More perspectives on Road Map…

Brenda of Dr. Brenda MD Medblog writes as both a medical professional and a mother who’s spent time in the NICU. Reading Road Map reminded her of the birth of her own twins, and she says, “I recommend it to anyone involved with a child born with any sort of disability. As a physician, mother and aunt of a child with special needs, this book touched me in so many ways.”

And Liita of Wintertree Design Blog writes that her “21 Group” is reading it together. They are a group of 20 families with young children who have Down syndrome. She says, “I could not put this book down. It was like looking in the mirror. I was mesmerized by the simplest of Jennifer’s daily routines with her children. Her writing style is captivating and descriptive….LOVED IT!! After reading The Memory Keeper’s Daughter last year, Jennifer’s book was very refreshing because it is real and all about NOW.”

More moms reading Road Map

Jennifer recalls her experience with her baby’s capillary hemangioma, which a doctor casually referred to as a “birth defect” at Snapshot. She also writes about Road Map for this week’s “5 Minutes for Books” at 5 Minutes for Mom. (Go there for a chance to win 1 of 3 signed copies.)

At Camp Homeschool, one mom writes from the very heart of the experience: she’s just learned that her unborn child has Down syndrome, and is in the middle of the process of sorting out what this information means to her and her family.

And Sally of Charlie’s World related especially to the part where I describe my thoughts on evaluations, which was a “goosebump moment” for her. She also writes, “I believe this is a ‘healing’ read, which is a strange claim, but I genuinely felt better after reading it. It’s deeply comforting to read the thoughts of someone grappling with the same problems, joys, emotional highs and lows and prejudices that you are. Especially when they are a little further down the road and their message is ultimately, one of hope.”

From ABILITY Magazine…

Correlations of Autistic Behaviors Shown in Children with Down Syndrome

“In a continuation of his research looking at children with a co-diagnosis of both autism spectrum disorder (ASD) and other well-known genetic disorders, Dr. Walter E. Kaufmann and colleagues recently published a study that examined the difference in brain structure between children with either Down syndrome alone and children with both Down syndrome and ASD. Dr. Kaufmann and his research team at the Center for Genetic Disorders of Cognition and Behavior (GCB Center) at the Kennedy Krieger Institute believe this will provide more clues to the cause of autism, and lead to better diagnosis and care of children with both Down syndrome and ASD.

“The study, which appears in the online journal NeuroReport, used anatomic MRIs to compare the brain scans of children with Down syndrome to children with both Down syndrome and autism, as well as a control group of typically developing children.

“The study found that the brains of children with a co-diagnosis had significantly more white matter in the brainstem and cerebellum when compared to children with Down syndrome alone. The data also showed that children with both disorders exhibited an accelerated brain growth between the ages of two and five years-old. The volume of white matter in the children with a co-diagnosis tended to decrease slightly with age, but the volumes of white matter remained relatively constant in the group with Down syndrome alone.

“The study supports the theory that the underlying cause of autism lies in the cerebellum, particularly the enlargement of the cerebellum due to increased white matter. The findings also suggest that the underlying mechanisms of ASD in Down syndrome may be shared, at least in part, with those in autism alone. The early pattern of accelerated brain growth in childhood with Down syndrome and a co-diagnosis of ASD resembles the pattern of head and brain growth typically observed in children with autism alone and differs from children with Down syndrome alone. These differences make it important for researchers conducting brain imaging studies on Down syndrome to carefully evaluate the presence of ASD, as autism in Down syndrome may often go undiagnosed.

“Perhaps most importantly, the increased white matter in individuals with Down syndrome and a co-diagnosis of autism represents a distinguishing feature that is associated with abnormal behaviors which are typically seen in children with either disorder, namely repetitive motor movements known as stereotypies. Further research on autism in Down syndrome as well as autism in other conditions may help clarify the causes and functional consequences of autism in the general population.”

Here’s the link.

A wrap-up, of sorts

There’s an old joke about a book critic who complained of a thick tome, “Characters are introduced, then quickly dropped!”  What was he critiquing?  A phone book.

I feel that way, a little, about life here at Pinwheels. Characters are introduced, then quickly dropped! In an effort to make this right, here’s an update:

Yesterday I was thinking about time.  More specifically, I was thinking about a river that connects us to our past and to our future–which is to say, genetics.

The neighbor’s cows escaped through the rusted wire fence and across the rickety cattle guard into our little valley of waving green grass (who could blame them?).  But the grass is not theirs to eat, nor is it ours to share, so Tom and Carter went out to push them back from whence they came.  As an afterthought, they took our puppy, now more dog-puppy than puppy-dog (he’s six months old) named Bailey.

