Bioethics strikes again

Last week, there was a story in the news about a UNC college professor and his unhelpful opinion (in my opinion) about Down syndrome and pregnancy.  I’m only just now writing about it, but Patricia Bauer has been running excellent coverage of it, and Emily Elizabeth has written a post at Lovely and Amazing  that actually made me laugh about the story.  And along with the laughter, she raises several good points, all of them worth considering.

Down syndrome and nutritional supplements

A study recently published in the British Medical Journal (BMJ) concludes that giving supplemental antioxidants, or folate, or a combination of both to babies with Down syndrome does not increase language development or motor skills.

The study was conducted on 156 babies younger than 7 months, for an 18 month period.  Participants were placed in 4 groups:  one group was given folate supplements, one group was given extra antioxidants, a third group was given both supplements, and the fourth was given a placebo.  (More information  on the study has been published online at ScienceDaily.)

I spent an entire chapter in Road Map to Holland discussing the issue of nutritional supplements.  I remember my editor asking, “Is this important enough to warrant such a lengthy discussion?”  and my reply was, yes! 

Then, and now, I feel the same:  the human body is comprised of hundreds of thousands of biochemical reactions.  That the addition of extra genetic material alters those reactions isn’t in question:  what to do about it, well that’s still unknown. 

This study looks at the affects of supplemental antioxidants and folate, but not in the megadoses found in such nutritional therapies as Nutrivene-D.  So I imagine the families who choose the nutritional therapies will not agree with the results, for that reason.

What this study does accomplish is that it provides a closer look at the issue of nutritional supplements and tries to address some of the flaws in previous studies, and I’m grateful to the scientists who undertook this research. 

I guess, as a parent, what I’d really be interested in is a study of the megadoses, because that seems to be a recurring argument in nutritional therapy:  that to be effective, the dosage of the supplements needs to be large.

(I’d also recommend Joan Guthrie Medlen’s terrific book, The Down Syndrome Nutrition Handbook, which is full of healthy eating ideas for the whole family.)

EDITED, and I’ve added the link to the study results provided by the paper’s lead author Jill, thank you!

Lots of fits and starts

I’ve written and deleted a half-dozen posts–about how our life, lately, reminds me of a pointless This Old House show (lots of problems uncovered, but nothing gets fixed); about how pioneer women must have felt waiting out the long winter in their tiny cabins, without emails or Internet or even good books; about why I don’t write fiction, even though I admire it and love reading it.  

But it’s like tossing an undercooked spaghetti noodle at the wall to see if it’s done–nothing seems to stick!

So instead, I’ll leave you with this:  Avery has begun telling a knock-knock joke, which he tells over and over, to everyone’s amusement, especially his. 

Avery: Knock knock.

Me:  Who’s there?

Avery: Poo.

Me: Poo who?

Avery:  POO POO! 

And then he grins and smiles and knows he’s said something a bit naughty, which makes him laugh and laugh, until I can’t help but laugh too.  My little boy, telling a bathroom joke!

That Saturday feeling…

I’m thinking of the Seinfeld episode where Kramer and George are discussing days of the week, and if each has a certain feeling, because today, to me, feels like a Saturday.

We’ve been in this new, old house for nearly 5 weeks, and most of that time has felt topsy-turvy to me:  nights of jangled sleep, days spent going from one thing to the next (making breakfast on the ancient Chambers gas range which mostly scares me to death, the way it makes that WOOSHing sound when the burners light, or feeding the woodstove with the gnarled and weathered logs Tom gathers from an abandoned slash pile near the house, or doing schoolwork with the kids at at a grey formica table from the 40s with a wobbly leg).

But today the kids slept in, and I fired-up the Chamers range without even flinching, and I placed the square cast-iron frying pan that once belonged to my great-grandmother on the burner and cracked two eggs into it, one for each of the twins, just like I used to do at home. 

Just like at home, I watched the yolks open and spread, golden, reminding me of the sun, which is just now filling the meadow with yellow light.  The day is opening before us, and I thought, with a happiness that comes from feeling right where you’re supposed to be, Today is Saturday. 

