Intellectual Disability

In my LEND studies this year I've heard quite a bit about the history of how, particularly in the United States, people with cognitive issues have been labelled and treated.

"Changeling" was one term, referring to the folklore idea that the human-baby must have been stolen away by supernatural creatures and replaced by one of their goblin-babies.

"Mental defective" was another brutal term, in use within the past century. With IQ tests, we began to categorize people into levels of defect: an IQ of 50-69 got you labelled a "moron", 20-49 was "imbecile," below 20 was "idiot."

Then came the term "mental retardation," intended to be more clinical and less pejorative, and less-pejorative categories of mental retardation as well (based on IQ and still in use today): mild, moderate, severe, profound.

Mental retardation, alas, has morphed into the casually-used yet incredibly cruel "R-word," and a new stew of terminology has been brewing: cognitive issues, intellectual difference, cognitive disability, intellectual disability. Until I started with the LEND course, I'd not been aware how much momentum the term "intellectual disability" has been gathering, but it's quite clearly the what's-next terminology. The American Association on Mental Retardation (AAMR) has become the American Association on Intellectual and Developmental Disabilities (AAIDD). (Even though the URL http://www.aamr.org still works rather than re-directing...)

And now it looks like the U.S. government has the prospect of officially catching up. On Thursday Nov. 19 in the U.S. Senate, Senators Barbara Mikulski (D-MD) and Michael Enzi (R-WY) introduced "Rosa's Law", modeled after recently-passed legislation in Maryland. According to a news release from the Autism Society of America,

this legislation would substitute the outdated, stigmatizing terms “mental retardation” and “mentally retarded” with the terms “intellectual disability” and “individual with an intellectual disability” in federal health, education and labor policy statutes.

I like it. I think it's a good direction.

I have to wonder, though, what's the next "R-word" that will stem from the term "intellectual disabilities." It's discouraging to see perfectly good words turn into pejoratives. "Bus", for example, a mode of transportation. "Short," which might be used to describe a story or a stack of pancakes. Put them together with a taunting tone to the voice, and "She rides the short bus" turns into yet one more episode of pain in our children's world.

It also strikes me that here I am talking about intellectual disability as if it applied to Joy... but what does that really mean? Certainly she'd not score very impressively on an IQ test at this point. But there's an awful lot that IQ tests don't capture, and autism and IQ tests have a particularly problematic relationship, something that I really probably ought to do some more reading about. Just for starters, there are so many stories of people with autism who were written off... and then eventually tapped in to a workable means of communication and began to share their amazing minds with the world. Is the relationship of difference to disability something other with autism than it is with other conditions?

In Friday's LEND seminar, we had a lecture about autism and genetics, in which one of the introductory slides on co-morbidities quoted a rate that 50-75% of autistic children have intellectual disability. Joy's umbrella condition, the linear nevus sebaceous syndrome (LNSS), has a classic triad of symptoms - nevus sebaceous, seizures, and intellectual disability - and her diagnosis was based on that triad.

Ah, so much we don't know...

But at least we can work on choosing the right, neutral/helpful-as-possible words to convey the best of what we think we know.

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This blog will now go on a brief Thanksgiving vacation. May your turkeys (or tofurkeys) be moist and tender, your gatherings uneventful, and your causes for gratitude too numerous to name!

See you next week!

A Visit to the Dentist

Dental issues and autism spectrum issues are a touchy combination.

When I put "dentist" into the search box in my Google Reader, searching the autism-related blogs that I regularly follow, I get over 100 hits. Some are nightmare-ish. Many tell tales of hard-won gains, works in progress, dentist experiences that have -- over time -- become productive and tolerable.

I've not written about Joy & the dentist before, partly because our challenges are significantly less than some. Her sensory needs generally swing sensory-SEEKING, so we don't have that incredible mountain of sensory defensiveness to climb. She generally lets us brush her teeth pretty well twice a day with a battery-powered toothbrush, and does a bit of brushing herself after we're done.

Even so, she doesn't like going to the dentist. Who does, really? Well, Rose maybe. She loves our dentist. But I digress. Upshot is, dental visits with Joy are not easy.

But.

