Some snippets of warm weather delight, to entertain you while we're on vacation! Joy is so pleased with our little inflatable whale pool this year, even the little sprinkler-spout on the front -- which she didn't like at all last summer. Not that we had many swimmy-days in 2009, anyway. This summer is starting much warmer, much earlier...
Sunday, May 30, 2010
Thursday, May 27, 2010
Product Hits and Misses: All Terrain Tricycle
I've just changed one little thing in the sidebar -- Miss Joy is no longer 5 years old, but SIX! Happy birthday, sweetheart!
JoyDad and I decided a while ago that our gift to her would be a new tricycle, more suitable to her size. She'd finally this spring started riding the sweet little trike handed down from her sister, just as she got to the point of outgrowing it!
So we went online to see what we could find for a big-kid trike. We didn't need anything adaptive, mind you. Just something that acknowledged (universal-design-wise) that sometimes bigger kids like to ride trikes too, whatever their neurology. What we found was way outside our price comfort zone. We were not particularly interested in dropping between $150 and $250 on a tricycle, no matter how right-sized and sturdy!
Fortunately our school-district team came up trumps. The PT at Joy's school recommended a trike from Harbor Freight, which has a local store here. The product is called the All-Terrain Tricycle, and the full price is an eminently-reasonable $59.99 (plus shipping if you order online.) Apparently this item goes on sale frequently. We paid $50; as of this writing, it's $42.99 online.
The trike comes partially-assembled in a box:
The assembly instructions were poor, but the assembly was intuitive enough I had no problem. It was half an hour from box-opening to all-cleaned-up, with photography included!
The trike rolls easily, is plenty tough, and has multiple holes for setting the seat closer or further back depending on how long your kiddo's legs are. Downsides are minimal. The seat is a little too tilted for my taste; the front tire assembly pivots all the way around, as opposed to our smaller trike that didn't let you turn it too far; and, the new-materials smell from the tires was so strong we couldn't store the box in the house!
Other than that, though, it's an excellent bang for the money, and I think Joy will do just fine with it. I'll write more about the presentation of the gift, and other birthday-celebratory reflections, after we're back from our traditional Memorial Day pilgrimage to the Upper Peninsula of Michigan. Happy long weekend, everyone!
JoyDad and I decided a while ago that our gift to her would be a new tricycle, more suitable to her size. She'd finally this spring started riding the sweet little trike handed down from her sister, just as she got to the point of outgrowing it!
So we went online to see what we could find for a big-kid trike. We didn't need anything adaptive, mind you. Just something that acknowledged (universal-design-wise) that sometimes bigger kids like to ride trikes too, whatever their neurology. What we found was way outside our price comfort zone. We were not particularly interested in dropping between $150 and $250 on a tricycle, no matter how right-sized and sturdy!
Fortunately our school-district team came up trumps. The PT at Joy's school recommended a trike from Harbor Freight, which has a local store here. The product is called the All-Terrain Tricycle, and the full price is an eminently-reasonable $59.99 (plus shipping if you order online.) Apparently this item goes on sale frequently. We paid $50; as of this writing, it's $42.99 online.
The trike comes partially-assembled in a box:
The assembly instructions were poor, but the assembly was intuitive enough I had no problem. It was half an hour from box-opening to all-cleaned-up, with photography included!
The trike rolls easily, is plenty tough, and has multiple holes for setting the seat closer or further back depending on how long your kiddo's legs are. Downsides are minimal. The seat is a little too tilted for my taste; the front tire assembly pivots all the way around, as opposed to our smaller trike that didn't let you turn it too far; and, the new-materials smell from the tires was so strong we couldn't store the box in the house!
Other than that, though, it's an excellent bang for the money, and I think Joy will do just fine with it. I'll write more about the presentation of the gift, and other birthday-celebratory reflections, after we're back from our traditional Memorial Day pilgrimage to the Upper Peninsula of Michigan. Happy long weekend, everyone!
Tuesday, May 25, 2010
To What Can We Attribute This?
I'd like to share another snippet of the conversation with Joy's excellent primary care doctor, from the appointment at which we reversed course on the surgery.
After I had recounted several aspects of the wonderful new developmental stuff that we've been seeing with Joy, he asked me a question. I don't remember his exact words, but the sense was: Why do you think this is happening? What's the cause, do you suppose? To what can we attribute this?
My answer was along the lines of: well, we don't really know. We haven't really tried anything new. Maybe it has something to do with springtime. Maybe we've just finally had the seizures under control long enough. Also all the good work we've been doing with intensive therapy -- and, of course, she's growing up!
He affirmed my assessment of the situation.
(Interesting to think that it if it had been "neurotypical" Rose who'd had a huge developmental spurt, nobody probably would have even thought to ask the question...)
Now just think how different that assessment might have been if we had decided in, say, February to start Joy on the GFCF diet. Or hyperbaric oxygen therapy. Or any one of the therapies from the "alternative intervention assignment" we did in LEND seminar.
We might then consider Joy living proof of the miracle powers of whatever-therapy, even though all the gains would have happened anyway.
This thought isn't original with me. I've cribbed it from Viktoria at Conductive Upbringing, who recently told such a story about India, a lovely young lady who has cerebral palsy. Recently and unexpectedly, with no new therapy to attribute it to, India suddenly grabbed and slurped an entire glass of pink-milk through a straw, where previously she'd demonstrated no willingness or ability to drink so much, so unassisted.
