Friday, December 26, 2008

Feliz Navidad

We've had an action-packed holiday season, especially since Tayler is here for a visit while Tom successfully opened a new restaurant only three days before Christmas. Tayler will be with us until the New Year and we're happy and excited to share the holidays with her. Tom is now at Le Meridien on Sunny Isles Beach -- back with his boss from the Diplomat, Terry, who is the general manager at the hotel. Terry recruited Tom to launch a new restaurant after a contract with the existing restaurant ran out. Tom is loving his new gig, although he's been working long hours including Christmas and New Year's. In the meantime, Bean and I are enjoying two weeks off of school and work, respectively.

Here are a few videos -- the first is Lucas dancing on Noche Buena (traditional Cuban celebration on Christmas Eve which we shared with Lucas' godfather, Armando, and his family). The second clip is the aftermath of Christmas morning, and the third is Lucas with his first junior ATV. Enjoy! Hope you're having a wonderful holiday season. More pics from our holiday will follow...

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Saturday, December 13, 2008

Vrrooommmmm.....

Watch Lucas with one of his favorite activities...he already mastered the Leap Farm animal version so he's moved on to the vehicles...the pieces are smaller so it's good for eye-hand coordination and in building fine motor skills. He likes to mix and match the pieces too and we're trying to break him of his need to toss them across the room...it's getting better.

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Monday, December 8, 2008

Lions, Tigers, and Giraffes? Oh My!

We had a great day at the Miami Zoo a couple of weeks ago. The weather was beautiful which helped bring the animals out. Lucas was entertained by the elephants, the monkeys, and the giraffes... see for yourself (don't forget the volume).


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Tuesday, November 18, 2008

More Alike than Different

At the National Down Syndrome Congress annual conference in Boston this past July, I was so moved when they played videos which highlighted the totally real, totally "normal" lives of four young people with Down syndrome. The NDSC posted this video on their site recently and I invite you to watch for yourself.

Although it sometimes seems challenging to be on this journey, these role models and others like them have paved a path for Lucas and the next generation of kids with DS. Because of their determination, perseverance, and spirits, we can all dream a little bigger.

Monday, November 17, 2008

Happy 1st Birthday, Roscoe!

Roscoe turned the big ONE today. He has turned into such a character and is Lucas' side kick and partner in crime...they're already on their way to causing lots of trouble. Here are a few pics from today, including Roscoe enjoying his birthday grub of buffalo chili (quite a treat since he never eats people food, except for when Lucas shares). He also has a favorite trick so check him out on the short video (last frame).

Here's Roscoe when he first joined our family as a nine week old puppy...and now as a full grown Havanese. Happy birthday, Roscoe!
































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Sunday, November 16, 2008

Beanie's Farm

The weather in Miami today was fantastic...about 65 and sunny so we headed to a petting zoo where Lucas got to see farm animals up-close and personal. Lucas got to pet and feed the cow and goats, and pet a pig and ponies...chasing the ducks was priceless! The little turkey didn't want to ride the pony...maybe next time.


Sunday, November 9, 2008

Weekend Fun

We had an active weekend which featured one of the best investments we've ever made...Lucas' first play set...he LOVES it, don't you think?! Oh yeah, if you look closely, you can see he's wearing his pajama top and hasn't even had his hair combed. Too busy having fun!

Tom and I went to the Dolphins vs. Seahawks game, and sadly, the Seahawks were defeated 19 to 21, but we had a great time just the same.






Tuesday, November 4, 2008

We Made History

Tonight, America voted to change the course of our nation by electing Barack Obama as 44th President of the United States of America, and effectively end the Bush reign. History was made with the election of the first African-American U.S. president who has brought so much enthusiasm and hope to the people of our nation.

We believe Obama will provide "the change we need" and help unite our country, and take our nation in a new direction both at home and overseas during the most challenging time for our country since the Great Depression. Personally, as we look to Lucas' future, it was critical that Obama articulate his position on disability, including his plan to fully fund IDEA (Individuals with Disabilities Education Act) -- and he didn't disappoint.

This very long road has come to an end...and the next chapter is about to begin.

We toast to President Obama & Vice President Biden -- and to our fellow Americans as we embark together on this historic and exciting time for our country and our world!

