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.

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!

The Specials

I just discovered a new UK-based documentary series -- "The Specials" -- following the lives of five young people in Brighton.  Their names are Sam, Lewis, Hilly, Lucy, and Megan -- the tagline for the series is "this is our world and we want to share it with you."  There are two episodes up on the website thus far, each of which is about 10 minutes long.  The website includes more information and video about each of the housemates. 

Why is this of particular interest to me? Because all of "The Specials" have a disability -- Down syndrome for all but Lewis who has William's syndrome.  They are a bunch of young, quirky, funny, and thoughtful young people making their way in the world...in so many ways, showing just how "normal" their lives can be, with the right support and encouragement.  In watching them, I realize how much potential Lucas has and how I fully expect him to be able to follow in their footsteps, and possibly reach even further.  I love that the producers are bringing their stories to the forefront...we've come a LONG way, baby!

Miracle Child

Although I haven't posted in a couple of weeks, that doesn't mean it's been quiet around here.  Lucas has had a number of great doctor visits which has reminded me of all the uncertainties of the beginning and how far we've come...

Our story starts with the lone frozen embryo from our one IVF attempt -- the embryo was transferred the week following my Mom's death when hope seemed lost that I could become successfully pregnant.  I'd lost three pregnancies, including a ruptured ectopic which required removal of my right tube so in what seemed like an impossible twist of fate, I was in fact pregnant and he was obviously determined to make his entrance.

Fast forward to October 15th, an otherwise beautiful day in South Florida, until we heard the words that would forever change our lives "we think he has Down syndrome"...I can still vividly remember those raw moments that followed...I don't EVER want to go to that place again.  After we'd had a chance to spend a little time with Lucas, in the early morning hours the following day, I looked up at Tom through my tears and said "but he makes me happy" and in that moment -- and every moment since -- it's that inexplicable, undefinable love and devotion that calls me to defend, protect, and adore our first and only son.  At every turn, Lucas has earned his "miracle" child title.  He survived the thaw before the transfer, he grew strong and healthy in my questionable emotional state/womb, and he arrived full of life, wonder, and determination.

Since that day, Lucas has been the exception and is defying the odds.  His VSD (hole between the lower chambers of his heart) closed on its own which is unheard of according to his cardiologist; his ASD (hole between the upper chambers of his heart) is so tiny, it will likely never need to be repaired via open heart surgery, again another "unheard of" phenomenon; his ENT just cleared him from needing tubes and said his hearing is within the "normal" range; a cervical spine X-ray to check for AAI (instability of the neck vertebrae common with kids with DS) determined his vertebrae are "normal" and thus Lucas and Daddy may continue their WWF rounds; he measures at the 50th percentile in both height and weight when compared to his typically developing peers (and is off the Down syndrome growth chart); his development in all areas continues to impress his therapists; and last but not least, he is one of the most loving and funny kids you'll ever meet.  Can you tell we're proud parents?!

In the end, we know Lucas has a disability and nothing will change that.  However, his disability does not define him and it has opened doors to people, places, experiences, and emotions, we would never have known if it wasn't because of it.  I don't know that I really believed in miracles until Lucas walked into my life; and every day with him teaches me we may all have limitations, but our possibilities are limitless.

First Week of School

Lucas is now a "Busy Bee" at the Debbie School.  I can hardly believe how easily he transitioned to this class as he begins his last year at the Debbie School.  Although he's in a new class with new teachers, they moved all the kids from the "Tigers" together so many of his friends are still the same, including his main squeeze, Cecilia.  Here he is with a few friends on his first day.  The second photo is of Lucas in mommy's sunglasses...he likes to try on my shoes too...hopefully he'll outgrow this phase ;)

Slip & Slide a la Beanie

"Tiger" No More...

Here's Lucas on his last day in the "Tigers" classroom at the Debbie School. Doesn't he look like such a big boy! He's pictured with one of the teaching assistants, Odalys, and with a few of his classmates who will join him in the "Busy Bees" class. The school is a mix of kids who are typically developing and those with special needs. Lucas' last year at the Debbie School starts Monday!

Happy Birthday, Daddy!

We celebrated Tom's 38th birthday yesterday with a lovely dinner of tapas and sangria at Chef Michelle Bernstein's Sra. Martinez in Miami's Design District. My niece, Kristine, turns 16 today so she and my sister joined us to celebrate the two Leos. We enjoyed the "Miami Spice" menu which included croquetas, tortilla Espanola, and some very tasty salads -- Tom loved the foie gras (duck liver pate) -- better him than me. We ended the evening with a simple cake and Lucas' favorite new song, Happy Birthday to You.

