One step at a time


Avery takes steps, now, when he’s feeling brave. I write about how long we waited for this milestone, and what it taught me about Avery, and myself, in the “Off the Beaten Path” column now up at


Listening to your instincts

Kyra Anderson of has a terrific post up at 100 Hats called, “Saying Yes When Experts Say No.” In it, she writes about the importance of listening to your inner wisdom, that gut instinct a mother knows so well. There’s also a call for submissions in the sidebar, if you have a personal experience to share in which you followed your instincts. To read more, go here.

Thank you, Kyra, for reminding me that when it comes to my kids, I’m the expert.


I took a walk today, for the first time in a long while. A landscape that was once all shades of white, is now green. Blades of grass, tips of evergreens, the tiny buds on the Oregon grape. Green shoots in the underbrush, green moss hugging tree branches. Everywhere I look, green.

It was as if the woods were a friend of mine, one I hadn’t seen in too long, with a fresh haircut and a new dress.

Hello, you!

The beginning of something new


I’ll be writing a regular Thursday feature post for ParentDish, called “A Little More.” My posts will be about Avery and his extra chromosome; they’ll also be about the extra laughter and love all children bring to life.

Today, a preview is up. It’s called “Letting Go of Fear” and in it, I write about the ways in which holding on to fear really just holds me back.

It’s an honor to be part of a site that’s home to so many great writers (all the contributors have their own blogs as well, they are terrific) and I can’t think of a time when I’ve gotten a warmer welcome. I hope you enjoy ParentDish as much as I do.

Special needs mama Vicki Forman

has a new column up at Literary Mama called “Bravery and Fear.” In it, she writes about caring for her son Evan:

My son hates to have his teeth brushed or his nails trimmed. Each is a struggle that results in violent cries and tears; both require that he be pinned down, either between my legs or with someone else holding him while I do the job. What I know is this: when it’s time to put Evan into a human straight jacket, mama knows best.

Thankfully, my kids are mostly cooperative when it comes to cutting nails and hair and even taking medicine. But there’s one instance when I feel like the Big Bad Mom: slivers. We have an old, weathered porch, and each summer someone inevitably gets a splinter of wood embedded in a little knee, or a tender heel, or a tiny toe. And it always falls to me to remove it.

To read more of Vicki’s column, go here.

May 1 is Blogging Against Disablism Day


For more information on how to participate, go here.

And for inspiration, the following is from a post about the significance of Blogging Against Disablism Day, written by one of its creators, Lady Bracknell:

We exist in every culture; every race; every class; every creed; every nationality; every political party. We have arrived here as a result of accident, injury, illness or simple genetic glitch. We are adults and we are children; we are men and we are women; we are straight, we are gay, and we are bisexual. We are too frail to leave the house and we are strong enough to yomp across continents. We are desperately ill and we are at the peak of physical fitness. We die young and we live to a ripe old age. We are accepted in our communities and we are locked away in institutions. We have been this way since birth, and we have been this way since yesterday. We are the premature baby and the great-grandparent. We are the criminal underclass and the pillar of society. We are the warmonger and the pacifist. We are the teacher and the student.

We are, without a shadow of a doubt, the most diverse minority group on the planet. We are everywhere you look, and yet you do not see us. We are one in seven*.

To read the entire post, go here.

Rice pudding for a rainy day

1 cup cooked Basmati rice
1 cup milk
1/2 cup cream
1/4 cup honey
1/4 cup raisins
1 tsp. vanilla extract
1/4 tsp. nutmeg
1/4 tsp. cinnamon
2 Tb. cornstarch

In a medium saucepan, blend cornstarch and milk until smooth. Add remaining ingredients, stirring constantly until pudding thickens (it will continue to thicken as it cools, too).

There’s something about the creamy, sweet, taste of this pudding that soothes even the crankiest toddler.

What’s your family’s favorite “comfort food”?

Giving it all away

I can’t watch the television or listen to the radio right now; the news of the shootings at VT is everywhere and I find it troubling and awfully, terribly sad.