Saturday, November 1, 2008

Trick or Treat

For Lucas' first true Halloween experience, we went to Hollywood to join our friends' Susi and Adam and their girls for trick or treating fun in their neighborhood. Lucas made out like a bandit in the candy department. We also visited with our friends Cat and Jimmy and their cutie new addition, one-month-old Valentina. Earlier that day, Lucas dressed up for a Halloween party at school and we carved and decorated pumpkins. Here are photos including one with Lucas and his sidekick. Enjoy!






Thursday, October 23, 2008

Bon Voyage

To celebrate Lucas' 2nd birthday and Tom's mom's belated birthday (who traveled from Seattle for a visit), we headed to the Bahamas on a 3-day cruise on the Norwegian Sky. We splurged for a suite at the front of the ship where we took advantage of breakfast on the balcony and relished the awesome views as we set sail from Miami.

We stopped in Nassau and spent the day at Atlantis where we enjoyed the pools, the water slides, and a cool aquarium -- Atlantis is very Vegas! We then headed to NCL's private island, Great Stirrup Cay, and although we were among the few who made it to the island, we were soon shipped back on board because of deteriorating weather, but that didn't keep us from having a great time all around! Everyone (except moi) was a first-time cruiser and I think we'll be back for more!















Wednesday, October 15, 2008

Lucas' Amazing Year Two

Today, we celebrated Lucas' 2nd birthday. In the blink of an eye, two years have gone by since that beautiful October day when Lucas entered our life and things have never been the same. Lucas has grown and changed so much in this short time, and every day he amazes, entertains, and inspires us. Today we had a birthday party at school where Thomas the Train cupcakes were a big hit, and tonight, we celebrated with a small group of family and friends with Cuban cake and pastelitos (pastries).

Life is good.

And now, for my yearly installment of Lucas' year in pictures (don't forget the sound). Enjoy!

Sunday, September 28, 2008

Are You Excited?

Lucas now is walking everywhere, and asserting his independence at every turn. Check out his newest trick -- he had us rolling in the aisle when we first saw him do this and now he does it on command whenever he's asked "are you excited?"


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Saturday, September 13, 2008

Lucas on Parenting Website

In honor of Down Syndrome Awareness month in October, Parenting's website is featuring a gallery (well, there are now six galleries) of pictures of kids with Down syndrome, and Lucas made the cut. Here he is.

Tuesday, September 9, 2008

Labor Day Break

Four plus years after our honeymoon, we ventured back to where it all began...Key West. This time marked our first visit with our little bean. Key West still had much of the magic we remember so fondly, except we didn't get to enjoy quite as much pool time, pina coladas in hand. It was both because of our new addition as much as the inclement weather, courtesy of Hurricane Gustav. We made the most of our little getaway and had a great time just the same.

We enjoyed some of our favorite activities including a visit to the Hemingway House to point out the 6-toed cats to Lucas (especially Charlie Chaplin pictured below), a night out in Mallory Square for freak watching, renting bikes to tour Duval street with Lucas in tow (literally!), and everyone's favorite Key West pastime, hanging with the chickens. We ate and ate, and then ate some more...our favorite stops included Blue Heaven and the new Sarabeth's for the most amazing breakfast (the owner spent more than 20 years as the GM of Sarabeth's on the Upper West Side in Manhattan). All in all, a great way to say goodbye to Summer.






Saturday, August 23, 2008

Summer Vacations

I still need to post some photos from our summer vacation to Seattle in June (although it felt a lot more like fall with all the rain and wind), but we had several visitors to our neck of the woods over the last few weeks. First up, cousin Denise and her friend Angie from St. Louis stopped in on their way back from a Caribbean cruise, and we caught up with them for lunch on South Beach (first picture).

The second photo is of Lucas with his sister, Tayler, when she came for a week-long visit from Seattle. We loved having Tayler and Lucas is very fond of her (if you can't tell!). We're hoping she can make it back at Christmas time.

Lastly, our dear friend, Rhonda, and her brother passed through from Seattle and Hawaii (respectively) on their way to a Caribbean cruise. Being around all these cruising people has given us the bug to go ourselves...we'll see when we can swing it. It was so great to have them all visit...when are you coming?



Wednesday, August 20, 2008

Happy Birthday Daddy!

In what has to be one of the most unexciting birthdays in recent history, Tom turned 37 on August 18th as Tropical Storm Fay made landfall along the western South Florida coast. But not even a storm could keep my boys away from chocolate cake!


