dear! The way he studies your face! He can’t take his eyes off you."
It is dear. It’s a good idea, though, to help hone his listening skills without visual clues when we can. So we play another game, also with Rilla, in which each child hold a little ball up to his or her ear, and I cover my mouth and make a sound. The game is simple: when the child hears the sound, he or she drops the ball into a container. We use an empty tennis ball canister. The main purpose of this game is to get Wonderboy into the groove of what happens in a hearing test when we go to the audiologist. In order to accurately test his hearing (and therefore ensure that his hearing aids are calibrated correctly, in the way that will give him the best possible amplification), we need him to respond to each sound he hears. The ball-in-canister game is one we can easily duplicate in the sound booth.
It’s also great fun. Rilla thinks it’s a hoot! Her excitement is infectious, and Wonderboy and I are usually in giggles the whole time. They hold the balls up to their ears just to reinforce that they are going to listen. Wonderboy thinks Rilla jumps the gun a lot; he doesn’t realize that she is hearing sounds that don’t exist for him. He doesn’t seem to hear S or SH at all.
I was wondering what the research says about how hearing kids learning sign affects (if it does at all) their verbal speech acquisition. I assume it is like my 4yo learning romanian and english. his english is miles ahead of romanian, but learning romanian hasnt affected his english at all. just wondering if you had read anything about this.
That’s a very good question! As a matter of fact, teaching babies to sign does seem to have an affect on their verbal language development—a good one. I’ve read about at least two separate studies whose results demonstrated that children who used sign language as babies tend to score higher on IQ tests than non-signers. There was a study at the University of Alaska and another one at Davis, I believe. One of them tracked kids through age 8 and found that the baby-signers wound up reading at earlier ages and showed higher cognitive and verbal skills.
But honestly, even if that weren’t the case I’d be on board with baby sign just for the way it smooths the toddler years. You get to bypass that stage where the little one knows exactly what she wants to tell you but doesn’t have the words for it yet, leading to the intense frustration that often winds up in a meltdown.
We’ve used baby sign with all our babies, even before Wonderboy came along. When Jane was about a year old, Scott’s boss’s wife very thoughtfully sent me an article on the subject, and I thought it was a brilliant concept. I taught Jane a few signs but we didn’t really take off with it until Rose came along. By then, Jane was three and had spent a lot of time in the hospital where she saw an ASL interpreter working with another patient. She was very interested and I was a young would-be homeschooling mommy eager to start strewing. 😉 I ordered this set of videos from the Timberdoodle catalog and we dove in.
The videos didn’t appeal to Jane—they are intended as tutorials for the parents of deaf babies and toddlers (and yes, how goosebumpy is that, considering what was in store for us a few babies later? God’s providence, anyone?) and the format is rather dry. But the vocabulary was perfect for daily use with my little ones. By the time Rose was 18 months, she was using about two dozen signs on a regular basis. I remember my relatives being impressed by her “please” and “thank you” at a family funeral. It is awfully nice to have “please” be a habit even before verbal speech begins.
When Beanie was a year old, Jane was six, and she and her friend Summer were both interested in learning ASL, so we watched the Sign With Me videos again. The little girls hung in there with the videos despite their dry format, and since they both had one-year-old sisters they really enjoyed being able to sign words like “yucky” and “silly.” We started checking children’s sign DVDs out of the library, and Summer’s family came across Signing Time. That was the beginning of a beeyootiful friendship…
But we had no idea, then, how important the Signing Time series—or, indeed, ASL itself—would become to us. When Wonderboy was born I launched right into baby sign, same as always, having no clue that he had hearing loss. He was six months old before we started to seriously worry about his hearing, and it was another three months (after a set of tubes proved fluid buildup wasn’t the problem) before we got a firm diagnosis.
I’ve already written about what happened next: how our family threw ourselves into the study of ASL for Wonderboy’s sake—and our own intense enjoyment. ASL is a beautiful, beautiful language. I wish I were more fluent—we are still plugging away on our own, but one of these days we’d like to study with a fluent signer. Jane hopes to become certified as an interpreter one day.
