mundo bean

Lucas at Five = Mr. Independent

2012-01-18T13:59:00.002-05:00

This new year, I'm recommitting myself to blogging to keep Lucas' fans posted on his latest adventures, especially since this is "the" big year of transition to kindergarten. Gasp! There are days I can barely wrap my head around how much he's grown and how quickly the time has flown as it was just yesterday he was in the NICU and we were praying to get him home.

Lucas turned 5 on October 15th with the following stats: 38 pounds and 40.5 inches -- a nice size kid (especially for one with Down syndrome). He continues to be lovable, curious, and every day, more fiercely independent with his own opinion about what he wants to do and how he's going to do it. He's developing his own personality which includes a silly sense of humor...he loves to crack us up and make others laugh with him and at him. He's even developed an "angry" face which he shows off on command, especially when you don't agree with him or let him have his way, which is often!

Lucas started preK-4 at Coconut Grove Elementary in August 2011, in an inclusive setting where half the kids have an IEP (individualized education plan/some sort of disability) with the others serving as "role models" (typically developing kids) -- Lucas is the only one with Down syndrome. His teacher, Ms. Michele, is militant -- but kind -- with high expectations and a duty to ensure she prepares all her kids for kindergarten, which is exactly what Lucas needs. He has been responding so well to the buddy system in school, as he's been paired with a friend who provides support and encouragement in areas where Lucas struggles. The after-care situation has been tough. Although Lucas (and we) loved his nanny, Stephanie, who was with us for nearly a year, she left for graduate school and her replacement, Logan, was only with us for a few months until she found full-time employment. School lets out at 1:50 PM so we've opted to drive him (thanks to my sister) to private preschool in the afternoons, where he's enjoying making new friends.

He's currently into (in no particular order):

Animals (farm and wild) -- Lucas is an animal-lover extraordinaire...he loves the zoo, loves to feed them, brush them, ride them (including Roscoe if he gets a chance), "read" about them, and loves a Sprout show called "Zaboomafoo" -- his favorites are horses as he loves to feed them apples and carrots, lions and monkeys, although he has a thing for penguins too (he's my kid after all!)
Puzzles (floor and table-top) -- he loves building maps of the US and the world and knows where all his favorite people live, from Seattle to Miami! He's starting to build 63 piece puzzles, which require patience on both our parts
Wrestling (especially with Daddy and Roscoe)
Playing games such as Uno Moo, dominoes, Don't Spill the Beans
Playing with his train sets and Playmobil "safari" structure/animals/people (he does a lot of imaginative play)
Toy Story triology -- Lucas loves anything TS and his buddies Woody & Buzz.
"Where the Wild Things Are?" book, animation, stuffed thing/animal
He could live off pasta, quesadillas, tacos, tomatoes, grapes, oranges and bananas!
Like his mom, the kid likes to travel!
Quite the film buff, Lucas requests countless replays of his favorites (usually involving animals), including Toy Story, Lion King, Kung Fu Panda, Lilo and Stitch, Curious George -- although he's not allowed any movies during the week
The iPad and iPhone, navigating through educational apps and on Netflix to play his favorite movies or kids' shows
The water...beach, pool, water park...you name it! He started swimming independently this past summer and is a good judge of how far he can swim before he needs to retreat back to the edge
The playground/jungle gyms...from swings to slides to rock climbing and when he's feeling brave, trying monkey bars
Tae Kwon Do...he's a white belt and starting to following commands and learn to kick, chop, and sit like a little warrior

As I mention every year and as is true of most kids with Down syndrome, his language continues to be the slowest area of development...however, he continues to grow his vocabulary and is mostly speaking in 4-6 word phrases or short sentences. He's started using pronouns and connectors, such as "of" and "on" and even "and"...he often strings a bunch of words together to form a "Lucas" sentence so needs a lot of reminders to "use all your words." His articulation is also improving and now he's understood by most people, most of the time...the "hard" sounds such as "g" and "k" still allude him...but he's showing improvements there too as he's finally able to say things like "cat" clearly. He's asking more "what" "where" questions. He knows the days of the weeks -- his favorite is Friday which means "pizza and a movie" as he'll remind us every Friday morning.

A very exciting milestone is that Lucas is really starting to read...we've been using "Hooked on Phonics" (thanks to my friend, Kerra, who used it with her daughter) and he's starting to get the "an" (pan, can, ran) and "at" words (bat, cat, rat) and reading short sentences with those words. I can see the wheels turning as he sounds out letters and strings words together! He also knows a bunch of sight words. We've been working with him to build some reading skills so he'll be a little ahead of the game when he starts kindergarten, since reading is such an important academic skill in that grade.

He can now rote count to 20 (and is understanding counting beyond as in 21, 22, 23, etc.) and even counts objects past 10. We recently took him to the eye doctor and although his vision is bad, it hasn't gotten worse in the past year...we're still kicking ourselves for not buying stock in 4-eyes because although knows glasses help him see, he has an endless supply of frames that are trashed.

Lucas' attention span and focus has improved significantly and he can now concentrate on a task for longer, even one he's not as interested in. We often hear he's well behaved with others, saving his brattiness for his parents...he continues to be willful and theatrical when he doesn't get his way...wonder if he'll ever grow out of that?! Another area of focus for us now is teaching Lucas to "keep your hands to yourself" as he lacks boundaries -- he will go up to a stranger and take their drink and drink from it (if we aren't there to stop him!) or touch/embrace someone if the mood strikes him -- I don't condone that behavior because although it can be "cute" when they're little, I certainly don't want a 15 or 25 year old who I don't know, hugging me...it's not appropriate. Luckily, Lucas has never been a big huger or loving on strangers so I think this will be something we can curb before it becomes a problem as he gets older. The "keep your hands to yourself" is also working nicely on the playground when he wants to push someone...one thing is for sure, he's no shrinking violet...the kid stands up for himself!

The other program we're using is "Handwriting without Tears" which is a multi-sensory program to help with fine motor skills, specifically handwriting. I'm encouraged he's starting to write some letters independently, including "L" and "T" and "O" and has written most of the alphabet (and done a pretty good job) using this system. It also has a great CD to reinforce the concepts. We highly recommend it!

Although it sometimes takes a while to accomplish, Lucas can put on his clothes, including shoes, independently. He's such a boy as he selects his clothes based on what's at the top of the pile...although sometimes he does put together some cute outfits. Another huge milestone (drum roll please!)...he's finally potty trained! I can now tell him to go pee (he often needs reminders) and he can go all by himself and even wash his hands (most of the time!). Wiping is another story...he's actually not too bad, except for trying to use the whole roll of toilet paper if I'm not looking!

In the gross motor skills area, Lucas is now jumping OFF the ground! YAY! He's been wanting to jump for so long that it's satisfying to see him get it and the pleasure he gets out of doing it...especially jumping off any (not too tall!) structure. The next big goal is getting him on a bike.

Lucas' 5th year was filled with lots of triumphs, progress, change and maturity...for all of us. I sometimes reflect back to what it was like when we first heard his diagnosis -- when he wasn't even an hour old -- paralyzed by fear, where all I could see was the Down syndrome and not, my son. But, we've gotten to know our spunky little man and given how far he's come at just 5, I fully expect he will be able to accomplish many goals and fulfill his own dreams. For now, I remind myself as I look back to how far we've all come "I wish I would have known then what I know now" which gives me strength and hope when I start to worry about the future's uncertainty...one thing is for sure, we will be his biggest cheerleaders, rooting him on every step of the way. Here's to another year full of health, happiness, growth, learning, new friends, great times and lots and lots of love!

It's Not Acceptable...

2011-05-24T12:43:00.005-04:00

I've been saying this from day one and using these same examples so it provided tremendous validity to see the Spread the Word to End the Word campaign bring it to life, especially using the actors on the super hit Glee! I hope this helps make the masses really "get it" -- Bravo!

Take the Pledge!

2011-03-02T17:52:00.006-05:00

March 2nd has become "Spread the Word to End the Word" day (sign the petition via this link) in the disability community -- with the hopes of making the use of the word "retard" unacceptable and creating a world free of prejudice against those with intellectual disabilities. Stand with us by taking the pledge to eliminate the "r-word" from everyday speech and promote the acceptance and inclusion of people with intellectual disabilities, like Lucas.

I get crazy when people turn this movement into an argument about people's "freedom of speech" -- the way I see it, it's a choice...sure you can use that language, but we need to get to a place where society finds it unacceptable to do so. We've done it before with other words used to put down and belittle people because of race, religion, sexual orientation, and now disability -- because basically, we can't help the way we were born! We all are what we are, and it's time we started looking past the differences and instead focused on all the things we have in common and bring us together.

I was reflecting today on the last time I heard someone say the word "retard" and I'm happy to report, it's been a while. I don't know if it's because I've managed to train all those around me not to use it or if it's because a new awakening is really taking hold and civilized people are now cognizant of how hurtful, demeaning, disrespectful and all-around mean it is to use the word. Let's hope it's the latter, but the latter wouldn't be possible without the former.

Self-advocates, parents and others who love someone with Down syndrome or other cognitive disabilities have become a force in the blogosphere and a unified voice, standing together to defend the rights and place in the world for those with disabilities...a world where it's unacceptable to use degrading language.

Wow...it'd been a while since I was on my soap box. I kinda like the change of scenery.

Stand with us and sign the pledge!

Best Buddies @ MIA

2011-02-14T16:18:00.012-05:00

We had a great time at the unveiling of the Best Buddies photo exhibit at Miami International Airport. Lucas was quick to point out the photo of him and "Eunie" -- the larger-than-life images are beautiful and inspiring...see for yourself. Anthony thanked MIA and a host of others, and celebrated parents of kids with special needs, including us. He spoke about Eunice's involvement with Lucas and his family's connection to him and said some wonderful things about our little bean, which was very sweet. Lucas was hamming it up, and although he didn't make it to the evening news, a brief story ran.

A Star is Born

2011-02-04T17:08:00.018-05:00

Lucas' 4th birthday was eventful, and even included a professional photo shoot for Best Buddies with his buddy, Eunice. A photo exhibit is now on display showcasing Lucas and Eunice's photo (left) -- one of 12 larger-than-life B&W images of Best Buddies participants and celebrity supporters, including Cindy Crawford, Heat's Chris Bosh, Rob Lowe, New England Patriot's Tom Brady, Sugar Ray Leonard, and Romero Britto. Look for the exhibit if you're flying through Miami International Airport -- it's in the Concession Hall/South International Wing (Terminals H and J) through May 2011. On Valentine's Day, we're attending an event to see the exhibit firsthand. We're excited and proud for Lucas to serve as ambassador for this great organization with a message of inclusion.

Best Buddies is based in Miami, but is a global volunteer movement that creates opportunities for friendships, employment and leadership development for people with intellectual and developmental disabilities, like Lucas. It was founded by Anthony Kennedy Shriver -- Eunice and Sargent Shriver's youngest son -- and there are 1,500 chapters in middle and high schools as well as colleges all over the world. Lucas' buddy, Eunice, is Anthony's oldest daughter...a high school student now.

For those who don't know the story: Eunice met Lucas when he was not yet 2 years old...some say it was love at first sight. Eunice volunteered at the Debbie School for the summer, and although she was suppose to rotate through all the classrooms, after spending some time with the lady killer (Lucas), she became his personal "assistant" for the remainder of the summer. Eunice took her responsibilities very seriously, so one day when she was out sick, she sent in her younger sister, Francesca, who walked in and asked "where's Lucas?" and took up her post.

That fall, Eunice and Lucas continued a friendship with regular visits to the welcoming Shrivers, where Lucas made himself at home (much to his mother's dismay). The rest, as they say, is history in the making.

Lucas at 4 Years Old

2010-12-30T09:31:00.001-05:00

I've been working on this update since Lucas turned 4 in October because it provides tremendous perspective to look at the leaps in his development, in this case between 36 and 48 months. Lucas is weighing 36 pounds and is 39 inches tall -- he's at nearly the 50th percentile for weight and 20th percentile for height for typically-developing kids his age.

At 4, most mornings, Lucas greets me with a huge smile and enthusiastic "hi mommy!" and often an unsolicited hug and kiss. He's energetic, lovable and always curious...I guess most people would call him "busy" as he can go from one activity to the next, although I've noticed lately, he can also play for 15 minutes at a time with his animals and/or Toy Story bunch. He is friendly and quick with a smile and "hi" to people in the grocery store, in the zoo, at school, everywhere! If you (or he) get a boo-boo, he's the first to kiss it and make it better. Although not fast, he's active...he loves to run around outside, especially chasing Roscoe, and can spend hours on the playground. He loves attention...often calling me into his playroom so I can see the puzzle he's working on or watch him sing, dance, or recite portions of the movie...if I'm on the couch, he'll say "get up, mommy" so I can join in.

Lucas started preK-3 at Silver Bluff Elementary on August 23, 2010. He is in a "reverse mainstream" class, which means there will be 12-14 children with an IEP (individualized education plan/some sort of disability) in the class with 3-4 "role models" (typically developing kids). Most of the children are older than Lucas and he's the only one with Down syndrome. The teacher, Ms. Morales, is a good partner and we're on our way to a productive first year in elementary school. Another great piece of news is that we hired an afternoon nanny, Stephanie, who picks Lucas up from school (at 1:50) and is with him until we get home around 5 -- Lucas loves her and she's a former teacher and dedicated to helping further Lucas' development...she's been a great addition!

