NDSC 2015!

I’m baaaaaack! The 2015 NDSC (National Down Syndrome Congress) Convention was a blast! I am so glad I got to go!

The annual conference was held in Phoenix this year, and I was lucky enough to have our Down syndrome group offer me a scholarship so that all I had to pay for were my meals. Otherwise, I never could’ve gone this year, and oh, what I would have missed!

I flew into Phoenix on Thursday and met up with my roomie for the conference, Janessa. The only thing we really needed to do on Thursday was register, so we spent the rest of the evening driving out to see my old ‘hood in Chandler and having a tasty Mexican food dinner.

Mmmm...sangria swirls!
Mmmm…sangria swirls!

On Friday morning, I attended a pre-conference forum called Advocacy Bootcamp. Because I’m now working as a legislative advocate for our Down syndrome organization, I thought it would be useful. And wow—was it ever! It was a 4.5-hour bootcamp with twelve speakers, and it was fantastic! They covered a lot of the history of disability legislation, which was helpful to me because I didn’t know much of it. But they also covered a lot about how to effectively advocate on many levels—locally, at the state level, and even at the federal level.

Some big names in the DS world were in that bootcamp, and I got to hear them speak. It was like being among rockstars, really. Two of the speakers were adults with Down syndrome—self-advocates. They spoke about their experience with getting their own voices heard in an advocacy role, and that was awesome. Because difficulty with speech is a hallmark of Down syndrome, we often end up speaking for our kids. But we hope that as they get older, they’ll be able to speak for themselves—to speak up and fight for what’s rightfully theirs and for what they believe in. So it was really inspiring to hear two men who are doing just that. I stopped one in the hall later to tell him how much I’d enjoyed his speech, and I got to have a great conversation with him about his beliefs on the role of the government in legislation. (Which actually didn’t really line up with some of my beliefs, but hey—it made for an interesting conversation!)

Another speaker at the bootcamp that I really enjoyed was Jeff Huffman, a man who, with his wife, is converting a hotel in Muncie, Indiana, into a training center for adults with intellectual disabilities. The adults in the program will live in the hotel for several weeks (seven, I think??) while they go through the program and learn to work in the hospitality or food service industries. For an article about the hotel, click here. I love this idea!

Yet another speaker at the bootcamp I enjoyed was Patti Saylor. In fact, enjoyed would be an understatement. I was honored to hear her speak. Patti’s 26-year-old son, Ethan, was killed by police when Sam was less than a year old, and it hit me hard. He was an adult man with Down syndrome who wanted to stay and watch a movie a second time but didn’t have a ticket. Three policeman tried to oust him from the theater, while his aide pleaded with them to stop, warning them that he would panic if touched and telling them that his mother was on her way to help. They didn’t listen to the aide, and as a result of their actions, Ethan died. (If you want to read the full story, click here.) To me, as the mother of a sweet baby boy with Down syndrome, it was a huge blow to my idea of the future for Sam. Was this the kind of treatment my son would face? People unaware of how to handle his particular situation and who wouldn’t take the time to listen to what might be a better way? Would he live his adult life in this sort of danger?

When I saw Patti getting coffee at the break, I went up and said hello and told her how sorry I was about Ethan. I was mortified to have tears fill my eyes, but she said, “Hey, don’t worry about it. I do it at least five times every day.” We talked for a bit, and she told me she sometimes thinks of stepping away from the world of disability because it hurts so much to think of what happened to her son, but she can’t—not only was she the mother of a child with an intellectual disability, she is a nurse for people with disabilities. It’s her life, and no matter how much it hurts, she is determined to try to improve the world for people with intellectual disabilities.

During her speech, Patti talked about how she got higher-ups in her state legislature to listen. “I finally just walked in and said, ‘My son is dead, and you’re going to listen to me.'” And they did. Training programs are being put in place to help law enforcement learn how to diffuse situations involving people with intellectual disabilities who may not respond to typical tactics. Patti closed with a quote that I thought very appropriate and meaningful: “I always wondered why somebody doesn’t do something about that. Then I realized that I was somebody.” Indeed. Goes right along with one of my favorite quotes: “Be the change you want to see in the world.”

Another speaker at the bootcamp who I enjoyed runs the Northwest Down Syndrome Association and the All Born (In) conference, and she talked a lot about how they advocate for change in the Pacific Northwest. They use a lot of self-advocates when they lobby for change, which is awesome—who better to speak for people with Down syndrome than people with Down syndrome?! But my favorite part of her speech was when she talked about the need to sometimes speak simply and firmly to make the strongest point. Her own son with Down syndrome, Daniel, is a self-advocate who works with her sometimes, and she told a story about how they were working on trying to get post-secondary education programs in place for people with Down syndrome and other intellectual disabilities, and her teenage son pounded his fist on their congressman’s desk and said loudly and simply, “I want to go to college!” That simple statement, she said, made the biggest effect on the congressman of anything that was said that day. Very cool.

Even if I hadn’t gone to anything else at the conference, that Advocacy Bootcamp was terrific and well worth attending. But I did attend other sessions as well, of course. Some were better than others. I attended one on medical outreach (since I do that for our organization), and it was okay, but not as good as I had hoped. I attended one on post-secondary educational opportunities and how to create them for people with Down syndrome, and that was excellent. I went to one on getting your child into an inclusive kindergarten program, and that was excellent too. And I went to a dud on encouraging positive behaviors in an inclusive classroom—it sounded very promising, but it ended up being geared much more to educators and less to parents. So if I was there in the role of an educator, I probably would’ve enjoyed it. But as a parent, it was a bit of a dud.