Viktoria tells this story in a well-documented, evidence-based, thoughtful post about the hyping of stem-cell therapy as a cure for cerebral palsy. In previous posts she took on hyperbaric oxygen therapy (yes, the purveyors of HBOT would have you believe that it works wonders for CP as well as autism), and magnetic therapy.
Fortunately, since India (like Joy) was not receiving any such therapy at the time, we can celebrate the amazing powers of human development. What miracles we are, every one of us, when you come to think about it!
After I had recounted several aspects of the wonderful new developmental stuff that we've been seeing with Joy, he asked me a question. I don't remember his exact words, but the sense was: Why do you think this is happening? What's the cause, do you suppose? To what can we attribute this?
My answer was along the lines of: well, we don't really know. We haven't really tried anything new. Maybe it has something to do with springtime. Maybe we've just finally had the seizures under control long enough. Also all the good work we've been doing with intensive therapy -- and, of course, she's growing up!
He affirmed my assessment of the situation.
(Interesting to think that it if it had been "neurotypical" Rose who'd had a huge developmental spurt, nobody probably would have even thought to ask the question...)
Now just think how different that assessment might have been if we had decided in, say, February to start Joy on the GFCF diet. Or hyperbaric oxygen therapy. Or any one of the therapies from the "alternative intervention assignment" we did in LEND seminar.
We might then consider Joy living proof of the miracle powers of whatever-therapy, even though all the gains would have happened anyway.
This thought isn't original with me. I've cribbed it from Viktoria at Conductive Upbringing, who recently told such a story about India, a lovely young lady who has cerebral palsy. Recently and unexpectedly, with no new therapy to attribute it to, India suddenly grabbed and slurped an entire glass of pink-milk through a straw, where previously she'd demonstrated no willingness or ability to drink so much, so unassisted.
Viktoria tells this story in a well-documented, evidence-based, thoughtful post about the hyping of stem-cell therapy as a cure for cerebral palsy. In previous posts she took on hyperbaric oxygen therapy (yes, the purveyors of HBOT would have you believe that it works wonders for CP as well as autism), and magnetic therapy.
Fortunately, since India (like Joy) was not receiving any such therapy at the time, we can celebrate the amazing powers of human development. What miracles we are, every one of us, when you come to think about it!
Sunday, May 23, 2010
Mythbusters
One of the JoyFamily's favorite TV shows -- other than anything on the Food Network -- is the Discovery Channel's Mythbusters. As their website describes it,
the MYTHBUSTERS mix scientific method with gleeful curiosity and plain old-fashioned ingenuity to create their own signature style of explosive experimentation.
What the show's five attractive but geeky mythbusting co-hosts do is take a pop-culture myth, often a common trope from movies or cartoons: Can you really slip on a banana peel? Is it truly possible to knock someone's socks off a la Charlie Brown on the pitcher's mound? Then they plot out test-able hypotheses, generally involving a healthy dollop of physics and preferably involving either explosions or car crashes. And then they perform the experiments, record and examine the results, and re-formulate for follow-up attempts. Many shows end with a solemn-yet-gleeful declaration that "This myth is... BUSTED!" Or in some cases, the myth is confirmed, but with caveats -- they were, for example, eventually able to knock the socks off a crash-test dummy, but it took a semi-truck to generate the appropriate impact!
And it doesn't even feel like a science lesson, and is aimed to appeal to adults as well as kids. Magnificent. (JoyDad and I think that the co-hosts have THE BEST jobs!)
Well, out there in the real world, scientific researchers actually do sometimes get to bust myths, though it's rarely so quick and flashy and explosive and definitive.
There's been some fascinating reporting on the annual IMFAR conference, the International Meeting for Autism Research, coming out of the blog Left Brain/Right Brain these past few days. Two presentations in particular had interesting myth-busting overtones.
One of the studies took on the widely-quoted but poorly-sourced notion that the divorce rate for couples raising children with autism hovers around 80%. A certain set of bloggers have suspected for some time that the rate is way overblown; I think I first read about the lack of a scientific source for the 80% figure on AutismVox.
The mythbusting study presented at IMFAR this weekend came out of the Kennedy Krieger institute in Baltimore. Brian Freedman and his co-authors examined data from the 2007 National Survey of Children's Health and found, as reported at Left Brain/Right Brain,
The weighted unadjusted percentage of children with ASD belonging to a family with two married biological or adoptive parents was 64%, as compared to 65.2% for children who do not have an ASD.
In other words, the percentage of kiddos with ASD living in two-parent families is essentially the same as for kiddos without ASD. In the absence of any evidence other than hearsay to support the 80% figure in the first place... this myth is BUSTED.
It's important to have the record straight on this because when a child gets a diagnosis of ASD, it's an immense thing for parents to process. Now imagine that when you're told that your child has autism, you're also told that the chances of your marriage breaking up are 4 out of 5. As the lead author of the study put it, it's "almost like getting a diagnosis of autism and a diagnosis of divorce at the same time." Here's hoping that this study really does put the autism divorce rate myth out of its misery.
I hadn't been aware that the divorce-rate study was underway, but had been tracking another study that was presented at IMFAR -- this one out of the University of Rochester, looking at the gluten-free casein-free (GFCF) diet for autism. I blogged about this back in February when I and two fellow trainees presented on the GFCF diet in our LEND seminar. The GFCF diet is a hot topic in autism treatment, with lots of families on board and claims of efficacy rates as high as 80 or 90 percent.