One piece of advice I have about teaching babies to sign is that it’s better to use real ASL (American Sign Language—if you’re American, that is) rather than one of the made-up “baby sign” programs. It seems to me that as long as you’re teaching signs, why not give the child a head start on a real second language? That’s one of the reasons I come out so strong for Signing Time (and no, I don’t get a commission from those folks)—it uses ASL.
We recently received the three latest installments of Signing Time, and once again I’m blown away by how fun and engaging they are, how practically useful the vocabulary is, and how effective the instruction is. Both Wonderboy and Rilla are doing a lot of counting these days, because there is a new “Counting Time” section of the show. The “ABC Time” segment has also been a big hit. The new editions are:
Move and Groove
Happy Birthday to You
Nice to Meet You
I really like the manners signs taught in that last one. I admit I still think the songs in Volumes 4, 5, and 6 are the best of the whole series, but once again the music is catchy and fun, and I honestly can’t say enough good things about these DVDs. Rachel Coleman and crew have hit upon a perfect format. In fact, I also think Signing Time gives reading skills a boost, since the English word for each sign is displayed next to the person demonstrating it.
Once Wonderboy’s hearing loss was diagnosed, we knew ASL would be an important second language for him—both as a bridge to verbal speech and as a backup for times when he isn’t wearing his hearing aids (or in case his hearing degenerates further as he gets older). There are different theories about signing with hard-of-hearing kids, and the “Total Communication” approach is what made most sense to us. His expressive and receptive language skills have consistently tested as at-or-above-age-level despite his “speech delay”—that delay is only with pronunciation. I am so grateful that we were already primed to jump into the use of ASL with him because of the “baby sign” trend. Some trends are sound and sensible. This is one!
Wonderboy ran up to me and said, "Mommy, I need kiss you!"
Smooch. Now that’s what I call speech therapy.
"Need kiss" is more like "nee kih" but he is starting to use ending consonants on words like up, cup, and big.
"I need to kiss you" has to be one of the sweetest sentences a mother can hear.
In the meeting last week there was a really funny (and for me, triumphant) moment when he said something to the audiologist. Earlier in the meeting, his speech therapist and I had been talking about how much she "gets out of him" during a session. His tendency is to watch her, either solemnly or with a big grin (if you know him in person you know what I mean about the grin—I was telling this story to a friend and she said, "Yup, that’s Wonderboy all right"), but not repeat back the words the therapist is trying to get him to say. Then, after an activity is finished, he’ll say the sound or word clear as a bell. He just—like most kids his age—doesn’t like to be put on the spot.
So in the meeting, I was describing this as a typical behavior for his age and developmental stage. (Developmentally, he is more like a young three than a going-on-four three.) The speech therapist was looking at it from a different angle: she was seeing his silence as an inability to perform on cue rather than a choice not to perform. Well, this is one of those things that a mother just knows. When you spend all day with a child, you get a pretty good sense of when he can’t do something and when he won’t.
About twenty minutes after this conversation, the audiologist burst out laughing. She explained that she had been trying to get Wonderboy to talk to her. She was sitting next to me, and he often wandered over from the toy area to stand at my elbow and give me a kiss on the arm. (He is so sweet with his kisses!) The audi had been holding out a plastic ice cream cone and telling him, "Say ice cream. Say ice cream." And he had just grinned at her.
So what made her burst out laughing was that several minutes after she stopped playing with him and set the toy cone down on the table, he ran up and grabbed the cone and said to her, with the most impish glint in his eye, "I got my ice cream cone."
"It’s exactly like you said!" the audiologist crowed.
This reminds me so much of when Jane was two years old, in the hospital for chemotherapy. One day she pitched a big huge fit right in the middle of the hall on the cancer ward. This was unusual behavior for her, and medical personnel came running from all directions.
"Is she seizing?" called a nurse, racing to my side. A doctor elbowed me out of the way, dropping to his knees beside my shrieking, writhing child.
"No, it’s not a seizure," I said. "It’s a tantrum. I wouldn’t let her run in the hall."