The pediatric dental clinic where we take our girls is simply awesome.

They help us troubleshoot. Last visit, they came up with the suggestion of using a lead-apron as a weighted blanket to help Joy feel "hugged" during the cleaning. It worked well, I was all primed to ask for it this time around... and when we walked into the exam room, the apron was already lying on the table waiting for us.

They speak softly and smilingly and encouragingly to Joy. I think they really like her! They don't remind us or hold it over our head that she has bitten and broken dental mirrors in the past! This visit I had randomly snagged one of Joy's Grabber XT chewies to help keep her centered and entertained; the hygienist immediately noticed and suggested that we have Joy use the chewy to help keep her mouth open -- they'll clean while she chomps the chewy.

They sing to her, both the hygienist and the dentist. It's an amazingly calming strategy.

They're open to suggestions. When Rose had a filling done, I discovered that the rooms they use for fillings have video screens. This visit I realized that the regular exam rooms don't have that feature -- and I asked if we could have a video room for Joy's next regular cleaning. They were entirely cool with that. I bet they'll have it written down and I won't even have to ask when we go back in May.

The dentist was fine working without the bright overhead dental-light, when it became clear that Joy wasn't going to tolerate it.

Thank you so much, wonderful pediatric dentist and staff! Worth your weight in gold fillings!

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UPDATE: Here's an opportunity for dentists who need to learn to provide service to patients with autism... a free webinar, Fri. Dec. 4 from 10-11 EST, "Patients with Autism: Awareness, Communication and Legal Strategies". From the Michigan Oral Health Coalition. I don't know what's up with the "legal strategies" bit. But awareness and communication can't be bad, right?

Elvis Wants a Cookie

Anyone for some positive stories?

• We've heard so few words from Joy, for so long -- other than the "more" sign, some photo-choice-making on her Go-Talk, and the occasional "uh-oh". But tonight at dessert time, she echoed the word "cookie," clear as clear. Just once. JoyDad and I both did a double-take. And gave her one with chocolate chips.
  
  
• Speaking of the "more" sign. The other day at breakfast, JoyDad came swooping past to distribute kisses to his breakfasting ladies. Joy giggled at him, and tilted her face up. And then after receiving her kiss, she signed a great big "more"!
  
  
• And still more "more" -- today I was home with Joy, and had a few minutes where she was playing in the living room and I sneaked in some plunking on the piano. I've given up trying to play piano when Rose is around. I don't know why, but I get great big huge objections to my playing if Rose is within earshot. So it felt really good today to end a section of the Maple Leaf Rag with a big flourish... only to look up and find Joy grinning at me and signing "more"!
  
  
• Some totally cool imitation/initiation -- this morning one of Joy's baristas reported that Joy had snagged a tissue from the box and used it to go after the barista's nose! She did it again to me later on in the day. Unfortunately in my case it was with a nasty tissue that was blowing around the playground that she picked up. But the thought was in the right place.
  
  
• We had a therapy-team meeting last night, where positive stories are always the first agenda item. Joy bopped around the living room during the meeting, with her Baby Einstein video on repeat-play. She has never shown much interest in the meetings. But last night as the meeting was nearing a close, she decided that she wanted in on the action. She sidled up to Lynda (her Wonder Woman daycare lady) and climbed right up on her lap. And then she did this marvellous flirty little sequence of turning to make eye contact with Lynda, with a great big ol' grin. Over and over.

Accentuate the positive!

"Every NO is One Step Closer to a YES"

Had another amazing seminar day in my LEND program yesterday. One of the (many) components of the course is policy advocacy, and that was yesterday's theme.

We were privileged to have a panel composed of a parent activist who's been involved in many organizations and policy campaigns on behalf of children with special needs; the executive director of the state's disability rights organization; and a state senator who co-chairs one of the most powerful committees in the state capitol, the Joint Finance Committee.

Together the three of them told an ongoing story of a decade-long effort on behalf of children with disabilities in Wisconsin, who sit for years on waiting lists to get Medicaid-waiver funding for support in their homes. Autism, with its high-profile political status and recent insurance mandate win, has rather jumped to the head of the line in this state; rather than playing one disability off another, they are using it as an example. Kids with autism shouldn't have to wait for support and treatment; neither should any other child with a disability!

