Archive for September, 2008
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!
September 29, 2008 @ 6:10 am | Filed under: Books
Posting this helpful advice from Lindsay: (and bolding the reason I thought it should be bumped up from the comments) :
Just responding to something (the other?) Melissa wrote. If you can’t get Melissa Wiley books at your local library, do ask them to get them for you through Inter Library Loan. I used to hesitate about this, thinking ILL was something reserved for scholarly work, but I’ve heard librarians from various libraries enthusiastically encourage its use. I think it’s one of those things that the more it’s used, the more “the authorities” will see that it is needed, and consequently keep up funding for it. Also, one can hope that the more specific titles are requested, the more likely word will filter back to publishers to keep them in print! (We’ve also gotten Shakespeare and opera DVDs and CDs through ILL. It’s a great resource.)
September 27, 2008 @ 4:32 pm | Filed under: Audio
A sweet reader named Jennifer writes:
I wanted to ask if you had any recommendations for the best Jim Weiss story CDs for littler ones (and/or O’Callahan—you’ve mentioned him a couple times I think?). We checked out Weiss’s Just So Stories from our library, and my oldest is loving it (as am I!), but many of the others look like they might be a bit past her comprehension right now, and certainly past her younger sisters’. Their attention for this one is spotty. We’ll be driving 10 hours next month to my best friends’ weddings, and I’d like some story CDs for the car. I’m just not sure what would best hold my girls’ attention! As I said, my oldest is 4.5, then my twins are 3, and the baby is nearly 18 months, but of course she wouldn’t really be listening anyway.
Unfortunately, Jennifer wrote me in July, so I’m responding way too late to be of help with that road trip. Sorry about that, Jennifer—I hope the weddings were fun and the drive went well!
As Jennifer had observed in my archives, we are huuuuge Jim Weiss fans here in the Bonny Glen. We even got to hang out with Jim and his wonderful wife Randi a couple of times at homeschooling conventions and once at their home in Virginia. But we were fans long before we met the Weisses in person: I remember buying our first Jim Weiss story CDs back in New York, when Jane was a wee thing. The night we had dinner at their house, my girls were utterly starstruck because Jim was a superstar in their universe. Listening to them chatter in the backseat all the way home, I was overcome with a fit of giggles—they sounded just like my high-school friend Caryn and I must have sounded when we used to gush about Duran Duran.
(If I’d been invited to dinner at John Taylor’s house in 1985, I might not have survived to tell the tale.)
Anyway. The best Jim Weiss for very small children would be, I’d say:
• Uncle Wiggly
• Tell Me a Story (that one’s a folk and fairy tale collection—includes stories like The Little Red Hen and Rumplestiltskin)
• the one with The Twelve Dancing Princesses, what’s it called? :::::hollers to children:::: Ah, yes: Best Loved Stories in Song and Dance
• and the Stone Soup one, um, Fairytale Favorites, I think is the name.
I can think of others (my girls loved the Shakespeare CD from the time they were tiny), but a list that goes on forever isn’t of much use to anyone, so I’ll stop with these.
We actually haven’t heard some of Jim’s most recent CDs, sob—that’s what we get for moving out of Virginia. Jim and Randi were kind enough to let my kids raid their shelves when we visited, and gracious enough to be pleased with a stack of my books in return.
As for Jay O’Callahan, whom Jennifer mentions in her email: we are mighty fond of him as well! Although we’ve never had the pleasure of meeting Jay in person. I first encountered his work the summer before my sophomore year in college, when I was a camp counselor at a theater camp in Missoula, Montana. One of the girls brought an O’Callahan story tape with her and I remember the girls—this was the high-school bunk, not the younger set I was in charge of—laughing their heads off over a story about two children who encounter the King of the Raisins in a strange underworld. Half-remembered phrases from the story were still haunting me almost twenty years later when I began this blog. I posted a plea with a vague description of the story—
The raisins are amiable enough despite their aversion to the strange wiggling things at the end of the children’s arms—
“What you got there, worms?”
