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!