Summer Fun

Here's Lucas with Daddy on Father's Day -- we went to the Miami Shores "Shipwreck Cove" water park. Then, he's pictured with titi on his first skateboarding experience in Coconut Grove....

You Gotta Have Friends

These are Lucas' preschool classmates at the University of Miami's Debbie School. The class includes about half kids with disabilities and the others are typically developing. It's a wonderful program and Lucas really enjoys himself, and nearly as important as learning and thriving, he's making his first friends.

Below he's pictured with most of the kids in the "Tigers" class; and then individually with his crush, Cecilia (Cece) and with Luca -- we're so sad because Luca and his family are moving back home to Pennsylvania. Lucas went on his first playdate a few months ago, and it was with Luca.

Remember the Time

"Remember the Time" is one of my all-time favorite, breezy Michael Jackson ultra pop songs. Who would have ever guessed it would frame this moment in time for me...I still remember exactly where I was when I learned the news of Elvis' death...I assume MJ's passing will lodge itself in my memory too. Truth is, you can't escape this news -- it's everywhere you turn. The event seems completely surreal, especially coming on the heals of Farrah Fawcett's death -- someone who showed so much bravado in the end and who had her own extraordinary fan base.

Personally, what's most poignant is that the first person I thought about when I heard about Jackson was my mom...she was a huge fan of both Elvis and Michael -- we were watching TV together the night we learned about Elvis, and cried as we mourned the King. I miss not being able to share with her all the good, the bad, and the sad.

The last few weeks have been filled with so much -- too much -- death. But, ironically, death always reminds us to live. Like many iconic figures before him, Michael Jackson will never be forgotten and his music will play on. May he find the peace in death he never seemed to have in life.

We will remember...

Happy Father's Day, Daddy!

Lucas and his father have a love that is priceless. Since the very beginning, Tom has been a protector and a champion of his little boy. In turn, Lucas looks at Tom as if though he hung the moon. Adoration is a word I use repeatedly to describe their love for one another. Daddy was one of Lucas' first signs, and perhaps with the exception of "puppy" it's his favorite word. When daddy's not around, every time my phone rings or he hears the car door, he beams and signs and says "Daddy"! People sometimes ask me if I'm jealous of their connection, and truthfully, I'm so not...I love that they have such a special bond, and feel lucky to have such a wonderful and dedicated husband and father for my son.

If Lucas could express himself, here are some of the things I think he'd say about Daddy:

Thank you Daddy for cooking your yummy food for me...
morning, noon, and night,
for sitting with me to watch Signing Time over and over again,
for coming home early from work just to wrestle with me,
for making bath time so much fun with bubbles,
for taking me to see Mari for therapy every Monday and pointing out the cows in the pasture,
for introducing me to "Where the Wild Things Are" and "The Little Engine that Could"
for pushing my swing endlessly whenever my heart desires,
for showing me the thrill of big kid slides, jumping from the edge of the pool, and tickle games!

Thanks for learning so many signs so I can practice and learn them too,
and for showing me how to make cool animal sounds (Mommy's not very good at it, you know).

I love snuggling up to you when you put me down to sleep, and love it even more when I wake up sandwiched between you and Mommy.
Thanks for being so silly and making me laugh all the time,
Thanks for believing in me and for doing all you do to make my future look bright as can be!

Mostly, thanks for being the best Daddy in the whole wide world!

Happy Father's Day to all the wonderful dads in our lives :)

Aloha!

This week at the Debbie School, Lucas and the kids were introduced to many things Hawaiian...the word "Aloha", Hawaiian music, a volcano which they saw erupt, and they even made their own hula skirts and hair/wrist flowers. I caught the bean in action as they were parading around the school...

Lucas at 32 Months

Wow, I get the feeling these updates are going to be harder than I thought; moreso, because I can feel the time slipping away and my toddler growing into a little boy. So here are a few new things in the Bean's World at 32 months:

Lucas is making more sounds, and because I have an awful ear, I can't tell you what they are. His articulation is also improving greatly so he's starting to say the whole word in many cases, and not just the beginning or the end. The other thing is that he is repeating more and more what he hears (it's time to wash out my sometimes potty mouth!). He continues to use "I" and signing "want" although he's starting to sometimes say "want" and then either speaking or signing the object of his affection...which usually involves either food or playing. He is loving both asking for "row, row, row" your boat and "rowing" along to the song. Lucas is adding to his repetoire of animal sounds and now makes horse naying and elephant trumpeting sounds.

This also has been a big month for gross motor skills. Lucas is climbing stairs on his own, while holding the rail for support. He's more tentative on the descend and still working on his balance. He went up and down Jenni's stairs in Nashville (all 20 steps) twice. This past week, we went to physical therapy and actually jumped on the trampoline -- his little feet came about an inch off the ground...that counts! As a result, he's ready for a mini-trampoline at home. He's now kicking any size ball and saying "kick" at the same time he swings his leg. He's throwing a small ball with one hand; and we're working on catching a big ball.