He's become such a "boy" -- his favorite things to do now are wrestling with Daddy, Roscoe, as well as his "friends" (Buzz, Woody, Mickey Mouse, Handy Manny, etc.). He enjoys reading books and stories and watching Disney movies, especially Finding Nemo, Madagascar 1 and 2 as well as the Toy Story triology not to mention the "Mickey Mouse Sing-a-longs" (thanks to Nanny!). We're excited to have Lucas start playing games, such as dominos (the Toy Story version). We're getting him a computer soon as he's very fond of the website, Starfall (key to learning his alphabet and certain words), and is learning how to navigate using a mouse and keypad. He re-discovered his new favorite book "Where the Wild Things Are" and can "read" along to the entire story.

Lucas now can identify colors, shapes, and both the capital and small case letters of the alphabet. He also has a good grip on the phonetic sounds of many of the letters and often uses them when sounding out words as we read or he sight reads. For instance, he'll go "ppp" "pig" or "ttt" "tiger". Lucas loves playing "ABCs" using a magnetic board to have me spell words as he guesses them -- teaching him how to sound them out.

As with most kids with Down syndrome, his language continues to be the slowest area of development, and as a result, our primary focus. He continues to expand his vocabulary and has several hundred words in his vocabulary; he speaks in 3-4 word phrases or short sentences most of the time. One of his IEP goals is articulation of the "g" and "k" or the gutural sounds. We can carry on brief conversations such as "What is your name?" and he'll respond "Lucas Rhyneer"-- he can answer other questions such as "How old are you?" "Who is your teacher" "Who are your friends?" etc. He also knows I am "Sandy" and Daddy is "Tom" and his sister is "Tay-tay." He's also posing questions such as "Mommy, doing?" and "Where Roscoe?" with an inflection in his voice.

Lucas has a good handle on the concept of opposites. We're also working on sequencing (X happens first, followed by Y, and then Z) and rhyming words. He loves puzzles so we're using 24-piece floor puzzles to develop his hand-eye coordination, problem solving and fine motor skills.

He can count to 10 and even to 20 (the latter with more prompting and he sometimes skips a number or two), but we're working more on getting him to count "things" so the numbers have real meaning. He can count to 5 with some accuracy -- toes, fingers, etc.

Lucas has finally decided wearing glasses is helpful and sometimes even requests them. Behavior continues to be another area of focus for us. Lucas is listening more carefully and following directions better -- sometimes even 3-4 step directions. However, he still is very willful and theatrical when he doesn't get his way.

In the fine motor skills area, we're working on cutting with scissors and more coloring and drawing/copying lines. He knows how to eat with a spoon and fork, and although still a messy eater, he's getting better about it, especially when eating pasta (his favorite food). He's become more interested in helping with chores and the moment he feels I need help with anything says "Mommy, helper" and runs to my aid...he's also very helpful at the grocery store and can put his clothes in the hamper, get his pajamas and shoes, wash his hands and face, dry them, turn on/off the lights, and get on/off potty and flush (among other things), with little or no prompting. He can put on his clothes, including shoes, with little assistance, and can take everything off.

Unfortunately, Lucas lost physical therapy as a part of his IEP this year, which is usually the first of the supportive therapies to go. Although he's mastered going up and down stairs with alternating legs, we're still working on riding a tricycle and jumping. It's mostly about building up his strength, especially in his core. He can jump on a trampoline, but not from the ground -- even though he says "jump" and understands the concept, but can't execute it correctly. He loves the playground and gets around independently; he especially enjoys rock climbing (which is a great activity given it builds eye-hand coordination, strength, and reciprocal movement).

A big milestone is potty training. We started on "Black Friday" last Thanksgiving and over the course of 3 days, he went from Pull-ups to undies...and we were thrilled! He still has occasional accidents, and we're still working on getting him to request to use the restroom, which is coming along slowly.

Lucas has come a long way, baby! We're so proud of all of his milestones and look forward to continued progress and great memories in the coming year.

Writer's Block

2010-12-06T11:45:00.003-05:00

I've been absent for so long -- certainly not for a lack of activity, but more so because we've been SO active, I haven't had a chance to STOP, think, reflect, report. When I've taken a little hiatus in the past, I find it hard to jump back in because I'm honestly overwhelmed with so much to say, that I don't quite know where to start. So, this time, I've decided to start in the most obvious place for us...Lucas' unabashed adoration for his new favorite story, "Where the Wild Things Are" -- he has learned the story, many of the things the title character "Max" says in the book, and acting out what happens in the place where the wild things are, including wearing a crown for when Max is named "king" of the wild things. It's really been one of the cutest things ever. I broke down and asked Santa to bring him a stuffed Wild Thing, which I'm sure will be a big hit this Christmas!

Lucas' Mickey Mouse ClubHouse

2010-10-29T09:13:00.006-04:00

We had a wonderful little birthday party for Lucas at our home in Coconut Grove. We had some old friends and some new friends...and a fun time was had by all! Lucas especially enjoyed seeing his friends from the Debbie School and playing in his "Mickey Mouse Clubhouse" bounce house.

9-month old Nico and Mom, Mayra.

Lucas and Krysta.

Lucas, Ana and Nina.

Lucas with Cecilia, Amalie, Ana, and Nina.

Lucas and Max.

Happy Birthday to Lucas! Krysta, Amalie, Nina, Max, Lucas, Ana and Cecilia.

Lucas and Cameron.

Happy 4th Birthday Lucas!

2010-10-15T10:12:00.003-04:00

Happy 4th Birthday to the light of my life. We are so proud of our little bean and it's been a hell of a year. Watch the montage and see his "year in review" which includes trips to Seattle, Nashville, and Disney World...and moments with some of his favorite people in the world, including Mickey Mouse who we are on our way to see (again!).

Enjoy!

Make an on-line slide show at www.OneTrueMedia.com

NDSS 2010 NYC Buddy Walk & Video

2010-10-06T14:18:00.006-04:00

We had the extreme privilege and pleasure to attend the 2010 New York City Buddy Walk on Saturday, September 25th, to join thousands in Central Park and raise awareness for Down syndrome. "Team Bean" raised more than $2,400 for the National Down Syndrome Society. THANK YOU to all who supported the cause!

Lucas was one of about 200 people chosen to represent Down syndrome in the yearly video presentation in Times Square...it was an awesome experience seeing Lucas up on this GIGANTIC screen! He got a kick out of it too! Here's a link to the complete video on the NDSS website -- Lucas is at about 11:00 minutes into the video. Enjoy!

First Day of School

2010-08-24T21:43:00.012-04:00

Yesterday we dropped Lucas off for his first day of school as a PreK-3 student at Silver Bluff Elementary. He seemed so little among the "big" kids, and I was afraid he wasn't ready for it. We hung around a little longer than we should...surveying the teacher, the other students, interactions among them, how Lucas engaged with them and vice versa. As we said our goodbyes, we reassured him we'd be back soon to pick him up and encouraged him to have fun with his new friends and teacher, Mrs. Morales -- Tom spent the morning working with Lucas so he could sorta say her name correctly...he's getting there. As we turned to leave, Lucas was inconsolable, but what choice did we have but to believe he would quickly turn his attention to the adventure ahead.

No sooner did we get home, than I totally lost it...completely overwhelmed...crying for reasons I didn't quite understand. More than anything, I realized how afraid I am of failing Lucas and not making the "right" decisions on his behalf which could have a significant impact on the outcome of his life. It all sounds very dramatic, I know, my kid is only in pre-K, right? I put so much pressure on myself because I'm aware every step is a building block, and because of Lucas' disability we have to be extra vigilant about his education as he can't quickly recover from a "bad" year or a poor choice. I'm surprised this transition has caused so many feelings to bubble up, but I'm not alone, Tom is struggling too. It's a good thing I took the day off; I had no idea how much I'd need it. We parked ourselves on the beach in the warm afternoon sun which helped soothe our souls and clear our heads.

When the bell rang at 1:50 PM, we huddled with other parents waiting nervously and impatiently for our little ones. Lucas greeted us with a big smile and before we were even off the school grounds he said "more school" -- sounds like we're off to a good start. Keep your fingers crossed and say a little prayer for Lucas and his imperfect parents who are doing the best they can.

I guess, in the end, disability or not, it's hard watching our little ones grow up and head out into the world. And although I've been whispering this mantra into my son's ear since he came into the world "...grow into a happy, healthy, smart, and independent boy..." this mama is not quite ready for too much independence just yet.

Too Cute for Words..

2010-08-16T13:01:00.002-04:00

I just couldn't resist...for those who haven't already seen this photo, here is Lucas with his good friend, Krysta, this past weekend. Lucas and Krysta have been "friends" since Lucas was only 2 months old and for a long time, she called him "baby Lucas" and loved to boss him around (wait, she still does the latter). I was very fortunate to meet Krysta's mom through a mutual friend, and our families have become very dear friends through the years. Krysta will be 6 next month and heading to kindergarten (in a fully inclusive/mainstream setting...yeah!) while Lucas will be 4 in October and heading to Pre-K3....our babies are growing up healthy, strong, independent, and full of wonder, which makes me both happy and sad at the same time.

Lucas in Times Square!

2010-08-03T14:46:00.010-04:00

Here's an excerpt from an email I received today from the National Down Syndrome Society regarding a photo I submitted of Lucas.

Congratulations! After a worldwide search, the photo you submitted for the 2010 NDSS Times Square Video has been selected! The video will play in Times Square in the heart of New York City on the MTV plasma screen on Saturday, September 25, 2010.

The National Down Syndrome Society invites you and your family and friends to celebrate National Down Syndrome Awareness Month by attending the show and participating in the New York City Buddy Walk. Thousands are expected to participate in this event to promote acceptance and inclusion of all people with Down syndrome. The Times Square Video will begin at 10:15am and will be re-played at approximately10:35am.

For friends in the New York City area...if you have time, stop by Times Square and watch the video yourselves...and consider supporting the New York City Buddy Walk. We so wish we could be there!

Here's the winning shot of Lucas taken in Panama City Beach last summer...

Just Call Me "Fish"

2010-07-29T20:23:00.004-04:00

Lucas always has enjoyed the water...living in South Florida may do that to you. When we decided Tom would stay home this summer (working part-time on a consulting gig) to focus on providing Lucas with an unforgettable summer before his transition to PreK-3, we knew swimming would be just the ticket. After consulting with Tom's Dad and doing some research, we invested in a little above ground pool -- an Intex 10'x30". It was the best $99 we ever spent. Even if the thing collapsed tomorrow, Lucas has had non-stop fun getting all pruned up in the pool for hours a day. It's become his favorite after school ritual.

With temperatures topping 90 degrees here and comparable humidity, going to the park or trying to enjoy any other outdoor activity seems pointless. And even though the pool water is as warm as bath water, Lucas doesn't seem to mind. He's even learned some basic swimming moves, including holding his breath under water, kicking his feet, and floating on his back. Check out his "Coppertone" baby back...and yes, we slather him in sunscreen, but the kid's got a kicking tan (I wish I could say the same).

You're My Best Friend

2010-07-28T22:55:00.005-04:00

Lucas is definitely getting more into imaginative play. He enjoys playing with Buzz and Woody as well as his many farm and sea animals. However, it seems he's got two new best friends...Mickey and Frog. According to Lucas, they fight and makeup. He positions them by his side when we read books before bedtime so they all join in the story telling, and then he makes sure they lay down and are sleeping before Lucas is ready to say goodnight himself. Tonight, he dropped them both over his bedrail and I tucked them under his bed...before I knew it, Lucas had his hand up to block the sun from his eyes as he yelled out, "Mickey, Frog where are you?" He needs to reposition them at least a half dozen times before they go "to sleep" -- it drags out the bedtime ritual, but it's pretty cute. He was happy to pose with his besties.

New Pre-Schooler Pad

2010-07-26T21:48:00.006-04:00

Lucas graduated from his toddler bed last weekend...mostly because Tom got tired of attempting to fold his 6-foot frame into the tiny bed every night to tuck Lucas to sleep (on nights Lucas didn't wear us down and cuddle up on our bed). Lucas now has a "big boy" twin mattress as well as a bed, headboard, and dresser (used Pier 1 Kids furniture, thanks to Craigslist). Given Lucas' love for animals, the room has a jungle-inspired motif, with a little Buzz and Mickey to mix it up. He's got lots of books, stuffed animals, a bean bag, and lights (including a great Ikea find -- a hanging round lamp that projects moons, stars, and planets around the room). Lucas is loving his new room and is actually sleeping in it through the night so we've taken back our bed...Hallelujah! Here's the new room and bathroom.

New Beanie Do

2010-07-19T08:00:00.000-04:00

It was time to kiss Lucas' long locks goodbye and enjoy a fresher cut for the summer. He was so incredibly well behaved for his Titi (his aunt/my sister) the hairstylist. Whatya think?

Playground Coverage Continues!

2010-07-16T14:48:00.002-04:00

The Miami Herald also ran a lovely story about the playground. Look for Tom in photo 7.

We Built the Dream Playground!

2010-07-15T20:23:00.003-04:00

Better late than never...this has been a hectic week as I'm trying to get back to work full-time while I've been sick with a cold/flu. Anyway, Build Day was last Saturday and this is definitely a place where a picture says a thousand words. Here's a link to the story, video, and photos (look for Tom to the right of Image 5).

Dream Playground Come True

2010-07-06T23:21:00.008-04:00

This Saturday, Tom and I have volunteered to help build a new playground for Lucas' school -- the University of Miami Debbie School. The school serves both kids with and without disabilities, and has been a true blessing in our life so we're glad to give back...even though Lucas will only be able to enjoy it for a few weeks before he moves on to public school (sniff, sniff).

