Thursday, December 30, 2010
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.
Monday, December 6, 2010
Friday, October 29, 2010
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.
Friday, October 15, 2010
Wednesday, October 6, 2010
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!
Tuesday, August 24, 2010
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.
Monday, August 16, 2010
Tuesday, August 3, 2010
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...
Thursday, July 29, 2010
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).
Wednesday, July 28, 2010
Monday, July 26, 2010
Monday, July 19, 2010
Friday, July 16, 2010
Thursday, July 15, 2010
Tuesday, July 6, 2010
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.
Friday, July 2, 2010
Monday, June 28, 2010
Tuesday, June 15, 2010
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.
Sunday, June 13, 2010
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.
Tuesday, June 1, 2010
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.
Thursday, May 20, 2010
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.
Tuesday, April 6, 2010
Sunday, April 4, 2010
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!