“No, they’re fingers! See?”
(Sound of raisins screaming.) “Ahhhh! Horrible, horrible! But I like you anyway.”
And a short while later, the marvelous Lesley Austin of Small Meadow Press chimed in with the answer I’d been seeking so many years: the storyteller we were looking for was named Jay O’Callahan. I Googled accordingly, and there he was. The Raisins story is on his Little Heroes CD. To this day it remains a family favorite. Sing it with me: Raisins, raisins, all we are is raisins; big one, small ones, short ones, tall ones…
September 27, 2008 @ 2:31 pm | Filed under: Links
- Barcelona – Olympic Barcelona — Hey wouldja look at that! One of my photos has been chosen for inclusion in the Schmap guide to Barcelona. My father will be so proud. 😉
September 26, 2008 @ 8:35 am | Filed under: Books
The kids will be awake soon, so I won’t have time to do a whole shelf, but Scott (of all people! he sees these shelves every day) has been clamoring for another bookshelf post, so here goes.
Same bookcase, third shelf down:
My Charlotte Mason series: her six books, shelved here for easy access. I return to these over and over again.
A boxed set of Edward Eager novels: Half Magic, Knight’s Castle, Magic by the Lake, The Time Garden.
Not that I can actually see any of the above right now, since Scott has a bunch of music CDs stacked in front of them. But I know they’re there.
Then comes one of the several Lord of the Rings sets we own. Scott and I both brought copies into the marriage, but I think this set is much newer, a Christmas gift to one of the girls a couple of years ago.
An Old-Fashioned Girl by Louisa May Alcott.
And then my favorite Alcott, Little Men.
Mystery Train by Greil Marcus, “generally considered the first truly scholarly exploration of rock and roll, its history, its importance, and its uniquely American properties,” says my husband. I haven’t read this one, can you tell?
A biography of Richard Wagner by Robert W. Gutman. Scott’s read it, I haven’t.
Elvissey by Jack Womack. Has a library sticker on the spine so must be something Scott picked up on the discard pile. He reads a lot about music, as you can see.
Rowan of Rin by Emily Rodda, the first book in a favorite series of my girls.
The Brownie and the Princess, a collection of stories by Louisa May Alcott. I’ve not read it yet. Jane enjoyed it. She says a couple of the stories are set during the Revolutionary War. The title story, she says, is very sweet.
Exile on Main Street and In the Aeroplane Over the Sea, two books in a series called 33 1/3, which is a collection of small books, each by a different author and about a single record album. Scott has really been enjoying these lately. I’m seeing them all over the house.
Latin for Children DVDs.
And then a sideways stack of craft and home arts books:
Mrs. Sharp’s Traditions by Sarah Ban Breathnach.
Festivals, Family, and Food
Crafts Through the Year by Thomas and Petra Berger.
Magical Window Stars
The Nature Corner
Of the craft books, Rose Windows and Magical Window Stars are the ones we’ve used the most. We made a ton of the stars last year for Advent decorations. As I mentioned in the comments below (I am adding this later), these days I am more likely to turn to the internet than to books for seasonal and liturgical craft and recipe ideas.
I’ll try to come back later and add authors and Goodreads links and maybe some commentary to these titles, but morning has broken* and I need to get a move on.
*Whoops, glanced at this hours later and see that I never hit ‘publish.’
September 26, 2008 @ 6:27 am | Filed under: Rilla
Me to Rilla at bedtime last night: “You didn’t get a nap today. You must be very sleepy!”
Rilla: “Yes, I do.”
On yet another nap-deprived day:
Me, offhandedly, after Rilla snarled at her brother: “My goodness, you’re grumpy this afternoon.”
Rilla: “No I not! I MAD!”
Maybe she’s been reading about the bailout.
