I Know What You Mean #16

"Mom, please don't give me any more of those hairy peas.  I just don't like them," shared Natalie.
Hmmm...I think she meant edamame.

Almost Famous

This morning started out the same.  Noah, always the first one up, bounds out of his room to greet me the moment he hears my footsteps in the kitchen.  To say he's "bright eyed and bushy tailed" in the morning is an understatement.  And, with quarters as close as ours, I have to work fast to redirect his energy.  I remind him again to get dressed and to use his whisper voice so as not to wake sleeping beauty (a.k.a. Natalie) whose bed is only a few steps from the kitchen.  It's 6:30 and he's been up for more than an hour and ready to have a deep conversation with me about my favorite Star Wars character.

"It's still Han Solo, Noah."

I dash around the kitchen, I'm in a race to prepare Noah's standard...an omelet with "square cheese", two slices of bacon (thank goodness for micros), two slices of toast with a sprinkling of chocolate chips, and a bowl of Cheerios with milk and bananas.

We've decided he must have hollow legs or worms because Noah's a kid who has to run around in the shower to get wet.  Yet, I'm happy to prepare him this hearty meal as there was a time not so long ago when all he wanted to eat was Ranch dressing.

Once he's fed, I can give him the meds his body needs so that he isn't bouncing off the walls or inviting conflict at home or school.

As I put Noah's plate in front of him, my T-shirt catches his eye and he begins reading the words inprinted on it.

"Action for Autism Family Fun Walk?...Mom, what does Autism mean?" asked Noah.

His question caught me offguard and in that second it set off an internal war in my head.  Why hadn't I prepared myself for this question?

I put down my spatula and sat down next to him. I began, "Autism is a neurological disorder..."

"Huh?"
"It's just a term used to describe how some people's brains process information differently."
"And I have it?" he inquired excitedly. His voice going up an octave.
"Yes," I replied.
"Yay! So, I'm like famous?" he cheered.
"I think you are on your way, buddy."

Musings From Natalie #49

While Natalie enjoyed her ice cream sundae she philosophied, "I love whooped cream because you don't even have to chew it...it's like water."

(Hmmm...I wonder how much happier the world would be if 70% of it were made up of cream)

Musings From Natalie #48

Natalie: "Mom, how can God see everyone in the world at the same time?  Does he have like 1,000 eyes?
Me: "I don't know that he has 1,000 eyes.  I think he is just all knowing because he is God."
Natalie: "Wow! Can I get his autograph?"

I Believe I Can Fly

I am not a quitter by any stretch of the imagination.  Once I begin a project -- I see it through to the end.  No matter how much blood, sweat and tears are required.  My biggest roadblock is often in the starting.  As a parent, raising a child with special needs, I'm conditioned to come up with creative ways to help my child learn and do all the things I see his peers doing.  But sometimes, the road stretched before me seems all uphill.

It's those times that I'm reminded of the words from American Poet, Ralph Waldo Emerson:

"We are limited, not by our abilities, but by our vision."

And, it's also about this time I must remind my hard-headed self that I'm not supposed to be doing this alone.

A couple of months ago Noah's occupational therapist asked me why Noah wasn't riding a bike.  Her question caught me off guard and I responded with something like, "Are you crazy?"

Seriously, we're talking about a kid who regularly stubs his toe or bumps his head walking from his bedroom to the kitchen.  The idea of teaching him to ride a bike on two wheels seemed like a prescription for an ER visit.  But, then she told me about a program called "I Can Shine" (formally known as Lose the Training Wheels).  I was hesitant, but decided to investigate the program.  When I went online I learned that together the Down Syndrome Association of Greater St. Louis (DSAGSL) and the Lydia Faith Cox Foundation would be hosting the five day bike camp in my area.  I spoke with Erin Suelmann, DSAGSL's Program Director, who shared some encouraging stats...the "I Can Shine" program boasts an 80% success rate.

I liked those odds.

The program costs $150 but because of the generosity of both the DSAGSL and the Lydia Faith Cox  Foundation, included a brand new bike and custom-fitted helmet for each camper.

On the first day Noah was a little apprehensive.  "Why are we doing this?" he asked.

"Because it's going to be great!  YOU are going to learn to ride a bike!"

