Sep 18, 2016: I’m Baaaaaack!


And, we are back to our regularly scheduled weekend blog posts! The last two weekends of traveling threw me off my blogging schedule, but now I’ve got my feet firmly planted at home for the foreseeable future. A possible work trip to Cincinnati looms in the future, but not until late February. I’m sure we’ll plan some sort of summer trip for next August. I’ll have the third annual Rockin’ Mom Retreat in September. And Chris longs to do a repeat Disney trip on my birthday weekend, but we’ll see whether that’s in the cards. So for the moment, I’m back here on the home front for the next several months.

But I ended my summer travel with a bang. The retreat last weekend was amazing! Seriously amazing! I had a great time at it last year, too, but this year was even better! I can hardly wait until next year, when the Rockin’ Moms take Chicago!

I wrote a blog post already about what the retreat meant to me emotionally. Click here if you missed it! But now let me tell you about the nuts and bolts.

I flew to Dallas early Thursday morning because I had a strategic planning meeting to attend on Thursday afternoon. That gave me time to settle in and relax before the retreat itself began, which was really nice! Next year, I think I’ll do the same thing (regardless of whether there’s a strategic planning meeting to attend!). I helped with last-minute retreat prep—putting together swag bags and such. And then after the meeting, a couple of us headed over to meet some other Rockin’ Moms at a wine bar in downtown Grapevine. Tasty sangria and good company!

I had my first Uber experience there, too! And my second and third, for that matter. While I wouldn’t be likely to take Uber alone (just because a woman traveling alone…you know…), it was a good experience while with other people. Our Uber driver to the wine bar passed a bar where we had a Saturday night event planned, and my riding companion said, “Oh, that’s where we’re going Saturday. It’s kind of a biker bar, I guess.” (The “biker bar” was chosen at the last minute, when the venue we had selected for the Saturday night Mom’s Night Out closed its doors for good less than two weeks before the retreat!)

The Uber driver got slightly huffy and corrected us: “I wouldn’t call that a biker bar; I would just call it a bar where bikers sometimes go. There’s a difference.” Well, okay then… For the record, we went on Saturday night, and I would call it a biker bar. We had a blast, though, so who cares what it is or isn’t?!

I spent Friday morning helping set up the retreat as soon as we got access to the ballroom area. (Or I guess it’s a conference room, but it was huge, more like a ballroom.) I set up the giveaway table—every mom to attend the retreat was able to, at some point, come to the giveaway table and choose a prize. There was some good swag there!

I managed to snag a quick lunch with two Rockin’ Moms before returning to go over the A/V job again. I was in charge of running the slideshows for the event, and we had technical difficulties with getting the sound to play on one particular video. Argh! After a long while, we thought we had it fixed—but we didn’t. It made for a slightly embarrassing moment during the presentation, but at least the Rockin’ Moms are a forgiving crowd!

The moms started arriving for check-in at 4pm, and I put on my Extrovert hat (I normally wear the Introvert hat) and set about mingling. It was so amazing to see old friends from last year’s retreat and meet new friends who hadn’t come last year! There are several Rockin’ Moms from the Dallas area who I had been really looking forward to meeting, and it was so great to finally get to hug them in person!

Our keynote speaker on Friday night was Sandra McElwee. That name might not mean anything to you, but it left us pretty starstruck! Sandra is the mom of one of the cast members from Born This Way: Sean. I actually know Sandra in passing—we’re Facebook friends, and when I took the job of Medical Outreach Alliance Coordinator for our local DS organization, Sandra and I had a long phone conversation about the program, as she had set up a similar one in Orange County some years ago. Plus, I met her and Sean at NDSC last year. So I know her…but not terribly well. And since I’ve last talked to her, Born This Way has become a hit—and won an Emmy! Woohoo!