The playground is in need of an extreme makeover because it's not only old, but dangerous...it's mostly built of metal. The Knight Foundation and KaBOOM! have partnered with the Debbie School to make this dream playground possible -- the best part is the playground will be accessible to ALL kids, even those with physical disabilities. Check out the video from our local CBS (it's to the right of the story) and look for Lucas who's in the background and in a closeup -- he's wearing a green "Gap" shirt and a big smile.

I'll Be Wrapped Around Your Finger...

2010-07-06T16:17:00.002-04:00

...lyrics from one of my favorite Police songs and the first thing that came to my mind when this happened: Last night, Lucas was being a little punk (his father's term of endearment when Lucas is misbehaving) by battling us to get to bed -- unfortunately, that's becoming too frequent a problem, but that's not what this post is about, I digress. He ended up in our sprawling king-size bed, in his favorite position -- wedged between his parents. He loves to play with my hair when he's falling asleep or needing comfort so I pulled my hair down from the usual pony tail. As I sifted my fingers through my hair, my son looked at me (nearly nose-to-nose and no more than 3 inches apart) with his beautiful, big brown eyes and said "Mommy pretty" and I just freakin' melted! That kid slays me! And then I thought...I'll be wrapped around your finger until I take my last breath. And that's why I can't ever adequately articulate what it's like to be a parent because it's in the every day experiences of the mundane million simple "little things" that do everything from break your heart to make it soar.

Summer Has Begun

2010-07-02T20:41:00.006-04:00

Summer in South Florida often means rain and thunderstorms in the afternoons -- it's our rainy season. Heat + humidity + rain = yuck! Today, we had a particularly impressive storm roll through (our grass really needed it!) and decided Lucas might enjoy playing in the rain (while Mom watched from my chair). This summer, Daddy is taking Lucas to Merrie Christmas Park -- which is less than a block from our new home -- after school on most afternoons. Lucas is getting more daring and confident, stronger, and more able to climb and explore. He's also loving the monkey bars. His physical therapists will be so proud.

Make an on-line slideshow at www.OneTrueMedia.com

American Idol in Training

2010-06-28T13:29:00.008-04:00

Don't forget to turn up the volume.

Make an on-line slideshow at www.OneTrueMedia.com

The Whole Truth...

2010-06-15T15:56:00.008-04:00

And nothing but the truth.

At the insistence of family and friends, I'm coming clean about my recent "accident" which was not caused during a fantastic skiing vacation in Aspen as I'd reported earlier. I'm warning you...you're going to be sorry you asked "what happened?!" This is, after all, an embarrassing tale of an unfortunate incident.

In an attempt to dash out the front door and capture photos of my daughter Tayler's surprise expression when she saw her car covered in graduation well wishes, I twisted an ankle and ended up like a pretzel on the cold, hard concrete in front of my mother-in-law's house. A visit to the ER and two X-rays later, I was given the news: broken ankles. To boot, there was another casualty in the crash landing: my Canon digital camera.

The story is unexciting, sad, and even a little pathetic as the accident happened at the beginning of our 2nd day on vacation in Seattle, AND I had to attend Tayler's graduation (the whole reason for our trip) in a wheelchair, a walking boot, a splint, and oversize pants...instead of my cute dress and peep-toe sandals. A shout out to my sister-in-law, Robin, who at least dressed up my chariot with a "Yield to the Princess" pink, glittery bumper sticker.

But every cloud has a silver lining...I enjoyed the buzz of Vicodin, Washington microbrews (I'm sure not driving anywhere soon!), and the company of loving family and friends caring for me. At the end of the day, if time and money can fix it, it's all good, right?

Back at home, my amazing colleagues hooked me up with UM's chief of orthopedic trauma who decided against surgery, following an MRI of the right ankle. He's going to leave the left ankle to heal on its own (the floating bone fragment seems nothing to worry about, so I won't). I'm off my feet and will be good as new in 6 to 12 weeks. For now, I'm spending many hours on the recliner getting acquainted with Showtime's Nurse Jackie and HBO's True Blood.

See, I told you my fib was the way to go...what a lame way to break anything, let alone something that's left me mostly dependent on others for several weeks during the hot, humid Miami summer!

However, I now know this much is true: I know who I can count on, including my devoted husband. People want to rise to the occasion, so I let them. I can follow, instead of lead. The house won't fall apart because I can't keep up with it. My son can roll with the punches and won't be forever scarred by watching me be "less than" my own version of "perfect." My patience is growing thick. Work can wait.

And this is how I roll.

The Graduates

2010-06-13T18:33:00.014-04:00

Where does the time go? Although it's not ticking at an accelerated pace, it sure feels that way as we get older. What gives? There are few things more sobering related to the passing of time than watching children grow.

I first met my daughter, Tayler, when she was 10 years old -- we were still about the same height then...at nearly 18, she towers over me at 5"9. It has been a pleasure to watch her blossom into such a beautiful, loving and dedicated young woman, now a high school graduate and college-bound in the fall.

She was lovely and beaming at her graduation in Seattle last week, and we were thrilled to share this special occasion with her and her Aunt Robin and Grandma Gwen (Tom's sister and Mom, pictured below).

We made it back to Miami in time for Lucas' early education graduation on June 11th. He's off to preK-3 in the fall. He was adorable in his cap and gown, and would have made it across the "stage" had he not spotted his parents in the front row -- watch the short video below.

One chapter ends and another begins for our graduates...making their parents proud.

Stepping Stones: Lucas at 3 1/2 Years Old

2010-06-01T06:30:00.000-04:00

Since my last report at 36 months (3 years old), Lucas has made steady progress. He knows all his upper case letters and even some of the lower case, which we are continuing to work on. He knows that "T" is for "Tom" and "A" for "apple" as well as many other letters, and he can sing the alphabet song (albeit slowly), including signing many of the letters (which he learned from Rachel of Signing Times). We've also been working on his sight reading (although not as much in the last couple of months) and he knows "cat" and "dog" and "pig" and about another dozen words.

He can now say "Lucas" as opposed to "U-cas" -- one of the greatest improvement with his speech is his articulation. He use to say "awr" for "water" and now he says the word clearly. That's true for many other words too. He's also stepping up his 2- and 3-word phrases and beginning to use "and" and "that" and other parts of sentences. His speech therapist expects him to begin using short sentences very soon. The other thing that is happening is that Lucas is able to start telling us what happened so when we ask questions, he puts together answers with his limited speech and/or answers "yes/no" questions with fairly good accuracy. We found this out when he bit another boy's ear a couple of months ago and told us "Carter's ear" and when we asked him if he bit Carter, he fessed up with a "yeah!" Not my proudest moment for his behavior, but was sure proud he was able to communicate what had happened. He knows his friends' names, his teachers, and his family, and calls everyone by their names or his nickname for them. When you ask "What is your name? or "How old are you?" he can answer both questions.

Lucas is enjoying engaging in play with friends as well as in dramatic play. He likes to play with his animals and often wants to bring them with him. He is getting more independent, although he's also become a better listener (thank God!). He's following directions with more accuracy, including 3 and 4-step directions. We moved a few weeks ago, and Lucas is now waking up and going to his playroom and playing alone for a few minutes before yelling "Daddy" and "Mom" for us to join him.

Lucas is counting to 10 -- and now knows the concept of "one" so he'll give you "one" block (which is one of those pesky test questions). And we're starting to count things, such as toes! So, he's beginning to understand the concept of counting and not just memorizing the numbers.

Hands down, one of Lucas' biggest accomplishments since my last entry is his potty training. We put him in undies on Black Friday (the day after Thanksgiving) and haven't looked back. Sure he has accidents, but they are becoming less frequent, especially number 2. He's had not more than a handful of accidents at school in the last few months...he's way more lax at home. He's starting to tell us if he has to go, again, especially number 2.

In the fine motor skills area, we're working on getting him to cut with scissors (although he doesn't like cutting) as well as unscrew jar lids. His OT (occupational therapist) has had us working on strengthening his trunk which will help with everything, especially once he starts handwriting which tends to be a big challenge of kids with DS. Lucas eats with both a spoon and fork, although he prefers a fork and continues to be really messy. He's getting much better about coloring/writing on paper (not walls), although he needs to be watched.

As for gross motor skills, Lucas has become a climbing machine. He loves the playground and has become very independent on the equipment. He goes up the ladder to slide down the biggest slide, without fear. He's still working on riding a tricycle, and although he's mastered the activity, we are working on building his leg muscles so he can go farther distances as well as on different terrain. He's still working on jumping in place, although he's enjoying jumping on a trampoline...his PT (physical therapist) explained jumping on a trampoline requires a different skill...who knew?

The one thing I have mixed feelings about is how much Lucas has taken to the TV. He LOVES "Madagascar" and "Madagascar 2" -- he tells you whether he wants to watch "Lion 1" or "Lion 2" -- he knows the DVDs so well he's starting to play along some of his favorite scenes, including the dancing. He loves DVD concerts/music by "Raffi" and "the Bee" (Laurie Berkner Band). He also enjoys "Buzz and Woody" of "Toy Story" and continues to be fond of "Signing Times" too (at least that's educational). Lucas was a huge fan of "American Idol" this season or as he calls it "singing". Lucas loves books and reading, although he is now equating books with sleep at night, so he sometimes fights it. His favorite books are "Move Over Rover" and "The Little Engine that Could" although he still loves "Kiss Goodnight."

We now are preparing for Lucas to transition from the Debbie School's early intervention program into Pre-K3. We will face his first IEP (individualized education plan) which is a yearly meeting of his education team -- including a placement specialist and teacher from Miami-Dade county schools, his teacher, speech therapist, and case worker at the Debbie School -- to discuss and put together his developmental goals and arrange his placement for the school year. I'm nervous because Lucas is doing so well, I know he will lose some of his services as a result (he now gets 2x week speech therapy, 1x week occupational therapy and physical therapy). I'm not sure what the county will be willing to pick up, so we need to know our rights and be well prepared for the meeting. Say a little prayer for us and stay tuned for the outcome.

I'm BAAACCCCKKKKKKK....

2010-05-20T10:35:00.006-04:00

Now that we've moved, I'm starting to see the light at the end of the tunnel, and hope to be back to blogging more...I miss it. Anyway...

I watched a segment last night of ABC's "What Would You Do?" and have lifted most of the background from Patricia Bauer's blog, followed by my reaction:

On a segment of ABC’s “What Would You Do?” that aired yesterday, customers in a Brooklyn grocery store were trapped in a checkout line behind rude shoppers who berated a bagger with Down syndrome. The customers didn’t know that the clerk and the rude shoppers were all actors. Hidden cameras recorded everyone’s reactions to abusive language that the show described as happening “all too often” in real life.

“You’re absolutely retarded, dude! You have to go faster,” an actress shouted.

While some customers ignored the abuse, others spoke up in defense of the clerk, played by actor Josh Eber. “He’s a person, the same as you and I, with feelings,” said a woman identified as “Karen”, a teacher who has taught children with disabilities. “Everybody deserves an education. Everybody deserves a job, and everybody deserves a chance in this life. And you should be ashamed of yourself.”

Madeleine Will of the National Down Syndrome Society underscored the hurtfulness of insults like the word “retard.” She called on the public to speak up against verbal abuse.

“When we’re silent, our silence condones the language,” she said. “It’s important to say, again and again, this is wrong, this is not fair, this is not how we treat other people.”

My reaction: I was inspired to watch the piece because I must have received half a dozen communications about it from friends and others within the Down syndrome community...I have seen these special reports before and like seeing how people react in difficult situations....it always gives me something to think about, putting myself in their shoes. This time, though, it was different. Half way through the taunts and the insults, I could no longer hold back the tears and started sobbing. Although I knew it was a setup, the situation is all too real; and has been experienced by countless people with disabilities; and one day, Lucas too will know what that's like. And I can't change that inevitability because it's the world we live in.

I started thinking about the first time Lucas hears someone call him a "retard" or when other kids make fun of him for not keeping up or for just being a little "different"...I thought about having to face the pain in his eyes and I became determined, more than ever, to make sure we give him the tools to defend himself, because we won't always be there to protect him. For as much as I want to shelter him from all that's bad and wrong in this world, I know we can't and he will need to learn these heartbreaking, difficult lessons. When I look at him, yes, I see his disability, but more than anything, I see my son who I love more than I ever thought possible. How I wish the rude, crude, and insensitive could walk a day in my shoes...this perspective is priceless for finding tolerance, understanding, compassion, and love far beyond what I ever thought possible before I became Lucas' mom. And although at times I still shake my fist at God because this journey is not always easy, I am a better person and mother because of Lucas, and I wouldn't change him or my life for anything.

Happy Anniversary to Us

2010-04-06T17:45:00.000-04:00

Easter Sunday also marked our 6th wedding anniversary. Tom took me for a yummy dinner out at Nobu at the Shore Club on South Beach Saturday night where we feasted on sushi (Tom) and 35-year-old super smooth and outrageously amazing sake (Sandy). At brunch on Sunday, Tom surprised me with cupcakes...it was a good start to a sweet year!

Happy Easter

2010-04-04T21:38:00.001-04:00

Lucas started his Easter at school when they made floppy ears and played bunnies, followed by an egg hunt. Lucas in his giving nature, collected about 15 eggs, many of which he put into his friend's basket. Below he's pictured with one of his best friends (and crush), Cecilia.

