Beyond FINE: Good News about Patry Francis

So many of you have commented on Patry’s Two Ounces of Bliss post at Simply Wait, so I know you’re up to speed on her discussion of her recent cancer diagnosis. For those of you who haven’t seen this note from Patry’s husband, Ted, here’s an update on Patry’s surgery in Boston on Wednesday:

“Hi Everyone:

Our day yesterday started at 3:30 a.m. as we headed into Boston for Patry’s surgery which was scheduled for 6 a.m. It ended with me driving down 193 around 9 p.m. exhausted but ecstatic with how well everything went.

The operation was successful and her surgeon, one of the world’s best, was very happy with what he saw and how she made out. She’s very strong spiritually and physically and hopefully will be coming home soon with a long healing period ahead of her.

Thanks for your prayers,
peace and love,
Ted”

Can I tell you how much I cherish these people, whom I’ve never officially met? If you don’t know Patry, read a few of her archived posts and you’ll immediately glimpse her immense stores of grace, goodwill, and pure gumption. Hell, read this quote from her current post and you’ll see what I mean:

“I couldn’t change the fact that I was ill; I couldn’t make the road ahead pain- or anxiety-free, but I could get out of bed and take the dogs to the beach. I could pick up a common, translucent shell and hold it up to the light until it revealed just how uncommon it was.”

Patry’s a fighter who’s been through tough times before. No wonder so many of her fans and friends feel so strongly about her and can’t wait to hear more good news from Cape Cod. I only hope she understands why we’re all so vocal and emotional about all this: because she’s an ordinary person like us who’s extraordinary in so many ways. She’s not only the translucent shell, she’s the light shining through that illuminates the lives of those who love her, reminding us how uncommon and unique we are, too.

Beyond FUN: A Middle-Name Meme

Lisa over at Eudaemonia tagged me for the latest fun meme making the rounds, and YES I’m going to tag others on this one, so watch out.

Here’s the deal:

1. Post these rules before you give the following facts.

2. List one fact that is somehow relevant to your life for each letter of your middle name. If you don’t have a middle name, make one up or use the one you would have liked to have had.

3. Choose one person for each letter of your middle name to tag. Leave all these bloggers comments telling them they’ve been tagged and asking them to read your post.

Here goes:

L - Laughter. It remains the best medicine for anything that ails me, the best amplifier for every truly enjoyable conversation, reunion, and celebration I’ve ever enjoyed.

Y - Yes. The ability to stay open to possibilities, opportunities, and even inopportune events as well as the unknowns they might introduce keeps me on my toes and fascinated by every new thing I learn every day.

N - New. New experiences; new friends; New York (my home state); New England (I’m with you on this one, Lisa. My mom’s family traces its history back to the Pilgrims and settled primarily in Stamford, Connecticut. She loved growing up near the ocean and still misses it, I think); New Year’s (January 1st rocks with possibilities, doesn’t it?); new life every spring (my favorite season).

N - No. As in No Excuses. No excuses to keep me from doing what I enjoy and what’s good for me on a regular basis. The list is long but here are the top handful: enjoying family and friends (either in person, on the phone, or in the virtual world of e-mail and the blogosphere, and yes laughter again is a big part of the fun); reading anything; writing anything; exercising (Jazzercise, woohoo!); eating well (and yes that includes desserts and wine!); organizing anything from sock drawers to the plot line of a new novel. I am just a tad detail-oriented and can tweak the hell out of any project (I even edited the rules of this game! No excuses for being an editing geek, either.).

My middle name came from my paternal grandmother, Evelyn Perina Giacherio DeGroot, Eva to those closest to her. Of German and Italian descent, she grew up on a farm near the DeGroot Dairy Farm in Michigan’s Upper Peninsula. I have memories of visiting her and Grandpa in Michigan when I was a kid, but remember most the visits she and Grandpa made to our home in Syracuse every fall. The sight of their camper parked in front of our house made me run down the street from school each time. Our yard by October was always packed with fallen leaves and inside our house the smells of coffee and tobacco (from Grandpa’s pipe) warmed every corner. When Grandma and Grandpa visited, the old-fashioned windmill cookies I still love would appear in the kitchen with the ever-present bowl of McIntosh apples on the counter, and Grandma’s skim milk (skim milk! I couldn’t imagine drinking that stuff, lol!) in the fridge.

While Grandpa was particular about a lot of things (the freshest tomatoes from a grocery store could never compare to the tomatoes grown in his garden, that sort of thing) Grandma loomed just as big and tall in my imagination but loved easily and laughed at every little thing. “They’re coming out of the walls!” she’d exclaim as another of my brothers arrived home from work. She complimented me on my school paper detailing the parts of a flower; out on walks she’d pluck a wildflower and stick the stem in her mouth “to help it live a little longer.” One afternoon she picked up an armful of leaves in our front yard and threw them in the air over her head, laughing as they fell all around her and settled into her jet black hair.

Grandma told me once while I played the organ in the dining room that “Amazing Grace” was her favorite song; when she was unable to attend my wedding years later I asked the soloist to sing “Amazing Grace” as everyone arrived; I’m sure more than one of our wedding guests wondered at that choice but I thought it was completely appropriate, especially since it brought Grandma to mind as I waited downstairs in my wedding gown for the church to fill. I also remember Grandma complimenting a lemon bar dessert I made once while she was visiting, and another time when she shooed Grandpa from the kitchen as I pulled out a recipe and some baking pans, insisting I needed privacy so I could “experiment.” I still wish I’d asked them both to stay and talk for a while, but I was a lot like my grandmother back then: humble and hesitant, certain most of the time that I was in the way and apologetic for most everything I did, said, and wished for. My adult determination to make No Excuses extends to what I’ve since learned regarding the need for balance in our giving and taking, our loving and demanding, our sacrifices and our simple ability to say no. It’s not a bad word anymore, I’ve decided, and while I insist my kids listen to their dad and me even (or especially!) when they don’t like what they’re hearing, I look forward to encouraging them as they grow older to make sure their days are filled with as many “no”s as they need, as well as all the “yes”es their hearts desire. I’m fairly certain Grandma would be pleased.

