The other week I mentioned (in passing) that I was training for an 8k race, the Crazylegs Classic. Which took place this morning.
In the spirit of the Many post, perhaps I should have mentioned that between the run and the walk versions of the event, there were almost 20,000 participants registered. And I went alone, though I was technically part of a team from the university library system. One consequence of Joy's full therapy schedule is that I generally can't bring family along to cheer when I race, so this was a solo event in a sea of many.
To get that many runners onto a course, you can't start everybody all at once. The top-flight runners get to start first, and then everyone else gets assigned to a different clump of runners depending on your pace. I was in the 36th wave out of 44, which meant that since they were trying to start one wave per minute, my wave started over ten minutes after the race had already been won.
But the neatest thing happened as I lined up with my fellow potential-slow-pokes. I ended up standing next to another mom, just about my age, who was running her first 8k race. And she just happened to have a little daughter with special needs. Like epilepsy. And a tendency to slip away and escape. And communication issues. And a high pain tolerance.
We chattered non-stop while we moved slowly up to the starting line. And then we ran together and kept each other going, surely faster than either of us would have been alone. We had each (optimistically) guessed that we'd make an 11-minute-mile pace, which is what got us assigned to the same wave. I ended up being just a little slower in the last half-mile where she was able to pull ahead -- but she was waiting for me at the finish line. We'd both run the entire way.
My pace per mile was 10:20. Woo hooooo!
I hadn't thought that blogging about an 8k race would be about special-needs mamas helping one another out. But there you have it.
The other day when we were playing out on the deck (Joy was pedaling around the deck on her trike, woo hoo!), Rose asked an unexpected question.
"Do I have a little bit of autism too?"
I wish I'd thought to ask her what exactly was on her mind.
Instead I said something like, when someone has one little thing that's part of autism, we don't call it autism. You have to have a lot of things that are part of autism for it to be autism. But probably most people have one or two or more little things.
And then something else interrupted the conversation, I don't even remember what.
On Monday I mentioned that we've been hearing many vocalizations from Joy. I thought you might like to hear about some of the things she's had to say lately.
JoyDad told me about an interaction at snacktime earlier this week. Joy was drinking juice (from an open cup, yeah!) using both hands to lift the cup. JoyDad was doling out the pretzel sticks a few at a time. At one point he offered sticks while she had the cup in the air with both hands. "Joy, do you want more?" He said you could just see the wheels turning as she thought about making the "more" sign but realized both hands were already occupied. And then she looked right at him and spoke.
Another lovely vocalization that has come and gone over the years has been "ma-ma". Last time I posted about it was about a year ago. Well, it's back, and it's the two-syllable word, not even the babbly "ma-ma-ma" that was coming out last time. At least for today, even if it's just for today, we're getting "ma-ma"!
By the way, that "just for today" post I just linked to? It focused on the signing of the word "more" -- which was an occasional, some-time thing back in February 09. These days, it's the most solid sign in her repertoire, over-generalized to mean "I want" as well as "more." How very far she has come!
Then there was the imitation last night, when our church fellowship group met for a cookout. Joy was exploring and rolling around in the lovely large yard, I was talking to a couple of other moms, and Rose was playing with a group of older kids halfway across the yard. Suddenly from one of the older boys in the faraway group comes an audible, "Aw, CRAP!" And what do we hear from Joy? A sweet little echo, "caa"! That was the one and only thing she chose to imitate from the other kids all evening.
And finally last night, late home from the cookout and getting ready for bed. Joy sat on the toilet a little bit, without success, and then after bath we went to her room to get her into diapers and jammies. As I was assembling the materials, she loudly announced,
What in the world was "kee," I wondered, looking around. It was a new sound, an unfamiliar vocalization. I couldn't find anything to attach it to.
And then she "kee"-ed all over the carpet. Must have been holding it in for a while, it was a major stream.
The third and final installment from the Autism Society of Wisconsin conference is the Saturday afternoon keynote by Eric Courchesne, director of the UCSD Autism Center of Excellence. His talk was called "The Neural Origins of Autism: Evidence of Prenatal and Early Postnatal Brain Growth Abnormalities."
[Note - I'll be calling him by his first name, as I did with Paula Kluth and Temple Grandin, though in each case the more formal choice would be the title "Dr."]