Bailey hasn’t been trained (yet, the best books say wait a while) but he has been around calves, and cows, and kids too, for most of his young life.  The last time I was paying attention, the bigness of the cows seemed to scare him, and he mostly twined in and around my feet, staying close. 

I’ve written before about his bloodlines–cowdog from three breeds–and his gangly, spotty, long-tailed awkwardness.  He seemed all-legs, or all-paws, or all-tail, for a long time.

But not yesterday.  Gently, carefully, methodically, he gathered the cows and the calves and knew, without being told, when to move up, and when to hold back.  When to push, when to wait.  And when to head home with what I swear looked like a smile on his doggy-face.

It was all there, in his genes.

I thought about Avery, and his blue eyes from his parents, his blonde hair from us too.  His long fingers and toes, his button nose.  And also, his extra chromosome, another factor to figure in.  Watching Bailey running through the tall grass was a pleasure–as was holding Avery’s small hand in mine.

~

The hats!  After much deliberation (of the purposeful kind, as in, “What do you think we should do with the hats?” asked of friends and family in conversations and emails; and of the disorganized kind, such as moving the hats from one room to another, in and out of closets, here or there, anywhere?) this is what I did:  I dusted them off, rewrapped them in acid-free tissue paper, and put them back in the eaves where I found them.

With the hats, I put the old papers, and the books, and the magazines and drapery samples and the two sleeveless cotton dresses.  And all the old photographs, save one:  a fading black and white picture of a woman in a dark dress holding a toddler.  They both are smiling.  I put it in a frame that I keep on a shelf in the kitchen. 

~

The lilacs have bloomed, and are now beginning to fade.  There’s a patch of poppies outside the front door that will bloom next.  The chain-sawed bushes are returning, slowly:  two more lilacs and a chokecherry.  They won’t bloom this year, but maybe next.

The cottonwoods along the creek are full of leaves that shimmer in the breeze.  The meadow across from the house glows in the early morning sunlight.  Clouds come and go across this little bowl of a valley, usually west to east.  And last night, Tom and Carter watched a lone bull elk pick his way up the rocky hillside.

~

Lilacs and tall grass and wind in the cottonwoods; a puppy and my children and the neighbor’s cows–a river of connections, the river of our life.

 

Fresh Rhubarb Cake 2 Ways

Rhubarb is one of those plants that seems to jump for joy with abundance: when you have rhubarb, you have a lot of it (I’m thinking here of zucchini, too, and the old joke about the only time you have to lock your car in town is August, because if you don’t, someone will put a zucchini in it.)

But I digress! Rhubarb is a fair source of potassium, contributes minor amounts of vitamins, and is low in sodium. The crisp, sour stalks are loaded with vitamin C and dietary fiber. And here’s a delicious recipe for a moist, rich cake that you can serve one of two ways:

For the cake

1/2 cup butter
1 cup sugar
2 eggs
1 cup buttermilk
1 teaspoon vanilla extract
2 cups flour
1 teaspoon baking powder
1/2 teaspoon salt
2 cups fresh rhubarb, diced

Preheat oven to 350°. Lightly butter a baking pan and dust with flour. In a medium-size bowl, cream the butter and sugar. Add the eggs, beat well. In a small bowl, combine the buttermilk and vanilla. Into a third bowl, sift the flour, baking powder, and salt.

Add 1/3 of the flour mixture to the creamed mixture and mix well. Beat in half the buttermilk/vanilla. Add another 1/3 of the flour, then the rest of the buttermilk/vanilla, ending with the remaining flour. Stir in the rhubarb. Spread in the prepared baking pan. Bake for 35-40 minutes.

If you like, cut warm cake into wedges and sprinkle with cinnamon sugar, then drizzle with a simple vanilla sauce:

Vanilla Sauce
1/2 cup sugar
1/2 cup evaporated milk
1/2 teaspoon vanilla
1/4 cup butter

In a 1-quart saucepan, combine all sauce ingredients. Bring to a boil; simmer for about ten minutes.

Or, let cake cool, then cut it in half (it’s a very forgiving cake) to make a layer cake. Spread strawberry jam, then whipped cream, for the filling. Reassemble cake and frost with more whipped cream, then top with a light dusting of sugar, or flaked coconut.  (This was how I made it for the boys’ birthday–it’s a very pretty, festive cake).