Golly, I’ve rambled! Four to tag: Lisa, Amy, Hannah and Lynne at the wondrous Writers’ Group.

Photo of baby Evelyn, 1908

Beyond FANTASTIC PHOTOGRAPHY: WOMEN WHO LIGHT THE DARK by Paola Gianturco

Britt Bravo over at Have Fun * Do Good has done it again! Talk about a comprehensive treatment of a worthy subject. In October she featured the impressive and important coffee table book, Women Who Light the Dark by photojournalist extraordinaire Paola Gianturco, and now she’s followed up with the transcript of a terrific interview she recently conducted with Gianturco.

Gianturco is donating 100 percent of her royalties from her latest book to the Global Fund for Women, which provided grants to the 18 women profiled in the pages of Women Who Light the Dark. The GFW advocates for and defends women’s human rights by supporting women’s groups around the world. Check out the Shine YOUR Light section of the colorful Women Who Light the Dark site to learn about international women’s issues and how each one of us can help.

Gianturco has also published other photographic collections of strong women in Celebrating Women and In Her Hands: Craftswomen Changing the World, also published by the impressive powerHouse Books of Brooklyn.

One other note: Britt’s latest post discusses an intriguing introduction to TheCommunity.com. Currently in its beta stage, TheCommunity.com is a “new social network for peace and human rights.” It offers a place “where you can come and find out about, follow, and in some cases directly interact with people who are working on a grassroots level to build peace. It is also an opportunity to meet others around the world who, like you, are interested in improving conditions in the world.”

Hope, indeed, does not disappoint. As Gianturco notes about the stories she’s gathered of the hopeful-beyond-reason, energetic, highly imaginative activists she’s met and photographed and profiled: “I thought, in a world so full of bad news, maybe it would be heartening to have good news like this. And, at a time when the international women’s movement is facing challenges, it would be great to have a reminder that good news is going on, that good work is being done, that progress is happening.” Thanks, Britt, for continually updating us on such good works! What a great way to start the day.

Beyond FICTION: Lisa See’s Long-Distance PEONY Signing

Author Lisa See recently sent out an e-mail to fans with a unique offer for those who’d like to purchase signed copies of her new novel, Peony in Love:

“Several people have written to me recently wondering how they could get signed or inscribed copies of Peony in Love to give as holiday gifts. I have made an arrangement with Dutton’s Bookstore, a fabulous independent bookstore right near my house, to make this happen.

“You can send an e-mail to Ed at Duttons@earthlink to place your order. Let him know if you’d like a signature only or a personalized inscription. If you’re nervous about sending your credit card over the Internet, call Dutton’s toll free at 888-Duttons. I’ll pop down to the store, sign your gifts, and the store will mail them to you.”

Lisa adds in her note that she has “a lot to be thankful for this year. THANK YOU for all of your kindness, your beautiful notes, and your wonderful and enthusiastic support for Peony in Love.”
I’m thankful for thoughtful authors and independent booksellers who’d take the time and effort to make this sort of promotion happen. What an easy way to make fans happy!

Beyond FINAL: The Many Faces of Parenting Well

Finally, Literary Mama’s e-mail announcing its current issue featured this terrific, memorable quote from Jacqueline Kennedy Onassis: “If you bungle raising your children, I don’t think whatever else you do well matters very much.” This reminds me not only of John Elder Robison’s sweet stories of the Sunday adventures he’d take his son on, but of some wonderful feedback from one of the literary mamas at The Writers’ Group, who recently noted in response to one of my comments, “I think it’s safe to say for each of us that in terms of balance, our families come first and then the writing…but because we need to write, we find a way.” Amen.

Beyond NON-FICTION: I’M EVERY WOMAN by Lonnae O’Neal Parker

Every issue of Literary Mama is worth reading, the current one especially so. Titled “Of Choices and Losses,” its individual pieces somehow combine to not only highlight the difficulties of so many of life’s choices and losses, but in their reflections make us even more thankful for every little good thing that comes our way.

The current issue features a comprehensive review of Lonnae O’Neal Parker’s I’m Every Woman: Remixed Stories of Marriage, Motherhood, and Work by one of my favorite LM columnists, Deesha Philyaw (who also had a feature story with PHOTOS of her own family in a recent issue of the gorgeous parenting magazine from Disney, Wondertime. Go Deesha!).

In I’m Every Woman Parker discusses the latest reincarnation of the mommy wars, and how these battles traditionally “ignore the multiple layers of consciousness permeating many black women’s lives,” thereby neglecting to include a critical group with the longest, most demanding history of the relationships that continue to exist between women and work.

“Feminism as a social and political movement has not fully recognized black women’s triple consciousness,” Deesha writes in her review, “our history and everyday lives, lives lived through the dehumanizing experience of slavery and the unfulfilled promises of Reconstruction; through lynching, Jim Crow, segregation; through contemporary racial disparities and injustice. At its worst, feminism has not only failed to challenge the larger society’s racism and classism, it has mirrored it.

“In I’m Every Woman Parker presents black women’s work and family lives in context, including her own life and those of other women. Lives linked to the past, grounded in a society that doesn’t always respond affirmatively when we ask, ‘Ain’t I a woman?’ In doing so, Parker reminds us that the personal is not only political, but often, universal.

