Down syndrome and the impact on siblings: Focus on Dr. Brian Skotko

A friend sent me this article (click here, Mom) about my beloved Brian Skotko, MD, MPP and I knew I just had to share it with our blog readers.  I have such a profound respect, admiration and appreciation for this man who has devoted his career to improving the lives of people with Down syndrome.  As a brilliant physician and Harvard professor, Skotko spends his days researching, advocating, and celebrating individuals with Down syndrome.  What inspired this passionate focus?  His younger sister, Kristin Skotko, who has Down syndrome.

 My affinity for Dr. Skotko results from the fact that we were born into the same circumstance - both of us have a sister with Down syndrome - and he "gets it".  In a world where we feel like we have to constantly defend our siblings against society's unfair misconceptions, it's refreshing to find someone who is enlightening people to what Down syndrome truly is - and he articulates it so beautifully. 

 YES!  Exactly!  Thank you, Dr. Skotko.  Society may look at my sister and others in the exclusive chromosomally enhanced club as genetic blunders who are somehow inferior to those of us who are sporting only 46 chromosomes, but I've spent my whole life around people with Down syndrome and I beg to differ.  A person's value is not measured by his or her IQ score. 

I'm not the only one who feels this way.  Dr. Skotko did a study in 2011 and look what he discovered:



I frequently receive emails and comments from parents whose baby has just received a Down syndrome diagnosis and one of their primary concerns is how it will impact the child's siblings.  We brought Josie into our family and I knew her extra chromosome would be a special gift to her future siblings.  It would allow them to see the world from a totally different perspective.  It would allow them to step outside the mainstream outlook that focuses on academic, career, and monetary achievement; in Josie's world, the focus becomes kindness, unconditional love, and slowing down to appreciate small victories and less superficial sources of happiness. 



Maybe the "limitations" that accompany Down syndrome are not limitations at all.  Instead they remove obstacles that impede our ability to accept ourselves and be happy.  Prior obtaining her current job in the café, my sister, Leanne, was in a sheltered workshop environment where she packaged screws and other small assembly items.  She was paid based on her productivity.  And it didn't matter if her paycheck said $4.63 or $15.25, she announced it with enthusiasm as though it rivaled Bill Gates' paycheck and she took great pride in her work. 

 

Leanne can't golf like Tiger Woods.  She can't play basketball like Michael Jordan.  She can't design technology like Steve Jobs.  She can't sing like Mariah Carey.  She'll never make the list of the Forbes Wealthiest People.  But she could care LESS.  She delights in her Special Olympics events and to quote Brian Skotko, she "celebrates a third place victory with as much gusto as a gold medalist".  She plays her CD's on her boombox and sings at the top of her lungs.  She will never win a Grammy and she's quite fine with that.  And she wipes tables in a café and she makes dog biscuits and she collects a paycheck that would be considered pocket change - pocket lint - to the Forbes Wealthiest People.  But she's proud of an honest day's work for an honest day's pay and she's HAPPY.

For more on this study, click on the "Living With Down syndrome" tab on the top of the blog - it's truly enlightening.

People with Down syndrome are no longer isolated, and locked away in institutions.  Thanks to my parents' generation, they live at home with their families, receive an education, and make a valuable impact on their communities.  And today, thanks to the work of Dr. Brian Skotko and others who share his passion, individuals with Down syndrome receive even more medical care, therapies, and educational resources that allow them redefine the potential that their futures hold.



With more opportunities to be included in an educational and employment setting - to be included in and appreciated by society as a whole - the ignorance that exists about Down syndrome being defined by limitations and suffering is being replaced by a genuine appreciation for the contributions that individuals with Down syndrome make on the world.





 The best teachers don't lecture at us; they show us.  The best way to learn is not to hear or read about a subject; it's to experience the subject.  Leanne has been the single largest source of information about Down syndrome and the implications of the diagnosis that I could ever tap into.  I've been a student in her class since the day I was born.  And while not everyone has had the experience of growing up alongside an individual with Down syndrome, I believe that everyone who is fortunate enough to have crossed Leanne's path is a little more enlightened to what Down syndrome is.

 

And thanks to people like Dr. Skotko, more people can learn to appreciate the diversity of the human condition and realize that there is more than one path to a purposeful and fulfilling life.



The Top 4 Moments from Christmas 2014

Greetings blog readers!  So glad you've decided to join us in 2015!  We've got so many good stories from Christmas to share with you that I considered breaking this into two posts.  Then I had a realization and I said to myself, 'Self, you know you'll have every good intention of writing a second Christmas post but then life will resume as usual and the chaos of day-to-day life will impede your good intentions.'  So instead, we will have one really long post just bursting with fun pictures like this one:

 Ah yes - we got to meet Leanne's new gentleman friend, Mike.  But more on that later...