Let me digress here for a moment: Have you seen Born This Way? If you haven’t, do! It’s on A&E, but I think you can stream it various other ways, too. It follows the lives of seven young adults with Down syndrome. Their parents are cast members too, because they share their insights on parenting their kids and what it’s like to be the parent of an adult with an intellectual disability—in terms of encouraging them to be as independent as possible, etc. But the seven young adults with DS are the primary focus of the show—as they should be. And with any show—reality TV or otherwise—there is room for critique, but overall I think that Born This Way does an excellent job of using the format of entertainment to introduce people to the world of adults with intellectual disability. Plus, it’s just downright fun to watch—the seven young adults have a wide variety of personality traits and a fun dynamic between them. Chris and I look forward to it every week! And given that it just won an Emmy, I am hopeful that it’ll be back for a third season next year!

Anyway, Sandra was our keynote speaker on Friday, and she was excellent! I knew her and Sean’s story fairly well because she has published a few books about it and is pretty open about it on Facebook, but it was still interesting to hear details I hadn’t heard before and to hear her tell the story in person. People have criticized Born This Way for showing only “high functioning” (not my favorite term!) people with DS, but Sandra made an excellent point early on, when she took to social media to essentially say, “Dismissing Sean as being too ‘high functioning’ dismisses all the hard work he put in for many years to get to where he is. It wasn’t easy for him. He has worked hard his entire life to be the person he is today, and I can assure you that if you had seen him as a young child, you likely wouldn’t have used the term ‘high functioning.’ He got there because he worked hard and because he was fully included in school.” To those of us with young children who are really struggling with things like speech (ahem!), it’s pretty inspiring to hear her describe how Sean didn’t speak until fourth grade and had apraxia—and yet now, he is a well-spoken adult.

Unfortunately, Sandra’s presentation was the one with the audio goof, but she didn’t seem fazed by it.

We had an open bar/heavy appetizers reception until 9, but the heavy appetizers weren’t actually heavy, so most of us headed to the hotel bar/restaurant for dinner after. (Very few of us had cars, and most of us had had a couple of drinks, so we were sort of stuck with what was walking distance…which was the hotel bar!) Unfortunately, despite being forewarned that this was likely to happen, the bar was unprepared for the onslaught of Rockin’ Moms! They had one waitress working, and it was only her third day! She was so sweet but obviously quite overwhelmed. I mentioned as much to her, and she said, “Oh, but you guys are all so nice!” Indeed. We’re a cheery crew. 🙂 And no harm done—we had to wait over an hour for our food, but it eventually arrived and we were all fed and happy.

The retreat got started a little late on Saturday morning, but for very good reason. A man had come in to share his story with the president and VP of DSDN. Evidently, he had met some Rockin’ Moms in the elevator, and when he asked what they were at the hotel for, they explained that they were Rockin’ Moms there for a retreat. He was at the hotel for some other conference or event and was shocked to hear that they were Rockin’ Moms—because his own daughter is a Rockin’ Mom! In a strange coincidence, she is the Rockin’ Mom who lost her three-year-old son just weeks ago, which shattered our little community—I think we all sat down and cried when we read that Jude had gone into cardiac arrest unexpectedly and passed away. It was pure coincidence that this man happened to be at the Dallas Hilton on the same day as the Rockin’ Mom retreat. So he came in to say hello and to say how much it meant to him to know that his daughter had such a strong support system in the Rockin’ Moms, particularly given the terrible events of the past couple of weeks in their family. Funny how fate brings people together sometimes, isn’t it? There are only about 2,000 Rockin’ Moms, and only 120 at the retreat—and yet this man just happened to run into us!

When he left, we had our first speaker of Saturday: Laura Buckner from the Institute for Person-Centered Practices. She was fabulous! I had a chance to talk with her personally before she started her presentation, as she was setting up her A/V equipment. (Thank god she brought her own, so I didn’t botch anyone else’s audio!!) She said she so wished she’d had a support organization like ours when her son was young, because she only knew maybe five people who had the same diagnosis while he was growing up. I wish I could remember the name of his disability, but I can’t—she described it to me as “like the Elephant Man’s syndrome,” in that her son grows tumors inside and outside of his body. And part of that results in intellectual disability.

