And I was super eager  for Sophie to participate in the sleep study.

There’s a guinea pig aspect to having a kid with Down syndrome (well, there can be, if you’re game) and lots of benefits for the distant and maybe even not-so-distant future. For me, the most intriguing is Jamie Edgin’s sleep research at the University of Arizona in Tucson.

As she explained to me years ago, the concept is fairly simple. People with Down syndrome almost invariably have cognitive issues, and Edgin believes it’s not all in the brain. Some of it, she and others think, has to to do with physical characteristics people with DS tend to have, including the small openings that can lead to sleep dysfunction.

Lack of sleep equals impaired cognitive abilities.

I like the way Jamie Edgin thinks. I got to speak with her a few times as I worked on my book, and she is a fierce champion for the Down syndrome community and for her research. I’ll be in Tucson later this week to read from “My Heart Can’t Even Believe It,” and it seemed like a good time to put out the word about Edgin’s work and her search for study participants.

Her latest work is a collaboration with a UA student named Stella Sakhon. From the description of their work:

“Stella is currently a second year graduate student in the Cognition and Neural Systems program at the University of Arizona. She is investigating alternative language learning gmechanisms in individuals with Down syndrome. Stella is interested in understand more about the way individuals with Down syndrome learn and the role that sleep and attention may play in their language difficulties. Stella is teaching individuals with DS new words using two different strategiesto determine the most effective way of presenting new materials.”

Edgin described their “tireless” work and gets no argument here, but included a comment for me that I have to share here because it will explain how much I love her:

“Amy – this may sound as if we are bragging – but we often do work 7 days a week in my lab. My grad student Dina Spano moved to Phoenix for 4 months and often drove 4 hours a day to finish her work. We never stop. And the only reason that I can give for this is that I people that people with DS deserve research and researchers who will never stop. We understand this and work hard for them. They are not “guinea pigs” to us (many of my staff have family members with DS)- they are what inspires us to work harder and harder…

“When I am up at 3 am at night working on a deadline, it is remembering the >300 people with DS who have come into my life that keeps me going.”

So don’t you want your kid to participate in Stella and Jamie’s latest study?! If you live in Tucson or Phoenix, you are in luck. Here’s the rest of the information:

“The Down Syndrome Research Group at the University of Arizona is currently looking for participants for a study on language learning in individuals with Down syndrome.

“If you have a son or daughter with Down syndrome between 11 and 25 years of age, you and your child are invited to participate in a research study being conducted by Dr. Jamie Edgin and Stella Sakhon.

“The goal of this study is to learn more about different ways of language learning in individuals with Down syndrome. The results can have applications for designing intervention programs for language learning deficits in individuals with Down syndrome.

“If you decide that you and your son or daughter would like to be in this study, we will ask you to visit the Down Syndrome Research Group at the University of Arizona for four visits. Visits can also be conducted in your home and in Phoenix at the end of the summer and in early Fall. At each visit, your son or daughter will play a computer game used to assess their language learning and various memory assessment games.

“As a token of our appreciation, you will be compensated for your time and efforts. We will also provide feedback on your child’s sleep profile.

“If you would like to learn more about this study, please call the Study Coordinator at 520-626-0244 or email: DSRG@email.arizona.edu”

A side note: We tried this study with Sophie a few years ago. She was game (Edgin’s staff was really great with her!) but I couldn’t help but wish that Edgin’s next research will focus on stubbornness when Sophie refused a “redo” after a sleep sensor feel off in the middle of the night. I’m hoping the topic will come up when we are in Tucson and that Sophie will agree. The photo collage above is from #goodnightsophie — a series I’ve shot of her in recent months and years that I believe demonstrates there are some sleep issues there! And that sleep (on Sophie, anyway) is pretty photogenic.

Amy’s book, “My Heart Can’t Even Believe It: A Story of Science, Love, and Down Syndrome,” was published by Woodbine House this spring and is available through Amazon and Changing Hands Bookstore. Amy and Sophie will be reading and signing books at Antigone Books in Tucson on Friday, May 20 at 7 pm (books will be for sale there, too). For more information about tour dates and other events visit myheartcantevenbelieveit.com and here’s a book trailer.