On Christmas Eve, our family set out towards Mama Hop's house.  It's about a five hour drive and with little ones, that is a daunting prospect.  But we mapped it out around naps and we planned some stops to eat and to use the restroom, and it wasn't bad at all.  We even dropped in on Travis' grandparents along the way.  All of my grandparents are deceased so I always tell Travis how blessed he is to still have such vibrant grandparents.  Our children are fortunate to be able to get to know their great grandparents.  And much to Merryn and Josie's delight, Travis' grandma even had some "delicious" (direct quote from Josie) Christmas cookies for them!

 Grandmas and cookies go together like peas and carrots.  When we arrived at Mama Hop's house, she offered the girls their second helping of Christmas cookies.  Mama Hop even made hers to resemble her Siamese cat.  Merryn was impressed, although, Josie looked a little skeptical:

 Mama Hop and Aunt Leanne got right down to business doing what grandmas and aunts do while Travis and I took a load off and sipped "egg nog".

 On Christmas morning we woke up and put on our glitzy Christmas attire and we took some pictures before said Christmas attire got wrinkled, stained, and torn.  As usual, my children were perfectly posed little angels...eh...Well, one out of three will have to do:

 After mass we got down to businesses opening Christmas gifts!

 There's nothing quite like the excitement and joy that kids exude on Christmas!

 There's also nothing quite like the pride Leanne takes in distributing the gifts she bought for everyone.  Look at this - she painted a vase especially for Mama Hop:

 This is one of my favorite photos from Christmas.  Leanne presented Travis with new socks, proudly announcing that she worked hard and paid for them with her own paycheck.  She was filled with as much pride and enthusiasm as if she was handing him the keys to a new Mercedes.  No gift from Leanne is complete without a hearty helping of Christmas affection.  No Siree - nothing says "You're the world's best brother-in-law" like new dress socks and squeezing the life out of him.

The next few photos are devoted to Lydia.  If there is a Guinness Book of World Records entry for "Most Smiley Baby," her picture should be next to it:

Lydia loves the holidays.  Heck, Lydia loves every day. 

 She blooms where she's planted and she welcomes each day with a pleasant outlook.  She is a joy to have around...with the exception of one liiiiiitle vice...

She has an affinity for hair pulling.  You never know when she's going to strike nor who her next victim will be.  But watch your back because she's coming for you, with a vengeance!  Let's see how long it takes Travis to notice that the next assault is taking place right under his nose...

 He can't help but be oblivious to the complicated dynamics of hair; heck, he hasn't had hair for a good decade.  And just look at that lock-tugging grin that Baby Lydia is sporting.  She's quite proud of herself! 

After we opened gifts, Travis FaceTimed with his brother and then we had the kind of delicious prime rib feast only Mama Hop can create!  I didn't take any photos of the meal because we were too busy inhaling our food to stop and photograph it.

 

Though our visit with Mama Hop was brief, it was lovely!  It was nice to get out of the condo and be in a spacious and festively decorated home.  While it's hard traveling with children, it was worth it. 

 

Now on to the second half of our big, fat, Christmas blog post. 

 

My Top 4 favorite moments from Christmas 2014:

 

 4.  Merryn spreads Christmas cheer at the condo: During her recent visit, Mama Hop gifted Merryn with an "art box" (a box full of art supplies).  She also taught her how to cut out paper snowflakes and other fun things.  Merryn has been diligently working on her handwriting so she decided to merge these two interests and make homemade Christmas cards for the fellow residents of the condo.

Merryn made a custom card or each of our neighbors, carefully writing a personal greeting on each one.  Then she would prance down the hall and tape the cards to the residents' doors.  A couple days before Christmas, our doorbell rang and it was "Mr. Don," the elderly gentleman who lives next door.  Mr. Don said "Which one of you made me the Christmas card?"  Merryn proudly took credit and Mr. Don handed her a gift bag filled with peanut brittle.  Merryn beamed.  I did, too.  It was apparent that Merryn had added a bright spot to Mr. Don's Christmas.  Upon our return from Mama Hop's, we discovered that several other residents had left gifts and cookies outside our door for the girls.  No doubt, a little construction paper with a child's scrawl can put anyone in the holiday spirit!

 

3.  Josie spreads Christmas cheer at church - The seven of us attended Mass together on Christmas morning and there was an older woman sitting alone in the pew behind us.  Josie was really fixated on the woman.  At first, Josie reached up and grabbed the lady's hand while she was kneeling.  It turned into Josie lurching over the back of our pew to wrap her arms around the lady's neck and kiss her cheek!  As I apologized and tried to pry Josie off the lady, she said "No, it's fine!  My sister has special needs.  Your daughter just made my Christmas!" 