Her son, David, is now an adult, and like Sean from Born This Way, he was fully included in school all the way through. Not without a fight, of course…but he was. Laura’s presentation was amazing and inspiring, and a lot of moms rated it as their favorite part of the retreat. We laughed, we cried, and we were inspired. I find that I can’t stop thinking about some of the things she said. When talking about IEP meetings for him as he approached adulthood, for example, she said she told the administration:

We envision David living a life of choice. We envision David having relationships he feels are meaningful. We envision David doing work that he enjoys and that makes him feel productive. We envision David living with people he chooses to live with.

That just struck a chord with me: Her goals were all about David being able to live a life as much like anyone else’s as possible, in terms of making his own decisions and carving out his own life, rather than doing what other people told him he could or should do. And David is doing just that! He has a job he’s enjoyed for quite a long time, and he does it well. He started his journey to independent living by helping his dad retrofit a treehouse in the backyard that he could live in semi-independently, coming into his parents’ house to use the bathroom. (Plumbing didn’t happen in the treehouse!) He is now taking the next step to independent living by helping his dad build an apartment on the back of their family business, so he will live on the business site while his parents live in their house a short distance away.

Laura talked about David wanting to run cross-country, but having physical limitations that made that seem like an impossibility—and a coach who said, “He loves to run. So he’s going to run” and worked with David until he could run and in fact ended up winning awards for his running.

And she talked about why inclusion was the best road for him. Laura worked in special education for I believe almost a decade before quitting and changing her career focus when she saw how much better the children who were in inclusion settings did than those who were educated in segregated special education. She told us about how at IEP time, she would explain to the teachers and administration, “I know he’s not going to understand all of the material in every class, but he’ll understand some of it—and that piece he can understand is what we’re going to test him on.” And she went on to say that she was certain he would absorb somewhat more than that piece, though they’d never know for sure exactly how much—but something. She then told a story of how David took a Shakespeare class and really didn’t seem to understand much of it—but years later, at a dinner table conversation, his dad said something about Romeo and Juliet, and David corrected, “No, Dad, that was Macbeth.” And he was right! And that right there was a pivotal point for many of us watching the presentation—Laura said, “Do you see? That is why inclusion was the best for him. It allowed him to be a part of the conversation. If he’d been in special ed, he never would’ve been exposed to things like that, and he wouldn’t be able to join the conversation. We want David to be part of the conversation.”

Well. You could’ve ended the presentation right there, and I would’ve been sold. That’s exactly it. I don’t ever want Sam to be on the fringes or left out because he has Down syndrome. I want him to have the chance to be part of the conversation in whatever way he can!

At the end of the presentation, Laura talked about how the woman who initially encouraged her to pursue inclusion for David came up to her at David’s high school graduation and said, “I have to be honest with you: I didn’t think it was going to work for David. But it did because you believed in him.” Apparently the woman had encouraged inclusion because she felt that was the best educational course for students with special needs overall—but deep down, she didn’t think David would be able to succeed. But he did, and she credited his mother’s belief in him for it. Laura, of course, credits any number of other people along the way, too—including David’s school principal and the coach who helped him learn to run. But the takeaway I got from this is: Believe in your child and let him show you what he can do. Which is something I already knew but can always use a reminder on. When you live in an area where education administration tries to tell you that you’re doing your child a disservice by not putting him in special ed, you sometimes begin to doubt your own instincts. This was a good reminder to keep believing in Sam and letting him show me everything that he can do—so that he can be part of the conversation.

Hearing about this presentation from me isn’t the same as seeing it. If you ever get a chance to see Laura Buckner speak, I highly recommend it. She is relatable and funny and interesting—really very much worth your time!

Though she did bring us all to tears by showing a Garth Brooks video, of all things. I had completely forgotten about this video, which came out around the time I was finishing high school (a long, long time ago, in a galaxy far, far way…). And now I watch it, and tears pour down my cheeks. Even if you’re not a Garth Brooks fan, click here to watch it—and have the tissues ready.