I wonder what it holds? What does your Saturday hold?

Another review just in…

This one’s from Library Journal:

Inspired by “Welcome to Holland,” Emily Perl Kingsley’s 1987 essay about her experiences raising a special-needs child, Groneberg here shares her own story, which begins with her unexpected early delivery of twin boys, Avery and Bennett; it continues with Avery’s being diagnosed with Down syndrome five days later and follows her from there. As she narrates her disorienting experience (“It’s like planning a trip to Italy, only to get off the plane and discover you’re actually in Holland. You need a new road map, and fast…”), we are drawn in by her candid revelations about the emotions and other discoveries she encounters along the way. Groneberg explores the pain of sharing the news with friends and family–not everyone is able to look past the diagnosis and see the wonder of Avery. She includes an extensive bibliography, a glossary of terms, and resources for parents who might find themselves in a similar situation. A beautiful book full of insight into life with Down syndrome, this recounts a trip that did not go according to plan but turned out to be perfect after all. Highly recommended.-Lisa M. Jordan, Johnson Cty. Lib., KS

Shoes

I’d expect to find: cowboy boots, overshoes. Rubber boots. Slippers. Maybe, mocassins. Maybe, a second pair of cowboy boots, for town. Maybe even a pair of low-heeled “sensible shoes” for church and the luncheon meetings of the Sweet Grass County Cattle Women.

But these??? Never in a million years…

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Or these?

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Va-va-voom!

Key Lime Pie

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The neighbors up the road, the ones who invited us for coffee, have chickens.  As we left, the wife shared a dozen eggs with me, and when I got home I opened the carton to find the prettiest eggs, with shells that were brown and blue and pale green and yokes the bright orange color of a marigold.  What to do with such fine eggs?  Make a Key Lime Pie, of course!

Crust
6 ounces animal crackers
2 tablespoons unsweetened shredded coconut
4 tablespoons unsalted butter, melted
Mix ingredients and press into a 9-inch pie plate. Bake in a preheated 350 degree oven for 10 minutes, until toasted. Let cool.

Pie
4 large egg yolks (save the whites for something else)
1 14oz. can sweetened condensed milk
1/4 cup fresh key lime juice (about 20 limes); if you can’t get it, use the bottled key lime juice; if you can’t get that, use the juice from fresh limes (about 3).

Beat egg yolks with a fork until they are thick and frothy; add condensed milk.  Mix.  Add half the key lime juice, mix until blended.  Add the rest of the key lime juice. Pour into pie shell and bake at 350 degrees for 10-12 minutes, to set the yolks. Remove, cool.  Top with whipped cream, toasted coconut and slices of fresh lime.  Serves 1 (just kidding!).

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And to give/receive more great pie recipes, visit Fulltime in NM where there’s a pie auction going on!

Hats!

The hats are finally here! Thank you, to those of you who asked to see them, for your patience. Thank you, to the folks who encouraged me to keep trying with the digial photography (I’m learning!) and thanks for snowy days and children who like to play with each other, creating a quiet moment. And now, without further ado!

The hat boxes, as I found them in the eaves.  One is marked “Stetson” and another, “Milgrim.”

The boxes, as I found them in the eaves.  One is marked “Milgrim.”

The winter hats:

The winter hats

The summer hats:

The summer hats

(You can click on all these photos to make them bigger. )

 In the background, you can see the rough cut logs that make up the walls of the house, and the scarred and worn wood floor, which makes these hats, here, all the more remarkable to me. 

Coming soon:  bonus shoes!

A conversation about writing with author Robert Rummel-Hudson

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Robert Rummel-Hudson has been writing online since 1995.  During that time, his work has been recognized by the Diarist Awards at diarist.net, including citations for Best Writing (1999 Q4), Best Overall Journal (2000 Q1), Best Account of a Public or News Event (2001 Q2, on the execution of Timothy McVeigh), Best Dramatic Entry (2002 Q3), and the Legacy Hall of Fame Award (2004 Q4).  He has served as a featured panelist at JournalCon, an annual conference for online writers, in 2001, 2003 and 2004.  His online writing has been featured in articles in the Austin Chronicle (August 2000), the Irish Times (summer 2003) and the New Haven Register (April 2003).

