Inspired: a review of the NDSC convention weekend

from Particularly Perfect by Amy Kosmalski:

Inspired.

Tonight I feel inspired.

I have been inspired by hundreds of beautiful people.  People like Kayla...all of whom are rocking designer genes.  Amazing people of all shapes, sizes, abilities, ethnicities, religions, and nationalities...all of whom came together from July 19-21 for the largest annual Down syndrome "family reunion".

I walk through my daily life appreciating Down syndrome.  Appreciating it for the miracle of my girl, for she truly is amazing and my greatest inspiration.  But...while I appreciate Down syndrome, it is also something I rarely think about these days.  While it used to way heavy on my mind and my heart, now it is simply a part of our lives.  Because it is a part of our lives, I consider myself an expert at DS-dar...Down syndrome radar.  I can usually tell from behind if someone has Down syndrome.  I enjoy so much seeing people with Down syndrome shopping, playing, dancing...just being...but it is rare.  Well, not on this weekend.  This weekend it felt amazing to walk into a restaurant and making my way past every single table, noticing someone with Down syndrome enjoying a meal with their family.  Eating, laughing and sharing stories together...just living their lives.  I felt home.

We spent the weekend in our nations capitol, Washington, D.C.  Rich with history...and we made a little bit of history ourselves.  Thursday we made history when over 160 self-advocates {people with Down syndrome} took to the Hill to advocate for a better future for themselves.  Asking of their congressmen and senators to support the ABLE Act and increase NIH funding.  It was truly a sight to see!  While on the Hill, we met with Senator Carper, Senator Coons and Congressman Carney's staff members.

Now...I admit...no one should ever let a pregnant woman lose in a Senators office.  Especially a pregnant woman that is passionate about a brighter future for her child.  While I have immense hope for the future of the ABLE Act and the utmost respect for Senator Carper's staff, squashing a Momma's dreams = not cool.  As this one staffer began to compare the ABLE Act to elderly people and Medicare, I lost my cool.  Trying to compare my six-year-old daughter's inability to save for her future to someone at the end of their years spending down their money instead of having to use it to pay a nursing home is ridiculous...and I told her so.  Filled with tears, I issued my warning that I was pregnant, hormonal and emotional.  But seriously...she was trying to compare a person that has lived a full life, purchased a home, been able to put their children through college, own cars, etc...to my daughter who can't have more than $2,000 in assets without losing her medical benefits.  It was just a ridiculous point and one I refused to listen to...and I think she got that message loud and clear.  Ah...to use the pregnancy excuse...it's fantastic...

The day resumed - meeting with Senator Coons staff.

That meeting went great.  Kayla and I skipped out on the Carney meeting as I wanted to ensure she rested before her big event...The Global Down Syndrome Foundation Fashion Show Preview and Gala.

As we walked into the Seewall Belmont House, Scott Grimes (from ER) was on the stage and immediately stepped down to warmly welcome Kayla.  Next she was joined by Bob Guiney (from the Bachelor) and the guitarist of their band, Jay.  She thought she was pretty big time...hanging "back stage" {actually in the basement}...

Notice the toilet paper in the background...now that's rock and roll!


During our backstage time we were able to spend time with the Hennefer family.  Brad Hennefer {B-Rad as his friends call him} is an inspiration.  He is the first person with Down syndrome to earn two varsity letters in high school...one in basketball and the other in golf.  Yes, Brad is an amazing athlete but he is also much more than that, Brad is an incredible young man that has the most wonderful personality.

After a few practice runs, the models were ready to work it...and did they ever work it...

All of the models rocked their smiles, confidence, swagger and amazing clothes...including their designer genes.  All of the models had Down syndrome.

Kayla with Rep. Perlmutter {her escort} and Michelle Whitten, Global Down Syndrome Foundation.

Guiney & Grimes took to the stage...and so did Kayla.  No one was gonna keep her back...

and they were just wonderful to her.  Soon all of the models were on the stage together again...dancing, singing and having the time of their lives.  Seeing my girl's confidence was quite possibly one of the most amazing moments I have ever experienced.  She lit up like nothing I have ever seen.  She was right where she belongs...in the spotlight.