We did some service projects on Saturday, too—putting together welcome gifts for new moms, writing handwritten notes to them, etc. And we had pampering time! There were craft projects we could do. A coffee business that employees people with intellectual disabilities gave us free iced coffee drinks—yum! Mary Kay was there, giving hand massages or something. (I don’t use makeup, so I skipped that one.) And the most wonderful masseuses, too, giving five-minute chair massages. I had a nasty headache by that point (not enough sleep, too much crying at Garth Brooks videos and inspiring speeches!), and I told the masseuse I would appreciate anything he could do for my head/neck in five minutes, and would you believe it? With a five-minute intensive head/neck massage, my headache disappeared! The Advil I had taken hours before did nothing, but the chair massage vanquished it!

And then it was time for Saturday night fun—the Mom’s Night Out at the “biker bar.”

Okay, probably the less said about this, the better. What happens in Texas stays in Texas, right?! Let’s just say I had so much fun—that I laughed more and harder than I have in a very long time! Let’s just say I had numerous margaritas, because I knew I had a safe ride home and my Rockin’ Moms to keep an eye out for me. Let’s just say I danced with reckless abandon, which I never do because I’m usually far too self-conscious. Let’s just say I may or may not have autographed a biker’s belly. 🙂 Let’s just say I was part of the 3am crowd who finally staggered into bed around 3:30, after an “avoid a hangover” trip to Whataburger for greasy food.

I never cut loose like that. But I needed to cut loose. I’ve been having some up and down days lately, and it felt good to just relax and have a blast for one night!

The next morning, I can’t say I was overly perky when my alarm went off at 7:15am for the Rockin’ Mom run. Let’s just say I didn’t run. Let’s just say I only completed 2.5km, not the full 5k. But let’s say that I made it out there, cheered people on, and got my medal. 🙂 Then went and relaxed by the hotel pool with a few Rockin’ Moms before I had to leave to fly home.

I missed my boys, but oh, it was so nice to take a few days off and just look out for myself! And to hang out with awesome women who make me laugh!

And now it’s back to the grind. I got home late Sunday night, and Sam started his Peer Development Class (PDC) on Monday afternoon. What a debacle that almost turned out to be! Sam is currently in a very stubborn phase where he does not like any change in schedule. Arrive two minutes late to preschool? Tantrum. Pick him up in the car instead of with the stroller (from walking)? Tantrum. Delay usual iPad time in favor of some other event? Tantrum.

So you can imagine that when I suddenly brought him to a new class—even one where he knew a lot of the kids and teachers—he was not pleased. Plus, I’d had to cut his nap short to get him there—never a good thing. He squalled for twenty minutes before finally agreeing to step foot in the room—and he certainly wouldn’t do it for me! Marianne, the program director, had to literally dance him into the room. And of course, once he was in there he had a blast. But just getting him over that hump was…fun. Not. I’m hoping this week is much better!

I should clarify, by the way, that Sam’s tantrums really aren’t that bad. A certain other family member could throw epic tantrums, and I’m told an adult in this family could also throw pretty mighty tantrums as a kid. Sam’s tantrums are minor in the grand scheme of things, and I know it’s a developmentally appropriate stage for him to be going through…but I can’t say that makes me enjoy them anymore! It’s also why my current reading material is this book:

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Theo continues to do well in his class. He’s a little bit chatty and needs to work on that, but overall he is doing well and enjoying school. He made a new friend who is the “new kid” in school this year, and they play basketball at recess together. Theo has actually gotten much better at basketball. We took him and Sam out to the park this morning, and I was surprised by how many shots he made! He’s quite short for his age, so I didn’t even think he could make it up to the hoop, but he does on more occasions than I would’ve expected. He’s pretty sure he’ll be the next Steph Curry, and I’m not sure that’s the case, but he’s having fun and getting pretty decent at it!

And Chris led his first Pack meeting of the year as Cubmaster. It wasn’t without its stresses, but he is going to make some changes for the next meeting that should make things easier. I came home from Dallas to find him sick and Theo and Sam with slightly runny noses, which they kindly seem to have passed on to me…but it’s pretty minor, and I’m just glad I was healthy for my trips to Virginia and Dallas!

