July 24, 2016: NDSC Envy

Folks, I’ve got a case of the blues this week. Remember last year how I went to the NDSC (National Down Syndrome Congress) Conference in Phoenix and had a phenomenal time and swore I’d go again this year at all costs? Well, yeah… “all costs” just didn’t end up being a reality. Short of selling a kidney, there was no way we could afford the plane ticket, conference fee, and a hotel room (even if I roomed with someone), so I wasn’t able to go. And I realize this is a total first-world problem, but I have to admit that I’ve been down in the dumps about it all weekend. My friends who are at NDSC are having an amazing time, attending all sorts of fascinating sessions about medical advances in Down syndrome, speech therapy techniques, and educational opportunities for people with Down syndrome; hanging out with the cast of Born This Way (if you haven’t watched this A&E show, I highly recommend it! Season 2 just started last night, I think!); and spending an entire weekend making connections with families who know what it’s like to be part of this amazing world. I so wish I would’ve been able to join them!

On the bright side, the conference is being held in Sacramento next year, so you know I’ll be there! It’s a small consolation this year, though, when I’m seeing all the pictures of my friends having an amazing time at the conference in Orlando.

I should say, though, that when we discussed the finances for travel this summer, we decided we could afford one plane trip for me. I ended up choosing to go to the second annual Rockin’ Mom Retreat in Dallas in September. So really, all is not lost! I do get to spend a weekend with a bunch of people from the DS community who I love! Though it is sort of a working weekend; since I’m a member of DSDN’s Board of Directors now, I actually have to work at the Retreat. 🙂 But still, a whole weekend with a group of awesome women—I can’t wait!!

And in the nearer future, I get to see some Rockin’ Moms in just a couple of weeks, when we head to Portland for our family trip! A couple of Rockin’ Moms live in/around Portland, two more are driving down from Seattle, and another one is trying to see if she can drive in from Spokane. We’ve got a Friday night dinner and a Saturday morning/early afternoon play date planned, so that’ll be fun! A couple of the moms have older kids Theo’s age, too, so he will enjoy getting to play with them while Sam plays with the Rockin’ kids and I hang with the moms. (Meanwhile, Chris will be the token male in the group. I jokingly told him that he was going to get to watch ten or so children while the mamas and I hung out, and he actually believed me! He went pale and said, “You didn’t think to discuss this with me before saying I’d do it?” Ha ha, I need to stop torturing that poor guy! He’s so much fun to tease, though!)

I can’t remember if I mentioned our vacation on here. I usually don’t ahead of the fact because I don’t like to advertise when our house will be vacant. But this year, our house will not be vacant; our petsitter is actually going to stay at our house while we’re gone. So, would-be robbers, take note: Our house will not be vacant while we’re gone. Sorry to say you won’t have the chance to steal our nine-year-old television or our broken-down couch or assortment of cheap IKEA furniture. Your loss.

So anyway, vacation! While the amazing Mark is watching our house and pets, we’ll be driving up to Portland and staying eight days there. (We’ll stay one night in Ashland on the way up.) We’ll be spending time with my sister (who just moved to southern Washington, just over the border from Portland), visiting some friends, and enjoying the local area. Portland has SO many fun things to do with kids that we will have no shortage of activities! Plus, the food there is pretty amazing, and I do love good food!

Normally, we would then head farther north and visit Auntie Lisa in Seattle. However, Auntie Lisa will be off on her own roadtrip this year, so instead of traveling farther north, we decided we’d take a side jaunt west on the way home. When we leave Portland, we’ll head southwest to the far northern coast of California and stay in Crescent City for three days. It’s right at the gateway to the coastal redwoods, which I have been longing to see and know the boys will enjoy, so we’ll do that. We’re also planning to spend some time tidepooling, which Theo loved on our vacation last year. Then we’ll finally head home—hopefully with a stop in Fort Bragg to see Chris’s relatives on our ride home, though I haven’t yet confirmed that.