His first book, Schuyler’s Monster: A Father’s Journey With His Wordless Daughter, will be published by St. Martin’s Press this month.  You can read an excerpt in Wondertime, or visit Rob’s blog, Fighting Monsters With Rubber Swords.  He’s taken the time to answer a few questions about blogging, writing, and his life as a father.

You are one of the early bloggers, what inspired you to blog, and how did you begin?
RRH: I originally started off way back in 1995 with a site of general observations. I was working at the university I attended, in the computer support division, and when the web first hit the scene, I was told to figure out how it worked and learn some basic html, just in case it took off. I got bored with boring university material pretty quickly and started doing my own thing. But it wasn’t until Schuyler was born in 1999 that I think I really began to find a consistent voice.

I kept an online journal for about ten years, and actually only gave in and started blogging about two years ago. I can’t believe I waited that long. But the journal was essentially the same thing, just with a ridiculous amount of hand-coding involved.

How did you go from blogger to author? What were the steps?
RRH: Well, when I began working on the book in 2005, I had originally intended to make it sort of a hybrid, with parts of the journal interspersed in the text. When I got a literary agent, that was the first thing she killed. She convinced me to write the book as a straight narrative and to trust in myself to tell that story without the crutch of the blog, and in the end, she was 100% correct. So early on, she had very little interest in the blog and approached it as a purely literary project. When she sold the proposal to St. Martin’s Press in August of 2006, their initial interest was also strictly as a narrative, but once we got started, they became more aware of the blog and quickly saw the potential for having an internet presence that accompanied the material in the book.

In December of 2006, I travelled to New York to participate in a panel called “From Blogger to Author: How Bloggers Get Book Deals, and What This Means for Publishing”. The panel included Maxwell Gillingham-Ryan, author of Apartment Therapy; Michael Malice, founding editor and co-author of Overheard in New York; and Julie Powell, author of the very successful Julie and Julia: My Year of Cooking Dangerously, which I believe is being made into a movie starring Meryl Streep as Julia Child. And the funny thing that we discovered as the discussion moved on was that despite the fact that we all had blogs that became popular before our books were published, it turned out that every one of us had pursued publication in a very straightforward and traditional way. In some cases, like Overheard in New York, the blog was actually created as a sort of accompaniment to the book, but since a book usually takes over a year to reach publication, their blogs had taken on lives of their own during the interim.

Having an internet presence is definitely crucial, especially in the buildup to a book’s release, but when it comes to actually getting a book deal and preparing a manuscript, the process is almost always shockingly old school.

How is writing a blog post different from writing a book?
RRH: The most striking difference is the instant feedback I get from the blog. I know if I’ve gotten it right within hours, or even minutes, and that instant gratification can be very addictive. With the book, there are things that I wrote two years ago that are only now being read by reviewers and early editors, and STILL haven’t been seen by anyone else. In some ways, I’m still unsure if the book material really works.

Which do you prefer? Writing blog posts, or writing a book?
RRH: Well, I think I prefer the process of blogging more, it feels much more dynamic and alive. But I think the material I write for publication makes me much happier, I think the quality of that work is much higher and benefits from a little more introspection on my part.

Your background and training is in music. What influence did your knowledge of music have on your writing?
RRH: I think I get a sense of timing and structure from having been a musician for so long. If I look at the chapters of my book, I can see some of the same architecture that I would expect in music, the statement of thematic material, the exposition and development, and certainly the coda structure at the end. It’s not something that I’m conscious of at the time, so when I go back and actually see how those elements present themselves, I’m pleasantly surprised.

I must say, however, that some of my favorite writing takes place when I actually talk about music, and yet I think that’s probably the least popular of my online material. There’s a music-related book that I want to write more than any other future project, and I have to keep talking myself out of it, at least for now, until my current book is done.

