It's been a month now since Tom headed out to Seattle...as I predicted, it feels like just yesterday and yet an eternity. In this short time, I've done a bit of growing and I finally feel like I'm coming out the other side and able to see the light at the end of the tunnel. Next Friday, Lucas and I head to Seattle to celebrate my 45th birthday and share some much needed family time, before the final push -- we're then back in Miami for a few weeks to pack, give notice at my job (YES!!!!!) and tie up all the loose ends (Lucas' IEP meeting, which always gives me agita).
I could've never guessed that in some ways I'd be "starting over" at this ripe old age, which is equally frightening and liberating! I'm excited for this fantastic new adventure, although there have been days and moments since Tom's departure that I've wondered out loud, "what the hell are we doing?!" Relocating your life to the far corner of our country is a daunting and scary proposition...one that requires more courage than I can usually muster. But in my "I give up" moments of weakness, I ask myself, "what's in Lucas' best interest?" and ultimately, what's in my family's best interest...and time and time again, I come to the same conclusion...to stay the course. A life out west may not be nirvana and it will certainly not be as sunny as my Miami, but it will give our son a more loving, peaceful, and stable environment to be raised in, surrounded by family and friends. In this life, I can't ask for much more promise from a fresh start. Just two more months in paradise.
Wednesday, February 29, 2012
Monday, February 13, 2012
12 Long Days...
Tom left for Seattle bright and early on February 2nd. Since, he's been busy catching up with his family and old friends as well as getting up to speed with his exciting new job. I'm jealous. Tom is living our future, while I'm "holding down the fort" in a life I'm getting ready to leave behind. The days fly by and at the same exact time...drag on. How's that possible?! I keep reminding myself this is another opportunity to grow and learn things about myself I wouldn't otherwise get a chance to do...I tell you, there are some lessons or experiences I know I could do without.
On the upside, with Tom away, I get to call all the shots (and those of you who know me, know I kinda like it that way). Lucas has been incredibly well behaved, and at times, even delightful! We have a routine established and he complies with most of my requests (without much whining). At night, he's able to spend a few minutes connecting with Tom via Skype which has been a huge help...he even hugs and kisses the computer. He understands Tom is living in Seattle and knows we will move too. If you ask him now where he lives, he will usually say "Seattle" -- not quite yet, little man! Another 75 days or so...it'll be here before you know it (yeah, right!).
On the downside, I'm exhausted all the time! I have a new-found appreciation and respect for single parents (and those whose spouses are deployed) who do it all, every day. Did I just say "do it all"? No, no, no...the secret to survival is understanding you CAN'T do it all. So, I do as much as I can, when I can. It's not a good proposition for my type-A personality, but there's another growth opportunity too...challenging myself to do the best I can and be okay if it's not my best.
It's not just the practical, everyday things (taking out the trash, helping Lucas with homework, making dinner -- I miss my husband's cooking!) that take a toll, but it's the simple fact that I miss my family...the everyday silliness and joy that comes from being together and sharing ourselves with one another. But as many of my friends have reminded me: this too shall pass.
On the upside, with Tom away, I get to call all the shots (and those of you who know me, know I kinda like it that way). Lucas has been incredibly well behaved, and at times, even delightful! We have a routine established and he complies with most of my requests (without much whining). At night, he's able to spend a few minutes connecting with Tom via Skype which has been a huge help...he even hugs and kisses the computer. He understands Tom is living in Seattle and knows we will move too. If you ask him now where he lives, he will usually say "Seattle" -- not quite yet, little man! Another 75 days or so...it'll be here before you know it (yeah, right!).
On the downside, I'm exhausted all the time! I have a new-found appreciation and respect for single parents (and those whose spouses are deployed) who do it all, every day. Did I just say "do it all"? No, no, no...the secret to survival is understanding you CAN'T do it all. So, I do as much as I can, when I can. It's not a good proposition for my type-A personality, but there's another growth opportunity too...challenging myself to do the best I can and be okay if it's not my best.
It's not just the practical, everyday things (taking out the trash, helping Lucas with homework, making dinner -- I miss my husband's cooking!) that take a toll, but it's the simple fact that I miss my family...the everyday silliness and joy that comes from being together and sharing ourselves with one another. But as many of my friends have reminded me: this too shall pass.
Tuesday, January 31, 2012
A New Book
In a conversation with my dear friend Liz, she suggested I view our "big decision" not just as a new chapter, but as a new book complete with a shiny leather-bound cover, ready to be written. This new book will take us 3,700 miles across the country, back to where the "magic" started for Tom and I...Seattle.
The decision to move is the culmination of much angst on both our parts for what we'll likely agree was the inevitable...not so much returning to Seattle, but leaving Miami. Sure, Miami is home to golden sunshine, bright blue skies, sandy beaches and cafecitos on every corner, but unfortunately, it's littered with too many loud, rude, and dishonest people who love it here too. Most importantly, you'll never meet a parent who will tell you "it's a great place to raise my kids." Miami lives up to its reputation as a glamorous party city and certainly a "great place to visit" -- and that's how I want to remember it. As a family, we feel Miami comes with a price we're not willing to pay anymore. Truth is, Tom and I have been leaving Miami since we got here more than 6 years ago -- my mother's failing health bringing me home 12 years later. I'll never regret the return since my mom passed away 6 months later and I was by her side in those final days.