So I will tell you about the turkeys. A flock of wild turkeys make their home on this little peninsula. They travel about from place to place, making their way up and down the roads as if they owned them. On occassion, a male will spread his tail feathers in a showy gesture, part “look at me!” and part “back off!”

This land, and the lake around the peninsula, and most of the valley to the south of us, is part of the reservation belonging to the Confederated Salish and Kootenai Tribes (CSKT), so it’s an area of mixed spirituality–mostly Catholicism flavored with elements from traditional Native American beliefs.

The turkey, to many native peoples, is the Give-Away Eagle. Turkey is meant to call forth a deep and abiding recognition of the sacrifices of both the self, and of others. Turkey reminds us of our gifts–material and spiritual.

Today, the little flock of wild turkeys have found our yard. They mill and peck in the greening grass in front of the garden. As I watch them, I’m reminded of cycles, and circles. Today, I give my grief away. Today, I am thankful for life.

Bless You

At our house, a sneeze is met with a chorus of “Bless You”s. It’s a habit, I suppose, one that makes me stop whatever I’m doing and think, yes, bless us all.

Lately, Avery has begun to fake-sneeze. After a round of “Bless You”s, I’ll hear a little “achoo”, and the blessings start all over again. I don’t mind; in fact, Avery’s new game doubles the number of “Bless You”s flying around the house. With so many of them in the air, I feel blessed, indeed.

Gifts at 20% Off


Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives, edited by Kathryn Lynard Soper (Woodbine House, 2007), is a collection of personal writing by 63 mothers of children with Down syndrome, with a foreword by Martha Sears, also mother to a child with Down Syndrome.

Here’s an excerpt from my essay in Gifts, “First Words”:

When Avery was first diagnosed, we were told many things, mostly about how hard our life would be, how difficult. He was presented to us as a set of complications. What they left out was Avery. No one told me how beautiful he would be. No one told me how sensitive he would be. No one told me he would hug me with his whole body, wrapping arms and impossibly nimble legs around me at once, such a strong embrace. No one factored in love.

If you’d planned to preorder a copy, the book is on sale from now until May 1 here.

Today is National Siblings Day

And Carter writes:

“I love my brothers very much. I have one who’s wild and can run and play wild with me. His name is Bennett. I have one who is cuddly, and good for playing patty-cake and walking and I can hug him. His name is Avery. And that’s all I have to say.”

Also, here’s a story of friendship and inclusion, written by Alana Listoe of the Helena Independent Record. Thanks to Sandy for the link!

GABA receptors and Ginkgo Biloba

The current Riverbend Down Sydrome Parent Support Group newsletter (Feb. 2007) has a recap of information presented at the 9th World Down Syndrome Congress, including a paper by William Mobley of the Stanford University School of Medecine titled,”Exploring the Neurobiological Basis for Cognitive Problems in Down Syndrome.”

There’s also a commentary by Dr. Teresa Cody, in which she discusses the use of Ginkgo Biloba as a mild GABA inhibitor, to help improve short term memory.

From Wikipedia: “The extract of the Ginkgo leaves contains flavonoid glycosides and terpenoids (ginkgolides, bilobalides) and has been used pharmaceutically. It is mainly used as memory enhancer and anti-vertigo agent. However, studies differ about its efficacy.”

Also from Wikipedia: “Ginkgo may have some undesirable effects, especially for individuals with blood circulation disorders and those taking anti-coagulants such as aspirin…. Ginkgo should also not be used by people who are taking monoamine oxidase inhibitors (MAOI) or by pregnant women without first consulting a doctor. Ginkgo side effects and cautions include: possible increased risk of bleeding, gastrointestinal discomfort, nausea, vomiting, diarrhea, headaches, dizziness, and restlessness.” Go here for more information.

Jaden’s Journal has a post up about nutritional supplements and Ginkgo, here.

I don’t know how I feel about this information, yet. Avery has his bloodwork in a month, for thyroid and Celiac disease, and I want to get that done before we change anything. But I am very heartened by the people at Stanford University, Dr. Mobley in particular, who continue to look for ways to improve the quality of life of our kids.