Lucas at 34 Months

Lucas is now repeating so many words that I can't keep track! It's very exciting. What's most interesting is now that he's talking up a storm, he's barely signing anymore. He still enjoys watching "Signing Time" but now he's saying many of the words, instead of signing them. He now asks for "Tatel" (otherwise known as "Rachel" the talent in the "Signing Time" series) and "sings" through about half of the theme song. His articulation is improving, but blended sounds such as "bread" still sound like "bed" and letters which are made in the front of the mouth such as "n" and "l" are difficult -- when you ask him his name now, he usually says "cas" -- again the "l" is a difficult sound for him to produce. At school, he knows most of his friends' names and can identify them.

Lucas is using the 3-word phrase "I want [eat or outside or TV, etc.]" throughout the day; often in a demanding tone. He's taken a real liking to the "Brown Bear" book series and says "I see [horse or cat, etc.]" as we read the story which is just starting to translate to the real world. He is learning his colors -- his favorites are blue, red, and purple and he can identify those correctly in about 75% of cases. We use colored bean bags with the name of the color on it to reinforce this skill. He's got numbers one to five down, and is learning to count to 10, although he tends to skip either seven and/or eight. We use a great online tool called "Starfall" where Lucas is learning his letters too -- he knows about 10 letters he can identify and say, such as d, b, z, v, w, m. His favorite words include "mom" "wow" "ouch" "yeah" and "no" -- not to mention "let's go". He is getting more and more independent by the day -- he knows what he wants all the time and is quick to tell you "no" if you're not doing as he says/wants. Lucas is starting to take off his shirt and pants, and gets aggravated when we try to help. He also likes to tell you "bye" if you're crowding him -- his little way of saying "piss off".

Lucas has been getting so much better at following commands. He now can often follow a two-step command -- without my asking him more than three times! He's liking playing with his friends more too and is initiating play.

Lucas is starting to "run" more and walk at a faster pace so he can keep up with us. He's also getting more proficient at catching a ball...he can usually catch a big ball and in about 1 out of 4 throws, he can catch a smaller (about 6/8" diameter) ball. We're going to pick up a whiffle bat to start getting him accustom to swinging and improve his hand-eye coordination.

His favorite play things (in addition to balls) are his safari animals, sea animals (in the tub), putting together 3-piece magnetic animal puzzles, doing matching games, and he now loves his Magna Doodle. He's starting to scribble using his thumb up and holding his colors more steadily (I didn't know this was a big deal, but it's a milestone -- no longer using the thumb down when writing). A source of continued frustration for us is blowing...he loves bubbles, but is often more interested in dipping the wand and pulling it out of the bottle than in actually blowing bubbles.

The potty training is still a struggle, but that's mostly my fault. We haven't had the time or energy lately to put in the effort (I'm feeling all kinds of guilt about it too). Lucas has asked to use the potty successfully a handful of times in the past few weeks, but we don't push it. I'm going to do a boot-camp of sorts (using the "Three Day Potty Training" method) before he turns three --I mostly want to experiment to see how he (and I) do (I will most likely need some Xanax before I attempt it since it calls for taking the child to the potty each time he starts to have an accident -- luckily, we have wood floors throughout).

I know I keep saying this, but it's amazing how much and how quickly they grow, change, and develop...so much learning taking place. There are days when I want to fast forward everything (like getting him out of Pull-Ups!), but then I realize, the time is going by way too quickly as it is. I think it's probably one of the reasons some people have other kids...to be able to experience all these amazing moments over and over again. I'm already missing the little bean he use to be, but loving the little boy he's becoming.

Panama City Beach

We spent a long weekend in Panama City Beach with our dear friends, the Blackfords. They rented a spacious, new, beach-themed condo overlooking the Gulf -- it was a 3/3 so we had our own bathroom and a comfy king-sized bed we shared with the kung-fu-kicking Bean. We had such a nice, relaxing time.

Highlights included lots of beach time catching up over beers, swimming in the warm Gulf water, Lucas jumping from the side of the pool (for the first time), the best tacos EVER at Bud & Alley's Taco Bar in Rosemary Beach, Tom's mango lobster tails and cilantro rice paired with a fabulous Shiraz Rob and Jenni picked up in San Francisco (they'd been saving it since their 10th wedding anniversary three years ago so we were honored), and watching the girls, Emma and Anabel (otherwise known as Lucas' entourage), playing and having fun with Lucas. The girls spent much of their time "catching" fish and collecting buckets of shells. Another fun fact is that Lucas has really taken to Rob...he'd already warmed to him quickly earlier this year, but this time Lucas would wake up in the morning yelling "Rob" throughout the condo and when he first spotted Rob in the mornings, he'd run to his arms...it must be Rob's magnetic personality!

Although it was a hellacious 9-10 hour drive each way, it was well worth it. More pics will be added to my Facebook account soon.