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.

Friday, May 21, 2010

DownStream Fly Fishing...tomorrow!

Tomorrow kicks off the 4th annual fly fishing event for people with Down Syndrome. The scene is set for well over 100 people to enjoy a great day of fly fishing on a private ranch.

Stay tuned for a full photo journal and report!

Friday, May 14, 2010

Newest Team Members: Sacramento Coca-Cola and Umpqua Bank

I am very pleased to announce our newest sponsors for our 2010 event. Both Umpqua Bank and Sacramento Coca-Cola Bottling Co., Inc will play vital rolls in the success of DownStream.

Working with both companies has already added value to our program by enriching the quality and level of service we can provide.

Tuesday, May 11, 2010

DownStream Fly Fishing Day

We are now inside of two weeks before we kick off DownStream Fly Fishing 2010. We are at full capacity with 25 excited students and 78 passionate volunteers. We have a few new sponsors to add to the list and can't wait to show them our event.

DownStream means business, we make success attainable.

I had a chance to visit Mark and Kristen Brown who own Willow Creek Event Center and was blown away by improvements done in that last year. They have created a Hawaiian sanctuary where no sane person would ever want to leave. Mark and Kristen are wonderful people who have extended themselves to no end to make this event incredible. The property they have, coupled with their commitment to excellence has created a jaw-dropping background for any event. They are working hard to make a unique venue for weddings retreats and much more.

This is where our students will be hooking Rainbow Trout!

I was able to bring out one of DownStream's key supporters, Steve Pereira with Certified Systems in Chico, to help me find some fish. We were joined by his charismatic father-in-law, Harry. The trout were not too cooperative, however the bluegill and bass were anxious and willing to show off their ability to crush flies. For the event, to make sure everyone hooks a trout or two Mark has arranged for the pond to be stocked with perky rainbows.

Bluegill are plentiful and eager to inhale flies like this guy!

We feel blessed to have such passionate people helping us put this event together. It is all about the people- I am going to get you, I just need to find you!

So far so good, we have a new cooking team this year that has success written all over it. They mentioned something about tri-tip sandwiches... we'll see about that!

The bass is clearly aspiring to be like the fish on the shirt.

As part of our commitment to education we teach conservation and catch and release.

With final preparations underway we are ready and willing to do what it takes to make this day unforgettable. If you are reading this and want to get involved, contact us. We are ready to start preparing for next year.

Thank you,
Email: rhmiller@gmail.com

A Mother's Diary: Part 4, The Announcement, Infant Stimulation and Sign Language

The Announcement

To bolster our perception of Mark as a special needs child, we had nicknamed him Sparkie. It was clearly a misnomer until the day Mark made himself a waking presence in our home. I heard him let out a complaintive cry from the other end of the house. It was alarming in its strength, I ran all out to see if he was hurt only to truly meet my son for the first time. He was looking directly up at me with eyes I had only seen a few times since he was born five weeks earlier. There was expectation in his face. His tiny fists were waving crazily in the air, and, his feet were bicycling. He was gurgling and making noises! I picked him up for a joyous cuddle and he smiled at me for the first time for the first time in five weeks.

Infant Stimulation

Now that we had Mark’s official approval of this being born and growing up plan, we began his Infant Stimulation program in earnest. Twice a week lovely, talented Sisters of the Oath- type therapists came to our home to teach me how to help Mark grow up. Mark was an official client of our local Alta Regional Support Services, our local school district special education services, and the California Hawaii Elks special needs therapists: all free services to families with children of special needs.

Those days were a blessing in a new world that was still a murky bewilderment. We would exercise and massage his weak muscles, rub his skin with different textured cloth, engage him to hold his eye contact, and enticed him to mirror expressions on our faces. At four months he began to coo and giggle a little bit. Now his smiles came spontaneously though and they were all we needed to keep us marching into the next day, He took his time deciding to join us, He was giving us the tutorial for raising him on his own terms, and in that, Mark was very clear. It was his life, and he would realize it on own time. It would take him three months to roll over, four months to truly recognize Steve and me, eight months to sit with support. His first spoken word was nih nih (night night) at eighteen months.

At two, Mark had a vocabulary repertoire of most of his peers, but he was using sign language instead of spoken words. He had a number of emerging verbal words, but relied on signing, as we did. This came easy to him and he used it diligently. Although Mark had been naming us with the signs for mama and daddy, we didn’t hear the words until he was a year old. His next real word was wah wah (water) at two years old; and, yes, I did sort of a secular all day novena to Annie Sullivan! Wah Wah. It held such joyous portent for his transition from a nonverbal to a verbal child. He knows! He knows!

**But waiting for Mark to grow was a challenge of faith. Some days were full of hopeless sobs and disappointment. On others, we went about daily business as if he wasn’t even sleeping in the living room. Developmental Delays began to take on meaning. We massaged him, took him out with us, kept stimulation up even if he didn’t respond.

Eventually, we moved him into his own room. We had a child at two, who was not crawling or talking, but signing over 100 words, was barely crawling, had very few teeth, was too small to even balance on a potty chair. The Infant Stimulation therapists were working his muscles to improve tone and strength, adding new signs constantly, working on fine motor skills so he could use a spoon and fork. Basically, anything most kids learn as a matter of fact, kept Mark dependent on this intensive prep time mentally and physically to just continue developing at our expected pace. The fact is, Mark would continue growing at his own pace, even if we left him alone. But “studies” showed marked improvement in developmental gains with early intervention. What parent would say no to that? Every move we made with Mark was in lesson or practice mode. Every task was brainstormed until we found the best way to teach him tasks or elicit social skills. If Mark’s maker had intended for him to be an example of a slow learner, we were exacting a monstrous heresy. Two days a week, we engaged marvelous Sisters of the Oath to come and work Mark’s body and brain. In the evenings and weekends we followed through with our homework assignments. Was over stimulation possible? We worried. Mark wouldn’t nap on his own. He would be exhausted and still refuse to sleep. Either Steve or me had to lay down with him, read or tell him stories before Sparkie would finally relax and sleep. We balked at this indulgence at first, but later we agreed to take turns because the naps were so priceless to our own sanity... The next part get's interesting... stay tuned

The next few entries are going to really get into the meat of our experiences and to be honest get a little tough to chew on. Be ready...