NDSC: Friday

Ok, we've been home for three weeks and I'm still not caught up! I'm determined though. LOL

So Friday evening, the first day of the conference, there was much to do! But first, what to do with the boys? Well, a friend of mine, Kaci, who lives in the DC area has a teenage daughter Kira. God Bless Kira! With zero notice she dropped everything and gave up her weekend (and time saying goodbye to her boyfriend) to watch the boys for me a few times over the course of the weekend. I don't know what  I would have done without her.

But first, Angela was going to spend the evening at the Youth and Adult conference meeting all her new friends. She was SO EXCITED that I was leaving her. "Mom. Just GO." as she walked away with a backward wave over her shoulder. (I'll explain more about the Y & A conference in a separate post.) Can you find Angela at the table with her friends, ignoring me?

Then I raced to the lobby to meet Kaci and her kids as they arrived at the hotel. It suddenly turned into a Serbian reunion. See these three kids? ALL THREE adopted from Serbia. Sofija was adopted first, then Axel and Asher. While families who've adopted from Ukraine run into one another all the time, the kids from Serbia a rare in the U.S. (there were only 7 in 2011, and 12 in 2010.)

I quickly showed Kira to the hotel room, got them set up with electronics, then bolted to the sharing session I'd chosen to attend.  There were several sharing sessions from which to choose from. These are informal sessions meant to be more like group discussions than anything else. There were LOTS of topics! My friend Bethany Balsis asked me to come to her session on blogging to offer any input that might come to mind.

I can't say I had much to offer, but it was a lot of fun meeting people who I know from the blogosphere along with others who are considering starting a blog. So fun to finally put names to faces!

Because I didn't have anyone to watch the kids the entire evening, I didn't take them to the opening ceremonies. I figured it would just be too long to sit and there would be plenty of sitting over the course of the weekend. I really missed not being able to attend this. Still, check out this room, all set up for the ceremonies. That is A LOT of chairs! I don't know what the final numbers were for attendance. 

For the youth and adults, the highlight of Friday night is......(drumroll please!)....The DANCE! What would a DS conference be without dancing?  Dean made an observation once a few years ago. These particular dances are a lot like going to a wedding where everyone has already had a bit to drink. There are NO inhibitions!!! NONE! The DJ doesn't have work to get people dancing, all he has to do is start the music. The people in this community dance from the moment the first note is played and continue dancing their hearts out until the very last note ends. Even then you might have to drag some off the dance floor! Axel loved the dancing, Asher...well he wasn't a fan of the music and cheering people. When the dance first started he was ok, but after that he spent a lot of time with his hands over his ears. I had arranged for someone to be with us at the conference knowing Asher would not tolerate this event. After I recorded this he and I moved to a different area where he was only slightly happier. This video was taken right away when the music started. You cans see there is still a lot of space! It's the only time Asher was happy, but the other two??? Total blast!

Within about 20 minutes it was PACKED and I had a hard time keeping track of my big kids. LOL

Axel even got to dance with Diondra Dixon, sister to Jamie Foxx. 

It was a very fun day, one that none of my kids will soon forget! Next up? The workshops!

NDSC: Arrival Day

So we FINALLY made it to Washington D.C. It was a great trip there and the kids were fantastic. We navigated the streets of D.C. and made it to our hotel, the Marriot Wardman Park.

It was a beautiful hotel. Some of my friends were in the old section of the hotel which is a historical building decorated to period. We were in the new part of the building so we had very typical "new hotel" type rooms. We had plenty of space and the kids really liked it. The only bad part was it seemed F.A.R away from everything which meant lots of walking. Not fun if you're Asher with short legs. (or Angela after a long day at the Y&A conference! LOL) We survived and got lots of exercise!

The very first person we ran into was Michelle Zoromski in the elevator. She has several cute kids, including Ruby and Lilya who both have DS. She also has an angel with DS in heaven. Ruby's twin sister Lydia also had DS. 

While we were checking into the hotel we ran into an long-time online friend, Marlene. Her daughter Aleena is adorable. It's been fun watching her grow up online. I've known them from Downsyn for about eight years now. Somehow I don't have a picture of us together.

A few minutes later another friend from Downsyn, Kathy approached me. "Leah? I know it's you!" Everyone recognizes the kids since we look at their pictures every single day. LOL (this picture was taken at the first dance.) Kathy's son Grady has DS.

