Archive for the ‘Wonderboy’ Category

A Fan Letter to Amy Ludwig VanDerwater

March 26, 2013 @ 6:34 pm | Filed under: Books, Nature Study, Picture Book Spotlight, Poetry, Rilla, Wonderboy

Book cover: Forest Has a Song by Amy Ludwig Vanderwater

Forest Has a Song by Amy Ludwig VanDerwater, illustrated by Robbin Gourley.

Dear Amy,

My name is Rilla. I am 6. Mommy read Forest Has a Song to me. I think that It Is really pretty poetry and i also think that deer are pretty too. I really love nature. And deer are one of my favorite animals and it said a lot about deer. In the picture of the fiddlehead ferns, I really like the pattern of the colors. And the fossil looks so realistic. When I grow up i want to be an illustrator like Robbin Gourley. And also, i love the Spider poem and the Dusk poem. I love the never-tangling dangling spinner part. And I love baby animals. They’re so cute and fluffy when they’re birds at least.

One of my favorites is “Farewell.” How it says “I am Forest.”

Love,
Rilla

(Doggone spellcheck. She made me correct all her invented spellings—the red dots under her words tipped her off. Then again, “rhille priddy powatre” might have been hard for you to parse. Also, of course, recognizing that a word just looks wrong is a big step toward learning to spell and I can’t very well stand in the way of that progress just because the invented stuff is adorable.)

As for the book, I wholeheartedly agree with Rilla’s review. What a gorgeous, gorgeous volume. The poems sometimes wistful, sometimes whimsical, always lyrical. Beautiful for reading aloud, full of delicious internal rhyme and alliteration. And infectious: I predict a lot of original nature poetry in our future. This collection begs you to take a fresh look at the world around you and see the magic of the curled fern frond, the mushroom spore. Of course I’ve been a fan of Amy Ludwig VanDerwater’s work for years.

I can’t imagine a more perfect pairing for Amy’s poems than Robbin Gourley’s art. Lush watercolors, rich and soft. I kept coming across pages I’d like prints of. Actually, this is exactly the kind of book where you want a second copy for cutting up and framing. (If you can bear to. I always think I’d like to do that, but the one time I actually bought a spare copy for this purpose—Miss Rumphius—I couldn’t, in the end, bring myself to dismantle it.)

Beanie’s favorite poem was “Forest News”—

I stop to read
the Forest News
in mud or fallen snow.
Articles are printed
by critters on the go…

—which she loved for its intriguing animal-tracks descriptions, its sense of fun, and its kinship with her favorite Robert Frost poem, “A Patch of Old Snow.” (“It is speckled with grime as if / Small print overspread it, / The news of a day I’ve forgotten — / If I ever read it,” writes Frost, perusing a somewhat more somber edition of the woodsy chronicle.)

Wonderboy’s favorite was the puffball poem, and he later wrote (in his customary stream-of-consciousness style) this string of impressions the book made on him: “dead branch  warning and woodpecker too  dusk  burrow in a burrow chickadee sit on my hand  and come fly here”…

Truly beautiful work, Amy and Robbin.

Related post: The Poem House

Why This Blog Has Been a Trifle Slow of Late

November 23, 2009 @ 2:49 pm | Filed under: Wonderboy

It’s because I’m too busy having conversations like the following…not to mention chasing after the scattered fragments of my sanity afterward.

SCENE 1

G/I Dr.: We think it’s possible your son has Condition X. There is no conclusive test for this, but here’s this list of expensive and time-consuming tests I’d like you to have done. They might give us some glimmer of an idea whether my diagnosis is correct, even though he doesn’t actually have the main symptoms of Condition X.

Me: If it IS Condition X, what’s the treatment?

Dr: A 10-day course of antibiotics.

Me: (stunned silence)

Me: Is it a special antibiotic? Because he’s been on antibiotics lots of times for respiratory infections and stuff.

Dr: Oh yes, this would be a different drug.

Me: If the tests are so inconclusive, why not just try the antibiotic and see what happens?

Dr: Because we mustn’t prescribe antibiotics without some evidence the diagnosis is correct, because of resistance and stuff.

Me: But you said the tests might not show evidence.

Dr:
Oh yes, I’m not even sure your son is capable of cooperating with the main test. It may not work at all, given his other issues.

Me: (stunned silence)

Me: But if the test fails, then what?

(Cue sound of crickets.
)

****

SCENE 2. Three days later.

Audiologist:
Oh dear, your son’s eardrums are all red. Let me do a tympanogram. Yup, no response at all. He must have an ear infection. You need to take him to the pediatrician.

Pediatrician’s office:
The doctor will call you soon.

(crickets)

(crickets)

(Cue sound of no phone ringing.)

(Cue phone! But it’s not the ped’s office.)