Thank you, Bob and Scott, for being so wonderful and kind...

Working the "red carpet"...

Paparazzi...

The post fashion show interview...she kinda loves the camera...a lot! 
This is Kayla's new friend, DeOndra Dixon...Jamie Foxx's sister.  She is beautiful and kind and smart...Kayla loved her!
Abby Perlmutter of the Global Down Syndrome Foundation...Kayla is her biggest fan!
Abby's mom {don't they look alike}...and Trish Morris of the Global Down Syndrome Foundation...

We are so fortunate to meet some of the most amazing people...all because Kayla has an extra chromosome...and perhaps because she is so darn cute...

Onto the NDSC National Convention...

Blogger sharing session run by fellow blogger Bethany Balsis.  It was a great place to chat with other bloggers and place faces with the words that I read and that inspire me daily.  It is amazing to know that others recognize me and also draw inspiration from my words.

These are Bethany's girls...Nika and Payton.  Nika is their little Russian cutie...I so admire this family.  Having a child with Down syndrome and adopting another...just goes to show you that life with a child with Down syndrome is so amazing there are people that want to multiply the amazingness...You can check out Bethany's blog here.

As the weekend started, we were able to steal some time with our favorite little guy, JJ...my future son-in-law.  Seriously...can you get enough of him?  I can't...
There was much to learn...and my brain is still reeling.  This was our fourth convention and I am amazed at how much I learn each time.  Kayla is amazing and patiently sits through sessions...playing on her iPad, coloring, and reading.  In between sessions...different story.  She was on a mission...she was handing out her "business cards" like it was her job...I am fairly certain that everyone that attended left with a Princess Kayla card...whether they wanted one or not.

And while there was much to learn and many amazing people to meet...let's be real...it was all about the dance...Just Dance {round 1}...obviously my girl was beyond ecstatic...and there were hundreds of other faces just like this one on that dance floor....

Onto the most popular night of the convention...the awards dinner and Just Dance...

Just in case you didn't get enough the first time...here he is again...

This is one of my favorite family's in the world...so glad our kids brought us together...

Rick's parents came to DC to support us...and we appreciated it more than they will know.  I also know this was hard for them.  They don't see Down syndrome when they see Kayla.  They don't see everything we have done and have to do to keep her progressing with her peers.  They see Kayla, a perfect six-year-old little girl.  And she is just that...perfect.  Regardless of her abilities, she will always be perfect...but for them to come to see all of Kayla's friends, I know that was difficult for them.  Seeing and hearing the stories was, I am sure, an eye-opening experience...

Above all...seeing this girl smile...nothing is more perfect.  The joy that exudes her body when she is with her Daddy is priceless...

And I loved meeting friends I feel like I have known forever...

This is my new friend, Sawyer...
She's ridiculously cute...
Her mom recognized Kayla from my blog and told me what an inspiration Kayla is to her.  Tears.  Really. When I write, I do it for Kayla {well...and for me, too}.  I do it to remember all of the amazing things that we do together.  But to realize I am touching people is just incredible.  To Sawyer's mommy and daddy...your princess is beautiful and amazing.  Keep faith that she can do anything and by the time she is Kayla's age, she will be doing far more than Kayla.  That's how it works...learning from those that went before you.  She is going to change the world...just you wait and see!

This is my other new friend, Jenny...

She is a teacher.  Yes, you read that right...a teacher.  She is one of a few teachers in a class for kids with Down syndrome.  Amazing.  Inspirational.  Thank you, Jenny, for showing me what is possible for Kayla's future.  Just like you, Kayla is going to do amazing things!  Keep rockin' that extra chromosome and keep proving to the world that people with Down syndrome are making a difference!

And this diva here...tell me you don't love her smile...
Well...she attends college and lives on her own.  She had a roommate but moved out because she was tired of having to "take care" of her roommate.  I'm serious...that's what she said!  The most impressive part?  She has a 3.8 GPA.  How many of us could say we had a 3.8 GPA in college?  I know I wish I could...

And this may seem a bit stalker-ish...but I'm ok with that...