It wasn’t all just conference sessions, though. We had plenty of time for fun and socializing. I got to hang out with several of my Rockin’ Mom friends and meet some new friends who are members of other Rockin’ Mom groups. (DSDN, the organization that runs the groups, caps them at 150 members so they stay small and intimate. So there are now something like ten different Rockin’ Mom groups. I’m in the original group, but I met a lot of people in other groups, too.)

We even got to experience a dust storm! I miss the dust storms in Phoenix—I always thought they were pretty awesome! Unfortunately, we couldn’t see the dust, as the main part of the storm didn’t hit the conference center. But we did experience the wind, which drove us inside the hotel from the restaurant patio, where we had been happily eating. Here’s a picture of the storm, though, as it swallowed up the Phoenix area:

Whoa, look at that wall of dust!
Whoa, look at that wall of dust!

When we left the conference center later that night, there were tree branches everywhere, broken off from the winds. Pretty cool, as storms go.

One thing I did not do at the conference was sleep very much! We stayed out late having fun every night instead! Here are some of the awesome moms I got to hang out with:

I like this picture--I look skinny since Jen is hugging me and covering my weight!
I like this picture–I look skinny since Jen is hugging me and covering my weight!



IMG_0220Okay, the sombreros…let me explain. The big event of the conference every year, apparently, is the Saturday night dance. Because true to the stereotype, many people with Down syndrome love to dance. I know, I know…that’s a total stereotype and painting with a broad brush. But let me tell you, you have not lived until you’ve been in a room full of people with Down syndrome getting down! Damn, those people can dance! And honestly, it’s a stereotype that I think may have truth to it. Sam certainly is a dancing machine, and the people at the conference seemed to uphold the stereotype as well. 🙂 It was totally infectious, so those of us with the typical number of chromosomes couldn’t help but get into the music, too. Complete with sombreros. 🙂 The whole event just made me happy, happy, happy!

Actually, the whole conference made me happy. And I wondered to myself why…because it wasn’t like every single moment was smooth sailing. But then I pieced together what made it so very special. In addition to getting to meet and hang out with some women who I care a lot about, I was in a huge hotel full of people whose lives have been touched by someone with Down syndrome. The conference hotel is huge, and I assume there must’ve been other people not there for the conference, but I didn’t see them. The conference draws about 3,000 people, so I was surrounded by people with Down syndrome and those who loves them. And the air was full of happiness and contentment. Families walked around with big smiles on their faces and cheery hellos.

You know why, I think? Because walls come down when you’re in the little bubble of the DS world. We have been really lucky with Sam—our families love him with all their hearts and are very supportive of him and of our choices with regard to him. And our community members have welcomed him warmly, too. But still, there’s a little wall that is up when we’re out among the typical world. That thin protective shield that is ready to jump in and protect if anyone is cruel or thoughtless to him. Because it does and will happen, and so I’m always kind of prepared for it.

But not this weekend. This weekend, I was in a hotel full of people who just get it. People who I don’t have to have any wall up with. People whose family situation mirrors ours, and so they automatically understand the tiny pieces that make it up—all the challenges, but also all the joys.

It felt incredible to be able to just interact with people with no pretense, no wall. People who were walking around thinking, like I do, how lucky they are to be a part of this little world. One pregnant woman came up to the DSDN booth, where I was hanging out, and was talking to us. She’s expecting her first child, and it has Down syndrome. (I don’t know if it’s a boy or a girl, but it’s been confirmed to have Down syndrome.) And this young woman just glowed. Her husband and mother were with her, and she just glowed. And I thought, “Wow. She already gets it. She hasn’t even met her baby yet, but it’s clear that she can’t wait to—and it doesn’t matter that her baby has 47 chromosomes.” I just wanted to give her a big hug. I’m sure she has her moments where she fears for the future—we all do. But she certainly appeared to be at peace and excited to be part of the conference and part of our world.

Honestly, I didn’t want to leave the bubble. I loved being there. I loved seeing the adorable kids with Down syndrome, and I loved meeting the teens and adults with it. (The conference offers a lot of sessions for the teens and adults with DS—it’s not just for parents.) One 15-year-old, Colby, stole my heart when he came over and sat down next to me on my last night there and proceeded to tell me all about the girl he met at the dance who he has a crush on, his plans to go to college and later work three jobs (because why not? he said), and his aspirations to someday be the keynote speaker at the conference (after he starts in several movies and television shows, apparently). In telling me about his crush, he told me, “Her name’s Maria, and I told her I’m going to think about her every night.” And I thought, “Maria, you lucky, lucky girl!” So sweet.

But, of course, I had to leave. I left with a little souvenir, though:

Yes, it's real. :-)
Yes, it’s real. :-)

Yes, that’s a real tattoo, and it’s on the outside of my right ankle. My roomie, Janessa, asked me if I wanted to get a Rockin’ Mom tattoo with her and Jen—the small star logo of the organization. As it turned out, Jen was too busy working the convention and couldn’t go, so we put that off until the retreat in September, but Janessa and I decided to go get tattoos anyway. She knows a woman in the area who runs a reputable tattoo place, so we went there.

Honestly, I never thought I’d get a tattoo. There was never anything in my life that I felt strongly enough that I wanted it permanently branded on my body. But I liked the idea of a small star tattoo to identify me as a Rockin’ Mom, because it has become a big part of my identity. And I had decided that I’d add Theo and Sam’s names to it, since without Sam I wouldn’t be a Rockin’ Mom, and Theo is no less Rockin’ than Sam, despite not rocking an extra chromosome himself.

But when we had to put off the stars, I thought about my brush with mortality this past week, and I thought, “I really want to do this. I want to show permanently how much my sons have enriched and changed my life, and how much they contribute to who I am, and how much I love them.” So I altered my plan and got their names with a small heart between them. And I absolutely love it. Just like I do them. 🙂


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