“So it is in the tradition of and in homage to Truth, Du Bois, Hurston, and women ancestors Parker knows by name and those she does not that she writes I’m Every Woman. In doing so, she takes her seat at the national roundtable on work and marriage and motherhood.

“This book has practical wisdom for any woman who has ever been too exhausted to give a damn about the latest volley in the mommy wars.” Love it.

Beyond FOUNDATIONS: The WFCO

The Women’s Foundation of Colorado came to my attention via a story on our local NPR station earlier this year and I’m so glad I chose to check out the WFCO site again at this time. A co-founder of the WFCO and founder of the Women and Public Policy Program at Harvard, Ambassador Swanee Hunt recently announced a plan to match all contributions made to the WFCO through November 28. Equality and economic self-sufficiency for women in Colorado remain the goals of the WFCO 20 years after it was founded.

Beyond FEARLESS: Malalai Joya

I first read about suspended Afghan parliamentarian and women’s rights activist Malalai Joya in Tara Bradford’s Paris Parfait blog in the spring. Tara first discussed Joya’s suspension and followed with a reference to a PBS broadcast of the documentary Enemies of Happiness that covered Joya’s efforts to rout warlords and druglords from the Afghan parliament. I planned to write a post on the documentary and try to help raise awareness of it, but when it turned out Denver-area PBS stations weren’t going to broadcast Enemies of Happiness, I put off writing about Joya. She deserves to be widely known, however, not only for her political efforts but for her clinics designed to provide free medical care to Afghan women and children, and I hope to follow up in a future post with more details on her efforts. She wages a constant, treacherous, heroic battle as is evidenced by her tremendous story. It breaks my heart to read that she’s now forced to live in seclusion and is unable to see her husband, but I have high hopes that she and others working on her behalf in Afghanistan will some day prevail.

Photo © 2006 Marie Dorigny

Beyond FRIDAY: A Frenzy of Fall Follow-ups

One of the toughest things about blogging is the feeling that there’s so much to cover. Forgive the brief blurbs that follow, but at least this occasional approach allows me to mention and link to deserving resources that otherwise might never be featured here. Enjoy!

I recently finished John Elder Robison’s Look Me in the Eye: My Life with Asperger’s and have participated in an intriguing discussion of empathy on John’s blog. After hearing John’s Tattered Cover book store presentation that included references to his take on empathy and reading these views again in his book, I e-mailed John with some questions. John then sent me an e-mail stating my note had given him a bit to think about and that he’d answered some of my questions in a blog post. His November 20th post resulted in a comprehensive discussion thread on questions of empathy (“Is there more than one kind of empathy?”) that’s worth a read.

That discussion thread also led me to discover a new writer, Michelle O’Neill. In her blog, Full-Soul-Ahead, Michelle discusses her writing as well as life with her family, which includes a daughter with Asperger’s. On the subject of empathy, Michelle commented on John’s blog: “I think some Aspergians are misunderstood. My daughter has tons of empathy for others, but is not great at ‘reading’ situations, so sometimes she appears not to care. Once a situation is explained to her, she feels great empathy for others, perhaps too much.” Perhaps too much seems to be part of my problem in the empathy/emotional reactions department, but I think it’s a good problem to have.

As far as my overall reaction to John’s book: LOVE IT! Not only is John a treasure trove of stories that reveal a lot about the culture of the decades in which he’s lived, his ability to (very!) frankly discuss taboo issues lends a great deal of straight-forward, take-it-or-leave-it insights to his memoir. John makes no excuses for any actions he took to help him cope with what he endured as an abused child, what he escaped when he left home at 16, or what he learned in his 40s was an acknowledged neurological condition. And luckily for his readers he’s willing to discuss how hurtful discriminatory words and actions really are, especially for someone who’s not immediately recognized as being limited in any way:

“With me…there is no external sign that I am conversationally handicapped. So folks hear some conversational misstep and say, ‘What an arrogant jerk!’ I look forward to the day when my handicap will afford me the same respect accorded to a guy in a wheelchair…. Woof!”

And yes, I finally understand why John signs off with “Woof!” so often: “I am tongue-tied when approaching people unless they speak to me first. If I do speak up, I often say something that’s taken as rude or surprising—especially when I’ve told people something true that they don’t want to hear. That’s why I learned some years ago to utter a noncommittal ‘woof!’ if I need to begin a conversation or fill a silence. People hear that and are not sure what to say, but they don’t usually perceive a woof as rude. I try to work with whatever response I get.”

Finally (so much for a brief blurb), I remain impressed with the candor with which John wrote his epilogue regarding making peace with his parents while writing his book. This one section reveals how deeply all people feel, regardless of their outward display of emotions or lack of emotions. Reading this epilogue wrapped up the entire book for me, especially since it echoed points made in the Foreward by John’s brother, Augusten Burroughs, and because it lends considerable insight to John’s views on empathy and how strongly he cares about and loves the people who are close to him. I’m glad to have had the chance to learn about John through his book and blog, and encourage anyone curious about autism in general and Asperger’s Syndrome in particular to dive in and take a look around. You’ll be amazed.

Photo of Fall Foliage from Michelle O’Neil’s Full-Soul-Ahead; In Denver, what’s left of our fall foliage has been covered in snow for two days. Good heavy-duty cooking weather, but brrrr…..!

Beyond FUN: Gobble Gobble

From our nephew Evan in Chicago and from all of us in Denver...

HAPPY THANKSGIVING!

