Tuesday, June 8, 2010

Official DownStream 2010 Report...

It is with great pleasure that I bring you a few descriptive images from the day. Thanks to Mike Howes from Granite Bay Fly Casters for the most of these images and Shawn Pittard for providing us with a little write-up. The day was a huge success for 20 people with Down syndrome and 70 plus volunteers.

“Do not let what you cannot do interfere with what you can do.”

20 kids with Down Syndrome put John Wooden’s words, printed on the backs of their tee-shirts, into action at the fourth annual DownStream fly fishing event. For the second year in a row, Mark and Kristen Brown provided full access to the Willow Creek Event Facility on their 40-acre ranch near Browns Valley. 70 volunteers coming from fly fishing clubs, local schools and sponsor employees were on hand to guide the kids through a fun-filled day of learning and doing.

The kids learned how to tie a fly, paint a fish picture, how to cast and to see what fish eat. They also learned how to catch fish, lots of fish. High-fives were everywhere as the kids caught feisty rainbow trout in the ranch’s ponds. After a hearty lunch, complete with ice cream cones, the kids went right back to fly fishing. Fish stories were in the making and more than one young fly-fisher could be heard asking a parent for “One more cast.”

The Appeal-Democrat in Yuba City wrote up a little something: Article

Soon to be fly fishing legend, Tommy Berg with his hand-tied flies.

A huge thanks to all who make this possible,

For more on the fine folks who made this possible, click here.

The fifth annual event has begun brewing, make sure to follow us on Facebook for future events.

Thank you to all my friends, family, students, parents, sponsors and volunteers for making this unique program come alive.

Monday, June 7, 2010

A Mother's Diary: Part 6, Locomotion

Haven't read read part 5, click here.

When Mark was eighteen months old, he discovered the “Jib-Skid.” The world was becoming an interesting place and he had made it clear he was not going to miss any of it. The Jib-Skid was his first independently invented form of locomotion, although it was clear it had either come with this genetic package, or he had seen it somewhere else…. For the record, with months of physical patterning, we had been trying to teach Mark how to crawl on all fours. Patty, the physical therapist and I would crawl around the floor around him and move his arms and legs in a crawl sequence called “patterning” so he could see and “feel” the rhythm. He would sit and watch us with obvious disinterest and would object to this very boring form of entertainment by repeating his one complaint hoot after another until we stopped. Although Patty and I firmed our thighs up, Mark’s opinion of learning to crawl was clearly that it tedious and slow.

The “Jib- Skid” was his chosen mode of transportation. No matter how we describe it delicately, it was a genuine chimpanzee scoot. Mark would sit, shift his upper body weight to his hands and swing his legs under him. As his upper body strength and coordination matched his growing curiosity and motivation to get around independently, there was no nook or cranny safe from his attention.

So there he was with his cute flattened face, button nose, slanty eyes, and his smaller, low-set ears, strong upper body, hooting unintelligible words in public. In addition, Mark had monkey feet. They were very narrow at the heel and wide in the foot. There was that Down syndrome fact # 6; a wide space between the big toe and the rest. I admit in shame, I tried to keep shoes on him all the time to hide those peculiar feet. I took him everywhere, which meant I had to carry him everywhere. To this day my posture lists to the left!

When I could carry him no more, I’d gratefully put him into stroller or a grocery cart and try to do errands and shop. He’d hoot and howl and make the sign for “Down”. If I was getting groceries, he would systematically throw out groceries in the cart within his reach. Oh, yes, I gave in and just sat him on the floor. Sometimes I was so desperate for time, I would just tell the checker Mark was on the floor and not to let him scoot out the door! And I kept shopping not knowing if one of my errands that day would be a trip to jail for child endangerment or abandonment. Mark had no qualms; he’d hit the ground jib-skidding and hooting with great joy. His enthusiasm was contagious. People that had seen Mark grow painfully slow actively cheered him on. Imagine being in a large super market, and people are encouraging your toddler to “Go! Go fast Markie!

And he’d disappear around the aisles, jib skidding under people’s feet, chasing shopping carts of people who called out to him. This was a no fear activity for Mark. Every person he saw showed him a positive reaction. The skid made it hard to keep up with Mark, but I could pinpoint his general direction by his exhilarated hooting. Initially, I panicked for all the right reasons as he left my protective sight. I learned to use those giant super market mirrors placed near the ceilings to keep an eye on him. (Ah! That’s what they’re for!).These were the first months I knew I needed my community’s help in raising Mark. They would come to know him as a favorite son, and I would forever be known as the mother of Chimp Boy.

A Mother's Diary: Part 5, The Sibling

Haven't read Part 4? Click here-

The Sibling

Ryan was three years old when Mark was born. Needless to say, no matter how hard we tried, Ryan became lost in the initial craziness. There was no mystery about it. Ryan let us know in no uncertain terms that this brother was a disappointment. He couldn’t play ball, go fishing, or shoot arrows. He was too small to do anything fun. He never wanted to get out of his cradle. For heaven’s sakes, he was in the living room in that cradle all the time! Mom, he said, “We have to teach Mark to be a brother okay?” He won’t get well unless we go out and play. Won’t get well? Ryan thought Mark was sick? I had figured on a few more years before having to explain to Ryan that Mark would be different from his friends’ little brothers. For now, it was a blessing to lay that little white lie at Ryan’s feet. “Yes, I lied,” Mark needs more time to get well…

In response to Ryan’s observations we began to take Mark on more excursions. We went outside more as the summer came on, took him grocery shopping, to the movies, etc. What we learned from Ryan was that we began to explain that Mark was not a sick child, just different. And POW was that clear when anyone saw him with us.

At a year old, Mark weighed 18 pounds and was not mobile. He lived on my right hip. Human beings have genetic radar that instantly recognizes when another human is genetically different. It magnetically drew people to us in pubic places. We received them graciously and satisfied their curiosity with more little white lies. I lied about Mark’s age for the first four years of his life. A child of three should be running around in public and mine was always on my hip. I could control the response from strangers from a disappointed “Oh, he’s three and not walking yet?” which would depress me for the rest of the day. Or, since he was so little anyway, I chose to say he was a third his age, which would elicit the comment:” He’s so big for his age!” and that would assure me of a more positive thought to carry home. Then I could cry there instead of the minute I got back into my car. Wherever I cried, Ryan would cuddle me and say, “Mom, Markie will grow up big like me pretty soon.” I would feel like the luckiest mom in the world and go hide in the bathroom to cry some more. I would lean into the mirror over the bathroom sink and pray to Annie Sullivan to help me do right by Markie. Then, I would make the sign of the cross and renew the “Oath” to myself.

My mom used to make the sign of the cross when she made a pie, and they always turned out fabulous. I needed more strength than just optimism at this point and that time honored ritual became a starting point where hope and denial evolved into a simple daily prayer that Markie Sparkie would grow up big like Ryan and create his own holy sparks for the divine fire of his own life.