July 27, 2014: Beaches and Reunions

Happy almost-end-of-July, folks! We’ve been scorching here for the past couple of days, but I can’t complain—we’ve had some lovely cool days and even a couple of drops of rain (unheard of for us in July!).

And in general, the scorching isn’t so bad because I don’t really have to be outside much during the heat of the day. Except when Chris has his 20-year high-school reunion at a park, which was the case on Saturday. 🙂

Having the reunion at a park was a great idea in theory—there were about 50 kids there, and it made it a family-friendly event. And the location was probably usually great—a big Bay Area park with trees; a big field where the kids could play soccer, capture the flag, and whatnot; a BBQ pit; and a little creek for the kids to wade in. (Okay, the sign said “no wading,” but wading was clearly the most popular activity of the day among many kids—and by far Theo’s favorite part!) Only one problem: It was hot, hot, hot. And no breeze to speak of. So we stayed for a very sticky 2-1/2 hours, and then we fled for the air-conditioned van and the promise of frozen custard.

Yes! Frozen custard! Again! I had gotten a tip on an ice cream store in San Jose that serves frozen custard, so naturally I had to check it out. And it was very, very tasty! I will definitely go back. I think I like Rita’s a tad better, but it was still very, very good.

And on the subject of frozen custard, I’ve gotten yet another tip on a custard place in Oakland that I must try! Sam and I visited my friend Jisun this week, and she gave me a tip on a “water ice” (apparently this is a Philly thing?!) and frozen custard shop near her house. Oh yes, I will be trying that!

Anyway, I told Chris that my payment for melting for 2 1/2 hours in the heat at his reunion was frozen custard, and he kindly obliged. 🙂 And then afterwards, we headed to Grandma and Papa’s to cool off with a dip in their pool.

Speaking of pools, Theo starts swimming again this week! His teacher took a week off and is now starting her final session of the summer, and Theo had eight days to make up, so we’re unexpectedly participating in this final session. (He missed the first seven days of swimming, which I had prepaid for, due to our trip to Virginia, and his teacher was kind enough to allow us to make them up later in the summer. She’s awesome!) Anyway, we’ll see how many more vegetables Theo earns over the next two weeks. 🙂

Theo had a big week at camp this week! On Monday (when it was thankfully cooler), they did a hike somewhere near Mt. Diablo, and then they went to pizza for lunch. I asked him how it was, and he said, “Great, Mom! The first bathroom was horrible—it had popcorn and peanuts and breadsticks in the toilet! But the second one just had pee. I used that one.” I was rather baffled—breadsticks in the toilet?!—until I remembered that the hiking field trip had included a trip to the pizza parlor, and that must be what he was talking about. (But still—who puts breadsticks in a toilet?! Or popcorn or peanuts, for that matter?! Ewwww. And evidently that is what stuck with him!)

On Tuesday, the day camp brought in a reptile/animal expert with a bunch of animals and reptiles for the kids to see, and Theo was very impressed by the huge monitor lizard. And on Thursday, he got to go on a field trip to the Chabot Science Center, which we’ve wanted to take him to but which I’d heard was for kids a bit older. But as it turns out, he really enjoyed it—especially “the giant nose that goes achoo! when you press it!”

I am truly going to be sad when summer is over and Theo goes back to school. I love his school, but he comes home tired and kind of crabby from the effort of doing hard things and things he doesn’t want to do, as well as trying to behave himself in class all day. I know that’s life—it’s what he needs to do in public school (or private, for that matter), and it’s not a bad thing for him to learn to go along with things he doesn’t particularly want to do. But it does make parenting more challenging than when he’s in day camp, which he enjoys, looks forward to, and comes home pleasantly happy and tired most of the time. Plus, you know, there’s that 40-minute drive down to his school every morning, versus the five-minute drive to day camp. Not insignificant! Ah well…

Speaking of day camp, I had an irritating event there on Monday. I’ve actually already written a blog post about it (as part of the blog hop I’m participating in), so if you want to read more about it, click here. Let’s just say it wasn’t the way I wanted to start my Monday, and I think the other parents are overreacting and not doing their own kid any favors. Also, here’s a link to another blog hop post I just posted today, in case you’re interested. This one is on connections and comforts.

Sam had a relatively uneventful week. He had two PT sessions this week because his PT is going to be out for a couple of weeks and then we’ll be on vacation. So we decided to do two sessions this week. And it’s a good thing we did, because they accomplished nothing during Sam’s Monday session. And this was not Michelle’s fault—Sam was a complete crab and refused to do anything for her! Well, except scream. He did a lot of screaming and whining. That was super fun. He also broke out of the playroom (where they do therapy), opened the baby gate into the kitchen, ran in, opened the pantry, and pulled out a bag of chips, saying “Oooooohhhhh!” happily. In an effort to appease His Majesty, we took the chips into the playroom and attempted to use them to bribe him to cooperate. No luck. After 40 minutes of her trying everything in her bag of tricks to get him to cooperate, I finally said, “Why don’t you go home early and see your family? He’s clearly not having any of it today.” And of course, the little stinker, upon seeing Michelle pack up her bag, miraculously stopped crying, gave her a thousand-watt smile, and waved bye-bye to her. Turkey!