In context of this ongoing struggle, where there have been lots of roadblocks and setbacks, they told a remarkable Wisconsin civil-rights story. The star of the story is a woman named Vel Phillips.

Vel Phillips was the first black woman to graduate from the University of Wisconsin-Madison law school. She then became the first black woman to get elected as an alder on the Milwaukee city council, in 1956. One of her first acts as "Madame Alderman" was to propose a fair housing law, to prohibit "red-lining," the practice of refusing to sell homes in certain neighborhoods on the basis of race. The measure went immediately down to defeat, 15-1.

The rules on the council, the panelist told us, was that you couldn't re-introduce a measure for 90 days. Guess what -- 90 days later, she re-introduced that measure. And again, down to defeat, 15-1.

She did this over and over. Her friends started chiding her about it. This is ridiculous, you know, they said. You're not going to get anywhere with this. She heard their objections, but did not heed them. She continued right on doing what she'd been doing.

After a while, some of the aldermen (remember that everyone else on the council were white men) started coming to her privately and apologizing for their repeated "No" votes. I know you're right, they began to say. But my constituency is just not going to back me on this.

Vel went back to her friends and told them, They're apologizing to me! We're making progress!

And that's where the panelist quoted Vel Phillips' dictum:

Every NO is one step closer to a YES.

Well, the years began to pass, some members on the council turned over, the civil rights movement was brewing nationwide, and Madame Alderman started to get a few votes each time she brought the measure forward.

It took six years. But finally a majority came through, both locally and nationally. And, as the panelist told it, the night of that Milwaukee vote, there was a huge crowd awaiting Vel Phillips outside the city building. And they took this petite powerhouse of a woman on their shoulders, and "they marched all night through the red-lined neighborhoods of Milwaukee, where they had never been allowed to buy a home before."

This was the one point in the entire panel presentation, for all its riches, that tears sprang to my eyes. It wasn't getting to ask a direct question of the senator, as fine a privilege as that was, nor was it getting to meet him and shake his hand and exchange a few words afterwards. It was the story.

Two takeaways.

Every NO is one step closer to a YES.

And, stories have power. We have to tell our stories to the people who make things happen. Our stories are crucial in turning NO into YES. Together, we can move policy mountains.

Photo Wednesday: Jackson Pollock Edition

Behold, the aesthetic force of a single handful of butternut bisque!



At least I haven't heard her singing "threedy boogie college"... not yet, anyway.


Update: As requested in the comments, here's the recipe for the "paint"/butternut bisque. It's from a lovely cookbook called Simply in Season.

A Dream

The women of our congregation met at the church for women's retreat this weekend.

One of the women at the retreat went home afterward and dreamed about my daughter Joy.

In her dream, there was a man sitting and speaking to a group of people. He was speaking in long, complex, difficult-to-understand constructions.

Joy was with him, maybe on his lap or next to him. And she was translating for him. He'd say some long wordy something, and then she'd say just a few simple words that distilled it down and made it understandable.

My friend said that in the dream she was motioning to me, "JoyMama, come see this, did you know that she could DO this?!"

Joy already helps me understand some things that I might never have come to on my own -- about difference, about acceptance, about hope, about God working in the world.

I fully expect that she will continue to be an intermediary to my understanding, and the understanding of others around her. So much she has to teach us, if we only pay attention!

I am awestruck that Joy's presence touched my friend's dreaming to convey and reinforce that message.

Almost 200

The title of this post will surely have faithful readers scratching their heads and saying, "Didn't we have a big fooferaw about Post #200 back in the summer sometime?"

To which I respond, "Yup."

This is the almost-200 miles I have run since I started keeping track in February, when I ran my first 5K race.

This morning's 5K run at 5am (a clear frosty moonlit morning) brought me up to 199.

I plan to hit the 200 mark running with some women from church this weekend. This year's Women's Retreat is this Saturday, right here in town rather than up in the wild woods, but I'm sure we'll manage a wild and wonderful time anyway.