Easter weekend got started at an egg hunt sponsored by the Gold Goast Down Syndrome Association of Broward at Tree Top Park. It was a lovely day filled with face painting, egg hunt, pizza (Lucas' new favorite food), a pony ride, and petting zoo. His big sister tagged along and nearly had as much fun watching Lucas' antics. He had a blast!

Easter Sunday included a leisurely brunch at Tom's new restaurant, Trina, in the Atlantic Hotel. I was joined by my sister, my niece, my BFF Liz, Tayler, Lucas, and my dad and his girlfriend, Beverly. While Tom ran around the kitchen and dining room ensuring the lovely brunch buffet was well stocked and everyone was enjoying themselves, we sipped on bloody marys and mimosas and indulged in the smorgasbord of seafood, including a ridiculous 8 lb. king crab that served as the center piece. Tom outdid himself. The weather was fantastic and the company was better. Lucas was sporting perhaps the cutest Easter outfit ever. Whata think?

Hope you had a great Easter too!

March Madness

2010-03-28T14:54:00.010-04:00

March madness has little to do with basketball, and more to do with my current state of mind. Lots of activity. I'm hopeful things will settle down this fall when we sell the house and relocate based on work and school options for Lucas -- who is graduating from the Debbie School on June 11th. My baby is not a baby anymore, and it makes me a little sad, a little happy, but mostly proud of the little man he's becoming.

March was filled with ups and downs. On the 5th we lost my dear Tio Pepe who fought a courageous battle with cancer -- I was fortunate to spend some quality time with the family in the last few months of his life as I helped in whatever way I could while he received treatment at UM's Sylvester (the cancer center where I work). The photo below is of Lucas' Godfather, Armando (who is one of my best friends and like a brother to me), and Tio Pepe during a joyful Christmas Eve 2009. We love and miss you, Pepe.

After his 5-month work hiatus, on the 14th, Tom started his new job as executive chef of The Atlantic Hotel. So far, so good.

The 16th marked my 43rd birthday...am I officially middle aged? Nah! I started the day with a mani-pedi and lunch at Smith & Wollensky's (courtesy of my sister); at night, my mother-in-law, Gwen, flew in from the Seattle area and treated us to a lovely dinner at 15th Street Fisheries in the Ft. Lauderdale Marina -- I had my favorite, surf & turf! Lucas also fed the hungry tarpon and mahi-mahi which was a big treat and kept saying "more!" During Mom's visit we headed to Lion Country Safari for a day -- Lucas loved it, especially his camel ride. We also spent a little time on the beach, including an overnight stay at Tom's hotel. Not too shabby. Some photos are below...more to come.

I promise to be more active on my blog...it's been too long and let's face it, I'm not very good at cramming everything into a single post.

Spread the Word to End the Word

2010-03-03T13:12:00.006-05:00

From an email I received today from Best Buddies:

Today Best Buddies, Special Olympics and supporters from across the world will unite in support of the Spread the Word to End the Word campaign and encourage people to eliminate their use of the R-word in everyday speech.

Over the past few weeks our campaign to Spread the Word to End the Word has received significant momentum. We have received pledges from around the world, and last week alone received close to 10,000 pledges from people to end the R-word.

We cannot let this wave of momentum die; we need all of you to help us keep it going by:

1. Taking the pledge at www.r-word.org
2. Posting on Facebook:
"I took the pledge to end the R-word, have you? www.r-word.org."
3. Forwarding this message to your contacts and tell them why you want to
end the R-word and ask them to take the pledge.

The Hot Seat

2010-02-26T12:56:00.005-05:00

Lucas had his first dentist appointment today. Tom prepped him for it all week and Lucas was actually excited about it this morning...he was showing off his teeth, his brushing skills, and opening his mouth when we told him "say ahhhh..." Little did he know what lay ahead.

According to Tom, Lucas entered the pediatric dentists' office with a lot of bounce in his step. Everything was cool until they asked him to lay back in the chair -- the picture below is the only one Tom managed to snap before he was asked to help hold Lucas down...poor beanie!

The good news is he doesn't have any cavities and his teeth look good. Kids with Down syndrome don't tend to have cavities, but are more prone to gum disease so we need to be diligent about cleanings. He will likely need to have some teeth pulled when his permanent teeth come in because he doesn't have much space up top -- I had four teeth pulled when I was a teenager so I can relate -- no fun, but it all worked out.

Anyway, seems Lucas got carried away with his clean, sparkly teeth and decided to use them on one of his schoolmates -- he left teeth mark on the poor kid's ear...the horror! Tom made Lucas apologize to Carter. When I got home and asked him what happened in school with Carter, he grabbed his ear and said "ear" and when I asked him if he bit Carter and then apologized, he answered "yes" to both. Tom was very stern with him and he's never demonstrated this type of behavior before so I certainly hope this is an isolated incident.

Enchanted Forest

2010-02-25T12:39:00.008-05:00

Recent trip to the "Enchanted Forest" park not far from our neighborhood yielded pony rides (not as big and fancy a place as Lucas' usual hangout, but WAY closer), a playground, and some communing with nature. Here we are with this big ole banyon tree, minutes before we got kicked out because of Roscoe (apparently most Miami-Dade parks don't allow dogs).

Lucas enjoyed his first experience at Steak & Shake...where he instantly became a fan of the strawberry smoothy.

The Bigotry Behind the Word "Retard"

2010-02-15T09:29:00.007-05:00

Tim Shriver (Chairman of Special Olympics) wrote an op-ed in today's Washington Post The bigotry behind the word "retard" -- countering this piece The case against banning the word "retard". Needless to say, the controversy over the use of the word is heated -- those who view the disability community's push for an end to the use of the word as limitations on our "freedom of speech" or even "censorship" vs. our community's strident efforts to strike the word's use because it's hurtful, offensive, and is building a dismissive attitude against those with intellectual disabilities.

On a personal note, I feel the term "mentally retarded" or any form of it, belongs to US as so eloquently pointed out by Diane Grover of the [Toronto] Canada Free Press in her essay It's personal; Grover is the mother of a daughter with Down syndrome. As painful as it sometimes is, it is something WE live with because although it does not define Lucas, it is a part of his genetic makeup. In the same way only black people are entitled (right or wrong) to use the n-word...it belongs to THEM and out of respect, those of us with no experience for the prejudice and pain it causes have no right to use it.

Here are a few excerpts from Shriver's piece:

Seventy to 90 percent of people with intellectual disabilities in the United States are estimated to be unemployed.
Special Olympics studies reveal that more than 60 percent of Americans don't believe that children with intellectual disabilities should be educated in their child's school.
Investigations have revealed people with intellectual disabilities as the victims of abuse, indifference and negligent death.

But for our part, we are trying to awaken the world to the need for a new civil rights movement -- of the heart. We seek to educate people that a crushing prejudice against people with intellectual disabilities is rampant -- a prejudice that assumes that people with significant learning challenges are stupid or hapless or somehow just not worth much. They're, um, "retarded." And that attitude is not funny or nuanced or satirical. It's horrific.

In the end, all I want is for Lucas to have the same opportunities we are all entitled to as citizens of a free world. And, for that, I will fight the stigma, the hatred, the stereotypes that see him and others like him as a label, and I will speak up against the use of that ugly, ugly word.

More Pony, Please

2010-02-07T17:33:00.004-05:00

Tom decided I had to see for myself Lucas' new obsession with horse riding. So, on this beautiful, sunny, cool South Florida winter day, we headed up to north Ft. Lauderdale to Tradewinds Park. Lucas enjoyed the playground before making a beeline for the ponies. Today, he was eager to get the helmet on as he knew it was bringing him one step closer to riding. He rode sweet Charlie for three trips around the stable. I was having technical difficulties with last weekend's video of Lucas' ride so if you didn't catch it, scroll down. We then headed to the mammoth Bass Pro Shop to check out the huge fish. We're now getting ready for the Super Bowl which is paralyzing Miami with tourists everywhere.

Getaway

2010-02-06T17:34:00.005-05:00

Tom really has been enjoying some bonding time with Lucas lately. The silver lining in Tom's near four-month unemployment is all the time he's been able to spend with Lucas. They've been going out for day-trips the last couple of weeks. Today, they went to Morikami Museum and Garden featuring lots of bonsais, koi fish, flowers, and sculptures -- Lucas had a great time. They finished the day off with a pony ride -- Lucas' newest favorite thing to do.

Remembering Mom

2010-02-06T07:38:00.005-05:00

Yesterday, February 5, was the fourth anniversary of my Mom's passing. In some ways it feels like yesterday and in others, like a lifetime. In the last few years of her life, she wasn't able to get around much, but she still enjoyed a good pizza. So to honor her, we had pizza for dinner.

Afterwards, we met my Dad at our favorite ice cream place growing up, Carvel in Hialeah on 49th street and 4th avenue -- the place has been there for about 50 years. My Dad and Lucas enjoyed their first Carvel soft-serve together. It was the perfect way to remember Mom.

Rahm Emanuel and the "R-Word"

2010-02-04T09:23:00.009-05:00

This morning, the Today Show reported that last fall, Rahm Emanuel (White House Chief of Staff) used the term "f*cking retards" in a rage during an argument among Democrats. As a result, Emanuel is meeting with Tim Shriver, chairman of Special Olympics who I hope kicks his ass (wishful thinking). Do I think what he did is wrong? Absolutely. Do I think he'll do it again? Absolutely.

The sad truth is that our society has made the "r-word" common place in every day language. We -- parents, educators, and all those who care about someone with a cognitive disability -- are standing against the use of this word -- "mental retardation" is being phased out as a medical term, replaced with cognitive disability or intellectual disability. I correct people who use the "r-word" all the time, and honestly, I usually have someone thank me for pointing it out. The word is thrown around so mindlessly that they don't even realize they're using it or that it could possibly be hurtful or offensive. I feel I'm changing the world...one person at a time.

But, I digress...when Andrea Mitchell of the Today Show reported the news, she mentioned that Sarah Palin had called for Emanuel's dismissal (a little overboard, I think), but in talking about Palin, Andrea mentioned her "Down syndrome baby" and that's what really got me going so I wrote the email below to the Today Show. I'll let you know if I ever hear back. At least I said my peace. Changing the world...one news show at a time :)

I am and have been an avid viewer of the Today Show for many years and I caught this story this morning. I wanted to inform your writers about the importance of using "people first language" -- you don't call someone a "Down syndrome baby" but instead a "baby with Down syndrome." It's about putting the person first because the disability shouldn't define the person, ever.

Here's what the Special Olympics has to say about people first language: http://www.gpadaptive.org/Special%20O%20Person-First%20Language.pdf

While you're at it, please strike the use of "victim" or "suffers from" or "is afflicted with" when referring to people with disabilities -- they're just living their lives, just like you and me.

As the mother of a child with Down syndrome, I find it hurtful and offense, and wish a national program with millions of viewers would get things straight, as you're setting an example for everyone listening.

I'm off my soap box.

Another Excellent Adventure

2010-01-30T16:47:00.007-05:00

Lucas and Daddy enjoyed a day of bonding with a trip to Butterfly World and pony rides next door. Lucas loves animals, but horses are among his favorite. For the first time, he got a chance today to ride a pony -- he enjoyed it so much, he asked for a second ride. According to Daddy (I wasn't present), he LOVED the butterflies and the ponies, but hated the helmet. Check out photos and short video.

Thyroid Update: Holding Pattern

2010-01-29T14:24:00.005-05:00

Based on results from Lucas' most recent bloodwork, his endocrinologist told us that as of now Lucas does not have autoimmune thyroid disease (hypothyroidism) -- he tested negative for antibodies. However, his TSH level is higher than it was last time (now at 8.89) although his T3 (143) and T4 (1.2) levels are well within normal range. The doctor said the TSH level sometimes fluctuates in people with Down syndrome and they don't require treatment. In fact, sometimes the issue even resolves on its own.

Lucas will be rechecked in three months and if he continues to have elevated TSH level, then the endocrinologist will order a thyroid nuclear scan to investigate further. The doctor said he generally will treat anyone with a TSH level above 10; he added that people with Down syndrome most often present with thyroid dysfunction between 5-6 years old or during adolescence. Given how important the thyroid is to so many aspects of development, we will keep a close eye on it and treat Lucas if/when the need arises.

Cheese Please!

2010-01-28T19:48:00.007-05:00

In what's quickly becoming a favorite activity, Tom and Lucas made some home-made pizza with a yummy sun-dried tomato, pesto dough. Watch the boys putting the finishing touches on the pizza before it goes in the oven.

GOOOALLLLLL!

2010-01-23T16:51:00.007-05:00

Lucas was invited by our friends to join a soccer clinic sponsored by the Down Syndrome Association of Miami for kids 3-7 years old -- Lucas was the youngest of the bunch. Tom, who is a soccer enthusiast (which is more than I can say for myself), really worked up a sweat helping Lucas run a lap, kick balls into the net/goal, and do some warm up and cool down exercises. Lucas seemed to enjoy himself, even if he's still a little too young to fully participate. It's another form of physical therapy of sorts, and getting out and running around is never a bad thing. For the record, it was 81 degrees...not too bad because there was a light breeze...that's winter in Miami for ya!

Thyroid Woes

2010-01-12T20:55:00.004-05:00

Around the holidays, Lucas went in for his three year check-up where blood work turned up an elevated TSH (thyroid stimulating hormone which controls thyroid function), which may be a warning sign of impending hypothyroidism (an auto-immune disease resulting in an underactive thyroid gland). They also measured T3 (active hormone) and T4 (thyroxine) which both came back within normal limits. He was referred to an endocrinologist who we went to see today. The doctor is now running further tests to check for antibodies ; the presence of antibodies may indicate hypothyroidism.