And imagine this: Sam’s new preschool doesn’t send him home for simple boogers! If we were still at the old school, I guarantee he would’ve been sent home every day. I explained to the new school about Down syndrome, narrow nasal passages, and chronic sinusitis/rhinitis (and how boogers don’t necessarily equal contagious illness for kids with these issues), and they were cool with it. Imagine that! l tried explaining it to his old preschool numerous times, and I still got called every time he had a booger. Heavens, I do not miss that! (Obviously, if the runny nose was accompanied by fever or nasty cold symptoms, that’d be another story. But you know how every class has the boogery kid, who is perpetually drippy during the fall/winter/spring? Sam is the boogery kid. Sure, he’s sometimes legitimately sick, but often he is just boogery. Which has forced me to make peace with my natural hatred of boogers, but that’s another story….)

As for me, I’m now officially back to work after a summer mostly off and back-to-back weekend trips. And I’m starting with a bang—teaching three editing classes, revising an editing class, assisting with the revision of a second editing class, writing five books, and continuing to do medical outreach and legislative advocacy work for our Down syndrome org. I may not see the light of day until January!

Oh! And after 29 days without (and five service calls!), we finally have a working stove and oven! HUZZAH!!! No more cooking on the camp stove!

And with that, I leave you with random pictures collected on my phone over the past couple of weeks. Not this week but next week, I’m renting a fancy lens for a wedding I’m backup shooting on October 1st. So I’m hoping to use the boys and pets as practice subjects while I get used to the lens. Maybe I’ll get some good shots out of it! But for now…iPhone snaps!

Have a good week, all!

Seriously naughty cat:

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A progression of images showing Sam’s “excited” face/pose as he sees his preschool’s bus backing into its parking space. This is big stuff, people! The second image cracks me up!

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Pork belly and shaved brussels sprouts–cooked on my REAL STOVE!!!

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Green chile tamales with black beans and roasted veggies and salsa:

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Handsome Cubmaster and Bear Cub:

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Grilled cheese on focaccia and some sort of squash/chickpea stew that was rather forgettable:

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This one didn’t photograph well and didn’t taste very exciting, either. Tomato soup with avocado and tomato grilled cheese sandwiches. This was from our Gobble box—yet another meal service I tried, this one with a promise that the meal can be on your table in 10 minutes. A great idea, but we didn’t love the food. It tasted okay, but it was all squeezed out of bags, which I couldn’t get past (especially after Chris jovially said, “Hey! It’s like prison food!”)

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That’s my sweet boy lighting up the Jumbotron at Times Square in NYC, y’all!!! I took that picture last fall. Wish I could’ve been there to see it in person, but hey—at least one of my fellow Rockin’ Moms got a snapshot of it for me!

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Side note: When they handed us our little bundle of joy in the hospital four and a half years ago and acted a bit like he was some sort of disappointment, I wish someone would’ve tapped me on the shoulder and said, “Pay no mind. This kid will be lighting up Times Square in four years.” How can you see this and not smile?!

Hiller Aviation Museum hosted an Open Cockpit Day that was free for all Scouts on Saturday, so we trekked over there to participate!

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This helicopter had a little flight simulator on board. Theo and Sam crashed spectacularly!

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This was super cool. They had Google Earth connected to giant screens. Theo’s looking at our town here. That’s Mt. Diablo you can see in the background! We zoomed in our house and realized the image was taken before we bought it last year—the backyard is still an overgrown jungle on Google Earth!

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There’s a Rita’s Frozen Custard near the aviation museum, so of course…

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Fuzzy pic, but the finickiest eater in our family likes the custard so much that he was shoving his tongue into the bowl to get every last drop!

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Baked ziti with sautéed mushrooms and spinach, with garlic bread:

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Sunday morning at the park, before it reached 99 degrees (GROSS!):

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Sam actually spontaneously said “Pam turn!!” when he wanted the ball—this is huge! He rarely speaks spontaneously unless it’s to ask for food, so we were really excited! (And yes, he does call himself “Pam”!)

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Hello, “Pam.”

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