In contrast to Temple Grandin's wide-ranging themes, Eric's presentation built a thesis. He started by referring to a 2009 report from the Information Centre of the UK’s National Health Service that found an ASD rate of 1 in 100 among adults in England, using modern diagnostic standards. This converges with the 1 in 110 rate for children in the US as published by the CDC this past December... in other words, he was taking the stance that the autism "epidemic" has much more to do with diagnostic changes than with a true rise in the condition. (The England study has been somewhat controversial, and Eric was careful to caution that it needs to be replicated before we can give it too much weight.) Come to think of it, Temple hinted at a similar position in her presentation: "Geeks and nerds have always been here... Who do you think made the first stone spear? It wasn't all the yakety-yaks around the campfire!"
Eric went on to point out that until recently, much of the brain-scan research in autism has been done with adults. But if you want brain research to illuminate the "why," you need to start much earlier, back to the age at which atuism first begins to be apparent. So he and his wife, fellow researcher Karen Pierce, have been working on brain studies with little tykes.
One set of results focuses on brain size. It's well-established that people with ASD have unusually large brain size. Courchesne et al (2003) looked children with autism or PDD-NOS and traced their head circumference (HC) records back to infancy. The findings: birth HC of the infants with ASD was smaller than the norm, but shot up to a mean at the 84th percentile by 6-14 months. The children with autism had a greater increase in HC than the ones with PDD-NOS. [This rings true for our Joy, by the way. Her head was at the 70th percentile shortly after birth, 95th percentile by six months, above the 97th by 9 months, and has never gone below that figure since. Rose had a sizable head too, 90th percentile at 12 months, but back to the 82nd percentile by 2 years of age.] Anyway, Eric listed 7 other studies in support of this finding, starting with Dementieva et al 2005.
The next work he described involved doing sleep-MRIs on one-year-olds. To get the right group of little ones to scan, Eric and Karen have set up a network of primary care physicians who do a screener at age 12 months to identify children who show early signs of ASD. Those identified as at-risk then become potential research participants. This network & screening impresses me as a two-in-one coup, by the way -- not only does it serve the research, but it gets the kids screened! I've learned via LEND that there is surprising hesitation in the pediatric community when it comes to implementing standardized developmental screening, whether for autism or just in general.
Anyway. Not only are these MRIs confirming large brain size in children with ASDs (particularly frontal & temporal lobes) but are also showing that autistic-tyke brains are responding differently to normal speech, with activation on the "wrong" side of the brain.
So where are these brain overgrowths coming from? Is it more brain-cells, or something else? Cadaver research on small children can be a hard thing to think about because there's always a tragedy underlying, but generous research donations by bereaved families has allowed some study that actually counts brain cells -- with the astonishing result that the brains of children with ASD had an average of 55% abnormal increase in the actual number of cells!
AND. Eric drove this home hard. Almost all brain cells are generated PRE-NATALLY, second & third trimester. The overgrowth in numbers of brain cells cannot be caused by vaccines.
So why don't symptoms show till later? He showed a fascinating slide illustrating human frontal cortex development. Even though newborns have all their brain cells, those cells are small and have few connections. But between the ages of 6 months and two years, the cells themselves grow and circuit formation goes wild. At that point, the difference in number of brain cells and how they connect begins to really matter.
Eric's lab is currently studying the layers of the cerebral cortex, a process that he expects will lead to identification of genes that are implicated in layering defects. He spoke of his hope that within 6 or 7 years, that the understanding of the brain-basis of autism will jump by leaps and bounds. As he made this prediction, he became choked with emotion... "I have tremendous hope," he said.
When Eric talks about the importance of brain-based autism studies, he also speaks very strongly about the massive waste of research dollars that have been poured into the generally-discredited vaccine causality hypothesis. This infuriates him. And it's not just a casual opinion with him. It's very personal. You see, as he climbed the steps to the stage, he had to support himself with his arms because his legs don't work quite right. He had polio when he was four years old, in the last epidemic wave before polio was essentially wiped out.
He got a standing ovation at the end of his presentation.