She had a central line in her chest, which was connected by tubing to an i/v pole from which hung a bag of medicine so toxic I was under orders to wear protective gloves when changing her diaper. So, no, I wouldn’t let her run away from me down the hall, pulling the i/v behind her. And she was two years old, and this made her mad.
You wouldn’t believe what a hard time I had convincing the assembled docs and nurses that this wasn’t a medical emergency.
So much I want to respond to in your comments! Good thing there’s a weekend coming up…
One important point I didn’t get to yesterday is this piece of information regarding homeschooling with an IEP in California: as soon as the child reaches legal kindergarten age, more options open up. Wonderboy will be four in December. Part of the system’s inflexibility has to do with his age. He falls in a murky space between the Early Intervention cut-off age of three years, and legal kindergarten age. No, murky is the wrong word: the law is very clear. It’s a rigid space; that’s a better way to describe it.
As soon as Wonderboy reaches legal kindergarten age, I have the option of ditching his IEP. That’s because I am homeschooling under California’s private school provision, one of several options open to home educators in this state. According to the state of California, my three older children are enrolled in a private school called Bonny Glen Academy. The "headmaster" is my husband, and I am the other member of the faculty.
When Wonderboy reaches legal kindergarten age, I can enroll him in our private school and turn down his IEP in lieu of an ISP, an Individualized service plan. This is how students in actual private schools can receive special education services like speech, physical therapy, and occupational therapy from the public school system. I’m still wading through the regulations, but there seems to be more flexibility with an ISP than with an IEP.
But Wonderboy won’t be legal kindergarten age until the beginning of the 2009-2010 school year. He misses next year’s cutoff by one week. I find it hilarious that I am suddenly going, Shoot, I can’t believe we miss the cutoff—in all other circumstances, I would be thrilled not to have to fuss with enrollment paperwork for him for an extra year. (Especially since kindergarten is not mandatory in California. Yet.)
For now, we’re solidly in IEP territory. And despite how complicated it has become, I don’t (yet?) regret pursuing speech and audiology services through the school system. I love the district audiologist. She is very good at her job, she’s flexible about scheduling, and her services do not cost us anything. If I’d foregone the whole IEP adventure, we’d be getting audiology services via the medical establishment, which means a significant expense of time and money.
As for speech, well, I’m on the fence. But that too is fodder for another post. It’s a big topic, so I’ll save it. This one is going to be long enough, I fear.
~~~
Amy commented:
IMHO the school systems just don’t *get* the homeschooling mother’s
mentality of "I *can* and *will* do this at home because it is part of
my job as homeschooling parent" – we saw so many parents (good parents,
mind you) who just "left it all up to us" as "professionals" and never
really worked with their kids at home. Not that there was much TIME
with the kids coming home late from school, two income families and
many activities! I know I’m generalizing here, so I hope no public
school families are offended. There were some great parents, but many,
many hands-off parents, therapy wise.
Yup,
and that is indeed what informs the school personnel’s decisions—that
and the related issue of parents filing suit against school districts
for failing to do enough. And knowing how hard some of my
public-school-parent friends have had to work to GET necessary services
for their children, I am well aware that this is a complicated problem,
a swinging door that smacks faces in both directions.
Sitting in that room, debating with the team, I knew I was talking
to people who think well of me, and the ones who have worked with Wonderboy do truly care about my son. Pam, I am quite sure, was enduring a
form of anguish in "having" to recommended against what she knew I
wanted.
Not that her anguish excuses her for failing to tell me in advance
what she was going to do—if she wasn’t going to recommend cutting back
to one session, there was really no point in having the meeting. No
need to assemble the panel if you aren’t going to change the paperwork.
Really, what it means is that she didn’t have the courage to tell me
herself—she let the district rep, a stranger, do the dirty work for
her—and in quite intimidating circumstances.
It’s HARD to argue back in the face of authority. It does not come
naturally to me, let me tell you. The reason I can do it is because
underneath my oh-gosh-they’ll-get-mad-if-I-buck-’em insecurities, I
know that in truth *I* am the authority. I learned this during our long
ordeal with Jane’s cancer. It took me months of hospital living to get
to a point where I could be "frank, firm, and persistent" with doctors.
