Sunday, November 1, 2009
Happy Halloween!
We had a great (but exhausting) Halloween in near 90 degree weather...that's South Florida for ya! Lucas really enjoyed the trick or treating, especially since Daddy carried him most of the way. It was our first time dressing up as a family -- Lucas as a Zen master, Tom as a samurai (doesn't Tom look a little like Steven Segal? maybe it's just the white man in a kimono), and me as a geisha...it was fun! We went to our friend Liz's development where we got energized on pizza with other friends before the hunt for candy. Oh, don't miss my homage to "Twilight" with my pumpkin carving; the other pumpkin is Tom's masterpiece. Hope you had a great Halloween too!
Tuesday, October 27, 2009
Birthday Party
Sorry it took me so long to post, but here's a quick video of Lucas' little birthday party at school. He had a great time, and, as you'll see...he was determined to swipe Mickey!
Thursday, October 15, 2009
Happy 3rd Birthday, Lucas!
Our big boy is three today! I can hardly believe it. It's what everyone says, but you've got to live to understand...they grow so fast, too fast. Every day more, Lucas becomes more vocal, opinionated, and independent...like it or not, my prayers are being answered.
I ran into a woman in the elevator recently who asked me if Lucas goes to the Debbie School, and I said "yes" -- she said, it seemed like only yesterday her son was there too...she followed up with "he'll be in high school before you know it" -- I know that much is true.
Today, we'll celebrate with Lucas' school friends with Mickey Mouse cupcakes, and tonight, what else? Presents! I promise photos later.
Here's my yearly tribute to Lucas...I love putting this together each year and reflecting on all the fun times and the wonderful people who fill our lives with love, encouragement, inspiration, and support. I couldn't resist the Josh Groban tune, and I'm not apologizing for it! So turn up the volume, pull out your tissues, and help us celebrate our big hunk of love...
I ran into a woman in the elevator recently who asked me if Lucas goes to the Debbie School, and I said "yes" -- she said, it seemed like only yesterday her son was there too...she followed up with "he'll be in high school before you know it" -- I know that much is true.
Today, we'll celebrate with Lucas' school friends with Mickey Mouse cupcakes, and tonight, what else? Presents! I promise photos later.
Here's my yearly tribute to Lucas...I love putting this together each year and reflecting on all the fun times and the wonderful people who fill our lives with love, encouragement, inspiration, and support. I couldn't resist the Josh Groban tune, and I'm not apologizing for it! So turn up the volume, pull out your tissues, and help us celebrate our big hunk of love...
Friday, October 9, 2009
48 Hours Later...
We have not one, but TWO casualties of a nearly three-year-old. Lucas has been getting more accustomed to the glasses and it's obvious he can see better, but he's still playing with them, and as a result, he's broken both his school pair and his home pair. Jeez. We're taking the two pairs back to For Eyes in the hopes they can get fixed, and to see if the optician can get a better fit for Lucas which hopefully will encourage use. Stay tuned.
Thursday, October 8, 2009
I'm Down with You
I absolutely love photography, and am especially fond of powerful portraits. One of the moms on my frequently-visited bulletin board posted about this beautiful collection of portraits of people with Down syndrome -- her precious daughter, Eliza, is featured in the I'm Down with You gallery. All proceeds from the book sales as well as the photographer's royalties, will be donated to Down syndrome organizations. There are only about a dozen photos, so take a quick look...you might be captured by them as much as I was.
Wednesday, October 7, 2009
For Your Eyes Only
Okay, so once again, we're giving glasses a try. This is officially Lucas' FOURTH pair, and he's not even THREE yet...holy smokes! Anyway, Tom and I took Lucas to Bascom Palmer (a part of the University of Miami where I work, and the number one eye hospital in the country). After waiting four hours (that's not a typo)...we finally got in to the pediatric ophthalmologist who told us Lucas' nystagmus is improving, but his vision worsened -- Lucas is near-sighted or myopic -- his prescription is 6.25 and 4.50 so we're hoping he really "sees" the benefits of keeping his glasses on now. Poor baby, when we go to the zoo for instance, we can tell he's looking for the animals, but they're just blending in with the background.
Thanks to a tip from my friend Kerra, we went to For Eyes where we scored two pairs for $129 (as compared to the usual $300 at Miami Children's Hospital rip-off of a clinic). Here's Beanie with his first experience with his new glasses. Keep your fingers crossed these do the trick!
Thanks to a tip from my friend Kerra, we went to For Eyes where we scored two pairs for $129 (as compared to the usual $300 at Miami Children's Hospital rip-off of a clinic). Here's Beanie with his first experience with his new glasses. Keep your fingers crossed these do the trick!