The double-blinded, placebo-controlled study at the University of Rochester took on the difficult task of getting all the children in both study groups onto the same GFCF diet and similar behavioral treatment programs, and then gave one of the groups small amounts of gluten & casein in "challenge snacks" to see whether it would make a difference. The children had been screened in advance for celiac disease and intolerances to wheat and dairy; it's already known that GFCF can help in those situations, but the study wanted to examine whether the diet "worked" when THE issue was autism.
The findings? In the words of Susan Hyman, the principal investigator,
It would have been wonderful for children with autism and their families if we found that the GFCF diet could really help, but this small study didn’t show significant benefits.
The tangled thicket of gastrointestinal issues and autism won't be solved by any single study. The GFCF episode of Autism Mythbusters isn't over by a long shot. But this study is an important piece of evidence on the -- dare I say -- "busted" side of the ledger.
Saturday, May 22, 2010
Unexpected, Times Four
More so than usual, we're having to expect the unexpected around here.
Last night we had FOUR verbal "unexpecteds" from Joy, just between supper and bed.
First was during the meal, when I was coaxing her to eat some sweet red pepper. "Peh-puh!" she imitated me, unasked. And then gave a great big grin, apparently loving the way the word felt, exploding through her lips. Lots of "peh-puh"s and giggles for the rest of the meal, and ate the whole helping!
Then a little ways into her evening therapy session, she led her barista-dude over to the gate by the basement stairs and signed "open". "Oh, do you want to go downstairs?" he asked. I don't know as how I can properly represent the version of "downstairs" that she echoed, but it was definitely an unsolicited imitation.
Then after the session was over and she & I were hanging out on the living room couch, she reached for the buttons on the fleece cardigan that I wear around the house. She's fascinated with those buttons, but had never named them for me. I said nothing, she said "buh-buh"!
And last but not least, we had a spectacular unexpected while getting ready for the bath. Joy has been on an anti-potty kick lately, preferring to throw herself to the ground or anything else but sitting on the seat -- and here we'd been planning a big potty-training push over the summer. So I did a little experiment. Brought in a candy treat, and when she threw herself to the floor I caught her eyes and told her, "First potty, then candy." And she let herself be led to the toilet to sit. Then I told her, "We'll count to ten!" And I counted out slowly, "One, two, three..." and when I hit "nine," she finished up for me with a great big "TEH!"
This is even more amazing in that we almost NEVER count all the way to ten with her. Most often we'll go to three, in a one-two-three-GO context.
What else does Joy know, that I don't know she knows? (Or should I say, what Elvis does she know?)
Last night we had FOUR verbal "unexpecteds" from Joy, just between supper and bed.
First was during the meal, when I was coaxing her to eat some sweet red pepper. "Peh-puh!" she imitated me, unasked. And then gave a great big grin, apparently loving the way the word felt, exploding through her lips. Lots of "peh-puh"s and giggles for the rest of the meal, and ate the whole helping!
Then a little ways into her evening therapy session, she led her barista-dude over to the gate by the basement stairs and signed "open". "Oh, do you want to go downstairs?" he asked. I don't know as how I can properly represent the version of "downstairs" that she echoed, but it was definitely an unsolicited imitation.
Then after the session was over and she & I were hanging out on the living room couch, she reached for the buttons on the fleece cardigan that I wear around the house. She's fascinated with those buttons, but had never named them for me. I said nothing, she said "buh-buh"!
And last but not least, we had a spectacular unexpected while getting ready for the bath. Joy has been on an anti-potty kick lately, preferring to throw herself to the ground or anything else but sitting on the seat -- and here we'd been planning a big potty-training push over the summer. So I did a little experiment. Brought in a candy treat, and when she threw herself to the floor I caught her eyes and told her, "First potty, then candy." And she let herself be led to the toilet to sit. Then I told her, "We'll count to ten!" And I counted out slowly, "One, two, three..." and when I hit "nine," she finished up for me with a great big "TEH!"
This is even more amazing in that we almost NEVER count all the way to ten with her. Most often we'll go to three, in a one-two-three-GO context.
What else does Joy know, that I don't know she knows? (Or should I say, what Elvis does she know?)
Labels:
autism,
Elvis sighting,
Joy,
language,
rewards,
toilet training,
words
Friday, May 21, 2010
Spring Shearing
Rose has been growing out her hair for quite a while, other than a trim or two. She had planned to let it grow out enough to cut a 10-inch-long donation to Locks of Love, but it was starting to be a hassle to comb and otherwise care for, and she wanted it out of her face.
So she asked me to cut it short.
Came out pretty cute, if I do say so myself, though that perhaps has more to do with the wearer of the hair than with my scissoring skills. The 6+ inches of hair that came off was not wasted -- she had heard in her 2nd-grade class that there was an organization collecting hair to make into booms to soak up oil from beaches (the Gulf spill will surely be soiling beaches soon, alas). I did some poking around and found out that the salon where I usually go is sending their hair-clippings to A Matter of Trust this month. When I went for a cut this week, I took Rose's clippings as well, along with some fur that she'd pulled out of our indignant shedding rabbit's hindquarters.
JoyDad got a cut there too earlier this week, which leaves just one of us.
Longtime readers will remember the hair-pulling, hair-cutting drama last spring. The April 2009 shearing looked like this:
Guess what happens when you let a buzzcut grow out for a whole year?
It turns into the most lovely regular feathery layers you've ever seen.
I just can't stand to cut it yet, even though it's starting to get long enough that Joy puts it into her mouth sometimes, and it's also becoming a hassle to comb after bath.