Wednesday, August 13, 2008

Just Call Me an Activist!

I was interviewed for a piece today on the debate about whether "Tropic Thunder" is highly offensive -- you can only imagine on what side I stood...I stood proud with my fellow parents of kids with developmental disabilities all over the country who are speaking out on the disregard for our community and the overuse of the negative, offensive word "retard" which was used 17 times in what I'm sure will be a summer blockbuster. Don't miss Ben Stiller defending himself on the issue -- he still doesn't believe an apology is warranted, and even if I wanted to forgive him for making the movie, I can't pardon him for not admitting he made a mistake by not consulting with disability groups, and ultimately, not caring he offended an entire community. If you ask me, Beanie steals the show! Here we are on Miami's CBS 4.

Tropic "Blunder" Update

This just in: I have an interview with our local CBS affiliate this morning...I'll post on that later.

Unfortunately, this horrible movie is hitting screens today, but not without a ton of negative publicity -- as a former publicist, I usually say, "any press is good press", but in this context, I'd like to think that although Ben Stiller's movie will pull in millions at the box office, it we will start a dialog with Paramount/Dreamworks and other studios. Studios now know that disability groups are watching and active and will take them to task for any future movies that don't consult our community before using derogatory, slanderous material poking fun at one group in the name of comedy. Johnny Knoxville's "The Ringer" about a guy who poses as a Special Olympics athlete to make quick cash, not only consulted with Special Olympics, but had the organization's endorsement -- it was done in good taste and actually depicted the athletes as witty and nothing to be "afraid" of. The bottom line is if one group laughs at the expense of another, it's not funny, it's humiliation.

Here's the thing...the critics who are calling it "the funniest movie of the summer" are probably right - and all this talk about the jokes making fun of actors who play the mentally challenged in an attempt at Oscar, NOT at the disabled themselves need to get that the millions who will see this "satire" 1) don't know what "satire" IS, and 2) won't "get" that it's not poking fun at people with disabilities.

I'm proud to say many moms and dads on my chat board, downsyn.com, have landed interviews on their local stations, written letters to the editor, and blogged about it so their friends and family are aware of this movie and help support the boycott. My dear friend, Mike, wrote a letter to the editor to the Seattle PI (thanks, Mike!).

Here is some of my favorite coverage of the topic: a clip from the protest at the movie's premiere from CNN, a byline by Tim Shriver, Executive Director of Special Olympics in the Washington Post, and an opinion piece from a disabilities professor at the University of Illinois on NPR.

Sadly, we now wait to see how long it takes for some bully to coin the phrase "full retard" at the local playground. I hope it's not done within ear shot of me or my husband...

For the latest, check out Patricia Bauer's blog.

Saturday, August 2, 2008

Shame On You "Tropic Thunder"

It is with a sad, heavy, and down-right pissed-off heart that I write this post. There is a new movie, Tropic Thunder, premiering August 13th which was written, directed, and stars one of my favorite comic actors, Ben Stiller. It also stars the very funny Jack Black and the supremely talented Robert Downey Jr. I, for one, will not be going to see it and ask that you pledge not to do so either. Why? Well, Ben Stiller's character plays a has-been actor whose one Oscar bid failed for a movie titled "Simple Jack" with the tagline"Once upon a time...there was a retard." HOW IS THAT OKAY!?!?! The movie within a movie, even has its own website www.simplejackmovie.com. One of my heroes, Patricia Bauer -- formerly of The Washington Post who has an adult child with DS and writes about disability issues -- addresses the issues on her blog.

Needless to say, the disabilities community is up in arms because although DreamWorks/Paramount and those associated with the movie are saying the movie is an equal opportunity offender, not a single disabilities organization was consulted in the making of this movie. Several organizations including the National Down Syndrome Congress and Special Olympics are calling an emergency meeting with the studio to discuss the community's concerns about the way people with intellectual disabilities are portrayed and ridiculed in the movie. If you think I'm exaggerating, read this part of the script where Downey's character tells Stillers "never go full retard." Can you believe THAT?!

