We’re back from the 2017 National Down Syndrome Congress conference! Back and exhausted, because it was a lot to take in! So much good information and so much fun socializing with people I usually interact with online instead of in person!
Last time (in 2015), I went to the conference by myself. This year, we were lucky enough to all be able to attend (due in large part to the fact that it was driving distance from us). After Sam wrapped up CRP and Chris and Theo finished up Scout Camp on Thursday, we all drove to Sacramento together and checked into the Hyatt Regency. I’ve walked by that hotel probably dozens of times when we lived in Sacramento, but I’ve never been inside. It was fun to stay, and it definitely met with Theo’s approval. (Pretty much anything with an elevator and a comfy bed meets with his approval, really. He’s not a hard man to please. But the hotel was quite nice!)
Someone was very excited to be headed for NDSC!
We had a nifty view of the state capitol from our room:
After checking into the hotel, we wandered over to the Convention Center across the street and chatted with some people we knew who were wandering around as well. Some of my Rockin’ Mom friends were there setting up the Down Syndrome Diagnosis Network booth, so we got to chat with them for a bit before wandering out to find some dinner.
Here’s the funny small-world moment of the weekend: We ended up at Claim Jumper and were seated at a table by the front window. I commented that I hadn’t brought an extra shirt for Theo, so I was hoping he wouldn’t trash the one he was wearing too much. Chris jokingly said, “Your niece lives in Sacramento. We’ll just show up on her doorstep and say we want to use her washing machine.”
I laughed and said, “Yeah, I’m not sure where in Sacramento she is. Somewhere…maybe out by Arden??”
Not two minutes later, I heard Chris go, “No way!” I looked out the window to see my niece, Sam, and her boyfriend, David, walking by. They saw us and came running in, wondering what the heck we were doing there! Turns out they live a block away from the restaurant and were out walking. We hadn’t seen them in about a year, so it was good to catch up! We got to see their apartment, which is super cute and happens to have the second oldest elevator in Sacramento (much to Theo’s delight, given his love of elevators). Small world, eh?
Chris put the boys to bed, and I went downstairs to the hotel bar to meet a friend I’ve been working with on advocacy things—most recently, she and I have been collaborating on a letter to the governor (and many other CA officials) about California’s implementation plan for the Every Student Succeeds Act (ESSA), as well as doing advocacy work on the proposed gutting of Medicaid. We had never met in person, so it was great to get to sit and chat in person! (She also introduced me to whisky—FIRE WATER! Good thing I only drank one…)
Friday, the meat of the conference began. We dropped the kids off at Kids Camp, and dove in.
Two kiddos ready for Kids Camp!
Sam even had a buddy at Kids Camp: Kayla, another Rockin’ kiddo! He really wasn’t having any of her hug, though…
Chris and I both signed up for pre-sessions, which were four-hour special sessions on a variety of topics. I went to one on potty training, and Chris went to one on positive behavior strategies. My session on potty training was informative, though for whatever reason, Sam has suddenly decided to make some major strides in that area, so I almost felt like I didn’t need it. But who knows—he could always backslide, and then I’ll be glad I went. And I had already paid for it, so I figured I might as well attend!
Chris loved the behavior strategies session! I had read the book some months ago and thought it was incredibly useful—not just for parenting Sam, but also for parenting Theo. Chris hadn’t read the book, but he came out of the session saying the same thing I had thought: the strategies were almost more applicable to Theo, which is pretty awesome because we were in need of some new ideas. They should be useful with Sam, too. Sam just doesn’t have quite the stubborn streak his big brother does, so parenting him is a bit less daunting!
We ate lunch with my fellow advocate and whisky partner, along with her husband and kids, then we headed off to the afternoon session. We had all chosen the same session in the afternoon, and that was the one dud of the conference (that Chris and I saw). I don’t want to mention the session by name because on the off chance that the presenter would happen to read this, I wouldn’t want to make anyone feel bad. I submitted anonymous feedback on it already, so at least the conference organizers will know. But I think we all found that particular session to be disorganized, and the presenter’s tone tended toward the negative. I knew a lot of people in that session, and it was the least favorite for everyone. But hey—you win some, you lose some.
Friday night I had organized a dinner for the Original Rockin’ Moms (ORMs)—the women from my core group of Rockin’ Moms. I think there were about eighteen of us, counting a couple of spouses and some kiddos. We had a great time—I just love those ladies! Afterward, most people went to the dance put on by NDSC, but Chris and I went back to the hotel room with the boys. I tried to take Sam to the dance, but it was too loud for him. I’m told I missed a fun night of dancing and wild karaoke, and I’m a bit sad I missed that! But ah well…mom duty called.