The potty training is coming along slowly...although we haven't been very dedicated. Lucas has had several successful movements, mostly while enjoying his new book "Potty Time with Elmo" (*with sound*). I've been reading up on the 3-day potty training method which I've heard good things about, and plan to devote ourselves to trying it in the next few weeks -- it seems like a real commitment of time and energy (not to mention requiring a heavy dose of patience).

BUT...the most exciting thing Lucas is doing now is...starting to sight read! I bought this "game" called "Simple Words" which are about 20 two-piece puzzles with a picture on one half and the word on the other. Lucas quickly picked up these "high interest" words he can sign and say: cow, sheep, bee, pig, boat, book, tree, and car. Here's a little demo:

Music City

We enjoyed a lovely time in Music City AKA Nashville visiting my best friend, Jenni, and her family (although we missed dear Emma who is off at summer camp). We were in town to celebrate Terri's 65th birthday (Jenni's mom) with a surprise dinner party sneakily planned by her husband, Rick. We were treated to a culinary journey by one of the area's favorite chefs, Clay Greenberg. Good food, good company...you can't beat it!

We were also hosted by Lauren and her family (thank you!) for a casual get together with a few families from the local Down syndrome group...no wonder Nashville is consistently named one of the friendliest cities in America! Lucas is now smiling ear-to-ear as he yells "cheese" when a camera is pointed in his direction...can you tell? And yes, he's attempting to eat sushi with chopsticks!

My Great Story -- New Awareness Campaign

The National Down Syndrome Society just launched a fabulous new campaign to honor and celebrate the great stories of the 400,000 Americans living with Down syndrome. "My Great Story" will be showcased in an online storybook on the NDSS website.

To build the storybook, the NDSS needs to hear from people with Down syndrome -- their achievements, dreams, aspirations, and successes. They're also interested in stories about how someone with DS -- a friend, family member, colleague, student, patient, neighbor -- has inspired you. To enter a story, go to www.ndss.org/stories.

To accompany the campaign, the NDSS has developed these two awesome print PSAs which will appear in national and local media this fall. Take a sneek peak at the ads (click on the ad to enlarge so you can read the copy), and click on the links to read their respective stories and see behind-the-scenes video interviews.

Honestly, how can I look at these inspiring young people and not dream anything but "big" dreams for our own loving, funny, inquisitive, steal-my-heart son!

Sara Wolff, The Public Speaker




















Sujeet Desai, The Traveler

Vote for Brad!

People Magazine and Major League Baseball are sponsoring an "All-Stars Among Us" national contest.  Brad Hennefer, who has Down syndrome and is the founder of Golf for Life Foundation, has been chosen as one of 90 finalists.  Brad is the only person in his high school to be inducted into its hall of fame.

Please take a minute to vote for Brad -- click on the "Philadelphia Phillies" logo (you don't need to be a Phillies fan -- this is for a greater cause) and then click on Brad's picture.

If Brad wins the Phillies vote, he'll win a trip to the MLB All-Star Game in St. Louis on July 14th, and will be recognized there.  If he's the top vote getter, Brad will be featured in an upcoming issue of People Magazine.  

This would be an ideal venue to reach millions with the very simple, very powerful message that people with Down syndrome are "More Alike than Different."

 

Vote for Brad until June 24th--vote as many times as you like.  I encourage you to share this with your friends.  Thanks!

In Memory of Thomas Webster Potter

As many of you know, Tom and Lucas visited Grandpa Potter in St. Louis a few weeks ago because of his ailing health. On Sunday, May 24, 2009, Tom's beloved grandpa passed away in his sleep at his daughter Karen's home in St. Louis. He was 87. He is buried next to his wife Mary at Lake Charles Memorial Park.

Thomas W. Potter was born in Arkansas. He was a WWII veteran, father of 5, grandfather of 11, and great-grandfather of 10. In 1943, he married Mary Marshall in Savannah while in the service. As a widower, at the sprightly age of 80 he married Irene who survived him.

Grandpa loved trout fishing and was an avid gardner. He and Tom's grandma were very active in Church, and were fans of Southern gospel music, often attending Southern gospel music conventions in the Blue Ridge Mountains.

As Grandpa's namesake, Tom adored his grandfather and has attempted to live a life to make him proud. Grandpa played a prominent role in many of Tom's favorite childhood memories, especially fishing in Montauk.  I remember Grandpa as a sweet, loving, gentle man who never had a cross word for anyone.  He will be missed.

Grandpa lived a healthy, happy, long life. His final days were spent in the loving company of his children and dear family and friends. Should we all be so lucky.

Here are Grandpa, Lucas, and Tom at Aunt Jackie's house in St. Louis, August 2007.