I have tons of concerns, not the least of which is that these men who are idolized and followed by so many, don't care who they squash on their way to collect a quick buck -- and I'm sure they sleep at night because they view their work as "art" and don't take any responsibility for reinforcing and furthering these negative stereotypes. More so, they are giving jackasses of the world license to use that derogatory, insulting, ugly word! Can you even imagine what would happen if instead of using "retard" they used the "n" word? When will we as a society not tolerate this type of behavior? Sadly, Ben Stiller is dead in the Rhyneer household. Please tell others not to bite on this movie...if we can each spread the word and put a dent -- even if it's a small one -- in their box-office take, it'll hurt and maybe they'll start paying attention. I'll keep you posted on what develops.

Monday, July 28, 2008

This Bean Was Made for Walking

We have a walking BEAN! Soon, there will be NO stopping him. Don't miss Roscoe giving Lucas his support.

For those who don't know, Down syndrome often causes delay in a child's global development which means a child will reach all the developmental milestones, just at his/her own pace. Lucas has reached several milestones within the average timeframe, but has needed a little extra time to reach others, such as walking. We've tried not to obsess TOO much over the "typical" guidelines so we can more fully enjoy Lucas and celebrate all the big and small victories along the way. More important than "when" kids master their milestones is "how" and Lucas has great posture and his core strength is improving every day which are essential to everything he'll ever do (I never thought I'd learn so much about how the body works).

With the help of weekly speech/language, physical, and occupational therapies, the support of his teacher and assistants (a total of 10 women!) and his slew of specialists, Lucas is making huge strides and holding his own among his peers. He surprises us daily with his inquisitive, independent, fun-loving nature. We are so proud of our bean, can't you tell?!

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Please leave a message for Lucas...I think THIS merits one!

Friday, July 25, 2008

Peek-A-Boo

Here's our son in action...he's teething since he's got two bottom teeth coming in and don't mind the seeds all over him...boy loves his dragon fruit (blame his father). By the way, he knows many of his body parts now too. Remember to turn up the volume. Enjoy!


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Dynamic Duo Update

Here is another installment of the dynamic duo. I'm glad someone is enjoying Lucas' Spiderman chair! When not otherwise lounging on our furniture, we're happy to report Roscoe is also enjoying the company of his trainer from "Canine Counselors" and learning to be a good dog (most days). The last shot is of Lucas as Prince Charming at the "Fairy Tale Ball" -- an end-of-the-year fundraiser for Lucas' school. Lucas will be "graduating" to the toddler II classroom in the next couple of weeks as the new school year begins Monday, August 18th (Tom's birthday). The goal is to have him independently walking by then and he continues to make strides in that direction every day. This is THE month!







Monday, July 14, 2008

Home from NDSC Convention

I returned late last night from the National Down Syndrome Congress annual convention in Boston. Although I had to go solo, it was an awesome experience and my head is still spinning from the emotions and all the information -- I learned so many things, including matters that will have an impact on Lucas' life and our world. I particularly enjoyed the keynote presentations, hearing from self-advocates (young adults with Down syndrome) and connecting with like-minded parents.

I was very excited to see a preview of the new NDSC public service campaign -- in both Spanish and English -- titled "We're More Alike than Different" which I'm going to help promote in south Florida because I feel the campaign can help shift the general public perception of people with Down syndrome. It's funny, I feel as though I've been drafted into this role of advocate, but one I'll gladly do if it can help shape Lucas' future into a more accepting and loving place. Stay tuned for more as soon as I catch my breath...for now, I must finish bathing Lucas who is busy banging on his xylophone (thanks, Mom!).

Monday, July 7, 2008

Watch out NBA

Here's Lucas enjoying one of his favorite bath-time activities and saying the one word he's got down...it still needs perfecting, but he's gettin' it! Enjoy.

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Saturday, June 28, 2008

A Turning Point...

A few weeks ago, I participated in a leadership training session for the roll-out of the University of Miami Health System. I met people in departments and institutions across the huge medical campus, but one person in particular played a pivotal role in helping me stand up for myself, for Lucas's sake.

During a role-playing exercise, this nice nurse who I had just met over lunch stood up in a room of several hundred people -- she was playing the role of mother to a pregnant woman of "advanced maternal age" -- and said "She's too old to have a baby; what if the baby is retarded? Who will take care of it?" While laughter erupted in the room, her words sent shivers up my spine. See, although you go about living your life, sometimes people walk into it and say STUPID SHIT to ruin an otherwise enjoyable experience.