Beyond FEASTING: What I’m Thankful for This Thanksgiving

While my girls might feel slighted to see their brother and cousin pictured in this post, they’d agree that the health of their cousin Ryan (on the left) after the many surgeries he’s had to endure this year is one huge reason we all feel very blessed and thankful this Thanksgiving.

Ryan turned 16 in May. He’s always been a very (very!) bright kid with a wonderful, outgoing personality and a great sense of humor; he was looking forward to a summer full of swimming and ultimate frisbee. Unfortunately two weeks after his birthday at an end-of-school-year party, Ryan went under an indoor trampoline to retrieve a rolling basketball. At the same time another party-goer jumped onto the trampoline from a second-story window and hit Ryan in the back of his head, causing his nose to hit the concrete floor with considerable force and shattering his nose into more than 25 pieces.

Ryan underwent surgery a few days later to reset his nose. He also had a CT scan done that same day, which showed his cribriform plate to be broken. A piece of bone had pierced his spinal fluid sac and was resting where the right and left hemispheres of his brain meet. He was hospitalized and kept immobile in the hopes that his spinal sac would seal around the bone to stop the leaking of spinal fluid. When his nose packing was removed, it was clear a fluid leak remained. The decision was made to perform cranial surgery to remove the bone and seal the leak.

Initially, Ryan seemed to recuperate well from the cranial surgery. Then he started to notice a watery discharge coming from his nose each morning, indicating another spinal fluid leak. Ryan had another surgery to insert a shunt into his lower back so the shunt could drain the fluid around his brain, allowing the leak to dry out and seal on its own. The absence of spinal fluid to protect his brain caused him to suffer from severe headaches for months.

When the leak failed to dry out and seal on it own, last week Ryan had yet another surgery to patch the leak, followed by the placement of an exterior shunt to again dry out the area in his brain that needed to heal. He’s finally home with his family. As long as the location of the exterior shunt (in his lower back) remains dry and heals, his pain should subside as the amount of spinal fluid around his brain finally returns to normal. Hopefully that will be coupled by the full success of this last cranial surgery and Ryan will never have to endure anything like this again. We’re very thankful that Ryan not only is recuperating but is in good spirits and is surrounded by (lots!) of loving family members this Thanksgiving. We’re also thankful for everyone who’s showered him with love this year and offered to help his mom and dad whenever they needed it. It’s obvious that Ryan is loved by many; he’s also cherished more than he’ll ever know by friends and family located in cities and towns all over the country and around the world, including a certain little suburb of Denver.

May all your stories have happy endings this holiday season and throughout the New Year. Happy Thanksgiving!

Beyond FUN: A Celebration of Circles

I’ve got a lot going on but feel the need to list a few links to satisfy my own organizational mania. Perhaps these posts also will leave you feeling as inspired as I do by my recent brief but enlightening internet excursions:

Lisa Kenney over at Eudaemonia started a terrific discussion about the challenges so many writers face as they struggle to juggle 1) the drive to learn a new, challenging craft, 2) the desire to work at that craft as much as possible, and 3) the constant distractions and demands of everyday life. She also discusses exploring difficult personal/family issues in one’s writing, an issue I find fascinating. John Elder Robison (JER for the remainder of this post) brings up some interesting points, as do the rest of the visitors who’ve left comments on this particular post. Check out the full piece “Where My Head Is Tonight” and discussion thread here.

I find the comments sections of so many bloggers’ posts just as fascinating as the posts themselves. Over the weekend, Jen P commented on my last post that her husband has Asperger’s Syndrome like JER; when JER noted that he’d visited Jen’s husband’s blog Planet3RRY before, he added “It’s a circle, I guess,” to which Jen responded that she’s happy to be a part of the circle and added: “It feels a lot less isolating!”

So this issue of isolation came around full circle for me since 1) it’s discussed in Lisa’s recent post and 2) it was discussed by many of the moms who responded to my questions about life with children with autism. Author Patry Francis over at Simply Wait has talked about this before, too, referring to her blog and the community it created as a unique alternative to the graduate program in creative writing she’d always wanted to attend. It’s not only the feeling of being in a community that keeps so many of us blogging; for those of us who simply love to learn, blogging leads us into realms of reality we otherwise never would have experienced. It can be addicting, to be sure, which leads me back to Lisa’s original concern about simply juggling it all.

Reading is another addictive past-time. While I love to write reviews of books because the process of writing them helps me revisit what I’ve learned from a work, share it, and put it into a concrete form that helps me remember more details much more clearly, lack of time and the need to move on to new projects (and books!) often makes writing full reviews of every book I read a tempting but tricky endeavor. Not only has Love in the Time of Cholera by Gabriel García Márquez, for example, been reviewed a zillion times, it’s such a monumental work that I loved so much that it would take me a month to even write a rough draft of a worthy review. So I’ll simply link to a review I just discovered in the New York Times archive and now cherish: “The Heart’s Eternal Vow” by reclusive author Thomas Pynchon. Written when Love was first published in 1988, it’s an inspired tribute. Fair warning if you plan to read this book: some plot points I thoroughly enjoyed discovering along the way are mentioned in Pynchon’s review.

Suffice to say I found Márquez’s writing astounding and his plotting perfect. Every word he writes seems to resonate either with beauty or meaning or hidden implications that may or may not be later revealed. I love his character descriptions, which he bestows on even his most minor characters:

“She attracted his attention because of her mother-of-pearl whiteness, her happy plump women’s scent, her immense soprano’s bosom crowned by an artificial magnolia. She wore a very close-fitting black velvet dress, as black as her eager warm eyes, and her hair, caught at the nape of her neck with a gypsy comb, was blacker still. She wore pendant earrings, a matching necklace, and identical rings, shaped like sparkling roses, on several fingers. A beauty mark had been drawn with pencil on her right cheek.”