G/I dr’s nurse: Hi there! The doctor asked me to call and schedule the Test Deemed Most Likely to Fail.

Me: Yes, I have questions about whether that’s a smart idea. Also, the audiologist says my son has an ear infection. He will likely need antibiotics. Could we use the same antibiotic that would treat Condition X?

Nurse: Oh, goodness no. But you need to inform us ASAP if the ped puts him on antibiotics for the ear infection, because in that case we cannot administer the Test Deemed Most Likely to Fail for at least six weeks. The antibiotic will skew the test results.

Me: (stunned, incredulous, mystified silence)

FINIS

(for now)

This Could Go on Forever

November 7, 2009 @ 7:21 pm | Filed under: Hearing Loss, These People Crack Me Up, Wonderboy

Wonderboy: My hearing aids aren’t working.

Me: Oh, are your batteries dead?

Wonderboy: Huh?

Me: Do you need new batteries?

Wonderboy: What?

Me: Come here, let me check your hearing aids.

Wonderboy: I think my batteries got dead.

(And yes, we can communicate in sign language as well, but during this conversation I was holding a plate in one hand and a giant slice of pizza in the other. Priorities.)

Literalist

October 26, 2009 @ 8:14 pm | Filed under: These People Crack Me Up, Wonderboy

A conversation reported to me by the 14-year-old:

biscuitWonderboy (looking at book): “Biscuit is spelled B-I-S-C-U-I-T.”

Jane (hiding book): “That’s right! What does B-I-S-C-U-I-T spell?”

Wonderboy: “Biscuit!”

Jane (still hiding book): “That’s right! How do you spell Biscuit?”

Wonderboy: “With letters!”

Good Listener

October 22, 2009 @ 7:02 am | Filed under: Hearing Loss, These People Crack Me Up, Wonderboy

During yesterday’s evening tidy, Jane asked Wonderboy to put a pair of shoes away in the cubby.

Wonderboy, as many of you know, is hard of hearing. Even with his hearing aids in, he cannot pick up soft unvoiced consonant sounds such as those made by the letters C and T.

Which may explain why, this morning, we discovered that pair of shoes in the kids’ bathroom—in the tubby.

Unsolicited Signing Time Commercial

December 30, 2008 @ 2:52 pm | Filed under: ASL, Fun Learning Stuff, Hearing Loss, Kids' Television, Sign Language, Special Needs Children, Speech Delay, Wonderboy

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:

It Must Be a Sign
Something Else to Buy Instead of Curriculum: Signing Time
Rilla Signs
Signing with Babies, My Favorite Topic

Everyone Knows Potatoes Have Eyes, Not Ears

December 26, 2008 @ 8:24 pm | Filed under: Family, Hearing Loss, These People Crack Me Up, Wonderboy

Here’s my boy, hanging out having a snack with his good buddy, Mr. Potato Head.

I wondered why one of Potato Head’s ears was lying on the couch with a spare screw-cover (left over from the construction of a toy shopping cart) stuck on the end. Wonderboy informed me that it isn’t an ear—it’s a hearing aid. And it needed a new battery, of course. Evidently he went rummaging around in the drawer where we keep his own hearing aid batteries and found the little orange screw-cover.

Oh, I could just eat him up every minute of the day.

Speech or Other Services: Schools or Medical?

October 16, 2008 @ 6:01 am | Filed under: Special Education, Special Needs Children, Speech Delay, Wonderboy

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.

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My Wonderboy

September 29, 2008 @ 1:04 pm | Filed under: Special Needs Children, Wonderboy

The other day I mentioned that Wonderboy got another new diagnosis this summer and I have been wanting to write about it but needed to think through the privacy issues first. After taking some time to ponder, Scott and I agreed that this is something just as important to write about as the challenges and joys we’ve experienced as a result of our boy’s hearing loss, and that blogging as frankly about this new challenge as I have about other things is for the good—Wonderboy’s, ours, other families’. I know how much I have benefited from hearing other parents’ stories and advice over the years—during Jane’s cancer treatments, and Wonderboy’s early medical adventures, and during all sorts of challenges related to nurturing special needs children.

Information-sharing is a very good thing.

I said “this new challenge,” but the only thing new about it is that doctors put a name on what I had already been suspecting for some time. Wonderboy has mental retardation.

During my son’s first two or three years, any gaps in his comprehension were easily accounted for by his hearing loss and speech delay. But this past year, especially as Rilla (who is two and a half now) has zoomed past Wonderboy developmentally in many ways, we wondered more and more if there perhaps there was some other piece of the puzzle yet to be named. He is four years and nine months old, but he still doesn’t recognize colors by name—though he’s been signing color words since he was a baby. He doesn’t understand days of the week, is only just beginning to grasp “yesterday, today, tomorrow,” can’t count past three or four, enjoys baby board books but isn’t yet ready for storybooks.

