Day 24: How to Train Your Parents

Lucas was stuck on "The Lion King" for ages and we thought he'd never get over it, even months after he was banned from watching the movie (have you seen how violent it is? And what's with the Nazi references?). But alas, he has completely outgrown it. As a matter of fact, I reluctantly purchased a Simba Halloween costume which I had to return because he would have none of it.

Lucas continues to adore animals, especially those in the wild, which we support and encourage. That said, this summer friends introduced him to what has become his latest animated movie obsession "How to Train Your Dragon" -- in the last few weeks he's grown so fond of the movie that he decided this year's only acceptable Halloween costume is the loveable dragon "Toothless" or as he calls him "Toofess" -- if you haven't seen the movie, run don't walk to pick up the DVD...it's seriously that good and has a great message of coexistance.

As you can imagine, we've been searching high and low for a Toothless costume with no luck. In the meantime, inspired by Lucas, Tom and I decided to build on the theme and picked up Viking costumes, which we debuted at Tom's sister's Halloween party this past weekend. Here we are as an ax-wielding-pigtailed blond and a too-short-tunic-long-haired-wig-wearing brut...we were a riot and actually kind of frightening. But, I digress, with the clock ticking we've now given in to the only available option: make Lucas' costume ourselves! We will bring the little sewing talent we share to help our son live out his Halloween fantasy.

Isn't this what parenting is all about?!

Day 22: Take 2

Lucas' birthday celebration continued in Chehalis/Centralia to visit his Nanny, Auntie Obin, Uncle D and cousins, Kellen and Brendan. After a sleepover at Nanny's (who baked a tasty cake and cupcakes), Lucas loved blowing out his six candles twice and opening presents. On a chilly but somewhat sunny fall day, we all headed to one of Lucas' favorite spots -- Lattin's Farm -- to feed and pet the farm animals, run through the maze, and sample the apple cider. Daddy enjoyed the apple slingshot and even got close to the target.

Day 16: She Said What?!

My husband recently was with Lucas and my mother-in-law at her long-time neighbor and friend's house. The neighbor is a lovely woman, with a great sense of humor and not a mean bone in her body -- although Betty* is nearly 70 years older than Lucas, they happen to share the same birthday.

She hadn't seen Lucas in some time and was commenting on how big he's getting and out of nowhere she added, "he doesn't have much of that retarded look." According to Tom, his Mom was stunned and they were both at a loss for words. We know she didn't mean any harm, and honestly, she just doesn't know any better. As I mentioned to Tom, Betty is from a generation where its acceptable and common place to call people with Down syndrome "monogloids."

It's at times like these that we as parents realize how far we've come, but how far we still have to go. Tom made a decision in that instance to not try to teach an old dog new tricks, but instead to reserve and focus his energies on educating those coming up in the world and those who raise them. Words matter and they can hurt...and ultimately, every one of us has a choice to make in the language we use and who we choose to be in the world.

*Name changed to protect her innocence.

Day 15: Happy Birthday, Lucas!

Kicked off Lucas' birthday week with a small gathering, packed with BIG balloons and lots of love and joy.

Happy 6th birthday to my loving, happy, wonderful and wonderous little man. We are so lucky to be your parents. We look forward to seeing how you continue to amaze and inspire us.

Day 14: Full Circle

Tom's stepmom, Ann, was very gracious and asked both Tom and his sister, Robin, to choose a charity for gifts (in lieu of flowers) in memory of Tom's dad. Of course, we chose an organization that works on behalf of individuals with Down syndrome. It was obvious which one we would choose -- I was in the middle of blogging about this non-profit when I got the call about Ken's passing.

When Lucas was about 1 year old, I stumbled upon a group called the Down Syndrome Research and Treatment Foundation. They had a most radical and ambitious idea: finding treatments to improve cognition -- including learning, memory and speech -- for individuals with Down syndrome.

Since it was founded by parents of kids with DS less than 10 years ago, the DSRTF has become the leading private funder of some of the most cutting-edge research in Down syndrome cognition research. It is incredibly meaningful to have those who loved Ken and his family help support an organization that could have a direct impact on his grandson's life.

For as many wonderful, nobel organizations that exist in the US, words cannot describe what it means to us to be tied in such a personal way to an organization that could help fund a discovery that could so profoundly affect our son's quality of life.

Thank you, Ann, and thank you, Dad, and all who give in his memory, for this gift.

Day 12: Remembering Poppa Kenny

Last night while working on my blog post, we got news that changed our life. We learned Tom's father passed away, seemingly from a massive heart attack. At 63, he was too young and full of life (he'd add, piss and vinegar) to have his life cut short. We are saddened by the sudden loss of a beloved husband, father, grandfather and friend.

