Just Dance!

Thursday, 9 August 2012

There are 2 big social events at the NDSC Convention - the dances. There is a dance on Friday night for the Welcoming/Opening Reception, and then Saturday night's Just Dance event.

They aren't quite kid-friendly. For one they go from 9-11pm. A very late bedtime and then an early wake-up time the next morning for workshops that start at 0830 aren't the best for kids.

Plus they are well-attended (crowded). Which is great! And loud.

We bring our kids to continue to expose them to that atmosphere and for the most part they handle it fairly well.

Usually when we first arrive in the room they cover their ears saying it's too loud.

We stay on the outskirts of the dance floor and try to meet up with friends who also have younger kids and eventually they start dancing.

 

 

After a bit of dancing we usually find a spot away from the dance floor, but where we can still hear the music, and play with friends. They end up having a great time... and then near the end tell us they are tired and want to go to sleep.

 

Joe and I even get on in on the dancing fun! 

These are such fun dances ... just wish they could start at 8 instead of 9 for the younger crowd.

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National DS Convention: DC

Monday, 6 August 2012

Our summer of traveling continued when, a few weeks ago, we went to our nation's capitol for the annual National Down Syndrome Congress convention. I really needed the positive distraction this provided for me and was looking forward to seeing old, and meeting new, friends. Love the 'family reunion' atmosphere of convention. Oh! And workshops! Lots of great information coming out of the workshops too ... but this post will be all about the wonderful blogging/online friends I was able to see that weekend.

 Emma Sage

The Bates Motel

Mutterings and Musings  

(this was our first time meeting and I'm so glad we were able to have dinner together and chat!)

 Our Roads Traveled

 

 The Zoromski Chronicles

At the generosity of Trial Run we had a fun party in her hotel room!

It's becoming an annual tradition to hang out with *Results Not Typical family ... fun watching our girls grow year after year!

  Lovin' on the newest addition to their family.

 She was covering his ears because she said it was too loud.

Baxter Sez, Trial Run, *Results Not Typical, Unringing the Bell, and me! 

A family from Roswell, NM that we met through the Buddy Walk when we used to live at Holloman AFB, NM. Now we get to see them every year at convention!

The next two pictures are with the adorable Zoromski girls!

Faulkner Family

 

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MaterniT21

Tuesday, 11 October 2011

One of the workshops I attended at the NDSC Convention was about prenatal testing. Prior to the workshop I had already read about a non-invasive prenatal test for Down syndrome. 

At the workshop is where I learned that Sequenom The Center for Molecular Medicine is calling their new maternal blood test MaterniT21. Isn't that cute? (insert heavy sarcasm). At least there is no beating around the bush and hiding the fact of what they are truly targeting.

The new prenatal test will detect nucleic acid of the unborn baby that circulates in the blood of its mother. So they will be able to use the mother's blood to detect Down syndrome. This can be done as early as 9 weeks. The non-invasive test is diagnostic; it isn't a screening test. It's non-invasive unlike CVS and amnio which carries the risk of a miscarriage.

I'm all for progress and I can, to some extent, understand the excitement surrounding a non-invasive diagnostic test. But I can't help but think how much easier this will be to terminate a pregnancy and how many less children like my daughter will be born.

The problem is what information parents are given after a prenatal diagnosis. This was on a slide from the workshop, "Most Genetic Counselors appreciate that people with Ds can have friendships, hold jobs and go to school. Paradoxically, by self report, very few of the counselors point out these abilities in their descriptions of Ds to prenatal clients." And then this, "86% mentioned termination, 37% continuation of pregnancy, and 13% adoption." Hmm... all three options should be given and discussed to make an informed decision.

There is a new booklet being distributed to medical professionals called Understanding a Down Syndrome Diagnosis & Presenting a Down Syndrome Diagnosis. Hopefully this will find its way into every OB and/or genetic counselor's offices to help facilitate a full and complete discussion on the diagnosis and what it means.

A great resource for anyone receiving a prenatal diagnosis of Down syndrome, and choosing to continue with their pregnancy, is the free downloadable ebook Diagnosis To Delivery: A Pregnant Mother's Guide To Down Syndrome."

I'm all for progress but why can't that progress (money/research) be geared towards helping those with Down syndrome who make it in to this world instead of trying to stop them from ever being born?

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The Lucas Association Shirt

Monday, 10 October 2011

While we were at the NDSC Convention in San Antonio this summer my mom bought the kids a couple of tshirts. The tshirts say "I (heart) DS." There were also tshirts that said, "My (blank) has DS."

At the table where the shirts were being sold they also had markers and such if you wanted to decorate your shirt (or for writing in the (blank) spot on the other shirt. So they kids wrote their names on their shirts.

After Lucas wrote his name he decided to keep writing. He picked up a different colored marker than what he wrote his name in and he wrote the letters A S S ... and then he just stopped. He was done. So his shirt said Lucas Ass.

My mom said she couldn't let him walk around with that on his shirt, so with some quick on-the-spot thinking she added some more letters to his shirt and Lucas Ass became Lucas Association.

And that is the story behind his Lucas Association shirt!

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Special Exposure Wednesday

Wednesday, 24 August 2011

This picture was taken at the NDSC Convention for +15's "One Of Them Is Me Campaign." They had a couple of photographers taking pictures of people with Down syndrome and their family/friends. On Friday I just had Kayla take a picture by herself (I guess I didn't realize they could be with family members!) So the next day I brought her back to get a picture with Lucas. I LOVE how this picture turned out!

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Morgan's Wonderland

Tuesday, 23 August 2011

While we were in San Antonio for the convention we were able to spend a day at Morgan's Wonderland - "the world's first family-friendly ultra accessible family fun park!"

The front entrance has a large world map with pins showing the visitors they've had from different states and countries; that was neat to see! Access is free to individuals with special needs and only $10 for family and friends with them. ($15 if you're not with someone who has special needs.)

They limit the number of guests (not sure what that number is) per day so it isn't overly crowded and over-stimulating. It was so nice to walk around and not be overwhelmed by crowds (and the heat probably kept a lot of people away!) They also give each guest a wristband locator. If you lose someone in your party you can go to any of the location stations, scan your wristband, and it will show you where everyone in your party is located.

I also like that there are giant sun shades over a majority of the park - especially the playground area. While it was still very hot (August in Texas!) it was nice that the sun wasn't beating directly down on us walking around. The kids really liked the playground area and probably would've stayed there all day if it weren't for us parents who kept pulling them away to go check out other areas of the park!

We spent our day there with Playette's family; I love that our kids are going to grow up together at these conventions!

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