I'll never manage layers like that again, unless we bring back the buzzcut. Which is not on the agenda right now, even if all the cool/beautiful women have tried it!
Maybe when the weather gets warmer, I'll figure out a new hairstyle for Joy, somewhere in between the shearing extremes.
So she asked me to cut it short.
Came out pretty cute, if I do say so myself, though that perhaps has more to do with the wearer of the hair than with my scissoring skills. The 6+ inches of hair that came off was not wasted -- she had heard in her 2nd-grade class that there was an organization collecting hair to make into booms to soak up oil from beaches (the Gulf spill will surely be soiling beaches soon, alas). I did some poking around and found out that the salon where I usually go is sending their hair-clippings to A Matter of Trust this month. When I went for a cut this week, I took Rose's clippings as well, along with some fur that she'd pulled out of our indignant shedding rabbit's hindquarters.
JoyDad got a cut there too earlier this week, which leaves just one of us.
Longtime readers will remember the hair-pulling, hair-cutting drama last spring. The April 2009 shearing looked like this:
Guess what happens when you let a buzzcut grow out for a whole year?
It turns into the most lovely regular feathery layers you've ever seen.
I just can't stand to cut it yet, even though it's starting to get long enough that Joy puts it into her mouth sometimes, and it's also becoming a hassle to comb after bath.
I'll never manage layers like that again, unless we bring back the buzzcut. Which is not on the agenda right now, even if all the cool/beautiful women have tried it!
Maybe when the weather gets warmer, I'll figure out a new hairstyle for Joy, somewhere in between the shearing extremes.
Thursday, May 20, 2010
Paradise
Rose decorated our front step with chalk on Tuesday after dinner.
Welcome to a house filled with fun!
Paradise at home
When I saw it, my first reaction was to think "Girl-child, have you forgotten how you and I were yanging at each other this morning over piano practice and homework?" You-just-don't-GET-it(sigh/eyeroll) vs. that-is-not-a-respectful-way-to-talk-to-your-mother, etc. Pre-teen fulminations from an 8-year-old mouth, impatient mama, eventually near-tears on both sides, this was not Garden of Eden stuff.
Then I realized -- she hadn't forgotten in the slightest. The sidewalk decoration was an oblique kiss-and-make-up.
I love you too, sweetheart!
Tuesday, May 18, 2010
Motivation
Joy has learned a new sign.
It was just over two weeks from the point at which I was taught the sign in April (and started using it sporadically) to the point at which she demonstrated conclusively that she understood the sign without a spoken word.
After that, I started doing hand-over-hand to have her make the sign as well.
This past weekend, she grabbed JoyDad's hands to have him make the sign.
Then later she made the sign all on her own.
Here's a web site where you can see a demonstration of the sign.
Here's what she's asking for.
Video. Baby Einstein video, to be precise. She's also vocalizing, a little sound halfway between "vuh-voh" and "fuh-foh".
It's all about the motivation, baby!
It was just over two weeks from the point at which I was taught the sign in April (and started using it sporadically) to the point at which she demonstrated conclusively that she understood the sign without a spoken word.
After that, I started doing hand-over-hand to have her make the sign as well.
This past weekend, she grabbed JoyDad's hands to have him make the sign.
Then later she made the sign all on her own.
Here's a web site where you can see a demonstration of the sign.
Here's what she's asking for.
Video. Baby Einstein video, to be precise. She's also vocalizing, a little sound halfway between "vuh-voh" and "fuh-foh".
It's all about the motivation, baby!
Labels:
Baby Einstein,
Joy,
motivation,
signing,
vocabulary
Thursday, May 13, 2010
Reconsidered
A foolish consistency is the hobgoblin of little minds...
-- Ralph Waldo Emerson
I am a huge fan of Joy's primary care doctor. He specializes in special needs, and really seemed to "get" Joy, from the very first visit.
We had a pre-op appointment this week in advance of Joy's scheduled hernia surgery. Actually at the time we scheduled it, it was going to be for the combined scar-reduction & hernia surgery, but in the wake of the insurance company's decision to deny the scar-reduction, we had settled on doing just the hernia surgery. This was our first chance to talk to Joy's primary care doc about that decision.
He was properly appreciative of Joy's amazing developmental explosion. He was also on the ball with a thought that hadn't occurred to us -- that when one of his patients with special needs has a surgical procedure under sedation/anesthesia, he likes to take the opportunity for a blood draw and test all those levels that you don't get a chance to do without quite a bit of trauma otherwise.
But then he told me that he wanted us to think very carefully about our decision. The hernia is really tiny, he said -- it had made sense to fix in context of the other (now cancelled) procedure, and given JoyDad's hernia history he'd still back us up if we decided to go ahead. But to him, it didn't seem that the hernia posed a serious issue, and certainly not an imminent one. We can always continue to monitor it, and decide on surgery later if it seems to be getting worse. And -- here was the kicker -- he asked us if we were sure we wanted to run the risk of interfering with Joy's recent developmental trajectory right now.
If there's one thing we don't want to do, it's torpedo all these amazing gains. We'd thought about that angle, but hadn't perhaps taken it seriously enough.
So, we've cancelled the surgery. It's kind of a relief to have such a fine reason to reconsider.
Thanks for all the positive thoughts!
Labels:
development,
insurance,
Joy,
language,
surgery
Sunday, May 9, 2010
More Things To Say
It is hard to believe that it's been three weeks since my Some Things to Say post.
It is hard to believe that it's ONLY been three weeks since my Some Things to Say post.
