Friday, May 30, 2008

Last day of school

Well, last day of preschool. I have been taking Caden twice a week to a 2 1/2 hour class for 2 year olds. It is a new program at a local church and they had never had a child with special needs other than a peanut allergy. But they welcomed Caden with open arms, no hesitation and it was one of the best decisions I have made for him. He started there barely eating solid foods, not walking, and having little experience being around other kids since he is an only child. Yesterday his class went to a park for a picnic to enjoy their last day together. I watched a much different boy running all over the playground, chowing on a plateful of fruit and pretzels at snacktime and having to decide whether he wanted to sit with his best friend Sammy or girlfriend Katie (THAT age-old dilemma already?).
Sammy won.

Sad to say goodbye to teacher Miss Gloria.

At one point as I talked to Katie's mom, Caden walked up a little flight of stairs to some slides. The first time he has ever walked up stairs unassisted and he didn't miss a beat. As I stopped breathing and begged myself not to scream in front of everyone, my little man turned around and WALKED BACK DOWN! As if he's been doing it all his life. Finally I remembered that I did in fact have feet to move my body towards my son. I tried to scoop him up into safety but Caden had already turned around to go back up the steps with barely a glance over his shoulder at me. Someone behind me said "He's growing up, mom." Indeed he is.

Thursday, May 29, 2008

Why I love So You Think You Can Dance

An inspiring 25 year old Salt Lake City man named Brett Banford tried out for the Fox tv show So You Think You Can Dance along with a few thousand other hopefuls. Brett has Down syndrome and didn't make the cut to the next round, but neither of those facts mattered as Brett summed it up "It's not about winning or losing. It's about being happy." Watch his audition here.

Don't you love his face when Nigels comments that there are girls in the audience that would want to dance with him and Brett shrugs like "Well, of course!" And how bout that standing o at the end? Tears were rolling in this house!

And his interview on his local news station can be seen here.

I love that they gave him a shot to audition but even more that they included his audition in the final tv cut. I realize that Fox did it for the ratings but it worked! So You Think You Can Dance rocks!

Wednesday, May 28, 2008

A no-brainer shout-out

I love this article by Caitrin Nicol in The New Atlantis called "At Home With Down Syndrome". So worth the read and man, does she do a great job of hitting some monster points. Gifts is referenced and many of the stories are quoted. If this journalist does not have a family member with Down syndrome, then this has to be the best example I've ever seen of the media "getting it". About time!

Tuesday, May 27, 2008

Trendsetting in Philadelphia

This was a short blurb from the Philadelphia Business Journal. But it broadcasts volumes:

The Children's Hospital of Philadelphia is getting ready to open what it says will be the first comprehensive medical unit in the world for pregnant women carrying a baby with a known birth defect.
The $20 million Garbose Family Special Delivery Unit is being established so CHOP's fetal medicine and surgical specialists can provide care -- from prenatal diagnosis to surgery or other medical intervention to postnatal follow-up care -- all in one location.
The unit will open in stages over the next three weeks with deliveries expected to begin on or after June 9.
"Nobody else has this kind of dedicated space for the delivery of babies with birth defects," said Dr. Lori Howell, executive director of Center for Fetal Diagnosis and Treatment at CHOP.


Can you imagine such a facility built for the purpose of caring for children like Caden?PRENATAL and postnatal care. Prenatal, people. That leads me to believe that CHOP values these lives and wouldn't automatically recommend termination if they're investing so heavily into this medical unit. Big time kudos to CHOP. I hope this is the start of a new trend everywhere. I really hope.

Thursday, May 22, 2008

Arrival of the big boy bed

This toddler bed was handed down from a friend of mine in PA to one of my sisters in VA for her daughter. Then that sister passed it on to yet another sister in VA for her daughter. And now it has arrived in Caden's bedroom, returning to PA. He is getting used to it but hasn't actually slept in it yet. Right now it is the resting place of his teddy bears. He looks like such a big boy in this picture - where has my baby gone?

Wednesday, May 21, 2008

Crying over cross country

This video about a high school senior with cerebral palsy competing on the cross country team WILL make you cry. Don't say I didn't warn you. Watch it here.....

Friday, May 16, 2008

The hunter becomes the hunted

Speaking of our day at the races (see the previous post), I had the rare but exciting opportunity of being stalked there. Usually when I see a person with Down syndrome, I can't help but be mesmerized. I catch myself staring but am unable to stop. If it's a younger person, I watch his developmental abilities, look for similarities with Caden. If it's an older person, I imagine him as Future Caden and examine all his behaviors and especially interactions if he's with family or friends. Caden isn't 3 yet so much of this child-rearing still feels new to me. With Down syndrome occuring once in every 800 births or so, whenever these encounters present themselves which certainly isn't every day or even every week, I want to study as much as possible. Until I'm noticed hiding behind the magazine rack and realize I've morphed into a stalker.



While watching the races, I noticed some stares, pressing eyes, people moving around to keep us in their line of sight. The Tank even whispered to me, "Those people behind us are overly interested in Caden." It did cross my mind that this is what I must look like when I spot someone with Down out and about. Maybe they also had someone in their family with Trisomy 21. Before long, a woman approached and was bubbling over with her connection to Caden: "I have a brother with Down syndrome and he is such a joy...." Ah ha! We were in fact being stalked. There's got to be an easier way to share that you're in "the family". We need to come up with a special handshake or tattoo or even a secret catchphrase so we can recognize each other. Then I could just say "The eagle has landed" instead of trying to pretend that I needed all the same groceries as the family of the cute girl with DS I recently spotted at the supermarket.

A day at the races

The Tank and I recently took Caden to see steeplechase racing. He loved seeing the horses but more than that, he loved all the spectators. He waved to all the tailgaters and even played ball with a few older boys. They were great helping him catch and then throw the ball back.