Over the years though, Tom and I toyed with the idea of moving several times, and a couple of years ago were certain we'd head to Nashville where my best friend lives. But, the stars didn't quite align, and as much as I hate to admit it, subconsciously I don't think I was ready. But then, bad came to worse: we lost our home in this lousy real estate market, the next house was ransacked and robbed of most of my jewelry and family heirlooms, and my poor husband was ousted out of one too many high-pressured jobs, even once by a celebrity chef he once admired. To say it's been a bumpy ride is an understatement, and it's high time to get off the roller coaster.
A few months ago we put the topic of moving back on the table. The debate always centered around three places -- a prerequisite for consideration was the availability of a support system -- Nashville, Philadelphia or Seattle. Tom started pushing for Seattle, and although I'd been afraid of the dreaded rain and the distance (from my peeps on the east coast), I remembered there really was lots to love about the area, not the least of which is Tom's family. Seattle is much more "civilized" as a city, and it's generally a place where people actually care about their city and their neighbors. At Christmas, Lucas and I took a trip to Seattle (and I stuck my proverbial toe in the water). We enjoyed lots of family time -- Lucas saw snow and went sledding for the first time -- and he came back unable to talk about much more than Seattle, his nanny, and his cousins, Brendan and Kellen.
Looking back, I feel as if though the moment I opened myself up to the possibility of Seattle..."BAM" some cosmic force took over and things started falling into place in a way I could have never predicted. Tom got offered a job he's very excited about and is leaving on Thursday to start as food and beverage director for Pineapple Hospitality on February 6th. I've been networking with parents of kids with Down syndrome to get insight about the schools and the community and have been reconnecting with old friends to share the news.
No matter how many times I say it, it still hasn't fully sunk in...Tom is leaving FOR GOOD and I'm going to be a single parent for the next three months. Luckily, we have tickets to visit Seattle over Lucas' spring break (which also happens to be my birthday) so that will help break up the time. My family and friends have promised to pitch in and I will take them up on it. I haven't left yet and I already miss the people and places I love most about Miami...I look forward to getting reacquainted with them all.
Stay tuned for the adventures ahead!
The decision to move is the culmination of much angst on both our parts for what we'll likely agree was the inevitable...not so much returning to Seattle, but leaving Miami. Sure, Miami is home to golden sunshine, bright blue skies, sandy beaches and cafecitos on every corner, but unfortunately, it's littered with too many loud, rude, and dishonest people who love it here too. Most importantly, you'll never meet a parent who will tell you "it's a great place to raise my kids." Miami lives up to its reputation as a glamorous party city and certainly a "great place to visit" -- and that's how I want to remember it. As a family, we feel Miami comes with a price we're not willing to pay anymore. Truth is, Tom and I have been leaving Miami since we got here more than 6 years ago -- my mother's failing health bringing me home 12 years later. I'll never regret the return since my mom passed away 6 months later and I was by her side in those final days.
Over the years though, Tom and I toyed with the idea of moving several times, and a couple of years ago were certain we'd head to Nashville where my best friend lives. But, the stars didn't quite align, and as much as I hate to admit it, subconsciously I don't think I was ready. But then, bad came to worse: we lost our home in this lousy real estate market, the next house was ransacked and robbed of most of my jewelry and family heirlooms, and my poor husband was ousted out of one too many high-pressured jobs, even once by a celebrity chef he once admired. To say it's been a bumpy ride is an understatement, and it's high time to get off the roller coaster.
A few months ago we put the topic of moving back on the table. The debate always centered around three places -- a prerequisite for consideration was the availability of a support system -- Nashville, Philadelphia or Seattle. Tom started pushing for Seattle, and although I'd been afraid of the dreaded rain and the distance (from my peeps on the east coast), I remembered there really was lots to love about the area, not the least of which is Tom's family. Seattle is much more "civilized" as a city, and it's generally a place where people actually care about their city and their neighbors. At Christmas, Lucas and I took a trip to Seattle (and I stuck my proverbial toe in the water). We enjoyed lots of family time -- Lucas saw snow and went sledding for the first time -- and he came back unable to talk about much more than Seattle, his nanny, and his cousins, Brendan and Kellen.
Looking back, I feel as if though the moment I opened myself up to the possibility of Seattle..."BAM" some cosmic force took over and things started falling into place in a way I could have never predicted. Tom got offered a job he's very excited about and is leaving on Thursday to start as food and beverage director for Pineapple Hospitality on February 6th. I've been networking with parents of kids with Down syndrome to get insight about the schools and the community and have been reconnecting with old friends to share the news.
No matter how many times I say it, it still hasn't fully sunk in...Tom is leaving FOR GOOD and I'm going to be a single parent for the next three months. Luckily, we have tickets to visit Seattle over Lucas' spring break (which also happens to be my birthday) so that will help break up the time. My family and friends have promised to pitch in and I will take them up on it. I haven't left yet and I already miss the people and places I love most about Miami...I look forward to getting reacquainted with them all.
Stay tuned for the adventures ahead!
Wednesday, January 18, 2012
Lucas at Five = Mr. Independent
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):
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!
Here's Lucas' annual "year in review" -- enjoy!
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
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!
Here's Lucas' annual "year in review" -- enjoy!
Tuesday, May 24, 2011
It's Not Acceptable...
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!
Wednesday, March 2, 2011
Take the Pledge!
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!
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!
Monday, February 14, 2011
Best Buddies @ MIA
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.
Friday, February 4, 2011
A Star is Born
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.
Thursday, December 30, 2010
Lucas at 4 Years Old
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.
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
Writer's Block
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!
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