In a nutshell: it wasn't all just-for-that-day.
Joy's speech and all-around developmental burst has continued at an awesome pace. There is literally something new every single day. To put this into perspective, we've had stretches where if there were even one of these new things in two weeks' time, we'd have been over the moon with delight.
Joy is now vocalizing regularly with her signs (more, open, all-done).
She is chiming in at the end of each line of familiar songs if we pause and leave off the last word, including a long-awaited return of the bed-time lullaby chime-ins.
She is waving and speaking both for greeting ("hi!") and farewell ("buh-bye!")
She is imitating familiar words, particularly when prompted.
"Joy, can you say 'coffee'?" (We have a tradition in the grocery that she gets to smell the open bag of bulk coffee beans.)
"FEE-fee!"
"Joy, tell me 'gold-fish'!" (Goldfish crackers at snack).
"Fee-fsh!"
"Want some music?" (Baby Einstein soundtrack on CD).
"muh-ick!"
Besides the songs she chimed in on, here are -- surely just some -- of the words she attempted yesterday, either in imitation (often prompted) or initiation.
Coffee, goldfish, music, candy, kiss, pear, chip, go, open, bye-bye, ball, more, drink, juice, lion, cracker.
Happy, happy Mother's Day!
It is hard to believe that it's ONLY been three weeks since my Some Things to Say post.
In a nutshell: it wasn't all just-for-that-day.
Joy's speech and all-around developmental burst has continued at an awesome pace. There is literally something new every single day. To put this into perspective, we've had stretches where if there were even one of these new things in two weeks' time, we'd have been over the moon with delight.
Joy is now vocalizing regularly with her signs (more, open, all-done).
She is chiming in at the end of each line of familiar songs if we pause and leave off the last word, including a long-awaited return of the bed-time lullaby chime-ins.
She is waving and speaking both for greeting ("hi!") and farewell ("buh-bye!")
She is imitating familiar words, particularly when prompted.
"Joy, can you say 'coffee'?" (We have a tradition in the grocery that she gets to smell the open bag of bulk coffee beans.)
"FEE-fee!"
"Joy, tell me 'gold-fish'!" (Goldfish crackers at snack).
"Fee-fsh!"
"Want some music?" (Baby Einstein soundtrack on CD).
"muh-ick!"
Besides the songs she chimed in on, here are -- surely just some -- of the words she attempted yesterday, either in imitation (often prompted) or initiation.
Coffee, goldfish, music, candy, kiss, pear, chip, go, open, bye-bye, ball, more, drink, juice, lion, cracker.
Happy, happy Mother's Day!
Saturday, May 8, 2010
Product Hits and Misses: Universal Design Edition
In honor of the LEND program from which I just graduated yesterday (!!), I've got one more seminar topic to pay forward.
So for quite a few years, the vegetable peeler of choice in my kitchen has been the Good Grips peeler from OXO. It's got a comfy wide handle, it's sharp as the dickens, and it slices off a nice thin reliable peel every time. Been using it for years.
What I didn't know until recently was that this product was originally designed to make vegetable-peeling more comfortable for people with arthritis -- as well as everyone else. Now, if they'd viewed and advertised it solely for the arthritis market, it would have been a tiny little adaptive niche item, sold in special needs catalogs, nobody who didn't have arthritis would have thought to buy it and even those who did would be aware of a certain stigma of using such an item ("sigh, it's a great product but it just makes me feel so old!") But that's not what they did. They had the foresight to realize and capitalize on the fact that what was good for arthritis in this product would be good for a whole lot of people, with or without vegetable peeling challenges -- and they've got a whole line of highly popular kitchen utensils now.
The Good Grips peeler is a fine example of Universal Design.
Universal Design is defined as "the design of products and environments to be usable by all people, to the greatest extent possible, without the need for adaptation or specialized design." The concept rests on seven principles, which are spelled out in detail at the Center for Universal Design at NC State University. I'm going to list just the principles and their basic definitions here:
We had some interesting small-group work in the seminar, each table of students analyzing a group of products that were placed on our table, and then making forays through the building to critique design issues from the perspective of case-study scenarios -- if you were a person with certain challenges and needed to do a certain daily-living sequence of tasks in the building, how does the current setup help or hinder?
It made me think of some everyday products and some recent experiences with Joy.
Consider these two battery-powered toothbrushes:
The Dora-toothbrush on the left, from Colgate, is the first one we tried when we decided to try the battery-powered toothbrush thing with Joy. It was a good success. She can turn it on and off herself with minimal support (the pink buttons just above Dora's head), and likes the feel of it in her mouth.
However, eventually it wore out, and when I went to get another one (I think I'd forgotten which store I'd gone to), the Colgate/Dora one wasn't there. So I grabbed the one on the right, the Little Mermaid from Oral B.
Not a good move. Not only was the toothbrush kind of ugly -- the lithe form of the Little Mermaid doesn't lend itself well to wrapping around batteries! Look at the on/off switches -- the on switch is right between her clam-shell bikini, while the lower button approaches her maiden-bits. Why didn't the designer dude (it HAD to have been a guy) just put the on-off switches horizontally, press the right clamshell for on and the left for off -- but I digress. More importantly, the buttons were hard to push. Joy couldn't summon that extra force, and got very frustrated with it. In addition, the bristle-movement was more extreme, and if you didn't get the brush into your mouth right away (and Joy's not that fast with it), it would fling little bits of toothpaste around.
Big universal-design fail on the "low physical effort" principle, plus being ugly and kinda demeaning. We went back out and sought Dora in particular. Accept no substitutes.