 

Kenneth Rhyneer (Ken or Poppa Kenny as he was known to his grandkids) was born in St. Louis, one of 10 kids. He served in the Air Force and then devoted a 45-year career to PPG, lastly as a supervisor -- Tom use to kid that his daddy really was a glass maker. He was married to Gwen in 1970, and later married Elizabeth (Ann) in 1990. Ken and Ann settled in Decatur, Illinois.

 

My fondest memories of Ken are from a few years back when we visited their home on Constant View Drive. The house itself is modest, but the backyard was recently selected to be part of a garden tour because it is incredibly spectacular. Ken and Ann poured so much love into the space, filled with blooming flowers, a koi pond, bird houses gallore, a variety of critters, a huge wood deck and a massive above-ground pool that made for perfect lazy, steamy summer days. They also built an expansive garden where they grew a ton of different vegetables, including a favorite of both Ken and Lucas -- tomatoes.

 

Here's how I will remember Ken: He loved driving his pick-up truck, so much so he drove it all the way from Illinois to Miami for our wedding. He enjoyed sitting on the back porch, smoking a cigarette and drinking his morning coffee. A favorite pasttime was watching baseball with his dog curled by his side. An avid fisherman, he passed this same love to Tom. He was a hard worker, devoted to his craft and his company. Always ready with a smile or laugh, he had a wicked sense of humor. He was very handy and could build or fix just about anything. Passionate about his garden, he spent hours tending to it, while picking and eating tomatoes right off the vine. He loved his family, especially the many grandkids who will miss his silly antics. He was kind and thoughtful...although he was a Bud Light enthusiast, he kept chilled microbrews stocked just for me.

 

We love and will miss him, and are comforted by many good memories.

 

Lucas and Poppa Kenny during our last visit with him and Ann, in October 2010.

 

Day 10: Countdown to 6

Last night, I finally created an "October" calendar for Lucas so we can countdown to 2 exciting days this month: 1) his birthday on the 15th, and 2) Halloween!

Today, he counted down to Tom, me and his nanny (on separate ocassions) that there are FIVE days left until his 6th birthday. We need to get our act together -- we have plans with our family for the following weekend, but will mark his birthday, this coming Monday, with a small gathering.

As for Halloween, Lucas can't decide on his costume...Simba won't due because he refuses to wear the head gear, so I'm not sure that the alternative (Curious George) will fair any better. We'll see how this pans out. He's more than excited about the notion of trick of treating!

Day 9: Shut it Down!

Before I say another word, this isn't about POLITICS!

It comes as no surprise that Ann Coulter tweeted the following:

“Been busy, but is Obama STILL talking about that video? I had no idea how crucial the retarded vote is in this election.”

Seriously..she used the word "retarded" in this context. I think the most conservative of Republicans would agree that Coulter loves to serve as a lightening rod for her party, but she's really gone too far this time.

I take great pride in having turned many a frequent offender of using that word into a disciple of the "spread the word to end the word" campaign. One person at a time. With all of us in the Down syndrome community (and disability community at large) rowing in the same direction, we are creating a shift in the use of the word (or lack thereof). Undoubtedly.

Unfortunately, there will always be people like Ann Coulter who don't care who they hurt at the expense of their agenda, and in her case, what she has to do to keep her shock status symbol. It's pathetic. Regardless of how many times we come up against ignorance, I'm convinced there are enough decent human beings in the world that we will eventually shut this word down.

I was inspired to go on my rant by my fellow blogger and friend, Lisa, who turned me on to this post by another parent in our community. It was the featured and recommended TODAY moms' blog article. Bravo, Dan! Don't miss it. Dad Demands Apology for Use of "Retarded"

Day 8: Dark Side of the Moon

For no apparent reason, Lucas dropped his pants at school today and mooned his class. Yeah, it happened. Needless to say, his teacher was mortified. Here's the thing: If Lucas was a typical child, it would be chalked up to being a 5-year-old, but because he has Down syndrome, everything is associated with his disability.

That sucks.

Our nanny then told us the same teacher (from his "self contained" class) told her "his parents want him to spend more time in the general education class, but he's just not ready." I can't begin to explain how that totally and completely frosts me. She's a new special education teacher who apparently believes and was trained that special education is indeed a place for kids with disabilities, instead of the more modern approach of it being a "service" that is offered to help support and encourage learning among their typical peers. Tom is calling the Ombudsman Office to seek counsel about what our recourse may be as we challenge the school system's mentality, while I seek help and guidance from other parents who have been there and done that in this school system as well as counsel of my dear friend, Michele, who is a champion and educator of kids with disabilities.