Hypothyroidism is common in people with Down syndrome. In fact, our friends' daughter, Krysta (who is 5), recently went to see the same endocrinologist because she also had an elevated TSH level.

The thyroid regulates growth and development as well as metabolism so we need to keep a very close eye on this potential issue. Lucas is not displaying any of the symptoms of an under-active thyroid. For now, Lucas continues to make good progress developmentally and is growing between the 25-50 percentiles with his weight at about the 50th percentile on the typically developing growth chart (kids with Down syndrome tend to be smaller and often are plotted on a different growth chart). We want to keep it that way.

If he needs treatment, it will be in the form of a replacement of thyroid hormone and the dose will need to be monitored by sequential blood tests to see how the thyroid responds. Although treatment is needed for life, at least it's something that can be treated effectively.

I'll post results when I have them.

Happy New Year!

2010-01-06T21:55:00.006-05:00

New Year's Eve was a return to Casa del Amo for yet another memorable gathering, where Lucas was burning up the dance floor grooving to the incomparable Queen of Salsa, Celia Cruz (video to come). Below are photos of cutie Melanie in disguise, me and Rob who was visiting from Philly, Lucas with Adita and Rob, and the Rhyneers on New Year's Eve. The last couple of photos were taken by Rob of a pensive Lucas at our friend's Liz's house who hosted an open house on New Year's Day.

The new year is off to a good start...Tom got a job offer on the 1st and he's now working at El Scorpion, a Mexican restaurant and tequila bar on South Beach which will open in a couple of weeks. As with every opening, Tom is working long days/nights, but I'm hopeful he'll (we'll) have a semblance of a life when the dust settles in the next month or so...ah, the joys of being married to a chef!

I love the ring of "2010" and I'm more hopeful then I've been in a long time that things will start going our way -- not just for us personally, but for the country and the world as a whole. We will see what the year ushers in. May the new year bring us all much health, love, happiness, and togetherness.

Merry Christmas!

2009-12-25T20:39:00.005-05:00

Christmas celebration started at the lovely Casa del Amo, home of Tio Pepe and Tia Haydee. Tom helped Chef Jorge with the traditional roasted pig in "caja china" -- a photo as well as video are below. Lucas loved the pork and even the chicharron (AKA pig skin -- must be channeling my Mom since that was her favorite! I'm not a fan.). We left after a late dinner thinking Lucas was tired, but after our 30+ minute drive, Lucas was all wound up and ready for some late night caroling -- he really enjoyed tracking Santa too and watching the videos of where he'd been (courtesy of Google Earth -- very cool!).

By morning, Santa made his way to our home and Lucas was overwhelmed with all the gifts. There's a little video of him waking up to the tree -- he's so his father's son...as you'll see, he really needs his cup of coffee to get going in the morning. My Dad woke us up at 8 AM and our glorious day began; I made cinnamon rolls and poured mimosas...my sister and niece brought more GeoTrax toys so Lucas has his own little GeoTrax universe.

Hope your Christmas was merry and bright!

Ready for Christmas

2009-12-24T09:55:00.009-05:00

In preparation for Christmas, Lucas made reindeer antlers at school, we decorated the Christmas tree (Lucas loved the lights and helping to hang ornaments including the star), and baked Christmas cookies (don't miss the look of glee on Lucas' face!).

We also visited a farm (Lucas loves animals so he's been asking to go back ever since to see the horses and the goats), and Lucas discovered the wonders of the bubble bath!

As we've done in years past for "Noche Buena", tonight, we head to Lucas' godfather's family home to celebrate the holiday Cuban style! More on that later...

12 Days of Giving: Day 12

2009-12-19T21:48:00.006-05:00

Today's giving included donating new toys given to Lucas by his school since there are other children in greater need -- we gave the toys to Toys for Tots at our neighborhood grocery, Publix. We also made our way tonight to the Enchanted Place, a full block of homes strewn with Christmas lights and as part of the occasion, made a donation to Care Resource, a service organization for Floridians with HIV/AIDS.

Now that I've fulfilled my commitment to the "12 Days of Giving" although I won't necessarily report on my daily giving, I can promise my eyes have opened up to all the giving taking place all around me and the many opportunities available to get involved, give a little, help a lot.

12 Days of Giving: Day 11

2009-12-17T21:02:00.009-05:00

Today's giving was part of my job -- as the marketing department for the University of Miami's cancer center, we helped coordinate a holiday lunch for more than 1,000 employees. By the end, my feet were throbbing (high heels were NOT a good call), my face partially paralyzed from smiling, and I was just worn out. What was most important and gratifying was that after a particularly trying financial year when morale has not been great, it was good to see employees smiling, enjoying themselves, and feeling acknowledged.

12 Days of Giving: Days 7-10

2009-12-16T09:05:00.007-05:00

I was in Nashville until Monday and have been trying to come up for air since. I'll keep my giving report brief: I gave of my time by helping make my best friend's birthday party truly fabulous (running errands, helping setup, and serving as photographer) -- it was a beautiful night thanks to her husband and parents. We also gave in the traditional holiday way by purchasing gifts to acknowledge the hard work and dedication of Lucas' teachers and therapists. The best part of the latter was using my $50 American Express "holiday bonus" toward gifts for these amazing women -- I know Lucas wouldn't be where he is now if it weren't for them.

What's been humbling is to be on the receiving end of the best kind of gifts -- people opening their lives up to us, especially while in Nashville (they don't call it the friendliest city in America for nothin'). I've been genuinely touched by the spirit of the holidays, more so this year than in recent ones. I'd like to think just being more conscious of all the giving taking place every day has made my daily life experience that much more meaningful this season.

12 Days of Giving: Day 6

2009-12-12T09:09:00.014-05:00

I'm in Nashville visiting my best friend and her family; celebrating her 40th with a party tonight. I'm welcoming a 50 degree change in temperature (those living through winter hate me for speaking such blasphemy, but seriously, heat and humidity are over-rated, especially this time of year...not festive).

Back to the giving...before I left Miami, I made a pit stop at our ghetto grocery store and was approached by two Black teenage girls who were raising money for college -- I thumbed through their official-looking stuff, asked them what they wanted to be when they grow up (doctor and lawyer), and they seemed serious enough. I gave them $5 to split and walked away hoping I was investing in their dreams and their futures (and not in drugs or booze). Living in an urban area -- not to mention being a former New Yorker and getting scammed one too many times -- that's where my mind usually goes in these situations, but I gave in the spirit of the holidays and my "12 Days of Giving" commitment...and it felt good!

12 Days of Giving: Day 5

2009-12-10T15:49:00.005-05:00

There was a Scholastic Book Fair at Lucas' school so giving was effortless (even if it cost me $34). I love supporting Scholastic and encouraging reading for Lucas and his peers. I picked up a few books for Lucas as well as one for Lucas' teacher to enjoy with his class.

I also rounded up my gently-read Entertainment Weekly and Parenting magazines (I think I even had a People) for the magazine drive at the cancer center where I work. Easypeasy.

12 Days of Giving: Day 4

2009-12-09T21:35:00.008-05:00

I'm now four days (or a third of the way) into my "12 Days of Giving" and it has felt different to be so aware of our giving. It's been eye opening because I do more giving than I imagined, in mostly small ways that add up...although we all want to affect real change in the world, small acts of kindness and generosity by many can lead to that change...and giving should start at home.

Which brings me to today's giving which was all about our family. We made a commitment to formally adopt our "foster" kitty Maxine who we brought home with our six-toed wonder, Roxie...we knew all along we weren't going to be able to separate the two, let alone send Maxie back to PetSmart. We are giving this formerly homeless, spunky, loving (albeit stinky) kitty a loving home.

Then tonight, my chef-husband gave of his talent by patiently teaching Lucas how to make PIZZA! It was a simple, but memorable family night and both Tom and Lucas were having a blast...my seat from the counter stool with wine glass in hand made me a happy spectator.

12 Days of Giving: Day 3

2009-12-08T18:50:00.012-05:00

Today's giving was simple...the shirt off our back (Tom's actually). Our friend Alex borrowed Tom's t-shirt "When it rains, we pour" (so clever and so Seattle--purchased at Pike Place Market); but Alex brought it back and said he loved it, so we decided he needed to keep it. A great t-shirt needs good love.

In other giving news, we went through Lucas' drawers and gave up all his T2/24 month clothes and his super cool sneakers (including the much-raved about orange Adidas pair) to Ethan (Lucas' speech therapist's son). Lucas has graduated to T3 pants and T3/T4 shirts...he's growing like a little weed.

12 Days of Giving: Day 2

2009-12-07T15:32:00.009-05:00

Today's giving was two-fold. The first is a tradition: donating gifts to children or sponsoring a family/child, and this year was no different. Tom brought two unwrapped toys for the "Toys for Tots" program at Toys 'R Us.

My second gift was much more personally meaningful and satisfying. A family friend, who I consider an uncle, has cancer, and because I work at UM's Sylvester cancer center, he is getting treated there after a stay at MD Anderson in Houston. I spent all morning with him and his wife in an attempt to help manage his care with what I know from the inside -- it's been a juggling act and emotionally draining because I care so much for them. They have shown us great kindness, love, and support and it is a privilege for me to help shoulder this burden and to assist in whatever way I can during this trying time for the family.

12 Days of Giving: Day 1

2009-12-06T21:24:00.012-05:00

I'm taking Bethany (of Life with Bubba, Chicky and Nika) up on her challenge to the blogging community...12 days of giving! Even though I'm behind (it's suppose to be for the first 12 days of December), I am catching up. It's not just about giving, but inspiring others to give too. Just today, in lieu of getting a few bucks for a Graco system (stroller and infant car seat) on Craigslist, we washed and cleaned it and gave it to our next door neighbor who has a huge family, knowing it would come in handy for one of his kids or nieces/nephews. It always feels good to give.

Even during this financially challenging time for us with Tom still out of work, there are so many others who are in more need than we are. Not to mention, sometimes, all someone needs is an ear or a shoulder to lean on.

Some people give time, some money, some their skills and connections, some literally give their life's blood. But everyone has something to give. ~ Barbara Bush

Thanks, Bethany, for this wake up call during the holidays...I look forward to chronicling my giving here and to being inspired by you and others who are doing the same.

Scooby Doo

2009-12-05T21:33:00.006-05:00

Lucas as a penguin (towel), and later, at a birthday party for his friends, the twins, Ana and Nina. I was mortified when Lucas beat Nina to the punch and blew the candle out on her little cake after "Happy Birthday." He's so three! Great fall weather and cute Scooby Doo themed party...face paining (Lucas preferred it on his arm), balloon animals, pinata (not a favorite), cake, and lots of running around the playground.

Drumroll Please...

2009-11-30T15:17:00.007-05:00

We have a potty trained superstar!

On Black Friday, we finally bit the bullet and started the 3-day potty training boot camp, e.g., Lucas in nothing but a t-shirt and undies. We were nervous and scared in this uncharted territory, having never potty trained anyone before, especially a child with a disability. We really didn't know what to expect because although Lucas has been going consistently on the potty at school for three weeks, his Pull-ups were usually wet between trips. We didn't know how he'd verbalize/communicate his need to go; but low and behold, by the end of the third night, he was saying "potty" as clear as a bell, and every time we got to the bathroom, he peed...hot damn hallelujah!

After approximately 45 trips to the bathroom (I kept record), several loads of laundry, and countless hours of Magadascar 2, he's completely out of Pull-ups. We were nervous about his first day at school in big-boy underpants, but he didn't have a single accident -- he stayed dry this afternoon for about four hours. I've been running around telling everyone who will listen about this major milestone...we are SO proud!

What this exercise has taught me more than anything is DO NOT UNDERESTIMATE THIS CHILD! As has become the norm with Lucas, we may facilitate the situation, but he sets the pace and leads the way -- teaching us barriers are meant to be broken.

Lucas is using a padded seat to go on the toilet, but he's accumulating trophies (stickers) on the little one. See...

Giving Thanks

2009-11-27T18:07:00.010-05:00

This has been a financially challenging year for the Rhyneer family -- our house is under contract for a short sale (originally purchased in 2006 when I was 6 months pregnant for $417K and now selling for the bargain price of $170K -- we bought our first home in one of the hardest hit real estate markets), and Tom's employment has been sketchy and he's been unemployed for nearly two months now which has further stressed our financial situation. However, we have much to be grateful for...we have our health -- and Lucas didn't need open heart surgery (yeah!) -- I have a steady (if stressful) job, Lucas is growing and thriving, Tayler is graduating high school and soon on her way to college, and we have each other and so many wonderful, loving family and friends both near and far. As a matter of fact, our dear friend Mike sent us a Thanksgiving card that puts it best: "Treasure the love you receive above all. It will survive long after your gold and good health have vanished" (OG Mandino).

For Thanksgiving, we enjoyed the company of one of my dearest friends, Armando (Lucas' godfather) and his family, who are like my own. Huge props to Tom who saved my turkey feast...when I was crushed because there was no stuffing on the menu (what is Thanksgiving without stuffing?!?!), he made stuffing out of Cuban bread and ingredients available at Pepe and Haydee's house...it was AWESOME! Here is Lucas helping Tom make his amazing sweet potato casserole, Lucas with Mandy, and Mandy and Jorge (who made the yummy fried turkey). The weather was cool and just lovely. I hope you had a wonderful Thanksgiving yourselves and have as much to be thankful for as well!