Here's another example from our everyday life -- the door handles of our two vehicles.
Our Honda CR-V, which we've had for 10 years now:
Joy cannot yet operate this handle. It takes a pretty sturdy pull, and you pretty much have to wrap your hand around the handle to do it. (Principle 6, low effort). It also doesn't pull straight out, but pivots such that the right side stays in place and it's really the left side that you're pulling out (Principle 3, intuitive).
Fortunately things are better from the inside, when it comes to pulling the door shut:
Look at that nice long snaky handle, with multiple places and heights to grab and pull. You could even use that holder-space lower down as a place to pull if that were more comfortable for you. (Since we have the child-lock on at all times, the door-open handle from the inside doesn't enter our calculations at this point). Joy does well at pulling the door closed, though it's kind of a heavy door and does take some effort.
Then we have our new car, the Honda Fit that we got just about a year ago. With this car, Joy can let herself in.
The handle pulls up, pivoting along the entire top length, with a minimum of effort. As long as you get your fingertips under, you don't have to wrap your hand or anything.
But oh no, what did they do to the inside?
There's only one little place to put your hand and pull. And it's only at one height, which isn't a good height for Joy because she's buckled into a car-seat by the time she needs to close that door. Fortunately she can do it if she stretches. And the door pulls easily, which is a plus. But why couldn't they have provided options, like the long snaky inside pull-bar did in the CR-V? (Principle 2: Flexibility in Use.)
I want to leave you with one final statement here, something that one of my LEND-trainee colleagues quoted in his final Leadership Presentation the other week. The quote applies to systems of health care, and it struck me as really thought-provoking, implying the applicability of universal design for systems well beyond toothbrushes and veggie peelers and car door handles:
It's not just about what's good for special needs. It's about what's good for ALL of us. Universally.
To all my readers -- thank you for providing a sounding board and the opportunity for me to reflect on this year's LEND experience. This has really been a pivotal year for me in moving toward what I want to be when I grow up! :-) The journey continues, and it's so good to have so many people sharing that journey with me.
So for quite a few years, the vegetable peeler of choice in my kitchen has been the Good Grips peeler from OXO. It's got a comfy wide handle, it's sharp as the dickens, and it slices off a nice thin reliable peel every time. Been using it for years.
What I didn't know until recently was that this product was originally designed to make vegetable-peeling more comfortable for people with arthritis -- as well as everyone else. Now, if they'd viewed and advertised it solely for the arthritis market, it would have been a tiny little adaptive niche item, sold in special needs catalogs, nobody who didn't have arthritis would have thought to buy it and even those who did would be aware of a certain stigma of using such an item ("sigh, it's a great product but it just makes me feel so old!") But that's not what they did. They had the foresight to realize and capitalize on the fact that what was good for arthritis in this product would be good for a whole lot of people, with or without vegetable peeling challenges -- and they've got a whole line of highly popular kitchen utensils now.
The Good Grips peeler is a fine example of Universal Design.
Universal Design is defined as "the design of products and environments to be usable by all people, to the greatest extent possible, without the need for adaptation or specialized design." The concept rests on seven principles, which are spelled out in detail at the Center for Universal Design at NC State University. I'm going to list just the principles and their basic definitions here:
Principle One: Equitable Use -- The design is useful and marketable to people with diverse abilities.
Principle Two: Flexibility in Use -- The design accommodates a wide range of individual preferences and abilities.
Principle Three: Simple and Intuitive -- Use of the design is easy to understand, regardless of the user's experience, knowledge, language skills, or current concentration level.
Principle Four: Perceptible Information -- The design communicates necessary information effectively to the user, regardless of ambient conditions or the user's sensory abilities.
Principle Five: Tolerance for Error -- The design minimizes hazards and the adverse consequences of accidental or unintended actions.
Principle Six: Low Physical Effort -- The design can be used efficiently and comfortably and with a minimum of fatigue.
Principle Seven: Size and Space for Approach and Use -- Appropriate size and space is provided for approach, reach, manipulation, and use regardless of user's body size, posture, or mobility.
We had some interesting small-group work in the seminar, each table of students analyzing a group of products that were placed on our table, and then making forays through the building to critique design issues from the perspective of case-study scenarios -- if you were a person with certain challenges and needed to do a certain daily-living sequence of tasks in the building, how does the current setup help or hinder?
It made me think of some everyday products and some recent experiences with Joy.
Consider these two battery-powered toothbrushes:
The Dora-toothbrush on the left, from Colgate, is the first one we tried when we decided to try the battery-powered toothbrush thing with Joy. It was a good success. She can turn it on and off herself with minimal support (the pink buttons just above Dora's head), and likes the feel of it in her mouth.
However, eventually it wore out, and when I went to get another one (I think I'd forgotten which store I'd gone to), the Colgate/Dora one wasn't there. So I grabbed the one on the right, the Little Mermaid from Oral B.
Not a good move. Not only was the toothbrush kind of ugly -- the lithe form of the Little Mermaid doesn't lend itself well to wrapping around batteries! Look at the on/off switches -- the on switch is right between her clam-shell bikini, while the lower button approaches her maiden-bits. Why didn't the designer dude (it HAD to have been a guy) just put the on-off switches horizontally, press the right clamshell for on and the left for off -- but I digress. More importantly, the buttons were hard to push. Joy couldn't summon that extra force, and got very frustrated with it. In addition, the bristle-movement was more extreme, and if you didn't get the brush into your mouth right away (and Joy's not that fast with it), it would fling little bits of toothpaste around.
