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.

Constituents share concerns with Ayotte

by Saba Hamedy from the Nashua Telegraph:
As superintendent of New Hampshire’s Kearsarge Regional School District, Jerry Frew has seen first-hand how cuts at the federal level can affect schools in the state.

“If funding is frozen, eliminated or reduced for professional development, it has a dramatic impact on some of our small rural districts,” he said. In turn, the state would have trouble meeting its obligations, and the local tax burden would “crush” some areas in New Hampshire, he added.

Frew’s concerns – along with those of his colleague Mike Martin, superintendent of Merrimack Valley School District Unit #46 – were among the issues raised Thursday with Sen. Kelly Ayotte, R-N.H., at the weekly “Coffee with Kelly” in her Capitol Hill office.

Ayotte has been making the rounds on the national TV circuit amid speculation about her becoming a running mate with Mitt Romney. Still, Ayotte says she’s committed as ever to the people of New Hampshire and the issues facing the state.

Her weekly hour-long informal gatherings, which takes place at 9 a.m. every Thursday when the Senate is in session, are open to New Hampshire residents who are visiting the nation’s capital on business or pleasure.

“Whether I’m at home or in Washington, I want to hear directly from Granite Staters,” Ayotte said later in a statement. “My weekly coffee is a great way for visitors from New Hampshire to let me know what’s on their minds.”

On this particular Thursday, Frew and Martin were joined by about 12 others in Ayotte’s office in the Russell Senate Office Building, all snacking on donuts and drinking coffee in anticipation of speaking with the senator.

When Ayotte arrived, she greeted everyone warmly. “I appreciate all of you being here today,” she called out to the group.

Rather than sit at the head of a table in a more formal meeting-style session, Ayotte made rounds around the room, making sure to meet, talk and pose for photos with all of the attendees.

Afterward, she hurried off to the Senate floor to talk about sequestration.

Ayotte, who began holding the “Coffee with Kelly” sessions a little over a year – about six months after joining the Senate – is one of several members of Congress, including Montana Sens. Max Baucus and Jon Tester, who hold informal gatherings in their D.C. offices.

“It’s kind of like an open house,” said Liz Johnson, Ayotte’s press secretary. “There are constituent meetings every day – but this is an opportunity for families and visitors to chat outside a formal setting and spend personal time with Sen. Ayotte.”

Johnson said the number of attendees varies from week to week, but that the sessions often get crowded, especially during school holiday periods. The largest group on a single Thursday was 62 people during April. People are able to attend after signing up online in advance.

While some, such as Frew and Martin, attend the caffeinated sessions to talk about pending legislation, others, like Bedford resident Lisa Heaps, decide to come just for the experience.

The stay-at-home mom of three – visiting relatives in Maryland – headed to Capitol Hill with her children, nieces, nephews and sister-in-law, as part of a family day in D.C.

“We try and do something cultural every time we come back and visit the family,” said Heaps, who volunteered in Ayotte’s 2010 campaign. “I’m excited to have my family meet Kelly because I think she’s going to go places … I’m not here to air any issues. This is going to be more social.”

And some, like Dodi Mitchell and Isaac Hartigan, both of Nashua, came to discuss policy as well as socialize with the senator.

Mitchell and Hartigan, who has Down syndrome, were in Washington for the National Down Syndrome Convention.

“We are here to educate,” Mitchell said. “I think that although most people understand that there [are] a lot of citizens in our community with Down syndrome, I think many people don’t know a person with Down syndrome – and they don’t realize how productive and capable and what an integral member of the community they are.”

Mitchell, a coordinator for Nashua’s Special Olympics, said she felt talking to Ayotte would be helpful to hers and Hartigan’s cause. “I think [Sen. Ayotte] is interested in the issues and I definitely think she will be able to help us,” Mitchell said.

Added Frew: “I think it’s really important that our senators and members of the House have access to us so they can hear the local impact of decisions made here. It’s a great opportunity for us to share a local perspective with these folks who have great intentions and quite frankly, the power to change things.”

NDSC Convention Schedule for Thursday 7/19

Thursday's Itinerary for the NDSC Convention in Washington, DC.

There are 2 main events planned for today.

NDSC Day on the Hill

In this important election year, WE are making a difference — more than 400 people have registered to be part of what’s expected to be the largest advocacy effort ever in our nation’s capital focused specifically on Down syndrome. Participants will have the opportunity to influence public policy that affects people with Down syndrome and their families. The day will start with meeting in the Capitol where we will be recognized by Congress and then advocates will continue on to their individual state meetings with Congress members to support the following legislative priorities.

• Cosponsor the Trisomy 21 Research Centers of Excellence Act (H.R. 2695/S.1840) and the Trisomy 21 Research Resource Act (H.R. 2696/S.1841).
• Cosponsor the Keeping All Students Safe Act (H.R. 1381/S. 2020).
• Cosponsor the Transition toward Excellence, Achievement and Mobility legislation in the U.S. House of Representatives (including the TEAM-Education Act, H.R. 602; TEAM- Empowerment Act, H.R. 603; and TEAM-Employment Act, H.R. 604) and consider championing the introduction of a companion legislative package in the U.S. Senate.
• Cosponsor the Achieving a Better Life Experience (ABLE) Act (H.R. 3423/S. 1872) to ensure the creation of tax-advantaged savings vehicles for individuals with disabilities.

Global Down Syndrome Foundation's Be Beautiful Be Yourself Gala

• Featuring Dr. Huntington Potter Director of Alzheimer Disease Research, Department of Neurology & the Linda Crnic Institute for Down Syndrome, University of Colorado School of Medicine
• Be Beautiful Be Yourself Fashion Preview featuring models with Down syndrome
• Attendence from members of Congress supporting people with Down syndrome
• Performances by Scott Grimes and Bob Guiney
• This is at a different location than the NDSC Convention

Also, NDSC Convention Registration opens 7-9 PM

See the NDSC Convention website for all official details.

NDSC Convention Schedule for Wednesday 7/18

Wednesday's itinerary for the NDSC Convention in Washington, DC

Training Session for NDSC Day on the Hill

Participation is designed to be easy, and it’s so important! Once you register, NDSC will schedule your appointments with your Senators and Representative, so all you’ll need to do is…Be present at a required training session On Wednesday, July 18th, for final instructions, to meet your fellow advocates, and, to pick up information to take to your elected officials.Review the advocacy training materials outlining NDSC’s policy agenda, messaging, and tips for effective advocacy.

Advocacy Training
Before coming to DC in July, review these materials to ensure a successful visit

What to Expect Rationale and Key Messaging

One Page Summary of Asks In Depth Advocacy Pre-Training Packet 4.17.12

Audio of Pre-Training Session held April 17

Day on the Hill Mandatory Training:Wednesday, July 18, 7:00pm
Marriott Wardman Park, Maryland Suite

See the NDSC Convention website for official details.