Tell it Like it is...

2009-11-24T13:27:00.022-05:00

So much about being Lucas' mom has opened my life up to circumstances that have fundamentally shaped who I am because he has Down syndrome, and I mean that in a good way -- although there are times when I still struggle with some of my feelings, those are few and far between, really. Every day, my heart swells with love, pride, and admiration for my son who is the center of my world.

In my previous post, I mentioned I'd encountered some of the most amazing people along this journey, many of whom I haven't had the chance to meet in person, but who have had a tremendous impact on me as a parent and a person. That leads me to this post by Lisa of Finnian's Journey...an open letter to new parents of a baby with Down syndrome.

Although I agree with just about every word Lisa says, one statement in particular struck me..."There was a time when the prospect of living life with a child with Down syndrome was one of the worst things I could imagine. Now, the worst thing I can think of is to not have my son."

When Lucas was born and we were told he had Down syndrome, I was so lost and in too much pain to know where to turn or even what I really needed...I wish I'd come across this letter. As the clouds started lifting, I found my way to moms who were willing to reassure me "it's all going to be okay" and "you're going to love him more than you could ever imagine" -- some days it was the strength of their words alone that pulled me through.

In reading Lisa's letter (below), I think back on who I was and am amazed at how far we've all come. Three years later, not only am I a believer, but a preacher too. Hats off to Finnian's Mom -- I couldn't have put it any better myself. This Thanksgiving, among my many blessings, I feel lucky to be part of this incredible force -- a caring, compassionate, committed, and open-hearted community. Thanks too to Bridget's mom, Lisa, for bringing the letter to my attention, as seen in Mamapedia...

Photo by: Julie D

Letter to Parents Facing a Diagnosis of Down Syndrome

Dear New Parent/Parent-to-Be:

First of all, congratulations on your new baby!

You may be feeling shell-shocked right now, recently having learned that your baby has Down syndrome. You are probably feeling very frightened: what kind of health problems might my baby have? What does the future hold for him/her? For me? How can I love this baby? Can I love this baby? You very well might be feeling angry and bewildered: Why me? How could this have happened?

This is called grief. It’s okay to grieve for the baby you thought you were going to have. Allow yourself to go through and feel those emotions. They are normal.

If you give yourself and your baby a chance, though, there will come a time when you will suddenly realize: what was I so afraid of?

When I found out that my son has Down syndrome, I railed against fate. What did I do to deserve this? Why me? I grieved for the baby I thought I was going to have, and for all the dreams I had for that baby that I didn’t even realize I had until they were shattered.

From the moment I saw my son’s little face… no, before that – since I felt him swimming and turning somersaults in my belly, I was overwhelmed with love and a fierce feeling of protection for him. When I found out that he has Down syndrome, the love didn’t go away, but there was an adjustment my heart and mind had to make. A big adjustment.

While I was busy grieving and adjusting, my son was busy just being a baby. Yes, he had that pesky extra chromosome in every cell of his body, but he was (and is) oblivious to it. Over the first year of his life, he learned how to roll over, to coo and gurgle happily at me, to cry when he needed or wanted something, to breastfeed like a champ, to sit, crawl, play with toys, clap his hands, eat baby food from a spoon, follow his brothers and sisters around, and pull my books from their shelves. Hmmm… he’s not so different from the babies I had before him, actually. His giggle is just as infectious, and his tears just as heartbreaking.

He is not lovable only for his sameness, however. He is utterly lovable for his differences as well. He has to work harder and longer to reach the milestones that other babies breeze through, making their achievement all the more sweet. He’s as unique as a snowflake, just as all children are.

I don’t know what doctors are telling parents these days – parents who receive a prenatal diagnosis of Down syndrome. I’m sure it’s a lot of technical, statistical, scientific gobbley-gook, though, and I don’t know that the information they tend to give is up-to-date. There are lots of books out there, some of them helpful, some not.

What will life be like for you and your new baby? If you really want to know, talk to actual parents of children with Down syndrome. You will be hard pressed to find one who wishes they didn’t have their child. But even they cannot tell you what your life will be like with your child. That is largely up to you and what you choose to make of it.

Some people will feed you platitudes, telling you that “special babies are given to special parents.” You will hear things like, “Children with Down syndrome are so happy and loving!” “They are angels in disguise, sent directly from Heaven.” Bah! I don’t believe any of that. Those are empty words spoken by people who don’t know what else to say, and who are secretly glad it wasn’t them who were “chosen” to be “special parents.”

Here’s what I believe: it was a fluke, this chromosome that triplicated in my son’s genetic makeup. Because of it, he shares certain traits with other people who have Down syndrome. I don’t know what he will be capable of, but I have very high hopes and high expectations for him. Those dreams I had for him that were shattered? They weren’t really shattered at all. It just took me a while to figure out that his life is not about my dreams, it’s about his dreams, and only he can decide what those dreams are. Only he will be able to show me how his life is going to play out.

Although I am not a believer in some grand, divine plan, I do believe that I have been given an opportunity for enlightenment by having my son. Having him has forced me to reevaluate what it is I value. What constitutes a happy, full life? Does a high IQ ensure happiness, or even success? What is the criteria for a life worth living? I have been given a gift of appreciation and perspective that I never had before. I am able to see and accept my fellow human beings with a more open heart and a broader mind. Sometimes, I secretly think that my friends who have not had a child like my son are missing out on something very big.

Those questions posed earlier… What does the future hold for him/her? For me? I don’t know the answers to those questions. But the truth is, none of us has the answers to those questions about any of our kids, whether or not they are born with extra chromosomes. Life is a crapshoot, for each and every one of us, and for each and every one of our children, and our children’s children.

There was a time when the prospect of living life with a child with Down syndrome was one of the worst things I could imagine. Now, the worst thing I can think of is to not have my son.

The most important thing I can tell you is this: It will be okay. It really will. You will love your baby, you will laugh again, life will be full, and enriched in ways that you can’t even imagine.

Ups & Downs

2009-11-22T08:02:00.006-05:00

We had a lovely day yesterday visiting with our friends, the Perez family. Krysta is their youngest daughter who is 5 years old and has Down syndrome; although Down syndrome brought us together, our friendship has continued to blossom and we feel very fortunate to have them in our lives...they are some of the many wonderful people we've met because of Down syndrome. Like Lucas, Krysta is an awesome kid who has loads of potential...she's doing so well and is so incredibly sharp and verbal. Since she's a couple of years older than Lucas, I always use her as an example of what Lucas can accomplish with his tenacity and our perseverance.

What I have realized is that the older Lucas gets, the more he does and knows and grows, but the more the world expects of him (if he were a typically developing child). For instance, at the playground yesterday, a girl came up to me and asked, "does she have a ploblem (yes, it wasn't a "problem" but a "ploblem") because she fell. Is she your baby?" and I didn't realize that because of Lucas' long hair she was talking about him...so I said "no" and went about chasing Lucas around the playground. It wasn't until this morning, that I realized she was talking about Lucas -- it's actually a good thing because I need more practice in toughing up my skin and finding the right words to say in those situations...I know it's a teachable moment and I should say "he has Down syndrome and that affects his coordination, blah, blah, blah..." but instead, I just want to punch her out. I know, really grown up of me. But, it's the truth. I just want to go to the playground -- like freakin' everybody else does -- and enjoy my son without having to think about Down syndrome...really, is that too much to ask? Then, another woman said to her child (about the same age as Lucas) to go up the stairs because "he's taking his time" climbing up the ladder -- I wanted to punch her out too. I know I'm way too touchy about this, but isn't it just as easy to tell her kid to wait a minute and she can get her turn too. I'm learning to ignore the stares and the ignorance, but some days, it's not easy.

I was telling Tom this morning that I think when you have more than one child (in our case, Tayler is nearly grown) and have another with a disability, you don't have as much time or energy to give to this stuff; and that's a good thing. Good because you have another child who is growing and developing as she/he should and it must help balance things out and bring more of a sense of "normalcy" to life, even though we don't feel anything other than "normal" -- most people probably wouldn't agree. In a society where it's a race to be the smartest, fastest, best at everything; there's not much room for compassion, love, acceptance, and tolerance...it's just the way it is. Lucas will spend his entire life chasing to keep up and what we can do about it is help pave the way so he can chase his own goals and dreams and not those of others, even if they aren't what we ourselves dreamed they would be.

Happy Birthday Roscoe!

2009-11-17T18:04:00.009-05:00

Today is Roscoe's 2nd birthday...seems like only yesterday, I eyed him on his breeder Sheryl's website and fell in love with the adorable, newborn Havanese. He came home at nine weeks...all the way from New York. He and Lucas are growing up together and we couldn't imagine our lives without Roscoe...not to mention, I'm sure he's Lucas' definition of best friend (and the next best thing to a little brother). Here we are celebrating with our fur ball. Daddy already cooked him some ox tail. Watch Lucas signing and singing/saying "happy birthday" and getting a little too excited to blow out Roscoe's candle!

Children's Alley

2009-11-15T19:23:00.007-05:00

There was lots to do this past weekend, including the yearly Miami Book Fair International. They have a wonderful "Children's Alley" especially suited for small kids with lots of activities, which included opportunities for Lucas to plant his own tomato seed, decorate a pot, lots of coloring, and even visits with favorite characters. Lucas enjoyed meeting Clifford the Dog and was loving the Dr. Seuss exhibit (mostly because he wanted a hat of his own). We picked up several new books for Lucas while we were there.

Sadly, Lucas use to love Tom's favorite all-time story "Where the Wild Things Are" but in the last 6 months or so, his "fear factor" has really kicked in so he freaks whenever Max makes it to the land of the wild things (that's usually as far as we make before he starts screaming "no!" at the top of his lungs). Don't let the picture below fool you...he was okay when he first saw "wild thing" but the moment he tried to make contact with Lucas, well, that was that!

We finished the morning off at Bubba Gump's in Bayside where Lucas decided to become a fan of Daddy's caesar salad.

Potty Training Update

2009-11-15T07:26:00.009-05:00

In true Lucas form, he's doing his own potty training. We've been talking about it for months now (since he was 31 months and first showed real interest in the potty) and now we're planning the 3-day potty training boot camp to start on "Black Friday" -- the day after Thanksgiving. But, in the meantime, Lucas has started to go on the potty at school 2-3 times a day (every time he's put on the potty), although his pull-ups are still wet when he gets changed (maybe he's like his Dad and has a small bladder :)

Anyway, here's "proof" of his potty achievement -- the daily report from school. I realize I've been MIA, but I now have lots to report about so check back soon for more.

Lucas at 36 Months AKA 3 Years Old!

2009-11-03T17:30:00.002-05:00

We've had a very exciting couple of months since my last entry (at 34 months) since Lucas has accomplished some key educational milestones. He now knows all his (primary) colors...black, white, brown, red, blue, green, yellow, orange, purple, and even pink. Another pretty amazing thing happened right around his birthday...I bought him foam bath letters and decided to ask him to name letters in the bath in random order...the kid knows ALL the letters (and with good articulation too)! We've been using Starfall with him since he was an infant and it's obviously paid off. He also likes singing the alphabet song, although he does that in chunks (a,b,c,d,e..... n,o,p,q,r....w,x,y,z). We're capitalizing on his interest in letters and books so we've started more sight reading and that's coming along too...he probably knows about a dozen sight words. He is expanding his vocabulary and starting to use more 2-word phrases such as "open door" and "let's go" and "puppy Roscoe" and my favorite..."thank you" (what a polite child!); he's also starting to say "U-cas" (Lucas). The other big deal is he can count to 10 -- we're working more on getting him to count "things" so the numbers have real meaning.

At the Debbie School, they conduct the Battelle Developmental Inventory right before kids turn 3 (it's a Miami-Dade County requirement) and we received Lucas' scores...we are thrilled he is performing "within normal limits" in all areas of development (on the lower side on a couple, but he's above average in the "social-emotional" area -- not a big surprise there). The sad, double-edged truth of the matter is that when his godmother (who happens to be a developmental specialist) saw his scores, the first thing she told me was "he'll never qualify for services with these scores." It still amazes and confounds me that this can be true when a child has a qualifying medical condition -- and although performing exceptionally well for a child with a disability -- is still NOT performing on par with his typically developing peers. Whatyagonnado? Fight the power! Okay, off my soap box.

Lucas is blowing bubbles, whistles, and even a recorder (you know, the "instrument" we played in elementary school)...he blew out his birthday candles this year which was very exciting! He is wearing his glasses now most of the time -- he takes them off and puts them back on...I guess he's finally started to see the light (and everything else)! What isn't so exciting is that Lucas is getting more stubborn and more theatrical...he's not as easy going as he use to be and now often wants to do things when HE wants to do them, not when he's told. He loves telling us "no!" He's enjoying taking showers (with Daddy usually) and even washing himself including his hair (with help). He's also enjoying more pretend play.

Lucas is one of the most social/friendly kids you'll ever meet...which is characteristic of kids with Down syndrome (although I hate generalizing and labeling since each child is different and unique, I can't ignore this attribute which seems fairly consistent with kids I've met -- I happen to think it's a fabulous trait when properly channeled). He makes friends -- both adults and kids -- wherever he goes. Since he's the only child in our home (his big sister is 17), one of the best outcomes of school is Lucas is learning to defend himself and he can fearlessly insert himself in the middle of a play situation, even with older kids. Whether brave or crazy...it works for him!