Big universal-design fail on the "low physical effort" principle, plus being ugly and kinda demeaning. We went back out and sought Dora in particular. Accept no substitutes.
Here's another example from our everyday life -- the door handles of our two vehicles.
Our Honda CR-V, which we've had for 10 years now:
Joy cannot yet operate this handle. It takes a pretty sturdy pull, and you pretty much have to wrap your hand around the handle to do it. (Principle 6, low effort). It also doesn't pull straight out, but pivots such that the right side stays in place and it's really the left side that you're pulling out (Principle 3, intuitive).
Fortunately things are better from the inside, when it comes to pulling the door shut:
Look at that nice long snaky handle, with multiple places and heights to grab and pull. You could even use that holder-space lower down as a place to pull if that were more comfortable for you. (Since we have the child-lock on at all times, the door-open handle from the inside doesn't enter our calculations at this point). Joy does well at pulling the door closed, though it's kind of a heavy door and does take some effort.
Then we have our new car, the Honda Fit that we got just about a year ago. With this car, Joy can let herself in.
The handle pulls up, pivoting along the entire top length, with a minimum of effort. As long as you get your fingertips under, you don't have to wrap your hand or anything.
But oh no, what did they do to the inside?
There's only one little place to put your hand and pull. And it's only at one height, which isn't a good height for Joy because she's buckled into a car-seat by the time she needs to close that door. Fortunately she can do it if she stretches. And the door pulls easily, which is a plus. But why couldn't they have provided options, like the long snaky inside pull-bar did in the CR-V? (Principle 2: Flexibility in Use.)
I want to leave you with one final statement here, something that one of my LEND-trainee colleagues quoted in his final Leadership Presentation the other week. The quote applies to systems of health care, and it struck me as really thought-provoking, implying the applicability of universal design for systems well beyond toothbrushes and veggie peelers and car door handles:
Delivery models that work for populations with special health care needs will have applicability for everyone.
It's not just about what's good for special needs. It's about what's good for ALL of us. Universally.
To all my readers -- thank you for providing a sounding board and the opportunity for me to reflect on this year's LEND experience. This has really been a pivotal year for me in moving toward what I want to be when I grow up! :-) The journey continues, and it's so good to have so many people sharing that journey with me.
Wednesday, May 5, 2010
Reflected
Enlightenment is like the moon reflected on the water.
The moon does not get wet, nor is the water broken.
Although its light is wide and great,
The moon is reflected even in a puddle an inch wide.
The whole moon and the entire sky
Are reflected in one dewdrop on the grass.
-- Dogen (Japanese Zen Master)
Monday, May 3, 2010
A Tale of Two Surgeries
We've been moving toward two different outpatient surgeries for Joy, for a while now.
One of them has to do with the scar from her nevus-removal. Joy had three surgeries in her second year of life to remove the nevus-sebaceous "blotch" from her scalp, so that it would not run the risk of cancerous changes later in life. Cosmetically, it was good to have it gone too! It healed up quite neatly, but her scalp stretched as her head grew, and now the scar is about a quarter-inch wide. Nobody notices it when her hair is long, but last year when she had a buzz cut so she wouldn't pull out all her hair by the roots, you could see it pretty clearly:
Way back when she had the surgeries, the plastic surgeon advised us that we'd probably want to do a scar-revision surgery once Joy's head had grown, maybe before kindergarten -- and that our insurance generally covered scar-reduction because it was a follow-up to the original covered surgeries. We were going to get it done last summer, but then we had other health issues to contend with and decided to wait till this year.
Meantime, we discovered that Joy has a small umbilical hernia. With many kids, little childhood umbilical hernias close up on their own by the age of 5 or so. And when it's as small as Joy's is, even past age 5 they'd normally leave it alone. But we've got a bit of a family history -- JoyDad had such a hernia that "popped" on him as an adult (as in, lots of pain and two surgeries, one on an emergency basis). Plus, Joy has unusual pain responses and isn't reliably able to show us where it hurts, just in case things did go wrong with hers.
Fortunately, the surgeons to do both procedures are in the same network. Joy's pediatrician helped us come up with the clever idea to do both the procedures in one event, so we'd only need one go-around with the anesthesia. The surgeons agreed, their schedulers got us all set up, we were on the calendar for June 2...
And then our insurance denied the scar revision. JoyDad went to a hearing to make our case, and they denied it a second time. Further pursuit of the case might involve legal consultation, and would certainly not be settled in time for the scheduled surgery date.
Our current plan is to pursue the hernia repair, but not the scar revision.
Thought experiment: what if these surgeries were for Rose instead of Joy? Would we react differently?
I can tell you right now, for Rose the scalp-scar would be a BIG DEAL. She's sensitive about her appearance, sensitive about teasing. If she reached adolescence with such a scar, it would be an emotional issue and a decided challenge to overcome (though I've no doubt she'd deal with it if need be). Pushing the case would be worth some sacrifices. I think I'd feel the need to at least consider the out-of-pocket option.
If Rose had the hernia, however, we could let it ride. She could tell us immediately if something did get to the point of hurting.
Meanwhile, Joy has shown no self-consciousness whatever about her appearance so far (and why should she, adorable as she is, in our unbiased opinion?!) She interacts with mirrors enough to be drawn to them and make funny faces -- does that mean she knows its her, though? As far as noticing teasing, we've been fortunate that she hasn't encountered it yet. Though of course she's off to school in just a few months.