As Márquez is quoted in Pynchon’s piece: “In reality the duty of a writer—the revolutionary duty, if you will—is that of writing well.” While Gabriel Garcia Márquez makes this look easy, many of us know and appreciate just how difficult it really is. Which not only leads me to an immense appreciation for a master like Márquez, it brings me back to Lisa’s discussion of what writers do and why the hell we put ourselves through it. What a circle it is, indeed!

Circles Photo from Kensington (Ontario) Festival of Lights © 2003 Tara Kovaliv

Beyond FINESSE: John Elder Robison

Last night I attended John Elder Robison’s talk and book signing at the Tattered Cover Book Store in downtown Denver and I’m so glad I went. It’s always fun to meet an author and get a new signed first edition for my collection, but the highlight for me is listening to author presentations. The tidbits an author reveals (or refuses to reveal) not only about his/her past but about personality traits, motivations, inspirations, etc. that led to the writing of a book or the desire to reach out to readers add a great deal to my reading.

I arrived just a few minutes early and began to read the introduction to Look Me in the Eye when I realized (through blatant eavesdropping) that John’s wife was sitting directly behind me. She was telling another lady about a recent signing during which John interacted with a boy with autism who was having trouble coping with the stimulation of the event. The boy then attended another of John’s signings…and brought John a gift. After hearing this I wasn’t surprised to see John interact with two “young Aspergians” as he called them and invite them up to introduce themselves and then sit in chairs on the stage platform with him. One boy wasn’t satisfied with that and eventually asked for (and received from John) a bottle of water near the podium, asked (and was allowed) to read an excerpt from John’s book, and then (with John’s encouragement ) acted out an excerpt while John read. This child was high-energy all the way, and John accepted that fact and worked with it while the other boy (who’d admitted shyly into the microphone that sometimes he had really good ideas) seemed to decide it was a good idea to stay out of his friend’s way. Follow that with some tricky questions from the audience and then more than a few dozen energized readers anxious to ask the author many more questions, and it was evident John was in for a long night. And it didn’t seem to phase him.

I also was impressed by the manner in which John fielded tricky questions, addressing them and the person posing the question with great care and respect. He’d mentioned earlier that he’d learned a while ago not to think too long when someone asks him something in everyday conversation. He said that a long pause usually leads the other person to get impatient and ask whether or not he’d even heard the question. He barely hesitated to answer any questions last night, and yet his answers were right on: thoughtful, careful, and above all, respectful. Though I had to run out to get back home before too late and didn’t have a chance to chat with the other Denver Literary Ladies who attended the signing, introduce myself to John’s wife (after being rude enough to eavesdrop on her conversation), or join those waiting for a chance to hang out and talk to the author, I came away with the impression that John is an incredibly intelligent, talented good guy who’s been through hell; who took years to teach himself how to interact with strangers, make friends and develop tight-knit relationships; and who deserves every good thing that comes his way.

I’m looking forward to reading Look Me in the Eye over the holidays. At the same time, I suspect—now that I’ve met John and seen what a wise, kind person he is—the realities revealed in his book will break my heart more than once but leave me in the end with a renewed sense of hope. I shouldn’t be surprised; isn’t that what most really good books do?

Beyond FACTS: IN SEARCH OF HOPE by Mariane Pearl

Last year, Mariane Pearl traveled more than 100,000 miles to profile 12 women activists who are changing the world. Her interviews of these women were published in Glamour magazine and now have been collected in the book In Search of Hope: The Global Diaries of Mariane Pearl. Britt Bravo over at Have Fun * Do Good describes this wonderful work and the good just buying a copy can do. Since my last post pretty much wiped me out (lol!), I’m going to let Britt do the talking on this one. As usual, her writing is accessible, inspiring, and incredibly motivating.

P.S. In addition to the organizations highlighted in Britt’s current post, check out the groups she highlighted in this post for inspiration regarding more unique holiday gift-giving ideas that make a difference.

Beyond FASCINATING: Fabulous Feedback from Moms in the Know

My first attempt at a blogging survey resulted in a terrific array of insightful reactions and answers primarily from moms of children with autism. Rather than try to summarize this feedback, I’ve pulled quotes that I believe represent general points made throughout the comment thread. To attach quotes to names, please see the comments section.

I’d like to acknowledge everyone who participated and thank her (again!) for her input. I’ve learned so much through this experience and believe future BEYOND Understanding visitors will, too. MANY thanks to:

Kyra

Marla Fauchier Baltes at Marla Baltes

Kristen at From Here to There and Back

Brian** via Estee Klar-Wolfond’s The Joy of Autism

NiksMom at Maternal Instincts

Jen P at Find Out What Jen Finds

Mom to JBG at HoopDeeDoo

Ginger Taylor (who responded with an enthusiastic e-mail when I was still bouncing this idea around) at Adventures in Autism. This post from Ginger’s spring series “Autism in God’s Economy” offers even more insight into how much the help of family, friends, neighbors, etc. really does make a difference.

Sherry at Sage and Thyme for her kind words of encouragement.

And now for the Q&A:

What are the most hurtful misconceptions you run into on a regular basis?

“The most hurtful by far is that my child is assumed to be an undisciplined brat or bully who gets [neither] attention at home nor help with limits, how to take turns, share, and be kind-hearted. Little do these people know how MUCH time is spent with my guy on these very things and how much kindness and gentleness define his true nature. Little do they know that the difficult behaviors have their origins in sensory processing issues, developmental delays (such as a) lack of neural connections, complexity, and the lack of dynamic intelligence and the ability to perform all sorts of lightening-fast information processing.”