You’ve written before about the importance of fathers in the communal parenting voice. What do you want to say about this topic?
RRH: I think it’s an exciting time for fathers. Since World War II, I think fathers in our society have been defined more by their absence than by their actual presence in the family, whether it was the father lost in war or the working dad, or even the deadbeat dad. In the last twenty years or so, we’ve seen this huge shift in the family dynamic, where fathers are now excited about their role in the family and not only welcome involvement, but really insist on it. And yet, there aren’t really any ground rules. For better or for worse (and I know that in a lot of cases, it’s worse), the societal role of mothers has been pretty firmly defined. You either have mothers who conform to that societal narrative, or more and more you have them rebelling against it, but that “mother model” looms in the background just the same. With fathers, it really is something of an open book.

That’s a blessing and a curse, really. We are setting new standards and writing our own script, but we’re also still fighting the expectations of the parenting paradigm. For special needs parenting, I feel like it’s even worse. There are special needs moms groups all over the internet and in every community, but for fathers, there’s often a feeling of “oh, and me too, don’t forget about me” in a great many discussions. And the worst part for me is that I see how that affects the level of participation of fathers. I’ve talked to the dads of the kids in Schuyler’s class about it when I see them, which is rarely, and they often say the same thing. They feel conspicuous in those settings, and so they let their wives handle those duties. I do sometimes feel like an aberration as an outspoken and involved father, but how much of that is because of the “women’s work” attitude that much of society seems to have towards parenting, and special needs parenting in particular? I think it hurts the cause of men and women both, and I’d like to see it go away.

The good news is that there are a LOT of parenting memoirs being written by fathers. The genre has become sort of hot in the last year or so, and since I began writingSchuyler’s Monster slightly before then, I think my book is coming out at just the right time. I hope to see more books by fathers, and more active participation as well.

Your wife and partner, Julie, has an abiding interest in music an books as well. What would you like to say about her influence in your writing, and your life?
RRH: Well, I’m not sure how much she’s affected my writing directly, but she is both a funny person and a calming presence in my life, so her indirect influence has been to help me see the big picture and to not take myself so seriously. I’ve grown up a lot since I met Julie.

What do you wish parents of children without any additional challenges, neurotypical or otherwise, knew?
RRH: The thing I wish they could do is see our broken children the way other kids seem to most of the time. I can tell you without hesitation that the very vast majority of times Schuyler has gotten strange looks or rude comments from someone else, it has come from an adult. Until they reach a certain age, I think children are more accepting and accommodating of special needs kids. I watch Schuyler play with news kids at public playgrounds, and it’s almost always the same. They meet her, they ask her why she doesn’t talk, she shows them the device and they exchange the important facts about each other, and then that’s it. She becomes the girl who doesn’t talk. Okay, then, we play something that doesn’t necessitate speaking. Which is really most games at that age. They adjust their expectations and they move on.

I think a lot of parents approach broken children with fear because they don’t want to face the possibility of their own kids having to face those odds or live in that world. They see the differences, but kids tend to see past that. I’m not sure when they lose that ability, but it’s a sad day when it happens, and it’s one of the reasons that I’m so adamant in my advocacy of mainstream inclusion when it’s appropriate. It doesn’t just benefit special needs students. In fact, I’d suggest that it’s the neurotypical kids who have the most to gain, in terms of personal growth and understanding. For adults, that’s undoubtedly a harder process.

What was the best advice you’ve received as a writer? What advice do you have for new writers?
RRH: I think the best advice I got was from my agent, when she told me simply to trust my voice. I think it’s important to find that voice, and when you identify the writers whose writing resonates to you the most clearly, that’s a start. For a long time, I really identified with the writing of Bill Bryson and Anne Lamott, and I think that’s probably reflected in my writing style. And the thing is, there was someone once upon a time that influenced THEIR writing voices, too. Don’t be afraid to emulate those writers for a time, and be ready to step out of that pool when the time feels right.