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!
Tuesday, May 24, 2011
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!
Friday, October 29, 2010
Lucas' Mickey Mouse ClubHouse
We had a wonderful little birthday party for Lucas at our home in Coconut Grove. We had some old friends and some new friends...and a fun time was had by all! Lucas especially enjoyed seeing his friends from the Debbie School and playing in his "Mickey Mouse Clubhouse" bounce house.
9-month old Nico and Mom, Mayra.
Lucas and Krysta.
Lucas, Ana and Nina.
Lucas with Cecilia, Amalie, Ana, and Nina.
Lucas and Max.
Happy Birthday to Lucas! Krysta, Amalie, Nina, Max, Lucas, Ana and Cecilia.
Lucas and Cameron.
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
Happy 4th Birthday Lucas!
Happy 4th Birthday to the light of my life. We are so proud of our little bean and it's been a hell of a year. Watch the montage and see his "year in review" which includes trips to Seattle, Nashville, and Disney World...and moments with some of his favorite people in the world, including Mickey Mouse who we are on our way to see (again!).
Enjoy!
Enjoy!
Wednesday, October 6, 2010
NDSS 2010 NYC Buddy Walk & Video
We had the extreme privilege and pleasure to attend the 2010 New York City Buddy Walk on Saturday, September 25th, to join thousands in Central Park and raise awareness for Down syndrome. "Team Bean" raised more than $2,400 for the National Down Syndrome Society. THANK YOU to all who supported the cause!
Lucas was one of about 200 people chosen to represent Down syndrome in the yearly video presentation in Times Square...it was an awesome experience seeing Lucas up on this GIGANTIC screen! He got a kick out of it too! Here's a link to the complete video on the NDSS website -- Lucas is at about 11:00 minutes into the video. Enjoy!
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
First Day of School
Yesterday we dropped Lucas off for his first day of school as a PreK-3 student at Silver Bluff Elementary. He seemed so little among the "big" kids, and I was afraid he wasn't ready for it. We hung around a little longer than we should...surveying the teacher, the other students, interactions among them, how Lucas engaged with them and vice versa. As we said our goodbyes, we reassured him we'd be back soon to pick him up and encouraged him to have fun with his new friends and teacher, Mrs. Morales -- Tom spent the morning working with Lucas so he could sorta say her name correctly...he's getting there. As we turned to leave, Lucas was inconsolable, but what choice did we have but to believe he would quickly turn his attention to the adventure ahead.
No sooner did we get home, than I totally lost it...completely overwhelmed...crying for reasons I didn't quite understand. More than anything, I realized how afraid I am of failing Lucas and not making the "right" decisions on his behalf which could have a significant impact on the outcome of his life. It all sounds very dramatic, I know, my kid is only in pre-K, right? I put so much pressure on myself because I'm aware every step is a building block, and because of Lucas' disability we have to be extra vigilant about his education as he can't quickly recover from a "bad" year or a poor choice. I'm surprised this transition has caused so many feelings to bubble up, but I'm not alone, Tom is struggling too. It's a good thing I took the day off; I had no idea how much I'd need it. We parked ourselves on the beach in the warm afternoon sun which helped soothe our souls and clear our heads.
When the bell rang at 1:50 PM, we huddled with other parents waiting nervously and impatiently for our little ones. Lucas greeted us with a big smile and before we were even off the school grounds he said "more school" -- sounds like we're off to a good start. Keep your fingers crossed and say a little prayer for Lucas and his imperfect parents who are doing the best they can.
I guess, in the end, disability or not, it's hard watching our little ones grow up and head out into the world. And although I've been whispering this mantra into my son's ear since he came into the world "...grow into a happy, healthy, smart, and independent boy..." this mama is not quite ready for too much independence just yet.
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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.
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