This is quite possibly one of the prettiest girls I have ever seen.  Ever.  Down syndrome aside.  Her poise and confidence was unbelievable.  I had the opportunity to chat with her younger sister and this beauty in blue is just 19 years old.  I may make enemies in the Down syndrome community right now but I have to say it...I know beauty is much more than what you see on the outside...but carrying yourself appropriately is half of the battle.  Making Kayla appear more like "typical" kids has always been a goal.  The more we separate our kids, the harder it will be for them to "appear" the same.  This girl is my inspiration.  She is dressed like she is 19...accessorized like she is 19...hair and makeup is done like she is 19.  Perhaps that is why she carries herself with such amazing confidence.  Whatever the case, this girl is stunning inside and out...and she knows it...and that is what is important!

The amazing people with Down syndrome at this convention were endless...here is just one more...
This is Tim.  Owner of Tim's Place.

Tim serves up breakfast, lunch and hugs.  He keeps count of those hugs, too.  But he serves much more than that...he serves up inspiration for people with Down syndrome and a side of awareness for everyone in the community.  Thank you, Tim, for dreaming big and proving to the world that people with Down syndrome don't have to settle for anything less than they dream.

Sure...these are all "success stories"...but don't we all strive to be successful...to be happy?  That's what I want for Kayla...and nothing less.  Whatever that will look like for her is just fine by me, but she will be successful.  I know there are parents that may not believe their kids can be one of these success stories, but I just don't understand why you wouldn't hope and dream for your child to reach their greatest potential.  What Kayla can and will achieve in this world is up to her and I am excited for her future.  I will be right there, right behind her...encouraging, supporting and loving her all the while...

Ok...enough of all of that...Just Dance...

As the convention drew to a close, I was witness to one of the most amazing sights ever...
Over 300 self advocates and their brothers and sisters took to the stage and performed Firework.  As they finished and the crowd took to their feet, the self advocates chanted "one more time...one more time...".  And so, we were treated to the show again.  Seeing these self advocates and their siblings come together as a group...tears...hot, happy tears.  It doesn't help that I am pregnant and emotional...

We left the weekend filled with knowledge, new friends, and the most incredible memories.  But above all, I left inspired.  To all of my new friends with Down syndrome, thank you.  Thank you for inspiring me.  Each of you are making an incredible footprint on this world.  Each of you are proving that an extra chromosome is nothing more than just that.  It doesn't define anyone with Down syndrome...and it will never define Kayla.  Her greatness will simply be defined by who she is as a person and by everything that she can do...not what she can't.

The Buddy Walk on Washington's Impact

This is a family's recount of the Buddy Walk on Washington from the blog Particularly Perfect.

We walked on Washington.  We conquered Capitol Hill.  We spread our message to our Congressman and Senators in an attempt to improve the futures of all people with disabilities.

Congressman Sessions spoke about being a fraternity brother of Pi Kappa Alpha...and I have always been a proud sorority sister of Alpha Xi Delta, but Congressman Pete Sessions, of Texas, reminded me just how amazing greek organizations can be.  Congressman Sessions has two sons, Bill {president of his chapter of Pi Kappa Alpha} and Alex {who just happens to have Down syndrome}.  Holding back tears, the congressman explained how proud he is of his fraternity.  This  weekend, Alex was initiated as an honorary brother.  But his pride reaches beyond that.  The congressman has received texts and emails, from men who have never met Alex, stating they couldn't wait to call Alex their brother.  That is the true meaning of brotherhood.  Ties that reach far beyond friendship.  Inclusion.  At the end of the day, that's all we really desire.  To be included.  All of us.  Despite our differences.

Representative Cathy McMorris-Rodgers has a son, Cole, that just happens to have Down syndrome.  I truly believe that some people have been placed in positions of power to help others.  She is one of those people. Her political strength will no doubt help many people with Down syndrome in years to come.  I am so grateful for her.

Dr. Brian Skotko - I don't even know where to begin...I am in awe of this man.  Dr. Skotko is an amazing doctor but even more amazing brother.  His sister, Kristin, just happens to have Down syndrome.  Dr. Skotko is a board certified geneticist at the Children's Hospital Boston.  He has written books, conducted important studies and quite simply made a huge impact in the lives of people with Down syndrome...and their families.  He couldn't be more amazing...