Anyway, we leave in just over a week, and we’re very excited! When we get home, we’re supposed to have a visit from friends of Chris’s who will be in the area from back East (still need to confirm that), and Chris is taking a couple of extra days off to just relax and spend time around the house before going back to work. He has six weeks of vacation right now, which is the maximum he can accrue, so he figured he better use some up. 🙂 Theo and Sam have just a week before going back to school after we get home, so we’ll use that last week to relax, get any school supplies we need to purchase, and maybe just do a few local bits before the boys start back to school: Theo in third grade and Sam starting a new preschool. Wow, this summer is going by fast!

Speaking of summers going by fast, the boys had another good week in CRP and camp. Theo’s big field trip this week was a trip to the California State Fair in Sacramento, which he enjoyed but was slightly bummed about because they didn’t have much time there so he didn’t get to ride many rides. He was describing the rides he rode to me, and I said, “Is there any ride you’re afraid of?” (because I love rides, but a couple of them sounded kind of scary to me!), and he said, “No! Why would I be?” I love his bravery! I hope he never loses that.

And Sam is continuing to do awesome in CRP. He is talking so much more! Much of it still isn’t terribly intelligible, but that will come. The important thing to me is how many more words he’s trying to say!

Sam apparently managed to charm a reporter who came to do a story on the CRP program, so he will be featured in the Danville section of the East Bay Times next Friday. I hope to get hold of a copy (it’s a different version of the paper than we get), but if not, it will also appear online, and I will definitely post a link for y’all!

It was media week for Sam: He also may appear in our local paper. I can’t remember if I mentioned it here, but his picture was chosen to appear on the Times Square Jumbotron in New York City again this year, for the NDSS Buddy Walk on September 17th. Because I am a part of two nonprofits (I work for our local nonprofit and I’m on the Board of Directors for Down Syndrome Diagnosis Network, or DSDN), I figured publicizing Sam’s story might be a good way to gain some exposure for these two organizations. So, the media director at DSDN helped me craft a press release, and I sent it to our local paper. Our paper does spotlight pieces on local kids who have accomplished something, so I thought it might be a fun one for them. They quickly responded that they really liked the story, and could I send them a couple of pictures to run with it. So I assume that means they’re going to run the piece, though they haven’t confirmed it in so many words, and they haven’t told me when. But I’ll keep checking, and if/when they do, I’ll surely provide a link to it here!

The press release is actually going to go out to the larger Bay Area media, too, but it hasn’t yet. Our local org recently hired a media person, and she’s been trying to get stories about our org into the media to gain exposure, so she’s going to send the release out to our media contacts and see if any are interested.

I realize this discussion of media makes me sound a bit like a fame-hungry stage mother. It’s not that at all. The reality is that working for both nonprofits has made me aware of three things: (1) Both are completely, 100 percent funded by donations and grants. (2) In the grand scheme of things, neither has very wide exposure. (3) Low exposure means fewer chances for donations to come in, which means less money available to fund programs.

So, because I believe very strongly in the work that both organizations are doing and I want to see them succeed, if I can help bring exposure to them in some small way, I’d love to be able to do so. DSDN is actually growing very rapidly, but they’ve only been in existence for two years, so they’re still small in the grand scheme. And DSCBA (our local org) has been in existence for nearly twenty years, but as I have gone around the Bay Area talking to hospitals as part of my medical outreach duties, I have realized that a lot of people who should know we exist had no idea we were out there! Which is really a shame, because DSCBA provides amazing services and support to people with Down syndrome, so I’d love to see more people know of its existence and be able to partake of what we offer.

So anyway, there you go: Sam may be in the media. I’m not a fame-hungry stage mother. And hopefully two organizations that I believe strongly in will get some visibility out of it.