---------- Note: sorry that my referencing of particular papers fell off after the first bit of the presentation. I thought I took better notes than that, but apparently not. Please be assured, though, that every one of the findings was backed by peer-reviewed, published articles, and that Eric took great care to mention the extent to which his work has been replicated. Unlike, and he made this point very clearly, the work of a certain Andrew Wakefield, recently retracted by the Lancet. ----------
Thus endeth my conference reporting. I hope you can see why it seemed important to me to share all three of these presentations! Thank you for hanging with me. I think that as LEND winds down, we'll be returning to our usual Joy-based programming here on Elvis Sightings.
Before the Autism Society of Wisconsin conference slips entirely out of sight in the rear-view mirror, I want to report (as promised) on the second keynote, Temple Grandin. [Note - I'll be calling her by her first name, as I did with Paula Kluth and Eric Courchesne, though in each case the more formal choice would be the title "Dr."]
Temple Grandin's book Thinking in Pictures was the first book I read after Joy's autism diagnosis that presented a perspective from within the autism spectrum. Her account sparked some of my first searching questions about the nature of autism (such as, does everyone with autism think in pictures?) I was so pleased to get a chance to shake her hand at this conference, and get her autograph on a copy of The Way I See It, which I thought I might read on the Kansas car ride, but it keeps slipping down the stack as I take one other books with deadlines like library due dates...
The talk was called An Inside View of Autism and ranged across a variety of topics. As I look at my notes, they're rather a collection of insights rather than an arc of a lecture-long argument -- but it was engaging all the way through. Temple is an accomplished lecturer, an achievement that is reportedly the work of many years. A friend of mine who was also at the conference had heard her speak over a decade ago and compared the two: at the earlier talk, she had relied on self-talk techniques such as "OK, I need to tell a joke here so you won't all get bored." Over the years, she has taught herself to weave the jokes in seamlessly and to move about the stage as a comfortable speaker often does.
Here are some nuggets from the presentation:
Remember how I mentioned in my GFCF post that Temple Grandin was a proponent of "the diet"? Well, she is, but in a more nuanced way than the folks who claim a 90% success rate. Her take: "Out of ten kids with autism, it might work for one or two." But for the people for whom it works, like herself, the improvement is a powerful change for the better. (She also mentioned Omega 3s, and cutting sugar and carbs as well as going GFCF).
My skeptical heart rejoiced to hear her lay into the "rubbish on the Internet"! She directed people to PubMed, the database search tool from the National Library of Medicine that searches published articles in biomedical sciences. (Librarian-ish note -- unless you're affiliated with a university, you'll mostly be able to get just citations and summaries of the articles. But still.)
She had high praise for the Temple Grandin HBO movie with Claire Danes. She said that the movie succeeds in portraying how her visual thinking works. As for the acting, "Claire Danes became me in a way that was really weird!" (I gotta see this movie. I usually don't miss having HBO at home, but this is one exception!)
Temple had an interesting take on behavior and manners. She has a hearty appreciation for how manners were taught when she grew up in the 1950s. It makes sense to me that a well-defined system of rules would be appealing to a mind of a certain structure! However, I've recently seen this used negatively in comments relating to a bloggy dust-up about how people see "us" (kids on the spectrum and their parents), as in: if Temple Grandin thinks that kids with autism should be taught 1950s manners, then it must be the parents' fault that they're acting out in public. Which doesn't sit well with me, having just been party to a clean-up of fist-flung jello. It's not that easy. And I'm not sure that Temple was saying that it was.
One final quote-nugget, which Temple offered in response to a question regarding trying to get appropriate services from a school district in a difficult situation. "Your project is for your son to be successful." The corollary was that being right in fighting with the school was less important than being a clever negotiator, swallowing pride when prudent to get to a place that would better support the child's success.
We're back from a full Easter long-weekend. Filled it full ourselves, by taking on a trip to my dad's place in Kansas, a 12-hour drive from here.
I'd like to say that Joy was a dream, pleasant and cooperative and at her most charming and communicative the entire time!
The truth, of course, is considerably more mixed than that.
As I look back at my past few Joy-posts, I've been doing a lot of accentuating the positive. Which is great, important, uplifting! but quite a bit less than the whole picture. Blended in with the increased vocalizations and the group hugs have been a short fuse, a renewed spate of toy-throwing and biting (self and others), a powerful unwillingness to let herself be properly cleaned during a messy diaper change.