“The most common misconception about my child is that he would be socialized if only he were in school, that an ability to self-regulate, co-regulate, read and interpret body language, and navigate the complex world of social interaction is something that he would simply ‘pick up’ through osmosis. In the typical world, that’s true, but not so for those with Autism Spectrum Disorder (ASD).”

“Most hurtful is the misconception people have that because my son doesn’t speak and acts in many ways like a much younger child…that he is mentally retarded and doesn’t understand what is being said to him or about him. [He may not] at this particular age…but he is…frighteningly smart and takes in everything.”

“The most hurtful misconceptions you run into on a regular basis? The lumping/stereotyping. I had a school director say something like ‘we’ve dealt with children like this before but (they weren’t) violent.’ So it is hurtful when others see (my son) as a demon child…. For a flipside view, for those teachers (such as at church or…preschool) who are aware and sensitive to the issue, they go a little overboard regarding his disabilities versus abilities and let him get away with everything and change things around for him, taking away the structure that he needs which can very well lead to further issues. It’s almost like they don’t expect much out of him. This breaks my heart because he is brilliant, but can’t communicate that.”

If you could explain one thing to the general public about autism in general or your child/family in particular, what would it be?

“If I could explain one thing about autism it would be this: Autism is as varied and unique as each life that it touches. There are common threads, but most of the time ASD manifests itself in unique and surprising ways. And not all of it is bad. Or needs to be fixed. Or changed.”

“[I’d explain] that my autistic child’s sensory issues or developmental challenges are not going to be the same as the next child and theirs won’t be the same as the next one. And not every child responds to the same type of ‘intervention/therapy/medication/biomed/nutritional/treatment of the month’ as others.”

“I'd explain…that even though my boys are still largely non-verbal, they enjoy Sesame Street, Barney, etc. and have much in common with other kids their age.”

“[I’d explain that my son] is extremely social as long as he is comfortable and that he gets very easily overwhelmed.”

“[I’d explain] that schedules are often changed at the last minute and often getting together is more difficult to arrange. It is just the way for our family. If (my daughter) has a seizure we may have to cancel at the very last minute.”

“[I’d explain] that the stresses on a family dealing with autism are enormous and often hard to see on the surface; that these families often feel isolated and stretched; that these families experience all the same feelings of that those with typical kids feel—worry, hope, concern, pride, admiration, irritation, boredom, elation, etc.—mixed with some monumental concerns about their children’s ability to make their own way in the world, make meaningful connections and have meaningful work; that often the concerns are more simple and profound: What will happen to my child when I die? Who will look out for him like I do? With MY eyes, the ones that SEE his beauty, his worth, his value, his potential, even if he utters not a single word and behaves in ways that people can’t understand or don’t want to take the time to understand?”

How do most people treat your child in public, and how would you prefer to see your child treated?

“…People treat (my son) as they would any other kid most of the time because his disability is largely invisible unless he’s triggered (and then can yell or push or throw things or act floppy and fall down or lick things inappropriately) or overwhelmed in a setting with too many people or struggling to find his way ‘in’ with other kids and then he can be treated with impatience and fear and judgment. Some parents look sideways at me and usher their children away.”

“Most people don’t know in the general public because it IS hidden until it is triggered. I want to see my child treated like (any child his age). He wants friends too, he just doesn’t know how yet.”

“Sometimes people treat (my son) like he’s a kewpie doll and they want to touch him or they talk baby talk to him. Or worse, they keep repeating themselves over and over and over waiting for him to respond. When he doesn’t respond, they ask ‘Does he talk? How old is he? What’s wrong with him?’”

“Treat my child with the same dignity and respect with which you expect to be treated by everyone else.”

“Be nice. Have compassion for both the child and the parents. We are all doing the best that we can just like parents of typical children.”

“Have patience when conversing with my child. You really have to pay attention and listen to understand what he’s trying to convey. Rushing him makes it worse. And you can’t assume what he says is actually what he means, so repeating what he says and asking confirming or yes/no questions can really help you dig down to the root of the topic of conversation. Treat him with love and friendliness even if he doesn’t reciprocate it and don’t take it personally.”

“I wish parents would take more time to discuss communication differences among children and people. If it takes someone longer to find her words or if she doesn’t communicate in the same way other children do it does not mean she is any less important. That person still has something to say.”

If your child were to act out in public, would you prefer strangers ignore the behavior or offer to help in some way?

“I'm concerned about doing what is best for my child and if (that means) picking him up and throwing him over my shoulder so he doesn’t kick me and walking him out of an over-stimulating store, then that is what I have to do. I can’t spend time to stress over what people think. I’m happy knowing that I know what is best for him and I try my best to do that daily. I pray that other people understand and can empathize with me, but I can’t rely on that for solace, only that I’m doing the best that I can.”

“I would prefer someone look me in the eye and say, ‘man, we’ve all been there’ or ‘boy, this same thing happened to me the other day’ or simply ‘hang in there, this too shall pass’ because, let’s face it, what parent hasn’t ever had to deal with a public scene of some sort. It’s all a matter of degree.”

“I would prefer if people would ask if there’s anything they can do. It helps break the isolation, the separateness. It helps unite us as part of one team, the humanity team. It takes the sting out. It says, I get it. I’ve been in sticky situations too. I know it will pass. Can I lend a hand in the meantime.”

“In public, I’d like a sympathetic smile or shrug. A sense of humor is what gets me through the public spectacles, and I’d rather share a friendly glance than see people trying their best to ignore the chaos of my family outings.”

Other Powerful Pointers:

“See all behavior as communication.”

“If you want to offer help then by all means do so. Most parents of autistic children are tired and could use a helping hand.”

