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!

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):
  • 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
As I mention every year and as is true of most kids with Down syndrome, his language continues to be the slowest area of development...however, he continues to grow his vocabulary and is mostly speaking in 4-6 word phrases or short sentences. He's started using pronouns and connectors, such as "of" and "on" and even "and"...he often strings a bunch of words together to form a "Lucas" sentence so needs a lot of reminders to "use all your words." His articulation is also improving and now he's understood by most people, most of the time...the "hard" sounds such as "g" and "k" still allude him...but he's showing improvements there too as he's finally able to say things like "cat" clearly. He's asking more "what" "where" questions. He knows the days of the weeks -- his favorite is Friday which means "pizza and a movie" as he'll remind us every Friday morning.

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!