Now we are 5

The twins turned 5 today, and I’m stunned, and happy and proud too, that so much time has passed, and that they’ve grown into the little people they are. We celebrated with a fresh rhubarb cake (Bennett’s request) and whipped cream on top (Avery’s) and lots of singing: I think we sang the “Happy Birthday” song at least a dozen times. And too, blowing out the candles, and the wishes. I know it’s not my birthday, but I made a wish anyway: more. I want many, many more years of this happiness.

A few days ago, a mom to a child with DS sent an email and asked, “If there was only one piece of advice you could give me, what would it be?” I didn’t know what to tell her; or rather, I had too much to tell her. This was my partial attempt at an answer:

There’s so much to consider! About learning how to manage prejudice, and about what to say and when to say it, and about how to juggle schedules and therapies and all that. There’s forgiveness, for all of us, and strength, and love, and hope, too. And faith, in yourself, and your child. I guess if I had to pick just one thing, it would be this: let your child show you the way. You will find it, together, and it will be amazing. It will be all the things you hoped it would be; it’s all there, waiting for you.

I don’t think it was a particularly good answer! And so now I’m wondering, what is the one piece of advice you’d want to share with new parents?

Help?

It’s been a little more than 2 months since Road Map’s release; most of you, Pinwheels readers, have been with me through it all, even before the book was published, while I was still writing and then later, fretting, and then later still, writing about it nearly every day while I was on blog book tour, or linking to other people who were writing about it, and so on and so forth.

Which is to say, I can understand if you’re getting a little tired of it all.

But I have one last thing to ask: if you’ve read it, would you consider leaving a comment in the review section at Barnes and Noble, here, or Amazon, here? To date, there are just 5 between both sites, which makes it seem as if no one is reading. But I know–from your emails about your beautiful families, and your blog posts about your own experiences–that this isn’t the case, and I want other people to know it, too.

I’m asking because I think it’s important. I know I read the reviews when I’m trying to decide if I’ll buy a book. And the scarcity of them makes me feel as if I’ve sent one of my children out into the world unprepared–like it’s snowy, and we’ve forgotten the mittens; or it’s a bright sunny day, only no one has any sunblock or a even a hat. So I’m asking, do you have anything to share?

If you’ve read this far, thank you. If you go one step further, and leave comments, thank you a thousand times.

Everyday miracles

Bob Denver (whom you might know as Gilligan of “Gilligan’s Island”) is on my mind, perhaps because the kids have fallen in love with a DVD from the library called “The Wackiest Wagon Train” (which I can not recommend!) featuring, you-guessed-it, Bob Denver as a Gilligan-esque ranch hand. Which has only a tiny relationship to this week’s ParentDish column about stereotypes and making new friends–but if you read it, you’ll know just what I mean.

More Road Map news…

Stacey’s review of Road Map to Holland was published at a great new website, Root & Sprout: where kids and parents grown together. From the site’s creators: “Here at Root & Sprout™, we believe the relationship between parent and child is one that grows through mutual love and respect. With gentle, hands-on parenting, we can give our children the necessary roots to help them sprout.”

The website also has a call for submissions: June 17 and July 15 are the upcoming deadlines, as well as additional dates for special issues (follow this link for more details.)

Thanks for the link, Stacey!

“Beyond FANTASTIC: Road Map to Holland”

Karen DeGroot Carter, author of the novel One Sister’s Song and of the blog BEYOND Understanding has written a review of my book that looks at some of the writerly elements (my use of repetition, and my references to books–especially children’s books–as a sort of touchstone), as well as the personal. She says, “The overall message I took from Jennifer’s writing is an immense sense of wonder and acceptance. This is a story of a woman who discovers her greatest joy is not to improve or push her loved ones to excel, but to realize she’s giving the greatest gift simply by teaching those she loves how to love. Sometimes we all need a friendly reminder—or a dramatic one if we’re really hard-headed—that THIS is what really matters. Or at least what ought to matter.”

“Reading Material”

Angie of Our Crazy Life is mom to 3 kids, which is why it took her a while to read my book. Otherwise, she says she would have “devoured it in a day or two.” She writes, “I definitely recommend it. I may even buy a few copies for my parents and inlaws. It’s hard to take the time and have some of the in depth discussions–let alone try to explain how you feel. The author hits on so many feelings and thoughts that you have–even though our experiences are different…we had a prenatal diagnosis, we had a baby with a heart defect who needed surgery, we didn’t have twins! It’s a new community that we’re apart of now, the Down syndrome community.”