In other news, Sam wrapped up his swim lessons this week! It was hit or miss: A couple of days he was really excited and did very well in the water, and one day he wasn’t so amused and did a lot of fussing. And on the final day, he was super fussy and refused to even get in the pool, which was unusual—even on his not-so-cooperative days, he has happily and willingly gone in the pool, he just hasn’t necessarily been pleased with what they do once he gets in. But on Wednesday, he just didn’t even want to get in, so I didn’t push it. It’s not as if he was on the brink of starting to swim anyway—it would’ve been more just putting his face in the water, starting to practice swimming strokes, practicing kicking, etc. So I told his teacher to take his half-hour off as a little break. I had brought Theo with me to see her, so she visited with him and helped him pick veggies in her garden instead. Meanwhile, Sam peed all over me and continued to fuss, even though I assured him that he didn’t have to go in the pool. I’d had to wake him to go to the lesson, and he often wakes up grumpy, so I figured that was the issue.

Um, no. Not at all. I wondered why his pee stench all over my clothes was so strong. I figured maybe it was just particularly acidic—maybe me hadn’t drunk enough that day or something. Wrong, wrong, wrong. It wasn’t pee. It was diarrhea. He’d had diarrhea all over me, but I couldn’t see it because my clothes were black (and his swimsuit was navy blue), so it just felt like pee.

Grosssssssss!! Mostly, though, I was just incredibly relieved that I hadn’t put him in the pool, because he would’ve gotten diarrhea in it, and then Ms. Karen would’ve had to cancel the rest of her lessons and not use her pool for 24 hours or something. (I forget the exact time a pool has to be unused after someone poops in it, but I think it’s 24 hours.) Oh my goodness, I would’ve been mortified! Very glad I followed my mommy instinct not to push him, even though I had no idea why he was so crabby. Good grief.

(By the way, no worries about Sam. It was a one-off event, and he has been fine ever since. I think maybe he ate something that didn’t agree with him, but he’s been fine ever since. Poop issues aren’t terribly uncommon in Down syndrome. Sam doesn’t usually have them, but he’s also not immune to them.)

Moving right along… We spent Saturday visiting Grandma Kathy and Papa down in San Jose. We had a lovely visit despite a very overtired toddler (Sam decided to get us all up at 5am), and we had a fantastic BBQ dinner! Sadly, Grandma and Papa sent us home with leftovers, which we ended up forgetting in the van. One of our two lovely children was such a handful on the 70-minute drive home that we were exhausted by the time we got home. We simply put the boys to bed and then collapsed in our bedroom for a good long time. Forgetting about the leftovers…which meant that when I went out to the van with the boys on Sunday morning, Theo cheerfully announced, “It smells like rotted broccoli in here!” And indeed it did. Rotted broccoli and old meat. Sigh…. What a waste of delicious leftovers!

On Sunday we ate Indian food at our favorite chaat house for lunch. (Well, three of us did. Sam flat refused his dosa after one bite—don’t ask me why, since it’s a simple crepe with no filling or spice of any kind. He likes plain bread, so that seemed right up his alley. But His Royal Highness refused it. Knowing this was likely going to be the case, I hadn’t ordered a meal for myself…and instead I ate Sam’s abandoned dosa!) Then we spent a couple of hours at the Lawrence Hall of Science. Finished up the 100-degree day with a dip in the pool before dinner!

Oh, before I forget, two videos from speech therapy for you. This one is quite short, and I included it only because you get a great view of his “excited” pose, though you also get to hear him say “go,” “stop,” and a couple of other words!

This one is much longer and probably only of interest to grandparents. You can see how many words he’s trying to say! “Eat” is one of his favorite words. Kid after my own heart!

Also, two book reviews: one of a children’s book and one of a sort of Down syndrome memoir. The children’s book is particularly interesting because of the approach it takes—what it’s like to be the sibling of a child with special needs. Also, it happens to have been written by a real-life sibling of a child with DS—both the author and his twin are ten years old! I thought that was pretty cool.

And a review of various meal-delivery services I’ve recently tried!

Okay, I guess that’s it for this week. Happy week, all!

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