But it doesn't take a scar to mark Joy as different.
Given where we are right now, and what we know about autism and about the world: the people who are sufficiently open of spirit to accept Joy for the amazing person she is, are going to be entirely unfazed by the presence of that scar.
The people who are going to be cruel to her will find plenty of differences before they even notice her scar.
Plus, the scar may simply never matter to her, even if/when she becomes aware of it. And if it does turn out to matter? Maybe that's something she ought to get to decide when she is at a point to be making such decisions.
With the hernia, though, that could potentially turn into a medical emergency. Even, possibly, way down the road when JoyDad and I might not be around, and nobody remembers that JoyDad had a hernia history. And we can't guarantee that Joy will be able to communicate about it.
So we're on the calendar for a hernia fix, still in early June. Think good thoughts for us, that the surgery goes smoothly and doesn't put any major setbacks into Joy's wonderful developmental progress these past weeks, and that we've made the wise call.
One of them has to do with the scar from her nevus-removal. Joy had three surgeries in her second year of life to remove the nevus-sebaceous "blotch" from her scalp, so that it would not run the risk of cancerous changes later in life. Cosmetically, it was good to have it gone too! It healed up quite neatly, but her scalp stretched as her head grew, and now the scar is about a quarter-inch wide. Nobody notices it when her hair is long, but last year when she had a buzz cut so she wouldn't pull out all her hair by the roots, you could see it pretty clearly:
Way back when she had the surgeries, the plastic surgeon advised us that we'd probably want to do a scar-revision surgery once Joy's head had grown, maybe before kindergarten -- and that our insurance generally covered scar-reduction because it was a follow-up to the original covered surgeries. We were going to get it done last summer, but then we had other health issues to contend with and decided to wait till this year.
Meantime, we discovered that Joy has a small umbilical hernia. With many kids, little childhood umbilical hernias close up on their own by the age of 5 or so. And when it's as small as Joy's is, even past age 5 they'd normally leave it alone. But we've got a bit of a family history -- JoyDad had such a hernia that "popped" on him as an adult (as in, lots of pain and two surgeries, one on an emergency basis). Plus, Joy has unusual pain responses and isn't reliably able to show us where it hurts, just in case things did go wrong with hers.
Fortunately, the surgeons to do both procedures are in the same network. Joy's pediatrician helped us come up with the clever idea to do both the procedures in one event, so we'd only need one go-around with the anesthesia. The surgeons agreed, their schedulers got us all set up, we were on the calendar for June 2...
And then our insurance denied the scar revision. JoyDad went to a hearing to make our case, and they denied it a second time. Further pursuit of the case might involve legal consultation, and would certainly not be settled in time for the scheduled surgery date.
Our current plan is to pursue the hernia repair, but not the scar revision.
Thought experiment: what if these surgeries were for Rose instead of Joy? Would we react differently?
I can tell you right now, for Rose the scalp-scar would be a BIG DEAL. She's sensitive about her appearance, sensitive about teasing. If she reached adolescence with such a scar, it would be an emotional issue and a decided challenge to overcome (though I've no doubt she'd deal with it if need be). Pushing the case would be worth some sacrifices. I think I'd feel the need to at least consider the out-of-pocket option.
If Rose had the hernia, however, we could let it ride. She could tell us immediately if something did get to the point of hurting.
Meanwhile, Joy has shown no self-consciousness whatever about her appearance so far (and why should she, adorable as she is, in our unbiased opinion?!) She interacts with mirrors enough to be drawn to them and make funny faces -- does that mean she knows its her, though? As far as noticing teasing, we've been fortunate that she hasn't encountered it yet. Though of course she's off to school in just a few months.
But it doesn't take a scar to mark Joy as different.
Given where we are right now, and what we know about autism and about the world: the people who are sufficiently open of spirit to accept Joy for the amazing person she is, are going to be entirely unfazed by the presence of that scar.
The people who are going to be cruel to her will find plenty of differences before they even notice her scar.
Plus, the scar may simply never matter to her, even if/when she becomes aware of it. And if it does turn out to matter? Maybe that's something she ought to get to decide when she is at a point to be making such decisions.
With the hernia, though, that could potentially turn into a medical emergency. Even, possibly, way down the road when JoyDad and I might not be around, and nobody remembers that JoyDad had a hernia history. And we can't guarantee that Joy will be able to communicate about it.
So we're on the calendar for a hernia fix, still in early June. Think good thoughts for us, that the surgery goes smoothly and doesn't put any major setbacks into Joy's wonderful developmental progress these past weeks, and that we've made the wise call.
Saturday, May 1, 2010
The Funniest Thing in the World
Want to make Joy double over with giggles?
Take a pinch of shredded parmesan cheese between your fingers and let it sprinkle down over a plateful of food.
Funniest thing in the world!
Even better is that she gets all of us to laugh with her! She anticipates the delight, waits for the cheese to come out of its container, and signs "more" through her gales of laughter. (It's a good thing we like parmesan!)
I don't have a clue why the sprinkling of parmesan cheese should elicit such a reaction, but the giggles are simply priceless.
Take a pinch of shredded parmesan cheese between your fingers and let it sprinkle down over a plateful of food.
Funniest thing in the world!
Even better is that she gets all of us to laugh with her! She anticipates the delight, waits for the cheese to come out of its container, and signs "more" through her gales of laughter. (It's a good thing we like parmesan!)
I don't have a clue why the sprinkling of parmesan cheese should elicit such a reaction, but the giggles are simply priceless.
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