What was our message?  Sign the ABLE Act.  Today Kayla cannot own more than $2,000.  She cannot be worth more than $2,000.  Truth.  Sad but true.  Why?  She receives medical benefits from the government.  Most people with disabilities have medical benefits provided by the government but are not able to be worth more than $2,000 or they will lose those benefits.  Kayla can't get money for birthday presents.  We can't save for her college or her future.  We cannot leave her our house or a car.  Her grandparents cannot leave her anything in their wills.  She can't be worth more than $2,000.  Well...there is one way to save money for her future...a Special Needs Trust...but this trust has several issues...
1.  It doesn't transfer from state to state should you move.
2.  It is super complicated.
3.  It costs several thousand dollars to set up...so...truth be told, we'd be using every dollar we would have to give to Kayla just to set up the trust.

And why not allow her the same right as everyone else?  Why should we not be able to save for her future?  She is a person, with a voice...and should have the same rights.  This is why we walked.  She is the reason we fight for equality.  We fight for Kayla and her 350,000 friends living in the United States that also have Down syndrome.  We fight for them.  All of them.

If Kayla were of working age today...why work?  Why attempt to be a contributing member of society if she would be penalized for it?  Many people with disabilities are fully capable of working but don't because it doesn't make financial sense because they will lose their medical benefits.  The system is broken and must be fixed.

So what is the ABLE Act?  If passed, it will be a vehicle of savings that is similar to a 529 education account.  It will allow people with disabilities to save for their future without losing their medical benefits.  The one difference is it doesn't have to be used for education...because not all people with disabilities are on a post-secondary education track...and that's ok...but they should not be penalized for trying to be independent, contributing members of society.  That's my soapbox.  I'll step down for a moment...but if you feel inclined, contact your local congressmen and senators and ask them to sign the ABLE Act, for Kayla.

Buddy Cruise "The Soul Know No Bounds" Winner

The Soul Knows No Bounds Winner: Bradford Hennefer!

Brad Hennefer is living proof that society's "boundaries" can't hold him back. He is the first person with Down syndrome to play on two high school varsity sports--golf and basketball. He is also the inspiration for the "Brad Hennefer Golf for Life Foundation" which provides golf opportunities for indivdiuals with Down syndrome.

Brad was a keynote speaker at the NDSC 2006 conference and continues to conduct workshops for the NDSC each year. He was featured in the national media on Good Morning America, Sports Illustrated, New York Times and all three major TV networks. Brad also has stories published about him in "Chicken Soup for the Soul Inside Basketball" and "Gifts 2."

Brad holds two jobs--one for Wegmans, which is ranked by Formes Magazine as the 2nd best employer in the U.S., and the other job is with Aramark. His heart and "soul" are truly an inspiration to those who hear him speak as he shares is message that "While the Destination is Important, the Journey is the Ultimate Reward." It would be an honor for Brad to share his journey on the Buddy Cruise.

For further information, just google "Brad Hennefer" or refer to Golf for Life.

YOU can meet "Soul Knows No Bounds Self-Advocate" Brad Hennefer, October 16-23, on board Buddy Cruise 2011 where he will share his incredible journey.

Call 1-877-BDY-CRUZ #3 to reserve your cabin.

Purchase your very own Soul Knows No Bounds shirt at our shop.

Send a note of congratulations to Brad.  

Pathways to Potential!

If you live in Philadelphia or the surrounding area, you will not want to miss this “One of a Kind Event” brought to you by the Karen Gaffney Foundation and The Brad Hennefer Golf For Life Foundation!

Pathways to Potential!

Come to Citizens Bank Park, home of the Word Class Baseball Team, the Philadelphia Phillies, to hear from another World Class Team - Self Advocates Brad Hennefer, Karen Gaffney, Sujeet Desai and David Egan on Saturday, February 26, 2011.

They have shared their stories all around the country in a variety of settings, but they have never before joined forces to give their audiences a concentrated dose of Inspiration and Information.

It is going to be an amazing day!