Next up was my long-time friend Diane. I have known Di online for years, and we first met in person back at the Atlanta conference when Angela was 9 and her daughter Mary Ellen was just a baby. We met up later in the evening and her husband, who Angela has dubbed "Uncle John", won Angela's heart by buying her cheese cake. LOL Diane is the founder of the IDSC for Life. 

Just out of this picture is Asher who was falling asleep sitting up. It was time to get my kids to bed after a long day! Another post coming, I promise not to wait a week in between!

NDSC convention: Getting There

It's a long drive to from Minnesota to Washington D.C. If we had driven straight there it would have been around 1,100 miles. I don't do anything the "easy" way. Well, we had trouble even getting out of town in the first place. Getting gas, stopping at the bank, etc. We made it a whole 90 minutes down the road and met my good friend Diane Higbie for brunch.

The first night the we made it to Michigan City, Indiana, which is 489 miles. If you look at a map you'll notice this isn't really along the way. Yeah, the last time Angela and I went to New York I messed up in the exact same area. I'm blaming my GPS. They kids were wiped out!

No pictures of swimming kids because...well I was in the water with the kids! This is when it occurred to me that I need two adults to take the kids swimming. Angela can swim but the boys are each HANDS ON in the pool. Axel doesn't understand why he can't just bend over and pick up something that's under water and tries to breath when he's under there, and he frequently tips over in the water. This happens while I'm holding Asher with my other hand and he is trying to pry my fingers off because he wants to swim! He is constantly putting his head under water, coming up laughing then doing it again. He's like holding a slippery worm in the water.

The next morning I got the kids up bright and early because we had to nearly double our miles from the previous day! We had 739 miles ahead of us. Good morning from my tired kids!


We were on the road by 8:00. This day we drove from Michigan City, IN to New Egypt NJ.
We arrived at 11:45 pm. It took about an hour to get everyone to wind down and get to bed. I promised the kids a swim in my friend Tink's pool in the morning, but in order to have a second set of hands we got up early to eat and get in the pool. I do NOT belong in a pool at 8:00 a.m. but the kids had fun! Asher was NOT happy when it was time to get out, and kept trying to drag everyone back to the pool.

We were on the road by 10:00 a.m. headed to DC, another 180 miles away. Since the kids had a swim first, they were pretty quiet. About an hour from our destination I received a phone call. The person who was lined up to help me out with the kids while we were at the conference called and canceled. I was not happy! Had I known before I left home I could have brought another caregiver along. This ended up causing me major difficulties over the course of the weekend and there were many things we weren't able to do because I only had one set of hands. It was a MAD scramble to find someone who could help me. Thankfully I have a friend in the D.C. area who was kind enough to rearrange her family's entire schedule to accommodate us.

Next up...the Convention!!!!

Really?

When Angela was born and we received her diagnosis of Down syndrome, I quickly immersed myself in the DS community. (and that was pre-internet days!) I became a board member of the the DS association of MN (DSAM) 


When Angela was 7 I was lead to the Downsyn.com forums, which happens to be THE best place on the net to discuss all things related to DS!!! (and yes, even better than Facebook.) Downsyn is my internet home.


 As Angela got older I started public speaking, traveling all of the US. I've spent 17 years attending conferences and workshops - including the NDSC convention - and have met some of my dearest friends among the other parents with whom I share this walk. Friends I cannot wait to wrap my arms around again each year. 


 Imagine the feeling of shock I felt when, one week before the conference, I was informed that the director of Reece's Rainbow had contacted the board of the NDSC and expressed her concern because I was attending the conference. 


Did you just pick your chin up off the floor like I did? 


What in the world was the purpose of this? Was it to get me banned from the conference? Apparently the $20,000 which Reece's Rainbow contributed to the NDSC in the last year talks, because there is no way if I, as a general member, requested such a meeting that it would actually happen. Money talks people, and some will take advantage of that. That said, I never knew I was such an influential person that someone felt the need to express their discomfort at my attending a conference with several thousand other people. I will be careful to not let that go to my head.


Let me explain something: I did not drag my kids 1/2 way across the country because I wanted to engage in a dialog about Reece's Rainbow.  No. Like everyone else I brought my kids to a conference to meet others like them, for Angela to find her own voice in the Youth and Adult conference, to gather information about DS and the issues WE face in our family every day, and to see my old friends again. THOSE are the reasons I attend the NDSC conference.