This is another easy one, a kind of warm-up for the overloaded shelves to come. As I mentioned yesterday, I am short, so I tend not to crowd too much onto the higher shelves. So here again, one of the living-room bookcases, second shelf from the top.
First we have a stack of books lying flat on their sides. Working from the bottom up:
Our nice big family Bible, a beautiful wedding gift from one of Scott’s cousins.
The Mary Frances Housekeeper in hardcover. Why is that way up there where no child can possibly see it, much less use it to learn to keep house? Must remedy this.
Uh-oh, an overdue sign language instructional DVD from the Deaf Missions Video Library. Must get that packaged up for tomorrow’s post-office run.
Next to this stack, filling the remaining two thirds of the shelf:
A bunch of Math-U-See DVDs.
Our Maud Hart Lovelace collection, or most of it anyway. When the Betsy-Tacy books began to go out of print, sob, I rounded up our copies and shelved them here, up high, on purpose, to ensure that they will not be lost or scattered. This explains why the children’s bathroom stepstool is very often on the floor in front of this bookcase. These are some of our most beloved books, and it seems someone around here is nearly always in the middle of one of them. What’s on the shelf right now:
Betsy-Tacy and Tib
Betsy and Tacy Go Downtown
Betsy and Tacy Go Over the Big Hill
Winona’s Pony Cart
Heaven to Betsy
Betsy in Spite of Herself
Betsy and Joe
Betsy and the Great World
Emily of Deep Valley (my favorite; I posted about it here)
Carney’s House Party
Winona’s Pony Cart (yes, a second copy, this one in hardcover—my editor at Harper knew what a fangirl I am and sent me some extra copies she had lying around)
(So it looks like Betsy Was a Junior is in circulation somewhere.)
The first four are the “young Betsy” books—she starts out five years old and is, I think, about ten in the fourth book. (Isn’t Big Hill the one where they sing “O Betsy’s ten tomorrow and then all of us are ten! We will all be ten tomorrow; we will all be ladies then…” to the tune of The Battle Hymn of the Republic?) The Winona book belongs in that time frame; the girls are around eight years old, I think; but it’s a stand-alone story and I like it better after Big Hill.)
Then come the four high-school books, which are a deep delight, and then Great World and Betsy’s Wedding. The books about Carney and Emily come before Betsy’s wedding in the Deep Valley chronology, but they were written later and once again I think it’s best not to break up the flow of Betsy’s own narrative. Carney is a fun treat afterward (especially the brief glimpse of her college life), because you get to go back in time a few years and see a summer of the gang’s life that wasn’t portrayed in detail in Betsy’s books, and then, well, there’s Emily of Deep Valley to put a soul-satisfying coda on the whole series.
Back to the shelf. Next to the Lovelace treasures there are some DVDs. Chris Rock, Monty Python collection, two Bruce Springsteen concerts (detect a trend?), The Office, Bob Newhart, Schoolhouse Rock. So that’s where Schoolhouse Rock is. I was looking for it.
That’s it for shelf #2. And now I’m in the mood to go read some Betsy-Tacy.
September 22, 2008 @ 3:37 pm | Filed under: Books
In the comments of this post, Patience mentioned that she’d like to know what books were on the shelf behind Her Majesty. I have often thought it would be fun to do a whole series of posts that went shelf by shelf through the house, talking about the books on each one. Of course, an awful lot of migrating goes on, so that what’s on certain shelves in high-traffic areas of the house changes day by day.
Still, it strikes me as a fun (long-term) project. One of my favorite things about visiting a friend’s house is getting to explore her shelves. I don’t think you really know a person until you know her taste in books, do you?
I’m sitting on the living-room couch right now. There are three bookcases in this room (two big and one small), plus two more in the adjoining dining area. And a stack on the piano, but those are not supposed to be there. :::glares sternly at husband:::
Beyond the piano is the hallway that leads to the bedrooms. There are three more bookcases lining the wall there, making for a somewhat narrow squeeze when you need to take the vacuum cleaner out of the hall closet, opposite the bookshelves. There really isn’t any spare wall space at all in this house: we’ve got bookcases crammed everywhere one will fit, and sometimes where they don’t fit.