“Not judging is good, too. Don’t assume that you have the answers as to why someone is autistic. Most people who have children with special needs have researched till they are sick of it and know way more on their child’s diagnosis/health concerns than they ever thought possible. It is not necessary for a friend or teacher or anyone to give advice unless it is asked for.”

“A family is a member of their community for their whole lives, and then suddenly becomes an outsider to that community when their child becomes autistic...but no one realizes it. The relationships just sort of dissolve and the autistic family becomes alienated from the community as a whole. The only relationships that are maintained are usually ones where the other party steps up and adapts. Even when the autistic family knows this is happening, it can be very difficult for them to ask others to adapt to the new paradigm they are living, and will probably always be living.”

“I found that once our son was diagnosed the decisions that we made no longer made sense to our friends who remained untouched by autism. The most frustrating part became answering the question, ‘Well why don’t you just _____?’ Because in their world, that is what they would do to tackle whatever challenge we were dealing with. I encourage friends of people with autistic children to…instead say, ‘What can I do to help?’ And then help.”

** While not a mom of a child with autism, Brian offered his take on this discussion from the point of view of a person with autism, adding an important dimension to the whole project:

“…Autistics, themselves, should never be excluded in discussions that could affect them for years to come—indeed, throughout their lifetime. The most common misconception I run into…is that only parents and professionals can, in any way, ‘understand’ autism, and that autistics, themselves, (can) not ‘understand’ what their life could be like. That is simply a false idea…..

“(Also) hurtful is the idea that an autistic person can simply admit that his/her behavior is not appropriate and take immediate remedial action to correct that behavior at that moment. … An autistic person cannot simply ‘behave’ himself or herself, as the underlying disability…is not subject to the whims and thoughts of the person, but is a far deeper issue (over) which that person has little or no control. Therefore, when an autistic person is chastised for behaving the way he or she does, that only makes the autistic more isolated and more withdrawn from others. It’s no wonder each autistic is characterized (as) ‘living in his/her own world.’”

“Mother and Son” oil painting © www.1koo.com

Beyond FAMILY: Quick Questions for Parents of Children with Autism

I’ve been chatting with Kristen over at From Here to There and Back about what parents of children with autism might like to communicate to those of us with little or no experience in this area. Any readers who’d like to chime in are more than welcome.

As Kristen noted in one e-mail, there exists “tremendous diversity and a wide range of opinions and thoughts and hopes within the autism community.” Despite the fact that the Autistic Spectrum covers a wide variety of disorders, people outside that community tend to group all people with autism into one category. This sort of “lumping and labeling” tendency, of course, leads to misunderstandings and often discrimination. Here at BEYOND Understanding, we’re all about exploring such misunderstandings in order to expose them and (hopefully!) contribute in a small way to dispelling them.

If you have a child or children with autism, please consider any or all of these questions:

What are the most hurtful misconceptions you run into on a regular basis?

If you could explain one thing to the general public about autism in general or your child/family in particular, what would it be?

How do most people treat your child in public, and how would you prefer to see your children treated?

If your child were to act out in public, would you prefer strangers ignore the behavior or offer to help in some way?

Any insights will be greatly appreciated!! Thanks for stopping by.

Photo © JacksMum at The Last Thing to Go is a Sense of Humor

Beyond FOOD FOR THOUGHT: From Gabriel García Márquez’s LOVE IN THE TIME OF CHOLERA

“She made a long and detailed tour with no planned itinerary, stopping with no other motive than her unhurried delight in the spirit of things. She entered every doorway where there was something for sale, and everywhere she found something that increased her desire to live. She relished the aroma of vetiver in the cloth in the great chests, she wrapped herself in embossed silks…. In the spice shop she crushed leaves of sage and oregano in the palms of her hands for the pure pleasure of smelling them….”

As I read I jot down lines I love—usually in journals but that’s not always the convenient option. Rather than continue to scatter these gems and hide/lose them forever, I thought I’d start “jotting” them down here for others to read…and me to better remember. Some I like because they capture a fleeting truth; others, like this one, reveal why certain writers continue to amaze with their specific, deliberate manipulations of the written word. I crave such patience and deliberation…as a writer, as a parent, as a person.

p.s. “Vetiver” is a grass from India with aromatic roots; its oil is used in perfumes. And yes, I just looked that up!

Beyond FACTS: LOOK ME IN THE EYE: MY LIFE WITH ASPERGER’S by John Elder Robison

Yet another title on my TBR list, John Elder Robison’s Look Me in the Eye is described as a “moving, darkly funny story of growing up with Asperger’s at a time when the diagnosis simply didn’t exist.” John is big brother to Running with Scissors author Augusten Burroughs. Their childhoods were hardly typical, so it’s not surprising both brothers and their books continue to get a lot of attention. Robison’s cover and the fact that Look Me in the Eye sounds like a unique, well-written work don’t hurt, either. Thanks to all that, John and his memoir are boosting public awareness of autism in general and Asperger’s Syndrome in particular, a task John continues in his fantastic blog.

I skipped over to John’s blog after reading a series of intriguing posts on Kristen’s From Here to There and Back yesterday. Her November 6 post links to Kim Stagliano’s “The Boys on the Bus,” an essay that sheds remarkable light on why the American Academy of Pediatrician’s recent reports regarding early diagnosis have been received by parents of children with special needs with more than a little skepticism. Not only is Stagliano’s essay chock full of insights, but Kristen’s visitors (most of whom are parents of children with special needs) reveal in their many comments the blunt realities of dealing with so many professionals unable to serve the children they’re supposedly trained to help.