I see Lucas' future bright and full of possiblities. I see it clear as day. Those who know me know I'm not a "pie in the sky" kinda girl. I'm a realist, so my point is, this isn't wishful thinking (well, maybe a little), but what I know to be true in my bones, and what Lucas is capable of achieving for himself.

What I don't see is how we're going to get there...and that often scares me. BUT...we will press on and challenge every stupid ass preconception. How can we not? Lucas' life and future depends on it. Keeping my eye on the prize helps me find perserverance, strength and courage I didn't know I had.

Day 7: Lucas' 1st Puget Sound Buddy Walk

I was stunned and humbled to see I was able to double my original goal, raising more than $1,000 in a week to support the work of our local Down syndrome organization and the National Down Syndrome Society.

Team Bean recieved nearly 30 individual gifts from friends and family all over (including our friend, Ron, in Geneva), and tied for 3rd place among fundraisers. As a result of a last-minute ask on Facebook, one of the most surprising and largest gifts came from my old boss and friend, John (who with his fearless red pen was instrumental in shaping my writing). As a parent of a child who directly benefits from this generosity, I am deeply moved and so very grateful to you all!

The day started at Sara's where she hosted brunch for a group of families who all have 5 year olds and have welcomed us into their pack. We then headed to the Seattle Center to enjoy the walk and festivities on a picture-perfect fall day. Couldn't think of a better way to spend the day then with friends, all celebrating Lucas, our kids and others like them. Here's to many more years to come!

 

 

Day 6: Adventurer

Lucas went on his first hike today to one of Tom's favorite places...Twin Falls, near North Bend, where Tom was living when we started dating. It was a warm, sunny fall day and Lucas loved getting out in nature...exploring the terrain, the trees, the rocks, and weaving his way through the trail. After a stop along the river, Tom suggested we turn back, but Lucas wouldn't have it...he was moving ahead of us, wanting to take in everything there was to see and gaining distance to our destination. But, before too long though, he wanted a piggy back ride so we headed out.

 

In the peace of the hike back to the car, I reflected on the gorgeous day and scenery, feeling really blessed to be there with my boys in that moment and time. I struggle to live in the "here and now" even though it's always so blissful when I stop myself to do so. Tom carried Lucas on piggy back, as I followed. It always warms my heart to see the deep bond that exists between them...anyone who has spent any time with Tom and Lucas knows they have a language all their own and a soul connection. In case you're wondering, Lucas absolutely favors his father over me, and I've learned to live with it.

 

At the end of the day, I told Tom, "Coming here has made me realize I want to instill a sense of adventure in my son." To me there are few things more remarkable then exploring a new place, meeting new people and learning/doing new things. Lucas has earned a fair number of frequent flyer miles, and today we vowed to do our best to continue opening Lucas' eyes up to all there is to see.

 

These were taken along the South Fork Snoqualmie River.

 

 

 

 

Day 5: Shameless Plug

October's not only Down Syndrome Awareness Month with Buddy Walks in every major city, but it's also Lucas' birthday! On October 15th our little bean will be SIX...I'm really starting to get what parents mean when they say, "before you know it, he'll be headed for high school."

Since Lucas was born, each year, I plan to ask friends and family -- scattered all over the country (and beyond) -- to donate to the Buddy Walk in honor of Lucas (and in lieu of presents)...but I can never seem to get my act together.

A couple of years ago, we assembled a team of friends for the national Buddy Walk in NYC, it made for a very memorable experience and a wonderful fundraiser for the National Down Syndrome Society -- our team raised more than $2,500.

This year, in a last-minute attempt to turn things around -- with a week to go before our local Puget Sound Buddy Walk -- I created a fundraising page and blasted out emails. Now, there's less than 48 hours to go before the event and I'm at 65% of my goal of raising $1,000 in honor of Lucas. A big THANK YOU to all who have donated to support the cause! If you'd like to pitch in to help our local community, with a portion of funds going to support the national organization and advocacy on behalf of individuals with Down syndrome, vist SUPPORT TEAM BEAN

On behalf of Team Bean, we appreciate your consideration, kindness and friendship!

Look for pictures of the walk in an upcoming blog post.

Day 4: It's a service, not a place...

I'm talking about special education. Tonight we attended open house at Lucas' school. We had the distinct pleasure of splitting our time between two classrooms. The Seattle public school system doesn't have the resources for "inclusion" or "mainstreaming" so instead kids with disabilities get a "seat" in a general education class and get sent off to the "self contained" classroom for the bulk of their day. I'm thinking "how can shuttling ANY 5 year old between two classrooms be a good thing?!" He doesn't get to fully participate or make friends in either one.

In Lucas' case, he typically spends about 30 minutes in an academic setting in the general education classroom and the rest of his 6+ hour day with a smaller group of kids with varying disabilities in the special ed class. It totally and completely SUCKS! There are a handful of parents I know of who have been successful in having their kids fully included in the public school system here, but it hasn't been pretty.