At one point after more boys had joined in, they decided to play an organized game of something but couldn't decide which game. One of them said, "Let's ask Caden!" and they all gathered round to see which game he would choose for them (football). My heart soared into the sky to see them including my son. I don't know if I was more happy to think that they didn't even notice he had Down syndrome, or that they did know but didn't care. Either way, it was a great day at the races.

Thursday, May 15, 2008

Wednesday, May 14, 2008

Coming soon to a theater near you

I have not been to the movies since before Caden was born. In fact, I don't even remember the last movie I saw in a theater. But after reading this announcement, it looks like The Tank and I will be having a movie date in the fall:

NDSS is excited to announce a new partnership with Regal Cinemas.

In 6,900 screens across America, several well-known public figures will speak about acceptance and inclusion for people with Down syndrome, highlighting our National Buddy Walk program and October as Down Syndrome Awareness Month.

The 30-second film will run from September 26-October 9, 2008 in all Regal Cinemas across the country.

Confirmed to speak in the film:

Meredith Vieira, Co-Host of NBC's The Today Show
Liam Neeson, Actor
John C. McGinley, Actor and NDSS Buddy Walk Ambassador
Albert Pujols of the St. Louis Cardinals
Chris Burke, as well as other self-advocates

For a listing of Regal Cinema locations, please click here.

Stay tuned for more information.

Warmly,

Sarah Schleider
Vice President of Marketing and Communications
National Down Syndrome Society- NDSS
666 Broadway, 8th Floor
New York, NY 10012
212-763-4369

Tuesday, May 13, 2008

A carnation for Mommy

On Thursday when I went to pick up Caden from his preschool, he was holding one long-stemmed pink carnation and a card he made me for Mother's Day. I've never much been a fan of carnations as I prefer the more fragrant flowers but that sight brought me to my knees. He was so proud of his card and when he handed me the flower, I started bawling. I don't know why the other women weren't crying too as they busily bundled their children up in their spring jackets. Maybe because they've already heard their children say "I love you Mommy" or they've been through this with their older children. But this was new for me so I was the sole emotional wreck in the room. Maybe I'll be expecting it next year and it won't hit me so hard. But somehow, I think Caden's always gonna find a way to bring me to my knees.

Friday, May 9, 2008

Friends in High Places

I wish I lived in Washington because Cathy McMorris Rodgers would certainly have my vote. I think she will really make a difference for our children. Her son is only one year old and she's already gotten the Congressional Down Syndrome Caucus off the ground. You can find out more about it at her website here or watch her speak about it here . I love how her son tries to get her attention at the end of the video. I can only imagine trying to tape a segment like that with Caden on my lap....if he would stay seated on my lap.....if he wouldn't knock the camera down.....if he wasn't a roaring-to-go toddler with more fun things to do on his agenda. Actually I would probably just have to hold up a picture of Caden.

Monday, May 5, 2008

Caden gets Bloomed

Caden spent a long weekend in Winchester, Virginia enjoying the Shenandoah Apple Blossom Festival. Despite being totally off schedule with his naps and meals, he thoroughly enjoyed himself. There are nonstop activities, parades, celebrities, dances and vendors, a midway, a carnival, a circus, an arts and crafts fair, a car show, etc. The Tank even participated in a 10K race. The town increases in size tenfold and really decks itself out for the occasion. The festival colors are pink and green and this year's theme was "Get Bloomed". On Friday night there is a 3 hour Firemen's Parade and on Saturday there is a 4 hour Grand Feature Parade. Last year, all the noise from the firetrucks and bands during the parades scared Caden so I wasn't sure what to expect this time. But this was Caden's year. He waved to everyone in both parades, danced to the bands as they passed by and truly had more fun than anyone around even though he was running on fumes from skipping naps.



I have attended 38 Apple Blossom Festivals. I have seen celebrities such as Wayne Newton, Dan Akroyd and Mary Tyler Moore being cheered throughout the parade as well as sports greats like Willie Mays, Jackie Joyner-Kersee, and many of my beloved Washington Redskins. The standout celebrity of all time for me was in this year's Festival. This year, I saw a hometown hero named Sterling Grooms ride in both parades and receive as much applause as Jerry Rice and Nadia Comaneci who also attended as sports celebrities. Sterling is a powerlifter and won FOUR medals (3 gold) at the 2007 World Special Olympics in Beijing. Shortly after he returned home, I happened to be in Winchester and visited the grocery store where he works as a cashier. His coworkers have filled the bulletin board over his shoulder with newspaper clippings about him:

Like Caden, he has Down syndrome but that did not take away from the celebration of his achievements. Wincester was genuinely proud of Sterling and I was genuinely proud of Winchester for it. They toasted him like any medalist from any Olympics should be toasted. I started crying as soon as I saw Sterling's vehicle in both parades approaching us and cried long afterwards. Accompanying Sterling the entire weekend was his coach, Tommy Kremer. Tommy volunteered his time and expertise to get Sterling prepared for the competition for over a year. Due to the expense of international travel, not all of Sterling's family or his coach was able to travel to China with him. After winning the gold medal in the Overall Powerlifting competition, Tommy was the first person Sterling called - even before his father. Though it was the middle of the night in the US, Tommy screamed with excitement at the news, waking his entire house.


During the second parade, the Grand Feature Parade, I scooped up Caden and ran into the street to hug both Sterling and Tommy for being such inspirations. Sterling has really raised the bar high for Caden's generation.

I tell ya, if central Pennsylvania doesn't celebrate Caden's accomplishments like this, I'm moving back to Virginia! Wouldn't that be awesome to see Caden ride in the Apple Blossom Parade one day? Just like Dorothy Hamill, Chevy Chase, Katie Couric, and Sterling Grooms.