In the fine motor skills area, we're working more with playdoh and finger paints. We've established Lucas is a righty (sorry to my left-handed husband). He can copy a straight (although short) horizontal or vertical line. He eats with both a spoon and fork (although he's really messy and still likes to use his free hand for help). Lucas is learning to use a scissor (the kind that closes on its own) and is experimenting with glue (watch out!). He still needs to be reminded what surfaces he can color on (at least he got "not the wall!"). We're starting to do more simple craft projects with him.

As for gross motor skills, his physical therapist has Lucas working on navigating an obstacle course, alternating legs going up and down stairs, and riding a tricycle. He's still working on jumping -- and we still need to pick up a trampoline to help with that (they're pricey!). He can catch and throw a large ball...we're working on smaller balls now. He's kicking both big and small balls about 5-7 feet. He's enjoying the playground more and can go up a ladder to get to a big slide and goes down by himself -- this is big for Lucas who can sometimes be overly cautious.

His favorite things to do now are "reading" books -- in fact, his teacher just told me Lucas conducts reading circles at school where he pretends to read a book while other kids listen in; he also likes surfing on the computer (not quite), playing with Roscoe and the kitties, bowling, and, of course, Signing Time AKA "Rachel" -- I tell you, the kid is obsessed, but he's learned so much -- we limit his viewing time to about an hour a day (2 episodes).

We're still a no-go on the potty training...which I vow to tackle before Christmas!

All in all, we're so proud of all the milestones Lucas has reached this past year and look forward to more steady progress and more good times ahead!

Happy Halloween!

2009-11-01T07:33:00.012-05:00

We had a great (but exhausting) Halloween in near 90 degree weather...that's South Florida for ya! Lucas really enjoyed the trick or treating, especially since Daddy carried him most of the way. It was our first time dressing up as a family -- Lucas as a Zen master, Tom as a samurai (doesn't Tom look a little like Steven Segal? maybe it's just the white man in a kimono), and me as a geisha...it was fun! We went to our friend Liz's development where we got energized on pizza with other friends before the hunt for candy. Oh, don't miss my homage to "Twilight" with my pumpkin carving; the other pumpkin is Tom's masterpiece. Hope you had a great Halloween too!

Birthday Party

2009-10-27T12:25:00.005-05:00

Sorry it took me so long to post, but here's a quick video of Lucas' little birthday party at school. He had a great time, and, as you'll see...he was determined to swipe Mickey!

Make an on-line slide show at www.OneTrueMedia.com

Happy 3rd Birthday, Lucas!

2009-10-15T09:45:00.001-04:00

Our big boy is three today! I can hardly believe it. It's what everyone says, but you've got to live to understand...they grow so fast, too fast. Every day more, Lucas becomes more vocal, opinionated, and independent...like it or not, my prayers are being answered.

I ran into a woman in the elevator recently who asked me if Lucas goes to the Debbie School, and I said "yes" -- she said, it seemed like only yesterday her son was there too...she followed up with "he'll be in high school before you know it" -- I know that much is true.

Today, we'll celebrate with Lucas' school friends with Mickey Mouse cupcakes, and tonight, what else? Presents! I promise photos later.

Here's my yearly tribute to Lucas...I love putting this together each year and reflecting on all the fun times and the wonderful people who fill our lives with love, encouragement, inspiration, and support. I couldn't resist the Josh Groban tune, and I'm not apologizing for it! So turn up the volume, pull out your tissues, and help us celebrate our big hunk of love...

Make an on-line slide show at www.OneTrueMedia.com

48 Hours Later...

2009-10-09T20:52:00.002-04:00

We have not one, but TWO casualties of a nearly three-year-old. Lucas has been getting more accustomed to the glasses and it's obvious he can see better, but he's still playing with them, and as a result, he's broken both his school pair and his home pair. Jeez. We're taking the two pairs back to For Eyes in the hopes they can get fixed, and to see if the optician can get a better fit for Lucas which hopefully will encourage use. Stay tuned.

I'm Down with You

2009-10-08T22:29:00.000-04:00

I absolutely love photography, and am especially fond of powerful portraits. One of the moms on my frequently-visited bulletin board posted about this beautiful collection of portraits of people with Down syndrome -- her precious daughter, Eliza, is featured in the I'm Down with You gallery. All proceeds from the book sales as well as the photographer's royalties, will be donated to Down syndrome organizations. There are only about a dozen photos, so take a quick look...you might be captured by them as much as I was.

For Your Eyes Only

2009-10-07T20:55:00.001-04:00

Okay, so once again, we're giving glasses a try. This is officially Lucas' FOURTH pair, and he's not even THREE yet...holy smokes! Anyway, Tom and I took Lucas to Bascom Palmer (a part of the University of Miami where I work, and the number one eye hospital in the country). After waiting four hours (that's not a typo)...we finally got in to the pediatric ophthalmologist who told us Lucas' nystagmus is improving, but his vision worsened -- Lucas is near-sighted or myopic -- his prescription is 6.25 and 4.50 so we're hoping he really "sees" the benefits of keeping his glasses on now. Poor baby, when we go to the zoo for instance, we can tell he's looking for the animals, but they're just blending in with the background.

Thanks to a tip from my friend Kerra, we went to For Eyes where we scored two pairs for $129 (as compared to the usual $300 at Miami Children's Hospital rip-off of a clinic). Here's Beanie with his first experience with his new glasses. Keep your fingers crossed these do the trick!

October is Down Syndrome Awareness Month

2009-10-03T23:12:00.001-04:00

What better way to start my blogging for Down Syndrome Awareness Month than by paying tribute to Pablo Pineda? Pablo won the best actor award at Spain's San Sebastian Film Festival for his role in Yo Tambien ("me too"). He portrays the character Daniel, who like Pablo himself, earned a college degree (the first person with Down syndrome in Europe with a college degree) -- the story follows Daniel at his first job where he falls in love with a colleague. I look forward to seeing the movie and hope it hits the states soon -- it will be released in Europe on October 16th. Bravo, Pablo!

The Girls

2009-09-22T12:22:00.003-04:00

Quite by accident, we adopted two kitties on Labor Day. One of my friends/co-workers is a volunteer for a pet adoption organization and after she told me about a little kitty she was rescuing, I told her to keep an eye out for a Hemingway (or extra toed) kitty since my late, great Lola was one and I have a soft spot for them.

Low and behold...they'd found one and when we went to visit, she had grown attached to another kitty. So before we knew it, we came home with both. For now, we're "fostering" Maxine -- the tuxedo one who reminds me of my Scarlett who was also a tuxedo -- but we can't imagine separating the two. I am still allergic to cats (despite having three over the past 18 years) so we're slowly introducing them inside -- they're spending half their time on our screened-in patio. Roxie Hart is the Hemingway who looks like she's wearing a phantom of the opera mask -- see her extra toes? She has them on all four paws. They're both about 4-5 months old now. Lucas is loving petting them and they're getting along fairly well with Roscoe who just wants to play.

Lucas' Little Mercedes

2009-09-20T17:30:00.001-04:00

I went looking for a Kettler tricycle because I wanted Lucas to have a good quality tricycle that would grow with him. If you know anything about tricycles, Kettler is like the Mercedes of tricycles...and not just because they're both German engineered. Kettler trikes are rugged, have great craftsmanship, and have a number of cool features....oh yeah, and like the Mercedes...they're spendy.

However, I went fishing for one on Craigslist and got lucky. We picked one up for about 1/3 of the price of a new one and it even came with a basket, seatbelt, and a bell...Lucas' favorite feature. The 4-year-old whose Mom sold it to us, was glaring at us with incredible contempt...the story has a happy ending though because they were investing our cash in a Buzz Lightyear bicycle for him. Everybody wins! Here's Lucas on his first outing on his first tricycle. He's learning to pedal and steer.

The Marathon...Slow and Steady

2009-09-16T20:16:00.004-04:00

On Monday, we had our meeting to plan Lucas' transition out of the Debbie School and into the Miami-Dade County school system. This can happen when Lucas turns 3 (next month) or at the end of the school year, we're opting for the latter. In the middle of this meeting, I took the opportunity to explain that I envision Lucas' education/development like a marathon and not a sprint. If we wait to push him, say when he enters high school in the hopes he can sprint to the finish line, it likely will be too little, too late. Instead, Lucas is running a marathon -- slow and steady -- and we are his able, willing, and supportive team who will pace him every step of the way. It's in envisioning this marathon that I can keep pushing, pushing, pushing, knowing that every single step will add up when he crosses that finish line...victorious! That's the way I see it.

Back to Monday's meeting...the Debbie School has been very good to and for Lucas as evidenced by his most recent testing. As of now, Lucas has about a 25% delay in speech compared to his typically developing peers...which is pretty stellar when compared to other kids with Down syndrome, especially because speech tends to be their greatest area of concern/delay. But wait, that doesn't matter. What does matter is that according to his most recent cognitive evaluation (which was done in May and we can assume has changed since), his cognitive level is BELOW his speech level which is a bad, bad thing in the world of qualifying for therapies. You see, even though Lucas has both 1) a qualifying medical condition, and 2) a developmental delay (caused by his medical condition), in order for him to receive speech therapy, he needs to have a 25% or greater speech delay when compared to his cognitive age -- REGARDLESS of his chronological age. That means that even though he is 34 months old, they don't care if he's cognitively testing like a 26 month old or 18 month old or 9 month old, I guess. If that's not the most absurd thing I've heard in a while, I don't freakin' know what is!

So...we were told at the meeting that although Lucas will be retested to check his cognitive age, he basically will not qualify for speech therapy. Hence, the county will stop covering speech therapy. Lucky for Lucas, the Debbie School will not discharge him from the program and he will keep his twice a week, 30-minute speech therapy sessions with his fabulous therapist, Angelique, who was just as horrified as we were about these developments. The scary part is that this will continue to be an issue...unless we can show Lucas has a significant delay, the state will not cover services -- speech, occupational, physical therapies. We were already forewarned that he will likely lose his physical therapy service once he graduates from the Debbie School since he can walk, kick, run, and jump, regardless of the quality of movement

It's a double-edged sword, I tell you. As the parent of a child with a disability, you want nothing more than to tell them to take their services and shove 'em, but you can't cut off your nose to spite your face. Lucas needs the therapies, he will need assistance, and we need to keep our pride and our egos in check at every meeting where his services come into question. As a parent, it's so difficult to remind yourself NOT to show any pride in your child's accomplishments, but instead, want him to "under perform" just so he can keep his services. It's counter-intuitive and frankly humiliating...the system sucks.

For now, we're proud of all the gains Lucas has made in all his developmental areas, and how he continues to be a favorite among teachers and therapists...it will serve him well. As for us, we will figure out how to get his needs met, even if we have to beg, steal, or borrow in the process. All that matters to us is where Lucas is headed...and that's up, up, up in the right direction!

The Specials

2009-09-13T17:21:00.000-04:00

I just discovered a new UK-based documentary series -- "The Specials" -- following the lives of five young people in Brighton. Their names are Sam, Lewis, Hilly, Lucy, and Megan -- the tagline for the series is "this is our world and we want to share it with you." There are two episodes up on the website thus far, each of which is about 10 minutes long. The website includes more information and video about each of the housemates.

Why is this of particular interest to me? Because all of "The Specials" have a disability -- Down syndrome for all but Lewis who has William's syndrome. They are a bunch of young, quirky, funny, and thoughtful young people making their way in the world...in so many ways, showing just how "normal" their lives can be, with the right support and encouragement. In watching them, I realize how much potential Lucas has and how I fully expect him to be able to follow in their footsteps, and possibly reach even further. I love that the producers are bringing their stories to the forefront...we've come a LONG way, baby!

Miracle Child

2009-09-07T13:19:00.005-04:00

Although I haven't posted in a couple of weeks, that doesn't mean it's been quiet around here. Lucas has had a number of great doctor visits which has reminded me of all the uncertainties of the beginning and how far we've come...

Our story starts with the lone frozen embryo from our one IVF attempt -- the embryo was transferred the week following my Mom's death when hope seemed lost that I could become successfully pregnant. I'd lost three pregnancies, including a ruptured ectopic which required removal of my right tube so in what seemed like an impossible twist of fate, I was in fact pregnant and he was obviously determined to make his entrance.

Fast forward to October 15th, an otherwise beautiful day in South Florida, until we heard the words that would forever change our lives "we think he has Down syndrome"...I can still vividly remember those raw moments that followed...I don't EVER want to go to that place again. After we'd had a chance to spend a little time with Lucas, in the early morning hours the following day, I looked up at Tom through my tears and said "but he makes me happy" and in that moment -- and every moment since -- it's that inexplicable, undefinable love and devotion that calls me to defend, protect, and adore our first and only son. At every turn, Lucas has earned his "miracle" child title. He survived the thaw before the transfer, he grew strong and healthy in my questionable emotional state/womb, and he arrived full of life, wonder, and determination.

Since that day, Lucas has been the exception and is defying the odds. His VSD (hole between the lower chambers of his heart) closed on its own which is unheard of according to his cardiologist; his ASD (hole between the upper chambers of his heart) is so tiny, it will likely never need to be repaired via open heart surgery, again another "unheard of" phenomenon; his ENT just cleared him from needing tubes and said his hearing is within the "normal" range; a cervical spine X-ray to check for AAI (instability of the neck vertebrae common with kids with DS) determined his vertebrae are "normal" and thus Lucas and Daddy may continue their WWF rounds; he measures at the 50th percentile in both height and weight when compared to his typically developing peers (and is off the Down syndrome growth chart); his development in all areas continues to impress his therapists; and last but not least, he is one of the most loving and funny kids you'll ever meet. Can you tell we're proud parents?!