In Miami, Lucas was in an inclusion class which consisted of half kids who are typically developing, while the other half had an IEP (individualized education plan), with a teacher and an aide leading the class. It was definitely the right environment for Lucas, where he could learn alongside his typical peers and have positive role models for academics and behavior.

Back in Seattle, we've made our objections to this backward system known to the teachers, principals and anyone who will listen to us, and we expect Lucas will spend increasingly more time in general education. We expect it to be at least 50% by the time we reconvene for a follow-up IEP meeting in about 2 weeks. I predict more bargaining ahead. I'm trying not to get too bent about it because if the school doesn't comply with our desire and Lucas' need to spend more time in general education -- which by the way, he's ready for academically -- we are going to find a school who will work with us and who understands the need for integration. This isn't 1964 people.

As tough as it sometimes gets, I remind myself of all who came before us. If Lucas was a member of my generation, institutionalization was the norm. At some point, parents stood up and said "enough is enough" and we've been fighting tooth and nail for more ever since...until our kids have the same respect, the same opportunities, and the same treatment as their typical peers, we won't back down.

Day 3: A Little Help from My Friends

Although Seattle is familiar to us in many ways, we are new to our local Down syndrome community. Fortunately for me, I reconnected with a friend, Sara, who coincidentally has 5-year-old twin boys who just started kindergarten, including one with Down syndrome named Lukas (Luke). Small. World. Many believe there's no such thing as a coincidence...and the longer I live, the more I agree.

The first time I met Sara, we were paired together on a wish for the Make-A-Wish Foundation. Sara was so likeable -- warm, creative, engaging and always so outgoing and authentic -- I wanted to be her friend. Little did I know this casual friendship would blossom when we found each other again after both becoming mothers to kids with DS.

Sara's generosity knows no bounds. She has been the gateway to all things Down-syndrome related in our new-old city, from including us in events, to welcoming us into her circle of friends to connecting me with moms willing to share their experiences with the public school systems in the area.

Most importantly, despite juggling twins and managing her own interior design firm, Sara has always answered my call. More than just tirelessly lending a supportive ear, she is genuinely invested in helping ensure Lucas has the resources he needs to be all he can be. I couldn't ask for a better friend.

Like so many parents who get a Down syndrome diagnosis, when Lucas came into the world, we were numb, frightened and felt helpless. In those early days we never could have anticipated the many blessings awaiting us. The gift of friendship and community is near the top of the list.

Admittedly, there are days the load is more than I can carry, but I get by with a little help from my friends...

Thank you Sara and the Down syndrome community (in life and online) of courageous, generous, tenacious, supportive parents with whom we share this incredible journey.

Day 2: Down Syndrome 101

For starters, here are some basic facts about Down syndrome.

• Down syndrome occurs in one in approximately 700 live births. 
• It is the most frequently occurring genetic condition that causes delays in physical and intellectual development. 
• People with Down syndrome have 47 chromosomes instead of the usual 46. The medical term for DS is Trisomy 21 because it results in a 3rd copy of the 21st chromosome (see a karotype below).
• Down syndrome is caused by an error in cell division called nondisjunction. We know it occurs at conception, but don't know why it happens. 
• The incidence of Down syndrome increases with advancing maternal age -- this was my case since I gave birth at age 39 -- however, 80% of children with Down syndrome are born to women under 35.
• Down syndrome is named after Dr. John Langdon Down, the physician who first described characteristics associated with DS in 1866.
• There are more than 400,000 people with Down syndrome living in the US.
• Early intervention, supportive therapies, an enriching home environment, quality health care, and positive support from family, friends and the community help people with Down syndrome achieve their maximum potential and lead happy, fulfilling lives.

Today, many adults with Down syndrome are integrated in their communities and contributing to society by working, attending college, volunteering, getting married and pursuing their lives dreams. With our collective love, support, and encouragement, Lucas will be one of them!

31 for 21

October is a BIG month for us...on October 15th, Lucas turns SIX! Holy moly!!! Seriously, where does the time go?! I feel his precious childhood slipping through our fingers so we're ensuring we do everything to make it as awesome as possible!

October is also Down Syndrome Awareness Month. This year, I'm participating in a movement that has grown tremendously over the last few years...31 for 21. It's a challenge to all bloggers in the Down syndrome community to raise awareness about DS by blogging every day in October (31) for Down syndrome (Trisomy 21/T21).

I figured I needed "something" to spur me to get back to writing about our life with Lucas, especially given this year of life-altering, hair-raising change! So, here I go...

Check back tomorrow and every day this month for facts about Down syndrome and updates on Lucas, our family and our life in the Emerald City.