I had to assimilate the knowledge that although they knew more about
fighting cancer than I did, I knew more about my child. I am the
authority on that subject.
Back to Amy’s point. I know that my decision not to avail myself of
the very good deaf/hard-of-hearing preschool program our district offers is utterly
mystifying to several of the members of the team. You can practically
hear them thinking, "But…you could have him off your hands for hours
every day!! Whyyyy wouldn’t you want to take advantage of that break?
As you say, you’re juggling a ton already…"
"She homeschools her children," I heard one team member whisper to
another. "OHHH," the other, who was meeting me for the first time,
responded, as if that explained so much. Heck, maybe it does.
In the interests of fairness, I want to clarify that the person who
whispered "She homeschools" was my biggest advocate in the meeting. I
think she really was offering that information to her colleague as a
relevant fact: this is a mom who is very involved with her children’s education. It was the colleague’s response that was so telling. "Ohhh," in a tone that conveyed: "So that’s why she’s being difficult."
(More fairness! By the end of the meeting, the Ohhh woman seemed to
have completely revised whatever negative impression she had of me at
the beginning. She told me I should write a book. Hee.)
I want to reiterate that although I was in opposition to the team’s
initial decision, this wasn’t an overtly hostile environment. These are really
nice people, dedicated to their jobs, working from their best
understanding of how kids learn, how families work, what the law says,
and how the system works. Almost by definition, a homeschooling family
is going to run counter to that understanding. What we believe about
how kids (people) learn and how families work tends to be dramatically
different from the views of mainstream educators. (For one thing, I
don’t think I know any homeschoolers who would commit to a definition
of "how families work"—the "how" is different for every family!)
~~~
There was a point in our meeting when it really looked as though the
team was not going to budge on the reduction of service. The
conversation had become about scheduling: since our current schedule
doesn’t work, what other options were there. As you may recall from last year, when I first came
seeking speech therapy, the district’s strong recommendation was for me
to enroll Wonderboy in that five-day-a-week deaf/HOH preschool program. I declined, for a
number of reasons.
One thing I was interested in for this year, though, was having him
receive speech therapy from one of the two therapists involved with
the preschool. Since they work with deaf/HOH kids, they are specially
skilled in meeting the kind of speech needs my son has. (Our current
therapist’s specialty is preschoolers, but he is her first HOH child,
and she is learning as she goes. She makes some classic mistakes, such
as forgetting that he can’t hear her when she whispers. But again, that’s for another post.)
We discussed a number of options. He could get his one-on-one speech therapy at the preschool. Pam and I both wondered whether that would be too distracting, to have a bunch of other kids around doing other things during the session. The preschool teacher said that no, it was a play-based program, so Wonderboy could do whatever he liked, and the speech therapist would simply follow him around the room, working speech into Wonderboy’s activities.
"Um, how is that any different from what I do all day at home?" I asked. I reminded them that his IEP doesn’t say anything about developing expressive and receptive language. He has no delay in that area—in fact, he’s ahead for his age, since (speaking English and ASL) he is bilingual.
His IEP goals for speech—there are only two goals, by the way—involve the production of five new sounds. That’s all the district is supposed to concern itself with: helping him gain a finite number of consonants. He has already gained three of the five sounds specified in the goals.
Back to the drawing board. If he were enrolled in the preschool program even part-time, they told me, he could get speech during the small-group session that would be more in line with the goals we’re working toward. Would I consider a two-hour time slot, once or twice a week?
I gave this idea serious consideration. Once a week, for speech and audiology? It might possibly work…he’d be working with the deaf/HOH-trained speech pathologist, for one thing, and having seen her at work (she attended one of our sessions to give Pam some pointers), I was very open to the idea of finding a way to work with her.
But then it hit me, and I asked the question. "What happens if I
agree to this, but in a few months’ time I have determined it not to be
in his best interests? What if I wanted to go back to what we have now,
the 30-minute private sessions?"
There was a pause, and the district rep exchanged glances with the others.
"Well," she said slowly, "we would have to have another meeting like
this one, and the team would have to agree that he would be best served
by pulling him out."