He’s a dear, jolly, affectionate soul, the joy of our household. I’m not sure when I knew for certain that he had some kind of cognitive deficit overlaid on the hearing-loss challenges. I first used the words “mentally retarded” tentatively, questioningly, in an IEP meeting last winter. (He receives speech therapy and audiology services from our public school district but that’s all.) My words were met with dead silence around the table, and for once the school district “team members,” who usually have so much to say about everything, said nothing at all. I thought perhaps I’d blundered, had used a non-PC term, and after an awkward pause, the discussion moved on: we were there to talk about speech therapy and audiology, and nothing more was said about a cognitive deficit.

At the time I already had him on a waiting list for an in-depth evaluation with the behavorial/developmental clinic at the children’s hospital: an appointment Wonderboy’s geneticist and pediatrician had been strongly recommending for months. The wait was very, very long: the evaluation did not occur until this past July. By then we were reasonably certain in our own minds that autism was not on the table: based on everything I’d read, Wonderboy did not meet the social/communicative criteria for an autism spectrum diagnosis. And sure enough, the four-hour battery of tests confirmed that he is not on the spectrum. “But there is a cognitive issue,” the doctor said, “something you need to know…”

I’m not sure what official diagnosis I expected, but I know that the words themselves, when they came, even though I’d had my own suspicions, were a shock—not the condition so much as the terminology.

“Mental retardation” is a label with an awful lot of social baggage, especially for people of my generation. Was there anything more insulting you could call someone in grade school, or be called, than “retard”? And twenty, thirty years later, that slur is causing just as much pain and controversy as it ever did.

Being something of a word person, I was fascinated by the reaction the words got when we told friends and family about the diagnosis. Honestly, I think I had to spend more time talking to people about the terminology than the condition it describes. Even the Wikipedia entry begins with a long discussion of the various terms that have been used and discarded over the years—discarded after common usage coopted a clinical term for use as an insult. First “cretin,” then “idiot” and “imbecile” (indicating differing degrees of cognitive disability), then “moron,” a word invented by doctors in the early 20th century, and when that became a slur like the others, “mentally retarded” came into use.

I learned that the American Association on Mental Retardation renamed itself in 2006: it is now the American Association on Intellectual and Developmental Disabilities, and its preferred terminology for mental retardation is now “intellectually disabled.”

I confess that sounds a bit jargony to me. It’s hard to imagine using it in conversation. Also quite a mouthful is the broader term “developmental disability,” which does encompass Wonderboy’s physical and cognitive delays. I am seeing that term used quite a bit online, on special-needs forums and such. I suppose it lacks the emotional baggage of “mentally retarded,” but for us it’s a moot point anyway, because here in Southern California at least, “mental retardation” is still the clinical term in common use: it’s what appears on my son’s charts now, and whenever I walk into a doctor’s office and am asked, as I always am, “what’s his diagnosis,” among the list of medical and developmental terms I must rattle off is, now, mental retardation.

[2012 update: Now the accepted term, both in educational and medical circles—at least here in San Diego—is “cognitive disability.”]

Whatever you call it, the fact is that my boy’s brain doesn’t work the same way most four-going-on-five-year-olds’ brains do. At this point, he has great difficulty grasping abstract concepts. His language skills are actually quite good—as long as we’re talking about concrete things. Most abstract concepts seem to elude him right now. Developmentally, he is much more like a two-year-old than a four-year-old.

And he is wonderful. His joy, his eagerness, his abundance of love and affection—these are the qualities that melt me a hundred times a day, the qualities that make him uniquely him. He is his sisters’ darling. The way he laughs and literally quivers with excitement whenever one of us has been away for a few hours and returns home: his happiness is completely infectious, and I’ve seen him set whole rooms of people to smiling.

This is not to say there aren’t challenges: there are many. After the diagnosis, when fuzzy suspicion became clear understanding, I realized that I pretty much have two-year-old twins at the moment. No wonder I’m always wiped out! Pregnant, pushing forty, with toddler twins: you better believe I began cutting myself a whooole lot more slack after I fully grasped the reality here.

For me it is always better to have a name for something, better to have a firm diagnosis to wrap my head around. And so although those words were initially a bit of a jolt, in many ways they made life much easier.

I have volumes to say about all the different aspects of this newly defined reality, and much yet to learn. I learned a long time ago that the blessings that come along with a special-needs child are immense—and immensely beautiful. I love my little guy to pieces. Doesn’t that grin just make you melt? Oh, he is the sweetest boy! I was laughing last week because four separate people—two different PTs who saw him on separate days, his speech therapist, and her assistant—all remarked to me, spontaneously, independently, a variation on the same exact statement: “Your son is so much fun to work with! What a sweetheart he is.” 🙂

Ain’t that the truth.

Good grief, somebody clean that kid’s glasses!