These people are awesome!!
Saturday was a full day of sessions. The first one I attended was on Universal Design for Learning (UDL), and wow—that was my favorite session of the conference! I came away from it so inspired about the educational future for both of my kids. I think all kids are unique learners in their own way—and my two are particularly unique because of their neurodiversity. Theo’s autistic and super bright in some areas, but with significant learning disabilities in others. And Sam just has the cognitive and processing delays that are pretty typical with Down syndrome. Both of them, though, require some accommodations in school to make the most of their education.
I had heard the term UDL many times and kind of knew what it was, but I didn’t have a really strong grasp on it. After the Saturday morning session, I feel like I really get the idea behind it and am really enthused about some of the ways it could work in my kids’ school.
The cool thing about UDL is that it benefits everyone. Sometimes when accommodations and modifications are made for students with disabilities, it’s like they’re learning a different set of material than everyone else in the class, even though the general topic might be the same. But UDL is designed to be accessible to all learners, so that any student in the class can learn about a concept in multiple ways.
I found the example the presenters used of a Rubik’s Cube to be incredibly helpful in understanding the idea behind UDL. The educator who was presenting (who also happens to have a teenage son with DS) showed a Rubik’s Cube and asked us to think of the people who might not be able to solve a Rubik’s Cube…and why. We came up with a fair number of ideas, but then the presenter settled on that we could discuss how to adapt it for visually impaired learners. That would include those blind from birth, those color blind, and those who became blind later in life.
There is a Braille Rubik’s Cube, but it’s not accessible to everyone either, because people who are color blind or went blind later in life may never have learned Braille. So that doesn’t solve the problem of making it accessible to everyone. Instead, we talked about how different textures could be used, because everyone can interpret tactile sensation. So the red squares might be velvet, the blue squares might be sandpaper texture, and the green squares might have a raised circle in the middle.
In that way, the Rubik’s Cube would still be the same toy/puzzle/device, but it is now accessible to people with visual impairments—even while remaining accessible to those who have no visual impairments. It takes nothing away from seeing people’s experience with the cube to add texture, but it makes it accessible to everyone else.
That’s UDL in a nutshell. It takes nothing away from typical learner’s experience, but it makes the material much more widely accessible so that students with disabilities can benefit as well. I find this absolutely fascinating! Whether your child is in public school, private school, or homeschooled, I think the idea behind this is hugely useful. All kids learn uniquely—whether disabled or not—so why not making learning more accessible to all?
We learned some more concrete ideas for how to implement UDL, as well as the legislative policies behind it, which was pretty cool, too. The federal guidelines for ESSA actually call for state plans to implement UDL, but in California, the draft ESSA plan has very little mention of it. I hope that will change, because particularly with increase in neurodiverse students, such as those with autism, I think the potential benefits are enormous.
I think it’s safe to say that was my favorite session. I went to a lot of other good ones, too, though. I also went to a session that was about sibling issues for children who have a brother or sister with Down syndrome. I’ll come clean and admit that I mainly went because I’m a big fan of Dr. Brian Skotko, who was presenting along with Sue Levine, a social worker who has collaborated with him on some large studies about families with DS, but I also wanted to go because as much as Theo has been an incredible big brother to Sam, we’re finally starting to see some sibling frustrations crop up. So I figured it would be useful to gain some perspective on those. Dr. Skotko has a younger sister with Down syndrome, so he was speaking mostly from a sibling perspective—but also a tiny bit from the perspective of a doctor who runs a clinic for people with Down syndrome.
Both Dr. Skotko and Sue Levine were excellent—really engaging and with a lot of good feedback on what the sibling experience is like and some positive ways to address questions and challenges. I usually slink to the back of the room in things like this, but I admit I sat right up in the second row for this one!
He wore fancy pants! I was excited. If you want the background on the fancy pants, here’s a link to the story. It’s a good read—and one of the things I read very early on, when Sam was a wee baby. Apparently until GQ magazine issues a public apology for mocking people with Down syndrome, Dr. Skotko has vowed to wear the loud pants when presenting.
We broke for lunch, and then I went to a presentation on accommodations and modifications in inclusive education. It was relatively engaging and had a fair bit of useful info, but it wasn’t quite as dynamic as my first two sessions. Still worth attending, though.