Saturday, October 3, 2009
October is Down Syndrome Awareness Month
What better way to start my blogging for Down Syndrome Awareness Month than by paying tribute to Pablo Pineda? Pablo won the best actor award at Spain's San Sebastian Film Festival for his role in Yo Tambien ("me too"). He portrays the character Daniel, who like Pablo himself, earned a college degree (the first person with Down syndrome in Europe with a college degree) -- the story follows Daniel at his first job where he falls in love with a colleague. I look forward to seeing the movie and hope it hits the states soon -- it will be released in Europe on October 16th. Bravo, Pablo!
Tuesday, September 22, 2009
The Girls
Quite by accident, we adopted two kitties on Labor Day. One of my friends/co-workers is a volunteer for a pet adoption organization and after she told me about a little kitty she was rescuing, I told her to keep an eye out for a Hemingway (or extra toed) kitty since my late, great Lola was one and I have a soft spot for them.
Low and behold...they'd found one and when we went to visit, she had grown attached to another kitty. So before we knew it, we came home with both. For now, we're "fostering" Maxine -- the tuxedo one who reminds me of my Scarlett who was also a tuxedo -- but we can't imagine separating the two. I am still allergic to cats (despite having three over the past 18 years) so we're slowly introducing them inside -- they're spending half their time on our screened-in patio. Roxie Hart is the Hemingway who looks like she's wearing a phantom of the opera mask -- see her extra toes? She has them on all four paws. They're both about 4-5 months old now. Lucas is loving petting them and they're getting along fairly well with Roscoe who just wants to play.
Low and behold...they'd found one and when we went to visit, she had grown attached to another kitty. So before we knew it, we came home with both. For now, we're "fostering" Maxine -- the tuxedo one who reminds me of my Scarlett who was also a tuxedo -- but we can't imagine separating the two. I am still allergic to cats (despite having three over the past 18 years) so we're slowly introducing them inside -- they're spending half their time on our screened-in patio. Roxie Hart is the Hemingway who looks like she's wearing a phantom of the opera mask -- see her extra toes? She has them on all four paws. They're both about 4-5 months old now. Lucas is loving petting them and they're getting along fairly well with Roscoe who just wants to play.
Sunday, September 20, 2009
Lucas' Little Mercedes
I went looking for a Kettler tricycle because I wanted Lucas to have a good quality tricycle that would grow with him. If you know anything about tricycles, Kettler is like the Mercedes of tricycles...and not just because they're both German engineered. Kettler trikes are rugged, have great craftsmanship, and have a number of cool features....oh yeah, and like the Mercedes...they're spendy.
However, I went fishing for one on Craigslist and got lucky. We picked one up for about 1/3 of the price of a new one and it even came with a basket, seatbelt, and a bell...Lucas' favorite feature. The 4-year-old whose Mom sold it to us, was glaring at us with incredible contempt...the story has a happy ending though because they were investing our cash in a Buzz Lightyear bicycle for him. Everybody wins! Here's Lucas on his first outing on his first tricycle. He's learning to pedal and steer.
However, I went fishing for one on Craigslist and got lucky. We picked one up for about 1/3 of the price of a new one and it even came with a basket, seatbelt, and a bell...Lucas' favorite feature. The 4-year-old whose Mom sold it to us, was glaring at us with incredible contempt...the story has a happy ending though because they were investing our cash in a Buzz Lightyear bicycle for him. Everybody wins! Here's Lucas on his first outing on his first tricycle. He's learning to pedal and steer.
Wednesday, September 16, 2009
The Marathon...Slow and Steady
On Monday, we had our meeting to plan Lucas' transition out of the Debbie School and into the Miami-Dade County school system. This can happen when Lucas turns 3 (next month) or at the end of the school year, we're opting for the latter. In the middle of this meeting, I took the opportunity to explain that I envision Lucas' education/development like a marathon and not a sprint. If we wait to push him, say when he enters high school in the hopes he can sprint to the finish line, it likely will be too little, too late. Instead, Lucas is running a marathon -- slow and steady -- and we are his able, willing, and supportive team who will pace him every step of the way. It's in envisioning this marathon that I can keep pushing, pushing, pushing, knowing that every single step will add up when he crosses that finish line...victorious! That's the way I see it.