Noah was really worried about falling.  I assured him that he would have two spotters, one on either side of him, who would be making sure he was safe. Camp was held at South Technical High School in Sunset Hills.  After we signed in and he received his official "I Can Shine" t-shirt, we headed over to the bike helmet-fitting area.  Two representatives from Children's Hospital were on hand to make sure each camper had a perfectly fit helmet.  While Noah waited in line, he was introduced to Steph and Heather, the two volunteers who would be spotting and cheering Noah on all week.  Immediately, Steph began breaking the ice by finding ways to interject Star Wars into their conversations.  I'd forgotten that earlier, when I'd initially signed Noah up for camp, that I had provided them with a list of Noah's likes.

I breathed a sigh.

We were off to a good start.  After Noah received his helmet, the three of them headed to the gym and the team put Noah on one of their special "roller bikes".  Each roller bike has been handcrafted and designed by retired, mechanical engineering professor and program founder, Richard Klein.  That first day, I watched Noah's confidence grow with each lap he made around the gym -- all the while his two spotters were running alongside him -- laughing and eager to listen to Noah share his vast knowledge of Star Wars trivia during the 75 minute session.

Day 1 was centered on developing trust and growing confidence

That evening at dinner, when it was Noah's turn to say what he was thankful for, he shared, "I'm thankful for bike camp."

I pushed down the lump that had suddenly taken over all the space in my throat and squeaked, "me too."

The next day, Noah was excited about going to camp and eagerly jumped on a bike.  By day three, he was up on two wheels!  Between running (literally) his spotters ragged as he pedaled with more confidence and speed!...Noah really enjoyed leaving his mark as he squeezed his brakes hard to make tire tracks at the end of the straightway.

"How long was that one?" he inquired.

Boys...everything is a competition.

Day four was devoted to turning.  He fell once and I held my breath but kept my feet planted to the spot as the volunteers were quick to get Noah back up on his bike to try...try again.

Steph and Zack had to work hard to keep up with my little speed demon.

As I watched Noah ride and Steve snap enough pictures for us to create a stop action movie...I spent a little time talking to Suzie Risher, founder of the Lydia Faith Cox Foundation, named after her daughter who died three years ago.

I marveled at this woman.  She could have easily (and I wouldn't blame her a bit!) curled up and let her grief swallow her up.  I cannot imagine a grief larger than when a parent loses a child.  But, she didn't.   And, because of her vision to see beyond today and even tomorrow --she has given myself and many other parents the opportunity to watch our children soar.

I believe Lydia's spirit was with us at camp, giving each one of our children invisible wings...now it's up to us not to clip them with thoughts of doubt.

Today, after another successful ride with his Dad, Noah came in to tell me that he rode down our hill for the first time..."and I went FAST!"  He told me he kept thinking, "I believe I can fly."

Suzie is hoping to grow her camp so as to offer, twice as many children the opportunity to learn to ride a bike.  More money and more volunteers are needed.  She is always looking for bike spotters.  Children as young as 12 can work as spotters when riders are starting out on the roller bikes. However, spotters must be at least 16 to work with riders who have moved outside the gym training area and are up on two wheels.  To find out about ways you can help support this charity, please visit the Lydia Faith Cox Family Foundation website.

Visit the I Can Shine website to learn more about programs happening in your area or to host a program yourself.

Musings From Natalie #47

Convo with Natalie after camp:Natalie: "Patrick says he doesn't want to sit by any girls...only boys. He thinks we should have separate tables. That Patrick is a cracker!" 
Me: "A cracker? What does that mean?" 
Natalie: "He just cracks me up!"


After Natalie finished her dinner she announced, "Now I'm ready for the main course!"
Me: What do you mean?
Natalie: Ice cream!

Wingin' It

Anyone who knows me, will tell you -- I'm a planner...and not just a few days in advance.  I like to  plan weeks, sometimes months ahead.  Whether it's setting money aside before our 11 year old dryer decides to take a permanent...press vacation, securing a sitter six weeks before an event or mapping out our summer activities in March - it's clear, I like to have things settled and decided.  I'm not sure where I inherited my planning genes, certainly not from my parents. They have always been big proponents of "winging it".  For as long as I can remember, my Dad worked seven days a week.  But, every summer, my parents would set aside two weeks to take my brother and sister and I on a family vacation. It was the 80's and a time when seatbelts were optional yet it was always expected that we begin our trips at 3 a.m.  My mom would lay the back seat of our powder blue stationwagon down flat and make a bed for us in hopes that we'd sleep for the first five hours of the drive. When I would ask what they had planned for our trip, I often heard, "We're just going to play it by ear." Their plans were often little more than a final destination.