So this “one shelf at a time” project could take me a while.
But it’ll be fun. (And maybe I’ll finally get my Library Thing catalog finished while I’m at it.)
I’ll start at the top: there are seven shelves on the tall bookcase directly opposite me. The top one is easiest to catalog because only half of its contents are books. The rest of the shelf is taken up by cloth cases full of Signing Time DVDs, some Bruce Springsteen concert DVDs, and our Star Trek and Star Wars DVD collections. Important stuff, is what I’m saying. Also a funny little statue of a mandolin player (well, it looks like a mandolin, at least, but I bet it’s called something else) from Thailand, a gift from our world-traveling friend Keri; a bowl of rosaries; and Scott’s electric guitar tuner, which I stick up on that shelf because I am too short to see it lying there, so it’s handy for him but I don’t get grumpy about clutter. I suppose there are advantages to having a short wife.
Anyway, the books on that shelf:
The Norton Anthology of Modern Poetry, because you never know when you might need a dose of Eliot or Auden, and also because that was the textbook for one of Scott’s very best college courses, and I know firsthand how great it was because I sat in on it a few times even though I had graduated the previous spring. It was taught by the great Dr. Susan J. Hanna, whose booming voice and infectious enthusiasm for poetry made her one of our favorite professors ever. As a matter of fact, Rilla’s (real, not blog) middle name is Susanna in her honor. (Sue Hanna, get it?)
Home Comforts, the giant tome that compiles everything anybody ever needed to know about the practical art of housekeeping. This was a housewarming present from my friend Elizabeth when we moved to Virginia seven years ago. It taught me how to fold a fitted sheet nicely, which is a grand thing.
A threadbare copy of That’s Good, That’s Bad, a picture book by Joan M. Lexau, illustrated by Aliki. Long since out of print (it was published in 1963), this was Scott’s favorite book as a little boy. We keep it on this high shelf because it’s too rickety to stand up to everyday use and must be saved for special daddy-read-aloud occasions. It’s a charming little formula story: Tiger happens upon exhausted Boy slumped on a rock in the jungle. Tiger is puzzled because Boy does not spring up and run away. “I have no more run in me,” says Boy—a phrase which has become an integral part of our family lexicon, as in: “I should really put that laundry away, but I have no more run in me.” “That’s bad,” says Tiger, and so the back and forth begins. Boy recounts a tale of narrow escapes (“That’s good!”) and harrowing dangers (“That’s bad!) as he finds himself scrambling to stay a step ahead of a very cranky Rhino. And now he’s too tuckered out to run away from Tiger, who plans to eat him. That’s bad. Very, very bad. I don’t want to give away the ending, but it’s Good.
A fancy leatherbound edition of Douglas Adams’s The Ultimate Hitchhiker’s Guide: Five Complete Novels and One Story, which I believe was a graduation present to Scott from a brother and sister-in-law. It is a thing of beauty.
And finally, the rest of the shelf is taken up by a boxed set of four mammoth leatherbound volumes: collections of the work of Mark Twain, Edgar Allen Poe, Charles Dickens (not his complete works, of course—that would take up the whole shelf), and The Complete Sherlock Holmes. That is, there’s a hole where the Holmes is supposed to go. Jane laid claim to Mr. Holmes two years ago and the book hasn’t been back in the box since.
So that was the easy shelf. Only eight books. It’s when I get to the picture book shelves that this becomes challenging. And I’m not even going to attempt the shelves full of comic books in the garage. Too skinny: too many.
September 22, 2008 @ 2:13 pm | Filed under: Carnivals
This month’s host is Jenny’s Wonderland of Books. Enjoy!