He was like a different kid when she came back on Thursday. Smiling, laughing, playing ball with her… Go figure. And no, he wasn’t sick on Monday. Just very crabby, apparently. Anyway, here’s a video of him catching a ball! Can you believe it?! He did this about half a dozen times, until he decided it was more fun to laugh and play than to catch the ball. What shocks me is that Theo didn’t learn to catch a ball until he was almost six. So I was rather stunned to see that Sam can do it at 2 1/2. Though I shouldn’t be—I think 2 1/2 isn’t unusual for learning to catch a ball. I think Theo was the oddball on this one—much later than typical. But he, too, can finally catch a ball, so it’s all good.

Watching how differently my kids develop makes me roll my eyes about the fact that, as a new parent several years ago, I worried about developmental milestones. I don’t know about parenting years ago, but these days we’re all supposed to stress about when our kids hit milestones. Is he hitting the XYZ milestone yet? If not, you’d better worry! Argh. I understand why developmental milestones are important—if a child is consistently missing them and needs help, the earlier the better. Early intervention. I get that. I’m a fan of it. Sam’s doing fantastic with it. Theo’s done fantastic with his interventions, though they weren’t particularly “early.” But nowadays I kind of roll my eyes at the incredible emphasis placed on them. My two boys have developed at very different paces—Theo was a brainiac from an early age and has really advanced language skills. Sam, on the other hand, can’t really talk much yet (though he’s a signing ninja and he’s making big progress on vocalizing) but is far ahead of where Theo was at age 2 1/2 when it comes to motor planning and some simple motor tasks such as catching a ball. And in the end, they’ll both develop in the areas where they were a bit behind. To the same level? No, of course not—every person is different, and everyone develops differently. But in the end, they’ll both get to where they need to be. So I’ve really become zen about the whole “meeting milestones” thing—with both boys. Where they’re not meeting them, we work on it. But no need to stress about it. With help, it will all work out in the end.

Speaking of which, I read a wonderful piece this week. I read a lot of special-needs pieces, and occasionally I’ll post one that is particularly good, in my opinion. Click here to read one that I really liked. Honestly, I could’ve written this. I have said every single one of the main points the author makes. So incredibly true!

By the way, I mentioned Sam being impressive in the area of motor planning. Truth is, he’s impressive in other areas of planning, too! Let me explain what I mean. In case you aren’t familiar with the term, motor planning is “the ability to conceive, plan, and carry out a skilled, non-habitual motor act in the correct sequence from beginning to end. Incoming sensory stimuli must be correctly integrated to form the basis for appropriate, coordinated motor response.” (Thanks for the definition, North Shore Pediatric Therapy website!) In other words, a kid needs to plan and implement all the correct steps to accomplish a motor task that isn’t something they would normally do. Playground equipment, for example, requires motor planning. Crossing the monkey bars, climbing the rock wall, etc. This is an area where Theo has had difficulty—he tends to get stuck and unable to figure out how to get to his endpoint, whatever it is. Or he did, anyway. After a couple of years of OT, he has improved tremendously in this area. But Sam, we’ve found, is a natural planner. The other day I had him out in the backyard, and he was pushing a little ride-in car (a Cozy Coupe, for those of you with kids) around. He kept running into obstacles, but where 2 1/2-year-old Theo would’ve screamed and needed help figuring out what to do, Sam would calmly climb out of the Coupe, open the door, toddle around to all sides of it, examine the situation, and figure out how to move the car so it was pointed in the right direction again. It was amazing to watch as he did it over and over. (Particularly amazing given that the geneticist who met with me when he was an infant told me that “people with Down syndrome have no problem-solving ability.” Uh, I beg to differ, sir…this is nothing if not problem-solving!)

And one day this week, Chris tossed a ball for Sam, and it went under the boys’ little play table in the playroom. Instead of wailing at us to retrieve it, Sam calmly climbed under the table, got the ball, and carefully crawled backwards to get out and stand up without bumping his head. And at Grandma and Papa’s house, a ball rolled under the couch, and he retrieved it. When he saw the applause he got from Papa for retrieving the ball on his own, he purposely rolled the ball back under the couch so he could get it again. Only this time, it rolled all the way to the back. He laid down on his tummy to get the ball from the front, but immediately realized it was too far back to reach, so he stood up, trotted around to the back of the couch, laid down there, reached under, and retrieved the ball. Amazing!

Having watched one child struggle with tasks like this, it’s pretty amazing to watch the other so effortlessly accomplish them. But then the reverse is true, too. Sam struggles with things that were effortless for Theo by this age, such as talking and eating. They’re like yin and yang, those two. It’s actually very cool.