 

I grew up watching Leanne have this type of impact on people - her warm smile and friendly greetings could melt a heart of stone.  It's almost as if she has a sixth sense, detecting when people need a little extra affection to boost their spirit.  In my experience, this extra dose of charisma is frequently found in an extra chromosome and it is just one of the many gifts that our chromosomally enhanced friend's possess.

2.  Leanne introduced us to her new gentleman friend - Ok, so I'm not supposed to push this issue as far as Leanne's "boy friend" (two words) is concerned, but I'm nothing if not pushy and Mike is such a dreamboat that I'm ready to kick off my heels and dance at their wedding reception already!  Where did Leanne meet this new friend of hers, you ask?  Well, on the van to her day program of course.  Remember a few months back when we told you about the diva and her van butler (to read that post, click HERE)?  At the time we didn't have his permission to blog about him so we concealed his face and identity. However, we told his mom about the blog and she is all in favor of us letting our readers get a glimpse into the wonderful world of Mike.

Everyone should be fortunate enough to get to know Mike.  He is kind, considerate, friendly, smart, and a complete gentleman.  I loved every minute I got to spend with him.  I even filmed a few of our conversations, including a really insightful chat we had after Mike announced to me that he has Down syndrome. 

 

 

"I love Down syndrome"

Mike's remarks about Down syndrome and the positive attributes people with Down syndrome possess, reminded me of another blog post.  In this post (click HERE, Mom) I reference this article written by George Will, whose 40 year-old son with Down syndrome was celebrating a birthday.  Mr. Will discusses his son's "gift of serenity" and "underdeveloped entitlement mentality" saying that if his son is happy exactly as he is, who is anyone else to consider him inferior?  It's not uncommon to encounter the phrase "suffering from Down syndrome."  And to anyone who mistakenly believes this notion, I'd like for you to meet handsome Mike, pretty Leanne, and smart Josie.  There's not an inkling of suffering in sight! 
 
1.  Working girl struts her stuff - This year, Leanne got a job at a café that's in a large office building.  This job is a big deal because it provides Leanne with an opportunity to utilize her talents, acquire new skills, and interact with the community.  Not only does she earn a paycheck but she also receives an intrinsic payoff; pride that results from demonstrating her abilities.

I was dying to see Leanne in action so Travis and I drove out to the office building that houses the café and we waited for Leanne to assist us.  Travis was parched so Leanne fetched him a cup and filled it up at the soda machine.  Then she wandered over to the cash register.  Travis and I exchanged skeptical glances - counting currency has never been a strength of Leanne's - not to mention all of those complicated buttons!

Slowly and methodically, Leanne entered the sequence of keystrokes required to successfully complete the transaction.  I was in awe.  Of all people, I should know not to underestimate my sister by now.  My astonishment was quickly replaced by an overwhelming sense of pride and I literally floated out of that building so eager to recount the story for my mom!

That's my sister, y'all!  She knows how to use the cash register!  She.  Is.  Amazing!!!! 

 

We hope all of our blog readers enjoy a healthy and prosperous 2015!

 

The Top 10 Reasons Why We're Boycotting Christmas Cards This Year

As the Christmas cards start rolling in, I am touched that we have so many friends and family who care enough to include us on their Christmas card lists.  I marvel at the fact that they were able to locate us, given our nomadic lifestyle.  And I am stricken with a twinge of guilt, that we have not reciprocated the holiday spirit in the form of an adorable photo on a Shutterfly card, delivered by the mail carrier.  So for all of you who standing next to your mailboxes, shivering in the cold, anxiously awaiting the arrival of our annual holiday card...go inside.  It ain't happening in 2014.  Please accept this Top 10 List not a spattering of excuses (I prefer the term "reasons why"), but as a compensatory gesture for the disappointing holiday card void in your mailbox.  Presenting:

The Top 10 Reasons Why We're Boycotting Christmas Cards This Year:

(Ok, so "boycotting" is a strong word.  But what fun is a blog without a little hyperbole?  Just go with it...)

10.  We had a baby - Ah yes, people do this every day.  But Lydia came via C-section - a major surgery which equates to a six week recovery. 

 On top of that, Lydia is our third baby.  And even though she's the most delightful baby (she truly is!), it's still an adjustment going from two to three.  I'm still not sure I've got a handle on it.  But hey - fake it until you make it, right?