I found these sentiments echoed in one of John’s recent posts, in which John and his visitors discussed how people with Asperger’s are treated outside the United States. When Australian and Asian cultures were mentioned as potentially open-minded and considerate of people with Asperger’s, one parent told of the troubles she encountered when she tried to get help for her son while in Australia. It seems medical professionals and educators around the world remain far behind on the learning curve compared to the parents and guardians of children with various forms of autism and other special needs. One of my favorite comments from Kristen’s blog on this issue is from a visitor identified only as James: “They (medical professionals and educational leaders) couldn't see the coming crisis and now, faced with the issues being raised here continue to scream it ain’t so. It IS so. It CAN be helped. It can be countered. It takes a deep concern washed by love.”

“A deep concern washed by love.” How much that says. Thanks, James.

While I don’t have a child with special needs, I grew up next door to a foster family and babysat over there for years. One of the children they adopted, Mark, was autistic to such an extent that he did not speak but communicated primarily through gestures and noises. He was high-energy and always on the move, with thick curly hair and big brown eyes, and he seemed to prefer wearing no shirt; maybe that’s why I remember so clearly how thin he was, from his ribby torso to his long skinny arms and legs. We called him Marky for a long time, but once he started school his mom asked us to call him Mark. (I say “us” because my sisters babysat over there a lot, too. It was another VERY busy household.) Soon the sight of Marky running in circles around the tree in his front yard with hardly any clothes on gave way to the sight of Mark, fully clothed, name-tagged and with a backpack, climbing onto a special little school bus that seemed to appear and reappear just for him.

I don’t know what school Mark was bussed to and I never heard him speak, but when I was in college his dad, whose background was in education and who served on the local board of education, was thrilled by advances in technology that allowed a child to “speak” by typing on a keyboard. I know this technology remains controversial and that some argue that aides helping students actually control the process, but I also remember another autistic boy I babysat being quoted in an article in the Syracuse Post Standard as saying hello to his beloved parents for the first time. This second boy was much older than Mark when I babysat him, and I was completely untrained for the experience and did not excel at that job. I was the overachiever college student trying to make extra money while juggling a dozen other demands; needless to say being exhausted and impatient doesn’t bode well for working with anyone with special needs. I have a feeling many parents find the professionals they’re dealing with on a daily basis are juggling much more than they can handle as the diagnosed cases of autism continue to rise to epidemic levels. It seems a troubling cycle that needs to be addressed by our school boards and governing powers from county levels on up.

I returned to wisegeek.com for definitions on Asperger’s Syndrome and the autistic spectrum. Suffice to say that AS, a neurobiological disorder, is currently considered to be part of the autism spectrum, but that people with AS often function on a very high level intellectually. John Elder Robison, for example, has an unusual ability to “visualize electronic circuits” that led to his design of some amazing guitars for KISS when he was a young adult. Now he repairs (and could probably rebuild) high-end cars.

The autistic spectrum refers to a spectrum along which people may be placed based on the autistic traits they demonstrate. Autism is a disability that stems from problems with the central nervous system. It can impact communication, social functioning, and creative thinking. I’m not so sure about that last one, though, since the people I’ve known and read about who are considered autistic say and do some incredibly creative things. Bottom line: they’re people. Hopefully blogs like Kristen’s and her friends’ and books like John Elder Robison’s will continue to drive that fact into the brains of the rest of us “normal” folks.

Beyond FACTS: Darfur, Sudan and The Comprehensive Peace Agreement

Britt Bravo of Have Fun * Do Good explains significant details regarding the on-going Darfur crisis, helping her readers better understand current and past developments as well as what’s at stake for the future of all Sudanese citizens. Britt based her outline of these events on what she’s learned in monthly conference calls for Sudan activists. For information on the organizations that sponsor these calls and how you can sign up to listen in, check out Britt’s November 1 post.

I’m noting a few brief bullet points not only to try to help spread the word but so I can grasp more fully what’s really going on in Darfur:

· The violence in Darfur is part of a history of violence in all of the Sudan.
· In 2004 a permanent ceasefire agreement brought a 21-year civil war to an end.
· In 2005 both sides in the war agreed to the Comprehensive Peace Agreement (CPA)
· The CPA calls for a census followed by 2009 presidential and parliamentary elections
· The end to the violence will require the removal of the National Congress Party, one of the groups that waged the civil war, from power
· Life in the refugee camps is treacherous. Women and children live in constant fear of attack and rape while youths are forming gangs. Humanitarian workers risk their lives (and their sanity, I’m sure) every day.

Britt offers not only much more information, but guidance regarding how anyone can help. Check out her post and follow the links. I’m especially intrigued by the fourth annual Darfur Fast on December 5 and hope it’s a huge success. All proceeds will go to the Genocide Intervention Network’s Civilian Protection program.

Anyone with a phone is also encouraged to contact members of Congress regarding legislation and funding to support peacekeeping efforts—including humanitarian aid and restoration—in Darfur. Brava, Britt, as usual…and THANKS.

Beyond FUN: Maui and Chicago

My first trip to Hawaii was indeed a fantastic get-away with my husband, and it was followed this past weekend with a trip to Chicago to see my youngest sister, Kristen, and her family. Kris and her husband welcomed Evan Ambrose seven weeks ago, and the 28th was Evan’s baptism. I’ve used Shutterfly for a long time and thought it might be fun to use it to share photos with fellow bloggers. To see a few dozen of my favorite shots from our trip to Maui and/or take a peek at my sweet nephew, feel free to visit http://www.sustenancescout.shutterfly.com/.

Funny how even a stunning sunset fails to compare in beauty to the sight of a baby’s first smiles. Evan blessed his proud parents and many visitors with lots of smiles last weekend. Enjoy!

Photo © 2007 Scout