200 miles isn't much of a total for someone like Joy's Uncle Marathon (or UncleDO or Auntie RatM either, come to think of it.) But for me, it's pretty special, particularly since I managed to start back running again after being interrupted by the red-white-&-blue-foot phenomenon this summer.

Yay, wild women!

Direct from the Researcher

Another week, another amazing LEND opportunity!

The center that hosts "my" LEND program has an ongoing brown-bag research-seminar series where distinguished researchers come in for one-hour presentations on their ongoing work. One of the LEND assignments involves attending one of these presentations each semester and reporting back. My interdisciplinary team (with an autism focus) chose to attend last Friday's presentation: “Gene x Environment Interactions Contributing to Autism: Lessons Learned from the UC-Davis Center for Children’s Environmental Health and Disease Prevention,” presented by Dr. Isaac Pessah.

Little did I know when we signed up at the beginning of the semester to attend this talk, that Dr. Pessah would be discussing an article that would go online as a pre-pub just a week and a half before, and already be getting the blogospheric once-over right before we got to hear him in person!

The article in question is Blood Mercury Concentrations in CHARGE Study Children with and without Autism. The authors are Irva Hertz-Picciotto, Peter G. Green, Lora Delwiche, Robin Hansen, Cheryl Walker, and Isaac N. Pessah; and the sponsoring institution is the MIND Institute of UC-Davis.

Quick detour about the MIND Institute -- this is an organization whose co-founders were parents of children with autism, searching for a cure and ready to lay the blame with vaccines. (See All Things Considered transcript from Jan. 20, 2003). Since its inception, the MIND Institute has focused on environmental considerations in autism. They operate from the position that the rise in autism prevalence can not be entirely accounted for by changing definitions, diagnostic substitution, and increased awareness/education.

Given that background, it's not at all surprising to see a study comparing mercury concentrations in the blood of children with and without autism.

The conclusions might not be expected, though.

Conclusions: After accounting for dietary and other differences in Hg exposures, total Hg in blood was neither elevated nor reduced in CHARGE Study preschoolers with AU/ASD as compared with unaffected controls, and resembled those of nationally representative samples.

They used a substantial sample of preschoolers on the autism spectrum, plus two control groups: one group with non-autism developmental disabilities, and one typically-developing group. They interviewed mothers to determine household and medical and dietary exposures to mercury.

It turned out that the biggest contributor to blood mercury levels in all groups was fish consumption. Once you account for fish consumption, there were no significant differences in blood mercury levels between groups. In fact, before controlling for fish consumption, the blood mercury levels for the autism group were actually lower than the other groups. Because the ASD kiddos ate less fish!!

Sullivan over at LeftBrain/RightBrain does a fine parsing of the study and the various online reactions to it. I won't try to re-do a job that's been already well-done!

For me, it's rather a thrill to be hearing first-hand, right from the mouth of one of the actual study authors, that the ASD kiddos had similar blood-mercury levels, and any differences were pretty much all about the fish. Now, this doesn't say anything directly about mercury and autism causation. The authors are very straightforward about that. Still it's another useful counterweight to what has become an insidious public perception. It's not the thimerosal, folks!!

P.S. You may have noticed that the title of Dr. Pessah's talk was about genes & environment. He also addressed a second paper, not yet publicly available, that delved deeper into genetic complexity than my poor notes were able to keep straight in the absence of being able to refer to the actual PowerPoint slides! When the paper actually comes out, I might take a whack at it. Or it still might turn out to be pretty much beyond my ken.

A Case of the Shreds

Joy loves her pillow, the one she sleeps with in her tented crib.

As in, I mean she luuuuuvs her pillow. I think the word I'm looking for is... well, humping. Although her senior barista tactfully refers to it as "making friends with her pillow."

This pillow-relationship seems to have entered a new phase this week, however. As the week progressed, I started to notice that her threadbare old pillowcase was starting to collect little rips. I threw it out, only to have the phenomenon happen a second time with another old pillowcase. So I tossed that one too, and this morning pulled out one from the JoyParents' regular pillowcase rotation.

Here's what she did to her parents' pillowcase during naptime today:


Sometimes love really hurts!

We're going to try a flannel pillowcase tonight.

Wish us luck.