9.  We moved...again - I always laugh because my mom gets out a pencil and paper to reply to an email (she does!  I couldn't make this stuff up!)  I actually got out a pencil and paper to tally how many times Travis and I have moved since graduating college and getting married: we have had seven (going on 8) residences in 12 years!!!!  I've blogged about this before: Travis works for a global company that has afforded us many fun and exciting opportunities to live in different places.  Our most recent stint in the Tundra lasted just over a year. 

Basically, three months after having a baby, it was time to stick a "For Sale" sign in the yard, pack up our belongings, and meet with a realtor in a new state to find a new residence so Travis could start his new position.

 8.  Condo Life - The plan was to travel south to our new state, meet with a realtor while my mom and sister were trapped in a hotel room with 3 kids, see every available house on the market and purchase one...within a 48 hour window.  We tried.  We did.  We saw every single listing by every single broker...we navigated through the FSBO's...we even brought in a contractor to bid on renovating current listings.  I'm pretty sure if our realtor never saw my face again, it would be too soon.  And ultimately, we ended up in a two-bedroom condo.  Literally.  Five people in a shoebox.  It's a lovely little place with a view of the golf course.  Here is our family room:

 Here is the girls' bedroom:

 Here are the girls in our bedroom:

 This completes the tour of our condo.  You can literally stand in one spot and see the whole thing.  We go to the grocery store almost daily because we don't have the space to store an excess of anything.  In fact, the our second shower is housing boxes of diapers, baby wipes, paper towels and toilet paper because there's no place else to put those things. 

All hands on deck when hauling in the groceries.  Mother Hen helps out by pushing a cart and Baby Lydia serves as a door stop.

 It's actually a very amusing experience - I equate it to moving into a nursing home.  We are the youngest residents by a good 40 years.  And the stories I could tell about our neighbors!  Boy!  But I won't because I'm sure they could tell some stories about us.  And I'm sure many of them raised much larger families in residences that weren't much larger than this without complaining.  There's so much to admire about that generation.

And as cozy as this place is and as cluttered as it gets, I'm pretty sure the lack of personal space, storage, and various other single-family home amenities will give birth to endearing memories.  Some day we may even laugh about that one time we lived in Shady Pines. 

7.  Building a Home - After an exhausting search for existing homes, we came to the conclusion that building a home was the best way to meet the needs of our unique family. Both of our parents built homes when they were our age and the timing just seemed right.  We were fortunate to find a nice lot in a great location/school district.  

 Little did we know what an overwhelming experience building a home is.  Especially for Little Miss Indecisive, here.  What kind of door knobs, faucets, light switches do I want?  Huh?  Am I supposed to have an opinion on those things?  Why are there so many choices?!  What am I supposed to do with these three little kids while I meet with the lighting expert in a showroom full of breakable glass fixtures that just beckon exploration from inquisitive toddlers?!

 Even our realtor asked Travis if he felt like I was ready to take on the challenge of building.  Nothing like having your mental health status and stress coping mechanisms questioned by someone who has known you for all of two weeks!  It's been a busy year, Lady.  Admittedly, my acuity and composure aren't what they once were. 

 Ah but here we are, pouring all of our energy into creating what will ideally be our last residence before we find ourselves buying a pine condo...or at least until we buy our retirement condo in Florida.  And when it's finished, it will be so awesome.  Even more appreciated in light of the fact that we've spent the 9 months prior living in a glorified hotel room. 

6.  Pink Eye - So yes, all of the aforementioned things happened and I still had every good intention of creating and mailing Christmas cards.  Granted I do not have all of my photography equipment with me here at the condo (most of our belongings are in storage until our house is finished), I still have my camera and a few cute kids so I figured we could pull something off in time for the holidays.  Then Thanksgiving rolled around and things started to unravel beginning with pink eye.

Yes, I literally did not know what I was seeing when Merryn came into my bathroom where I was drying my hair one morning with all this gunk all over her eyes.  I quickly texted a picture to a dear friend who is an expert in all things medical and she diagnosed it right away: pink eye.  Ewww!  Really?!  She must have gotten it at the gym daycare the day before.  There's all the excuse I need never to work out again...

 5.  Staples - a few days after our doctor visit for pink eye, Merryn experienced another doctor visit - this time it was for a gash in the back of the head that she suffered while she was goofing off after bath.  She fell backwards into the shelves that store our toys in the family room.  I thought she was fine and I cradled her until she calmed down.  Then she sat up and there was blood all over my sleeve and all over the back of her shirt.  Off she went to the urgent care where she received 3 staples in the back of her noggin.  Get this, folks: she didn't even cry!  She's one tough little mama!