In the end, we know Lucas has a disability and nothing will change that. However, his disability does not define him and it has opened doors to people, places, experiences, and emotions, we would never have known if it wasn't because of it. I don't know that I really believed in miracles until Lucas walked into my life; and every day with him teaches me we may all have limitations, but our possibilities are limitless.

First Week of School

2009-08-26T18:15:00.002-04:00

Lucas is now a "Busy Bee" at the Debbie School. I can hardly believe how easily he transitioned to this class as he begins his last year at the Debbie School. Although he's in a new class with new teachers, they moved all the kids from the "Tigers" together so many of his friends are still the same, including his main squeeze, Cecilia. Here he is with a few friends on his first day. The second photo is of Lucas in mommy's sunglasses...he likes to try on my shoes too...hopefully he'll outgrow this phase ;)

Slip & Slide a la Beanie

2009-08-22T15:08:00.005-04:00

"Tiger" No More...

2009-08-21T18:11:00.007-04:00

Here's Lucas on his last day in the "Tigers" classroom at the Debbie School. Doesn't he look like such a big boy! He's pictured with one of the teaching assistants, Odalys, and with a few of his classmates who will join him in the "Busy Bees" class. The school is a mix of kids who are typically developing and those with special needs. Lucas' last year at the Debbie School starts Monday!

Happy Birthday, Daddy!

2009-08-19T14:19:00.010-04:00

We celebrated Tom's 38th birthday yesterday with a lovely dinner of tapas and sangria at Chef Michelle Bernstein's Sra. Martinez in Miami's Design District. My niece, Kristine, turns 16 today so she and my sister joined us to celebrate the two Leos. We enjoyed the "Miami Spice" menu which included croquetas, tortilla Espanola, and some very tasty salads -- Tom loved the foie gras (duck liver pate) -- better him than me. We ended the evening with a simple cake and Lucas' favorite new song, Happy Birthday to You.

Lucas at 34 Months

2009-08-16T09:18:00.007-04:00

Lucas is now repeating so many words that I can't keep track! It's very exciting. What's most interesting is now that he's talking up a storm, he's barely signing anymore. He still enjoys watching "Signing Time" but now he's saying many of the words, instead of signing them. He now asks for "Tatel" (otherwise known as "Rachel" the talent in the "Signing Time" series) and "sings" through about half of the theme song. His articulation is improving, but blended sounds such as "bread" still sound like "bed" and letters which are made in the front of the mouth such as "n" and "l" are difficult -- when you ask him his name now, he usually says "cas" -- again the "l" is a difficult sound for him to produce. At school, he knows most of his friends' names and can identify them.

Lucas is using the 3-word phrase "I want [eat or outside or TV, etc.]" throughout the day; often in a demanding tone. He's taken a real liking to the "Brown Bear" book series and says "I see [horse or cat, etc.]" as we read the story which is just starting to translate to the real world. He is learning his colors -- his favorites are blue, red, and purple and he can identify those correctly in about 75% of cases. We use colored bean bags with the name of the color on it to reinforce this skill. He's got numbers one to five down, and is learning to count to 10, although he tends to skip either seven and/or eight. We use a great online tool called "Starfall" where Lucas is learning his letters too -- he knows about 10 letters he can identify and say, such as d, b, z, v, w, m. His favorite words include "mom" "wow" "ouch" "yeah" and "no" -- not to mention "let's go". He is getting more and more independent by the day -- he knows what he wants all the time and is quick to tell you "no" if you're not doing as he says/wants. Lucas is starting to take off his shirt and pants, and gets aggravated when we try to help. He also likes to tell you "bye" if you're crowding him -- his little way of saying "piss off".

Lucas has been getting so much better at following commands. He now can often follow a two-step command -- without my asking him more than three times! He's liking playing with his friends more too and is initiating play.

Lucas is starting to "run" more and walk at a faster pace so he can keep up with us. He's also getting more proficient at catching a ball...he can usually catch a big ball and in about 1 out of 4 throws, he can catch a smaller (about 6/8" diameter) ball. We're going to pick up a whiffle bat to start getting him accustom to swinging and improve his hand-eye coordination.

His favorite play things (in addition to balls) are his safari animals, sea animals (in the tub), putting together 3-piece magnetic animal puzzles, doing matching games, and he now loves his Magna Doodle. He's starting to scribble using his thumb up and holding his colors more steadily (I didn't know this was a big deal, but it's a milestone -- no longer using the thumb down when writing). A source of continued frustration for us is blowing...he loves bubbles, but is often more interested in dipping the wand and pulling it out of the bottle than in actually blowing bubbles.

The potty training is still a struggle, but that's mostly my fault. We haven't had the time or energy lately to put in the effort (I'm feeling all kinds of guilt about it too). Lucas has asked to use the potty successfully a handful of times in the past few weeks, but we don't push it. I'm going to do a boot-camp of sorts (using the "Three Day Potty Training" method) before he turns three --I mostly want to experiment to see how he (and I) do (I will most likely need some Xanax before I attempt it since it calls for taking the child to the potty each time he starts to have an accident -- luckily, we have wood floors throughout).

I know I keep saying this, but it's amazing how much and how quickly they grow, change, and develop...so much learning taking place. There are days when I want to fast forward everything (like getting him out of Pull-Ups!), but then I realize, the time is going by way too quickly as it is. I think it's probably one of the reasons some people have other kids...to be able to experience all these amazing moments over and over again. I'm already missing the little bean he use to be, but loving the little boy he's becoming.

Panama City Beach

2009-08-13T14:17:00.006-04:00

We spent a long weekend in Panama City Beach with our dear friends, the Blackfords. They rented a spacious, new, beach-themed condo overlooking the Gulf -- it was a 3/3 so we had our own bathroom and a comfy king-sized bed we shared with the kung-fu-kicking Bean. We had such a nice, relaxing time.

Highlights included lots of beach time catching up over beers, swimming in the warm Gulf water, Lucas jumping from the side of the pool (for the first time), the best tacos EVER at Bud & Alley's Taco Bar in Rosemary Beach, Tom's mango lobster tails and cilantro rice paired with a fabulous Shiraz Rob and Jenni picked up in San Francisco (they'd been saving it since their 10th wedding anniversary three years ago so we were honored), and watching the girls, Emma and Anabel (otherwise known as Lucas' entourage), playing and having fun with Lucas. The girls spent much of their time "catching" fish and collecting buckets of shells. Another fun fact is that Lucas has really taken to Rob...he'd already warmed to him quickly earlier this year, but this time Lucas would wake up in the morning yelling "Rob" throughout the condo and when he first spotted Rob in the mornings, he'd run to his arms...it must be Rob's magnetic personality!

Although it was a hellacious 9-10 hour drive each way, it was well worth it. More pics will be added to my Facebook account soon.

These Shoes Were Made for Walking

2009-08-05T22:15:00.005-04:00

Lucas actually put one of Tom's shoes on himself and I helped him with the other one...he was having so much fun walking in Daddy's shoes...wouldn't you agree? I know, I know, the kid needs a haircut!

Thumbs Up 4: Special Education Law & Advocacy Workshop

2009-08-05T21:43:00.021-04:00

What a terrific investment of my time...today, I attended a Special Education Law and Advocacy Seminar co-sponsored by the Florida Developmental Disabilities Council and the US Department of Health and Human Services, Disabilities Division. The presenter was Pete Wright, an attorney specializing in special education who argued one of the most famous special education Supreme Court cases, Florence County School District IV v. Shannon Carter -- ruling unanimously for Carter, the judges held that if a public school defaults and the child receives an appropriate education in a private placement, the parents are entitled reimbursement for the education that should have been provided by the School District. Pete and his wife are also co-authors to some of the most informative and widely read books on special education -- I was lucky enough to get copies of the Wrightslaw: Special Education Law, 2nd Edition and Wrightslaw: From Emotions to Advocacy, 2nd Edition free of charge for attending the conference.

The seminar is a MUST for any parent of a child with a disability -- I have been in the dark and hugely intimated by the Individuals with Disabilities Education Act (2004) and the associated laws, regulations, etc. But, as Lucas will be three in October and we will face his first IEP (Individualized Education Plan), I thought it mandatory to attend the workshop and am so glad I did. I feel much better informed, prepared, and armed. Pete guided us through the essential elements of the law and helped decifer some of the more cryptic language. Again, it was a very worthwhile investment of my time...I'm bummed Tom didn't attend. I will share this information with him and other friends/parents of kids with disabilities who would benefit from even a basic understanding of the law so we can help advocate, protect, and even defend our children's rights to a free appropriate public education.

The purpose of I.D.E.A. is (among others): to ensure all children with disabilities have available to them a free appropriate public education that emphasizes special education and related services designed to meet their unique needs and prepare them for further education, employment, and independent living. [Amen!]

Tay's Summer Visit -- Take 2

2009-07-30T21:46:00.009-04:00

Here are a few more pictures from Tay's trip worth posting, including sibling love and WWF moves, Tayler and Kristine wearing lip "masks", and a drag queen and a "hooker" turtle on Duval Street as well as Tayler having her nose pierced...and then there's Roscoe. Enjoy!

Tay's Summer Visit

2009-07-30T21:17:00.012-04:00

We had a wonderful visit with Tayler who was here for most of the month of July and headed back to Seattle on Tuesday. It was lovely to see her, as always, and to watch her interact with her brother. Lucas is growing more and more fond of her, and the feeling is mutual. I posted an album to my Facebook account, but for those who don't venture there, here are a few pictures of our trip to Key West which included stops at the Hemingway House, Jimmy Buffett's Margaritaville, Mallory Square for the nightly "sunset celebration", Lucas' first bike ride, and of course, several visits to Duval Street for shopping, eating, and some good people watching. We miss Tay already and hope to see her at the holidays.

To Groucho: The King of Purr

2009-07-24T17:52:00.006-04:00

It is with the heaviest of hearts that I share with you the news of the death of my beloved Groucho. My 18+ year old companion who lived with me in 17 different places from Miami to New York to Seattle and back to Miami again. The keeper of all my secrets, the one who loved me without condition, and who was always there...come rain or shine or sleet or snow. This photo was taken this morning.

Groucho's illness came on unexpectadly and he became suddenly blind over the last couple of weeks. This morning, on our way to the vet for a follow-up -- in my heart fearing the worst -- he suffered a stroke in my arms. By the time we got to the vet, he was nearly unresponsive. He made it so I didn't have a choice to make. The vet said he was going and we shouldn't wait...so we didn't. I held him in his blue blanket and loved on him as Tom and I shed many tears.

To the very end, he was a rock star, he took care of me, and was just the "coolest" and best kitty EVER. I miss him so much already. He died two years to the day Lola passed (my calico kitty) -- and in the same exam room, surrounded by a loving vet staff.

I feel so fortunate to have had all these years together...that I will bear the pain because I have so many wonderful memories to comfort me.

Fun in the Sun

2009-07-16T22:54:00.005-04:00

Our friends, Kerra and Julio and their daughters Krysta and Katalina, hosted us on their boat last weekend. We headed down to Homestead and put out at the Homestead Bayfront Marina. It was a picture perfect boating day -- sunny, very warm, and a little breezy. We went snorkeling, but spent most of the day anchored off shore relaxing both on and off the boat. Although Lucas wasn't keen on spending tons of time in the water, he found ways to keep himself entertained nonetheless. We all came back with a heavy tan, and despite his 50 SPF, Tom's back was a lovely shade of lobster red...aloe vera to the rescue!

Happy 76th Papi

2009-07-16T22:45:00.005-04:00

My dad turned 76 on July 10th and we had a little celebration at our home complete with slow-roasted pork and other typical Cuban food -- Tom did all the cooking and Dad thoroughly enjoyed the feast. Here are pics, including one with his grandchildren -- Tayler is in town for nearly three weeks so we were all happy to have her here.

The Little Farm

2009-07-08T22:05:00.006-04:00

Today, Lucas and his school friends enjoyed a visit from "The Little Farm" complete with goats, a lamb, a duck, a goose, a baby pig, a big fat (ugly) turkey, a few chickens, a rooster, and a bunny...Lucas was all about petting them; the kids LOVED the experience. Here's proof...

Happy Independence Day

2009-07-04T14:54:00.002-04:00

I took this shot of Lucas and Roscoe to help my dear friend, Mike, celebrate his mom's 90th birthday....since Lucas is in his "freedom" tank top today, I thought it was fitting to post here too.

Enjoy your holiday and be safe!

Big Boy at the Dinner Table

2009-07-03T06:26:00.004-04:00

A couple of nights ago, Lucas refused to eat his dinner. He's been showing more interest in sitting on one of the dining room chairs so Tom asked if that's what he wanted to do, and Lucas said "yeah." So...we pulled out his booster and hoisted him up on it...wa-la...he ate dinner for the first time at the dinner table -- at the head of the table, no less. Daddy cooked up one of Lucas' favorites...pasta! And don't forget the "bed" (bread)...boy loves his carbs!

Summer Fun

2009-06-28T19:40:00.004-04:00

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

2009-06-28T00:02:00.004-04:00

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

2009-06-26T09:42:00.010-04:00

"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!

2009-06-21T12:37:00.007-04:00

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!

2009-06-18T11:43:00.003-04:00

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

2009-06-16T15:59:00.011-04:00

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

2009-06-12T16:18:00.014-04:00

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

2009-06-11T14:45:00.041-04:00

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