Back to Monday's meeting...the Debbie School has been very good to and for Lucas as evidenced by his most recent testing. As of now, Lucas has about a 25% delay in speech compared to his typically developing peers...which is pretty stellar when compared to other kids with Down syndrome, especially because speech tends to be their greatest area of concern/delay. But wait, that doesn't matter. What does matter is that according to his most recent cognitive evaluation (which was done in May and we can assume has changed since), his cognitive level is BELOW his speech level which is a bad, bad thing in the world of qualifying for therapies. You see, even though Lucas has both 1) a qualifying medical condition, and 2) a developmental delay (caused by his medical condition), in order for him to receive speech therapy, he needs to have a 25% or greater speech delay when compared to his cognitive age -- REGARDLESS of his chronological age. That means that even though he is 34 months old, they don't care if he's cognitively testing like a 26 month old or 18 month old or 9 month old, I guess. If that's not the most absurd thing I've heard in a while, I don't freakin' know what is!
So...we were told at the meeting that although Lucas will be retested to check his cognitive age, he basically will not qualify for speech therapy. Hence, the county will stop covering speech therapy. Lucky for Lucas, the Debbie School will not discharge him from the program and he will keep his twice a week, 30-minute speech therapy sessions with his fabulous therapist, Angelique, who was just as horrified as we were about these developments. The scary part is that this will continue to be an issue...unless we can show Lucas has a significant delay, the state will not cover services -- speech, occupational, physical therapies. We were already forewarned that he will likely lose his physical therapy service once he graduates from the Debbie School since he can walk, kick, run, and jump, regardless of the quality of movement
It's a double-edged sword, I tell you. As the parent of a child with a disability, you want nothing more than to tell them to take their services and shove 'em, but you can't cut off your nose to spite your face. Lucas needs the therapies, he will need assistance, and we need to keep our pride and our egos in check at every meeting where his services come into question. As a parent, it's so difficult to remind yourself NOT to show any pride in your child's accomplishments, but instead, want him to "under perform" just so he can keep his services. It's counter-intuitive and frankly humiliating...the system sucks.
For now, we're proud of all the gains Lucas has made in all his developmental areas, and how he continues to be a favorite among teachers and therapists...it will serve him well. As for us, we will figure out how to get his needs met, even if we have to beg, steal, or borrow in the process. All that matters to us is where Lucas is headed...and that's up, up, up in the right direction!
Back to Monday's meeting...the Debbie School has been very good to and for Lucas as evidenced by his most recent testing. As of now, Lucas has about a 25% delay in speech compared to his typically developing peers...which is pretty stellar when compared to other kids with Down syndrome, especially because speech tends to be their greatest area of concern/delay. But wait, that doesn't matter. What does matter is that according to his most recent cognitive evaluation (which was done in May and we can assume has changed since), his cognitive level is BELOW his speech level which is a bad, bad thing in the world of qualifying for therapies. You see, even though Lucas has both 1) a qualifying medical condition, and 2) a developmental delay (caused by his medical condition), in order for him to receive speech therapy, he needs to have a 25% or greater speech delay when compared to his cognitive age -- REGARDLESS of his chronological age. That means that even though he is 34 months old, they don't care if he's cognitively testing like a 26 month old or 18 month old or 9 month old, I guess. If that's not the most absurd thing I've heard in a while, I don't freakin' know what is!
So...we were told at the meeting that although Lucas will be retested to check his cognitive age, he basically will not qualify for speech therapy. Hence, the county will stop covering speech therapy. Lucky for Lucas, the Debbie School will not discharge him from the program and he will keep his twice a week, 30-minute speech therapy sessions with his fabulous therapist, Angelique, who was just as horrified as we were about these developments. The scary part is that this will continue to be an issue...unless we can show Lucas has a significant delay, the state will not cover services -- speech, occupational, physical therapies. We were already forewarned that he will likely lose his physical therapy service once he graduates from the Debbie School since he can walk, kick, run, and jump, regardless of the quality of movement
It's a double-edged sword, I tell you. As the parent of a child with a disability, you want nothing more than to tell them to take their services and shove 'em, but you can't cut off your nose to spite your face. Lucas needs the therapies, he will need assistance, and we need to keep our pride and our egos in check at every meeting where his services come into question. As a parent, it's so difficult to remind yourself NOT to show any pride in your child's accomplishments, but instead, want him to "under perform" just so he can keep his services. It's counter-intuitive and frankly humiliating...the system sucks.
For now, we're proud of all the gains Lucas has made in all his developmental areas, and how he continues to be a favorite among teachers and therapists...it will serve him well. As for us, we will figure out how to get his needs met, even if we have to beg, steal, or borrow in the process. All that matters to us is where Lucas is headed...and that's up, up, up in the right direction!
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