We'll spare you the gory photos in favor of this super cute photo.  You're welcome.

4.  Croup - Just when we thought we'd achieved our medical excitement quota for the week, Josie decided to take a turn.  She had not one, but two, ER visits for what was ultimately diagnosed as croup.  She had a fever and a horrible wheezing sound accompanied by a barking cough that sounds like a seal's mating call.  And given Josie's respiratory history (new readers can catch up in the 2010 blog archives starting in August), we take these sorts of things very seriously. 

A hefty dose of steroids and a week off of school to recover and Josie was fine.  But Merryn wasn't...

3.  Merryn...and Mom...and Lydia get sick.  I shuffled the gang back to the doctor...I inquired about renting a room there just to cut down on travel time.  Little did I know, things could get worse...

That's right - I'm always learning new things about parenthood and I learned a very important lesson: When Mom gets sick, there are no sick days.  No paid vacation.  No PTO - period.  So while I was shivering with chills on the sofa running a 102 degree fever and whimpering about my aching body, the kids still expected to eat, bathe, brush teeth, read books, do art projects, have clean clothes...There was no substitute mom to call; no "Out of Office" messenger to cue up.

Lydia was the next one to show off her extravagant souvenirs from her recent tour of the germ factory. As these things go, the sweetest, smiliest, most pleasant baby on earth fell prey to the winter illness curse...

 So I hauled the crew back to the doctor to learn that Miss Lydia had gone through the buffet line of germs and taken a heaping helping of everything!

 2.  Travis the traveler was traveling - Loyal readers know that Travis' job responsibilities have always included travel.  Early December was no exception.  So illness hits, we start dropping like flies, and Travis is jetting off to a mandatory conference that has been on his schedule for months.  Now no one begrudges him for working hard and bringing home a paycheck to support his family.  We appreciate the fact that he is a wonderful provider.  However, his absence was definitely felt during the last leg of the injury and illness marathon. 

2.  The bar was set too high - I know what you're thinking 'You had a baby, moved, live in a shoe box, are building a house, single parenting, and everyone got sick.  Still, it's Christmas!  Pop a card in the mail for Pete's sake!'

I know, I know.  I had every good intention of doing so.  But given the precedent that's been set over the last few years, not just any value-pack of holiday greetings from Walmart will do! 

Exhibit A: Christmas 2011

Exhibit B: Christmas 2012

Exhibit C: Christmas 2013

I caved under the pressure!!!!

1.  I found myself on the naughty list - I feel like this part should start with a sports analogy.  Ten seconds left, the clock is ticking, something about a tied game and a free throw at the 50 yard line and the buzzer sounds (Ok, I don't exactly have the sports proficiency to carry this off so I'll stop). The point was, this was my "Hail Mary" pass.  As us Type A, neurotic perfectionists are prone to do, I wasn't ready to give up.  So as soon as I could scrape myself off the sofa and in good conscience, drag my sickly little crew out of the house, we decided to pay a visit to Old Saint Nick.  I wiped the crusted snot off the girls' faces and dressed them in their fancy Christmas dresses from Mama Hop and we headed towards the most festive destination this side of the North Pole: the mall.

As luck would have it (we're just full of luck these days), Santa was out feeding his reindeer.  No problem, I'll just burn through Merryn's braces fund letting her ride that ridiculously overpriced Polar Express train over and over and over until Mr. Claus returns.

We decided to stop before we burned through her college fund as well.  Instead, I figured we'd pose by the beautiful Christmas décor - the elegantly decorated trees, poinsettias, and twinkling lights that we have no space for in our condo - and maybe, just maybe, I could get a holiday card worthy photo.  But you know my kids...

Lovely.  Just lovely.

Oh but Merryn's gold mining wasn't the most vile offense of the day.  No, that title goes to me; good old mom.  Do you see Santa's stern glare and the finger pointing?  That accompanied the "No pictures, Mom!  Stand over there!" talking to Santa gave me after I violated the mall's "Oh-heck-no-you-can't-take-your-own-snapshot-gosh-darnit-you're-going-to-pay-$26-for-our-lousy-photo-Merry-Christmas-Hope-you-enjoyed-your-visit-to-this-cattle-call-racket-right-of-passage-of-every-well-adjusted-childhood" policy.

And that's when I knew I'd solidified my spot on the naughty list...it was also precisely when I realized it was time to throw in the towel and give up the 2014 Christmas card dream.

But I'd like to take this opportunity to make a virtual toast: To a happy, healthy, and fun-filled 2015 with some much needed stability.  Heck, maybe even a little bit of boredom would be welcomed after the year we've had.

Happy Holidays to all of our blog readers!