One more quick Sam story before I move on. I often wonder just how much of the perceived “cognitive delay” with Down syndrome is actually due to the delay in spoken language. I don’t doubt that there are cognitive delays—it has been proven, and I see it in Sam. But I sometimes wonder how much of it is just that kids with DS are typically late talkers, so they can’t show us how much they really know. I had one of those moments with Sam this week. I wanted him to take his thyroid medicine and amoxicillin, and he was being a stubborn poop—signing “all done” and whining at me and clamping his mouth shut. Then his favorite song ended on his little radio, and he wanted me to help him put it on again. (He knows how to do it, but the button is difficult to push, so he usually needs help.) I looked at him and said, “You want ‘Happy and You Know It’ on again? Then you need to take your medicine first!” He looked straight at me, stopped whining, opened his mouth, and took the medicine in one gulp. Smart little booger knew exactly what I wanted, and decided to oblige me only when he was going to get something out of it! Tell me that’s not a very typical 2-1/2-year-old!

Okay, moving on… I owe you an update on my health issues that I mentioned last week. I was a little iffy about putting my medical stuff on the blog, but I’m actually glad I did because I got some great suggestions from people about things I might try! So thank you for that. 🙂 I also went to the neurologist this week. I passed the neurology test with flying colors, and he said I seem to be very healthy overall. The clean MRI shows an 80% likelihood that I do not have multiple sclerosis, although there’s a 20% chance that it could still be that. However, he doesn’t think it’s that, and I’m going to trust him (for the moment, at least). The neuro I saw looked to be in his fifties and seemed very competent, so I’m going to trust that if his gut tells him it’s not MS, then it is likely not. At the moment, his best guess is that it’s all related to some sort of migraine-spectrum disorder. So, we’re working on that angle, and if I continue to have problems, then we can test further for MS. (That requires a spinal puncture, which I’m not overly excited to have, so I’m happy to pursue the migraine angle first. Not that I haven’t already had two spinal punctures when I had my boys, and they weren’t really bad, but I can’t say it’s something I long to do again! Kinda gives me the heebie-jeebies.)

He gave me a prescription for beta blockers (a cardiac medicine that is known to work for migraines), and I filled it but have not yet started it. Before I do, I’m trying some of the suggestions people had. Specifically, I’m trying slow-release magnesium and an iron supplement, as well as Vitamin D. Well, I was, anyway. The magnesium didn’t seem to be my friend, so I’m trying without it for a while. It was making me spend all of my time in the bathroom urinating! Seriously, like every 30-60 minutes. On Friday night/Saturday morning, this issue kept me up until 4am, which was not fun. I had even cut out the evening dose, in the hopes that I could get all my excessive urinating done during the day, but no…it persisted into the night anyway. So no more magnesium for me at the moment…. That may be a good thing, as I found I was having pretty significant dizzy spells each morning for about an hour after taking the magnesium. Yuck.

I’m not opposed to taking the beta blockers if I have to, but I’d rather try the other remedies first, as I don’t like the idea of daily medication if I can avoid it. So we’ll see how it goes. In the meantime, I’m relieved that the doctor doesn’t think it’s MS.

Anyway, now for the most exciting news of the week—an update on our fundraising for Sam’s Step Up for Down Syndrome walk! We got several donations this week, and so far we’ve raised more than $600! Woohoo!! So the winner of this week’s coveted prize is…drum roll, please…Dee Miner!! Thank you, Dee, for your generous donation!

I’ve already gotten in touch with Dee about her prize, but another donor made a suggestion that I think is a good one. If you don’t particularly want a prize and would rather us making a matching donation to yours, we would be happy to do that. So if you’re a weekly winner, you’ll have the choice of either a prize or a matching donation from us. However, Chris’s company will match a donation from us, so what we’ll likely do is compile a list of donations we are to match, and then make one big donation at the end, which Genentech will then match for us. Hey, it’s kind of like tripling your “investment” that way, right?! 😉 All in the name of a good cause…

Anyway! It’s late, and we just got back from a very long but very good day in Santa Cruz. We went to see Auntie Lisa, Uncle Chris, and Cason while they were visiting Lisa’s parents, and then we headed over to the beach for a few hours. The weather was perfect—sunny and warm, but with a nice constant breeze. We don’t go to the beach that often; to get to a good kid-friendly one, we have to drive about 90 minutes, and there’s a lot of packing up towels and changes of clothes and such, so we don’t get that ambitious very often. But every time we do, I wonder why we don’t do it more often, because we always have a wonderful time. Theo is never happier than at the beach, which seems to be some sort of sensory paradise for him (warm sand to roll in, crashing waves to create constant white noise, cool breeze, warm sun, salty-smelling air…he’s just in sensory heaven). And Sam is a total beach junkie who will run tirelessly toward the water, splashing in the surf like a madman. He even face-planted into the water today, and it didn’t slow him down one bit. I picked him up and carried him back up the beach a ways, and he squawked angrily and took off for the water the minute I put him down. (No worries, grandparents—we divide and conquer. One parent per child, watching them like a hawk at all times.)

Anyway, it’s late, so I’m going to sign off. Sorry for the lack of “good” pictures this week—all I have are iPhone snaps. Sand is a camera’s worst enemy, so I didn’t take my good one to the beach. Next week I’ll get some better ones, I promise!

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