Argh.  Who are these people? I must have been adopted.

I vividly recall the first time I tried to help my planning-challenged parents.  I was about eight or nine years old and saw a commercial on visiting Florida. The cheery announcer even had a phone number for viewers to call to receive a free packet of travel information.  I called up the number and ordered the materials, but when they arrived and I excitedly explained how easy it would be for them to make reservations...they just laughed. "Why would we want to do that?" 

It was then and there that I knew...I was definitely adopted.

Even so, we always had a good time --whether it was seeing Dorothy's ruby slippers at the Smithsonian, making hand-dipped candles in historic Williamsburg, sand surfing along Lake Michigan or riding bikes around Macinac Island. I hate to admit it, but my parent's unplanned vacations are among my fondest childhood memories.

But, that doesn't mean I've been able to easily rid myself of my planning ways.

However, this weekend somehow snuck up on me, and I found myself in a rare position...Steve did not have to work, the kids didn't have any extracurricular plans or birthdays to attend, it was Saturday and I hadn't planned a thing for us to do!  At 1 p.m. I'd decided that eventhough the weather looked crummy, we were not going to waste a precious day with all of us together in one room, but all hooked into different electronic devices.  I rifled my brain to come up with a quick solution -- something outdoors, educational and free.  

By 1:30 p.m. Steve and I had loaded the kids into the car and were headed west on highway 44 to World Bird Sanctuary.  Though we hadn't visited in more than five years, I felt sure there would be something of interest for the kids.  I knew it would be educational and as always - admission and parking are free. As it turned out, we arrived on "National Trails Day" and just minutes before the start of their Saturday Animal Encounters show. We headed to the amphitheater and spent 30 minutes being both entertained and educated by two of the Sanctuary's naturalists, Christina and Trina, on many birds of prey.

World Bird Sanctuary was founded in 1977 by Ornithologist, Walter C. Crawford, Jr. Today, the  property located on 305 acres of Missouri hardwood forest is managed by 25 full time staffers. Each year more than 300 birds are treated in their state-of-the art Wildlife Hospital.  Their rehabilitation program is run by volunteer veterinarians and experienced staff and interns.  The goal is to release as many raptors as possible back into the wild. In addition, they've treated more than 900 parrots as part of their parrot rehabilitation and placement program. Cost to care for one injured bird is about $1,000.
Propagation is another important aspect of the Sanctuary. To date they've released more than 900 barn owls into the wild in Illinois and Missouri. And, because of their efforts, the barn owl was removed from Missouri's endangered species in October 2008. They have also cooperatively reintroduced Andean Condors, bald eagles, golden eagles and Harris hawks.

The mission of World Bird Sanctuary is to preserve the earth's biological diversity and to secure the future for threatened bird species in their natural environments through education, propagation, field studies and rehabilitation.

World Bird Sanctuary is open every day from 8 a.m. to 5 p.m. except Thanksgiving and Christmas. They offer free seasonal shows, nature trails, educational programs for schools and scouting troops and picnic pavilions.  Come see their live displays of bald eagles, owls, hawks, falcons, vultures, parrots, reptiles and much more.

Click here to check out their events calendar.

Click here to learn how you can help support the World Bird Sanctuary -- everything from participating in their "adopt-a-bird" program, purchasing an item from their wish list to using goodsearch as your search engine...every little bit helps.

And, as I've come to learn...sometimes wingin' it is not only fun, but educational, too!

Patiently waiting for the show to begin.

Goblin, 10 year old barn owl was hatched at the Sanctuary. In the wild, their average life span is less than 2 years.

Mischief happily earned his keep by accepting donations from everyone.

Natalie decided to help out the Sanctuary by purchasing a stuffed owl from their gift shop.

Noah loved the hat he received as part of their National Trail Days promotion.

The kids stand in a replica of an eagles nest.  The biggest one recorded was 9 1/2  feet in diameter and 20 feet high 

The Sanctuary is located next to Lone Elk Park.  We drove through and found the place lived up to it's name.