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.
Tuesday, July 6, 2010
I'll Be Wrapped Around Your Finger...
...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.
Friday, July 2, 2010
Summer Has Begun
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.
Monday, June 28, 2010
Tuesday, June 15, 2010
The Whole Truth...
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.
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
The Graduates
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.
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
Stepping Stones: Lucas at 3 1/2 Years Old
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.
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
I'm BAAACCCCKKKKKKK....
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
Happy Anniversary to Us
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!
Sunday, April 4, 2010
Happy Easter
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!
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!
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