"In that case," I said, "we can stop talking about this option right
now. And it’s too bad, because I do think there are some strong
arguments in its favor. But I can’t take the risk of running into
another situation like this one. If there is any possibility of my
having to walk back into this room and be told by a panel of people
that I can’t do what I know to be in the best interests of my own
child, then forget it."
I worded it strongly because I needed to make sure they understood
the point. I will not cede my parental authority to a panel of school
district personnel. End of story.
This statement seemed to hit home. From that point on, the tone of
the meeting was different. I think several of the people in the room
had assumed I was completely closed to the idea of any participation in
the preschool program because of some anti-school prejudice.
In fact, there had been a funny moment earlier in the meeting when I
teased the audiologist for making exactly that assumption. She
mentioned that she knew my older girls go to "enrichment activities"
(her words) like music and dance. "Maybe," she suggested, "you could
think of the preschool program as an enrichment activity for Wonderboy."
I grinned. "You don’t have to come up with other names for it," I said. "I’m not going to break out in hives at the word school."
There was a ripple of laughter, and it was clear that a few people at the table had assumed I would categorically refuse anything with a schooly label.
"Listen," I said, still smiling but also serious, "what I’m about—the reason I homeschool—is because I’m about individualized education, the freedom to do what’s best for each individual child."
We all had a nice chuckle over it, and someone else joshed the audi
for trying to slip something past me, and she said she wasn’t slipping
anything past me, she didn’t think I missed much. Which was nice of
her, but thinking back over the meeting, I see that there were some nuances I nearly missed. (And probably some I did miss, but I wouldn’t know, would I?)
I almost missed the fact that opting for a two-hour dropoff at the preschool would have meant increasingthe level of service—when here I was fighting to decrease it in the first place.
I almost missed the fact that dropoff therapy would negate the most important aspect of our therapy experience: I wouldn’t be there to learn techniques and activities to use at home.
It rather amazes me, now, looking back at the meeting, that I came
close to making such a colossal mistake. I’m sharing that part of the
story here, embarrassing as it is, because I think it speaks to
something very important for parents to know as they head into meetings
like this. When you’re under that much pressure, and facing disapproval
from figures who speak with authority, it is very, very easy to lose
track of what you want and what you know to be true.
You are trying to be reasonable, and you begin to think in terms of
compromise, because to do anything else is to make yourself a royal
pain in the tuckus. But there are certain things you should never have
to compromise, and your child’s best interests ranks mighty high on that list.
~~~
So the way it turned out is that I said, "Listen. This is intensely frustrating. What you are saying—what several of you have articulated very clearly—is that you agree that because we do so much work with Wonderboy at home, and because his life is filled with so many other appointments eating up our time, and because he is making such terrific progress, it makes sense to cut back to one speech therapy session a week. But you say you can’t agree to that change because it doesn’t look good on paper. Pam, what you said was, ‘On paper it’s hard to justify a reduction of services for a child with that level of need.’ So what I’m hearing is that you are going to stick to a decision we all agree is not in the best interests of this specific child, because of a fear of how it looks on paper."
Some of them were nodding. The itinerant teacher, the one whose curriculum I had declined last year but who came to our house a week ago for the annual 30-minute consult I did consent to (and that in itself is another whole post topic), spoke up on my behalf. She said that having seen Wonderboy in his home environment, having heard him chatter, having watched how I interact with him, she had to admit that there wasn’t one single thing she would recommend to a parent that I wasn’t already doing on my own.
She was very complimentary. I was grateful, and yet it was strange—it felt like having a great defense witness testify for me when I shouldn’t have been on trial in the first place. It bothers me, still, that part of what eventually won me the result I was after was that I had allowed a district employee into my home, had been observed and passed muster.
~~~
Believe it or not, long as this post is, there’s a lot I haven’t told yet. Maybe I’ll get to it later. Maybe I really will have to write that book.
You know the end of the story already—the end of this chapter, at least. After a whole lot more discussion, the team agreed. We signed the papers. Wonderboy will attend speech therapy once a week. His IEP expires in January and we’ll have to reconvene the panel at that time, to revise, update, tweak.
That means this isn’t over. But I’m learning more about the system all the time.
