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.

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.

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!

Sunday, September 13, 2009

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!

Monday, September 7, 2009

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.