Chris had spent the day in financial planning sessions and a session about the National Institute of Health’s research plan and clinical trials for people with Down syndrome, with a dash of neuroscience thrown in. He loved the first financial planning session he went to and also really enjoyed the neuroscience/NIH one. (The company he works for actually did a drug trial on Alzheimer’s and people with DS, so you can imagine it was particularly interesting to him.) The second financial planning session he kind of fundamentally disagreed with, so it wasn’t his favorite. (I’ll spare you the details, but when he explained to me what he felt the presenter was trying to get across, I disagreed too.)
I also took a moment to stop by the NDSC booth and film a testimonial about our experience with Medicaid with my two favorite Medicaid recipients. (Sam actually has Medicaid, and Theo has benefitted through services he has received through the school system.)
Saturday night we had dinner with my advocacy/whisky pal and her family, as well as a local family we know and another friend of mine who moved up to Oregon last year. (Her son with DS is about the same age as Sam.) It was a relaxed, fun dinner—so much fun that I didn’t even mind missing the big NDSC dance! Chris put the kids to bed, and I stayed downstairs and had a drink with a bunch of other people from the conference. I’m not generally a terribly social person, but I love socializing at these things. I just find that by and large, I’m surrounded by a lot of like-minded people, so I feel very comfortable and enjoy talking to them. My introvert personality goes into hiding for a bit, and I play extrovert for a while.
Sunday morning we had two more sessions. I went to one on inclusive education that actually turned out to be covering information I already knew—about IDEA and the laws that protect inclusive education. Given that we’ve already had to take legal action once, I’m already fairly well versed in that part of things. 😉 So, I slipped out partway through and went to watch the talent show instead. What fun! I even got to see some of the cast members of Born This Way strutting their stuff!
It’s Cristina and Elena up on stage!
Everyone was getting their pictures with the cast, and I admit I’m rather envious of that! I’m not outgoing enough to walk up and ask for a picture, so instead I just went all creepy fan-girl every time I passed them in the hallway and hissed to Chris, “It’s Elena from Born This Way!” or “Oh my gosh, look—it’s Rachel!” I’m pathetic, I know. But I also figured they might be a little overwhelmed by people stopping them for pictures, so I’d just stare at them instead. So much better, I’m sure—HA!
Chris went to a session on Down syndrome, cognition, and Alzheimer’s research while I was watching the talent show—he said it was fascinating, but a lot of information to take in. And then after the break, we both went to our final session: on the ABLE Act and ABLE accounts. That session was excellent as well! Much like with UDL, I knew what ABLE was, and I knew the basics about ABLE accounts, but I didn’t have an in-depth understanding of exactly how they differ from state to state, how they differ from special needs trusts, and so on. After that session, I feel much more confident in knowing what they are and what we should do to set up one for Sam and possibly one for Theo.
And then, all too soon, it was over and time to leave! It’s a funny thing: The conference is so jam-packed with information that you’re kind of exhausted and on information overload from all you’ve learned. But at the same time, when the end comes, you’re sad it’s over. Because it’s just awesome to spend an entire weekend with people who are in the same mind-space as you on so many things. I don’t mean politically or even necessarily philosophically—though it’s doubly fun when you find people you match up with that way, too—but rather people who understand exactly what you mean when you say something like, “Well, we already have a special needs trust, but we’re thinking of setting up an ABLE account too, so that his Medicaid won’t be affected if he earns too much money or if people gift him money, and his SSI won’t be suspended unless he hits the threshold.” If I said that sentence to a lot of people, I think they’d be stumped on a whole lot of pieces of it: special needs trust, ABLE account, Medicaid, SSI…. But if I said it to anyone at the conference, the vast majority would understand exactly what I was talking about. It’s cool to be around a bunch of people who know exactly the kinds of things that float through your head when planning for your child’s future.
And even more cool is being around so many people with Down syndrome! I’m finding we’ve reached the age with Sam where we’re getting more stares. Not necessarily unkind stares—sometimes just curious, sometimes filled with pity, and sometimes rather perplexed. I don’t like the stares. I think people often don’t even know they’re doing it, so it doesn’t necessarily make me angry (unless I think they’re just being a jerk—then I get annoyed), but it makes me somewhat uncomfortable and very protective of Sam. So it’s nice to be in place where everyone around us either has Down syndrome themselves or is lucky enough to have someone with Down syndrome in their life. It’s like being in the coolest, most fun little bubble.
We won’t get to be in that bubble next year, since we’ll be on our epic road trip all summer, but hopefully in 2019, we can revisit the bubble. Because I sure do love it!
The whole reason we get to be in the bubble—because this picture is cute, so you needed to see it!