Two nights ago, Sophie slept with us. Rather, with me. She leaves Ray alone, but not me. I’m her foot rest, her arm rest, her kicking post. At one point I was sleeping on my side — my back to her — and realized she was using my hip as a pillow.

Typically I’d roll her over, shake her awake, try sending her back to her bed — or at least the other side of my bed. But this time I didn’t say anything, just tried to go back to sleep despite the bowling ball resting on my butt.

I’ve had more sympathy for Sophie since our trip to Tucson last week. Mostly it was for fun — we visited friends, shopped, played games. But I did have one “grown up” appointment at the University of Arizona, where, it turns out, some important Down syndrome research is happening.

Who knew? I usually pride myself on knowing what’s going on in my backyard, but I didn’t realize that in the last few years, UA has become an important hub for DS research. Professor Jamie Edgin was kind enough to give me a tour — just a few rooms in the basement of a space science building, nothing special looking. But the conversation was pretty awesome.

I’ll boil it way down: Edgin, whose background is in psychology, is interested in the physical characteristics of Down syndrome that exacerbate cognitive deficiencies. I’m sure I’m botching that, but I think she’d agree that’s the basic idea. Right now she’s very interested in sleep. Turns out, people with Down syndrome have a double whammy that makes them prone to sleep apnea: a certain cranial structure along with low muscle tone.

Edgin’s research shows that sleep apnea in children with Down syndrome has an impact on cognitive abilities. (A pretty profound one.)

“Oh, I’m sure Sophie has sleep apnea,” I told her — thinking about how Sophie wanders each night from her bed to the couch to my bed, trying to get comfortable; how she snores and starts awake; how she prefers to sleep sitting up (see photo — taken after she fell asleep during the first presidential debate).

Edgin explained that one thing her research shows is that the subjects with sleep apnea have lower vocabularies, because we “consolidate” our memories at night. That makes sense, I told her, but Sophie seems to have a pretty good internal dictionary.

These kids also have problems with transitions, she said.

“DING DING DING! That’s Sophie!” I thought, cataloging the last dozen or so instances — which had taken place just that day.

Okay, I said, sign us up. And so the researchers will come to our house later this fall. (I better straighten up the bedrooms!)

There’s no guarantee any of it will make a difference — or that, if Sophie is diagnosed with sleep apnea, that she’ll wear the mask most of the middle-aged men I know are wearing. But it’s worth a try. And it’s fascinating.

I’ve long wondered if the physical differences in people with DS affect their mental abilities. When Sophie was a few months old, they put her in a Doc Band — one of those white football helmet-looking contraptions meant to round out a flat-backed head. Mostly typical kids wear them; the helmets were a huge and important find, considering before them, quack doctors were performing risky cranial surgery on babies to fix heads made flat by back sleep. (The unintended consequence of the fix for Sudden Infant Death Syndrome.)

Sophie was weak as a baby — in need of heart surgery, unable to suck hard enough to eat without a tube — and her head quickly emerged as a candidate for a band. So we did it, and in reading the research I noticed that some were saying that without a Doc Band, there was a risk of developmental disabilities.

I asked the Doc Band folks if there was a chance Sophie could have improved cognitive abilities because her head would be “fixed” — I thought about the people I’d seen with Down syndrome, and in fact, they all seemed to have flat heads.

Maybe a Doc Band for every child with DS could improve cognitive function?

The woman fitting Sophie’s Doc Band just looked at me funny, and changed the subject. I dropped it, figuring it was just a silly notion, a too-hopeful idea on my part. Most likely, the whole thing really is cosmetic. (And for the record, that band didn’t do a damn thing to her head — maybe Down syndrome made the flatness a foregone conclusion, or maybe it was the fact that the thing rubbed a hot spot on my poor baby’s head, so she couldn’t wear it the required 23 hours a day.)

At that point, I was looking for — well, if not a cure, then at least some hope. Almost 10 years later, I’m cool with Sophie. She’s pretty damn smart, if you ask me. Yes, I’d love it if her IQ shot up a few points with a sleep mask, but I’m not holding my (own sleep-deprived) breath. I’ll be thrilled if she gets a little easier on the transition front. And if  not, I can live with that, too.

But on a meta-level, I’m delighted that Professor Edgin thinks the way she does — and that she’s only a two-hour drive away from me, walking the walk.

If you want more information on the University of Arizona Down syndrome Research Group, here it is.