I sat there for the remainder of the afternoon plotting revenge (not exactly) -- what I would say, how I would say it, when would I do it...I wouldn't let this opportunity pass...not this one, I've let others off the hook, but it was time to stand up. At the end of the day, I asked to speak with her and she was very approachable so I just let it flow -- I reminded her my son has Down syndrome and as his mother, I take care of him like any parent would. I asked her not to use the "R" word which should be stricken from our vocabulary because it's never used in anything but a demeaning way and makes light of a devastating disability. I told her I needed to stand up for my son and not let people get away with saying hurtful things. Needless to say -- she apologized profusely and thanked me repeatedly for bringing it to her attention. She tried to tell me she didn't mean any disrespect and I told her no one ever does. I was so overwhelmed by the experience, I sobbed openly as she hugged and consoled me. It was a turning point in my journey as Lucas' mom and an experience neither one of us will soon forget.

Earlier this week, I took Lucas to the pediatrician -- she often uses inappropriate and incorrect language when speaking to us about Lucas' condition. Tuesday was no exception. When she said "...he IS Down's", I surprised myself when I cut her off and corrected her without raising my voice or skipping a beat, "...he HAS Down's, he ISN'T Down's" -- she stopped, corrected herself, and carefully chose her words for the remainder of the conversation. At the end of the day, if I don't use these experiences as opportunities to educate people, who will?

I think I'm getting the knack of it. Sweet victory.

Friday, June 20, 2008

Big Week for Beanie...

It was a big week in the Rhyneer household. Lucas turned 20 months and guess he decided it was time to start walking AND talking! First, he very purposefully said "ball" TWICE while handing me, what else, balls! Second, he took a couple of independent steps getting from the toilet seat to the tub. Interestingly, both of these major moves took place in the bathroom -- beanie does love his baths! I shared the big news with his speech and physical therapists -- in addition to the county-sponsored weekly sessions, Lucas goes to private physical therapy once a month -- Isabel has been seeing him since he was two months old and this morning she warned me he's ready to GO...with a little confidence building, she expects him to be walking independently by this time next month. Watch out Groucho and Roscoe!

Lucas has been steadily increasing his sign language vocabulary which is up to about 25 words and is combining 2-3 word phrases, but it's so nice to see and hear him "speak" -- he's cooking up a few more words so I'm sure sometime soon we'll be hearing others. It seems somewhat surreal to look back and remember a time when I wondered if he'd ever "do" anything -- admittedly, he was about 2 months old. There was -- and still is -- so much fear about the impact of Lucas' diagnosis on his development and as a result, his future. But one thing is true.... every day, Lucas shows us how determined he is and how much he can accomplish with some love, dedication, and support. May this be a sign of many new things to come! He is an exceptional child and our life is so much happier, richer, and more meaningful because he is our son.

Friday, May 30, 2008

Representing!

The face of Down syndrome is changing thanks to young people like Brett. Please take a couple of minutes to watch him shake his money maker and speak on behalf of people with disabilities on "So You Think You Can Dance?" ROCK ON BRETT!

Tuesday, May 20, 2008

Friday, May 16, 2008

Lucas is Official

Lucas was baptized on Saturday, May 10th at the Prince of Peace Catholic Church in Miami. It was an intimate ceremony with only a handful of family and friends which of course included Lucas' Godmother/Madrina, Silvia, and Godfather/Padrino, Armando -- Sandy's long-time, very dear friends. The priest, who we had never met before, did a fantastic job of making it seem as if though we all belonged in this peaceful, quaint church. Despite his thick accent, Padre Geraldo spoke eloquently about this first rite and wove stories in Spanish which added charm, humor, and personalized the experience for us all.

Lucas was such a big boy and behaved so well during the ceremony -- his only complaint was when cold water was poured over his head -- but can you blame the kid? The priest handled him so tenderly and many of us were moved to watch Lucas lock eyes on him when he was anoited with oil and then how Lucas' whole face lit up at the end of the blessing. Mami would be so happy and I know she was there in spirit. Armando summed it up best...it was one of the most spiritual experiences I've had in a church in a long time.

We were very blessed to be able to share such a beautiful day and special occasion with everyone. A great big thanks to Padrino and his peeps -- Abuela Adita, Tia Haydee, and cousin Heidi -- for orchestrating the event and for all the support in making it possible. Here are a few photos of the festivities.