Those unwillingnesses ramped up sharply for our Kansas trip. We thought we'd have a pleasant stop at McDonalds en route, but she threw food and refused to eat anything more than a couple of fries. We struggled with getting liquids into her the entire trip, resulting in the unfortunate digestive effects that occur when one doesn't drink just quite enough. Still haven't gotten any milk into her in the last five days. Soda and juice, can you believe. Yikes.
She flung the glasses off my face several times. I lost a handful of (increasingly gray) hair to her fist. At one point at Easter dinner she'd been happily eating a serving of jello salad with carrots, and then before we could blink, multiple fistsful of orange jello went flying all over the table. In front of ALL the relatives. Sigh.
Her grandparents were so thoughtful and kind as we planned several days' worth of visit activities. Grandma came up with a musuem to visit, called the Museum of World Treasures, with an eclectic collection for Rose and her cousin to peruse and a big upstairs playroom with an indoor bouncy castle where Joy could jump to her heart's content! I even got to sneak out and see a couple of the exhibits... and had an Elvis Sighting! a silk scarf signed by Elvis himself. How could you top that?
Another day we went to the zoo. Joy immediately wanted to climb over a fence and play in the water with the flamingos, and couldn't get over her disappointment that it wasn't allowed... until Grandma rented a sturdy stroller that gave her a chance to be wheeled around and calm down. We had a resounding success with feeding the goats! Notice how the initial hand-over-hand support faded out to nothing:
Joy rewarded Grandma with unsolicited kisses on their front porch swing. And Grandpa made a most excellent discovery that Joy liked to play in the back seat of their parked Prius! Safe, enclosed, a fine distraction.
It had been years since we made this particular visit -- since 2006, to be exact. We packed in a lot of family into the few days, including my brother (Uncle Schnirelmann) and sister-in-law, several of my uncles and aunts and cousins, step-sister & brother-in-law and their three daughters (the youngest of whom is not much older than Rose). I felt a little bad that I didn't even try to contact any of my childhood friends, but then again, I didn't even end up getting to talk much with all the relatives.
Autism Awareness Day (April 2) came and went during our travels. I didn't have anything profound or coherent to say. But I'd like to share a set of posts from Both Hands and a Flashlight for their insights on autism awareness for different audiences:
It feels a little like finding a new autism-blogger-mom for my blogroll, even though I haven't visited her blog yet.
I was pleased to be asked a couple of weeks ago to review Kathy Deyer Bolduc's new book Autism & Alleluias, as part of a blog-publicity tour thrown by her publisher Judson Press. I always love to get a new book in the mail, and the title resonated with the God Sightings theme that runs through my own blog.
In Autism & Alleluias, Bolduc shares "a love story" -- love of God and of her son Joel, a young man who has autism as well as intellectual disabilities and an anxiety disorder. In a series of short 3-5 page vignettes and poems, she offers gently faith-infused glimpses into life with Joel, starting not long before his autism diagnosis as he stands at the cusp of adolescence and concluding as he moves into his early 20s.
Each chapter / reflection / meditation begins with scripture and ends with a prayer. In between, she and Joel encounter the challenges of life in school and church and community, but also grace (alleluias) in unexpected places:
an Easter visitor who shares a new perspective on disability
a talented aide who composes a special song for Joel on the spot
Joel's own vocal and enthusiastic worship style (which fits better into some congregations than others!)
a poignant reminder from Joel himself that "We need Jesus."
The chapters not only have the cadence of a daily devotional, but also that of blog posts. (I am reminded particularly of Autism in a Word, from my dear friend Rhemashope.) With Autism & Alleluias, it feels as if we're getting the "best of" nuggets of 12 years of reflective blogging (or journaling), in one 140-page swoop! Since I blog from a desktop (and don't carry an iPhone), I was able to carry the book to places I don't blog-read, like the bus. I found myself with the impulse to post a comment after some of the chapters -- I guess that's what book groups are for.
I have not read either of the author's two earlier books, His Name is Joel: Searching for God in a Son's Disability (1999), or A Place Called Acceptance: Ministry with Families of Children with Disabilities (2001), but have them on my list now. Meanwhile, you can visit her website at http://www.kathleenbolduc.com/ if you'd like more information.