Oct 27, 2013: Ailing Again…

Ugh, illness has struck the Small family again! Thankfully, it’s not the flu this time—just an annoying cold. Theo was sick last Sunday with a mystery fever. He still had it early Monday morning (so he stayed home from school) but then was fine by mid-morning. And he seemed 100% fine for three days…and then, late in the week, a mystery cough but no other symptoms showed up. It’s a somewhat nasty-sounding cough, although thankfully he’s not hacking all the time. But Sam now has the same cough, as well as sounding a bit congested. And I, too, now have cold symptoms (sinus headache, congestion, sore throat). So yay. I’m VERY excited to be sick again, let me tell you. Though at least this seems to be just a minor cold that hopefully will pass soon.

Our week was pretty quiet, save for Theo’s award ceremony on Friday morning! As I mentioned last week, he got an award for being able to count to 30, which evidently is an end-of-kindergarten skill. Although this is something he’s been able to do for a couple of years, it was still really fun to get to see him receive his award! He looked simultaneously so grown up and so young up there on the auditorium stage—his hair was messy and his jacket was askew and falling off of him, which he didn’t even seem to notice, but he stood up there very proudly, holding his certificate and pencil next to the object of his affection, Sabrina. It was downright adorable!

Have I mentioned Sabrina, by the way? I think she’s Theo’s first crush. He says she’s his best friend in class, and when they see each other, it’s always, “Hi, Sabrina! Hi, Theo!” Early on, he told me, “I like Sabrina. We can be calm together!” (His teacher had sat them next to each other in class, and I have a sneaking suspicion she used calm, gentle Sabrina as a model for good behavior for a certain antsy five-year-old.) And one day he told me, “Sabrina is a beautiful name—it’s like a flower…” with this very wistful, sweet tone. I have to laugh, thinking they’re a match made in heaven—they can sit and be calm and count to 30 and beyond together. 🙂

The other excitement from the week was that I actually had time on Wednesday to do some cooking. This never happens. I decided to make a slow-cooker full of seasoned pinto beans, a pot full of gluten-free pasta with iron-rich marinara sauce, and homemade apple-pear sauce out of the apples and pears we had gotten in our CSA box. My hope was to entice one Samuel to eat something other than Gerber purees, as his eating habits are putting us in the poorhouse! I calculated that it costs us more than $100/week to feed him…which is the same as the food budget for the other three of us combined! Given that I don’t want to start dipping into our retirement to feed this child, I figured I ought to try again to get him to eat something homemade. Historically, my attempts have met with failure, but I had better luck this week. He ate a few helpings of the pinto beans and the pasta, so it’s a start. He does not care for apple-pear sauce very much, but Chris loved it and scarfed it all down, so at least it didn’t go to waste. (Theo wasn’t a fan either. I don’t know why—it was sweet and delicious! My kids aren’t big sweets eaters, which leads me to wonder whether they’re truly my offspring!)

So we’ll see. I’ll keep trying to make homemade things and feed them to Sam. He is so hit or miss on feeding, though—and mostly miss. What he eats one day, he will throw on the floor and scream about the next. Oy vey. I recently talked to a woman who has a 16-year-old son with DS, and he, too, had a lot of feeding issues as a kid. (Actually, he still does. Joy.) She bluntly said, “It is unbelievably frustrating!” I have to agree. I don’t think you can truly appreciate it until you try to feed your kid three or four meals a day, and most of them end in him screaming, fussing, throwing food, or gagging. Beyond frustrating. The meals that do go well are a godsend…few and far between though they are.

But speaking of food, I have had a life-changing experience!!! Each week, I hold a live chat with my students, and when we’re finished with homework questions and such, we sometimes chat about unrelated topics. A couple of weeks ago, conversation turned to food, and we were talking about gluten-free items. I mentioned that I can’t eat gluten-free pastries or bread, as they’re almost all made with gums (xanthan, guar, etc.), and I can’t tolerate those. One of my students said, “Coconut flour! You need to try coconut flour and get this cookbook!” I forget the exact name of the cookbook, but I ordered a used copy off Amazon right away, and went to our local health-food store to buy some coconut flour from the bulk bins. When the cookbook arrived, I immediately baked a loaf of bread. It was tasty, but not anything I’d use for sandwich bread—it was more like a cornbread. Still, the flavor was far superior to the flavor of pretty much all gluten-free breads I’ve tried, so I was hopeful.

So on Wednesday, amidst my cooking extravaganza for Sam, I made some pumpkin muffins from the coconut flour cookbook. Wow!!! They were the first good muffins I’ve had in the 16 months since I stopped eating gluten! Moist, flavorful, delicious! I had Chris the Skeptic try a bite (before I scarfed down the entire rest of the pan), and even he said he couldn’t tell they were gluten-free! (He truly hates gluten-free baked goods with a passion. And I don’t blame him. They are pretty awful.) So this weekend, I made some banana-chocolate chip muffins from the cookbook. Those were tasty, too, though I overbaked them slightly, so they were a little more dry. Still, though, they didn’t taste gluten-free, which is a very, very good thing! I’m pretty excited to be able to eat tasty baked goods again! My waistline may not appreciate this new development, but I certainly do!

(By the way, coconut flour doesn’t taste at all like coconut, in case you were wondering. I do love coconut, so I wouldn’t have minded, but it doesn’t have a coconut flavor anyway. And, you can’t substitute it cup-for-cup for regular flour—it has a very high fiber content, so you need to add more liquid than usual to recipes using coconut flour. A one-to-one substitution will just result in dry, crumbly baked goods. Ewwww.)

And as long as we’re on the topic of food, I’ve become a juicing fiend! We bought a juicer a few weeks ago with some heavy coupons and gift cash to Kohl’s, and I’ve been juicing like crazy! I don’t have time to eat breakfast before taking Theo to school, so my theory was that I can juice up some fruits and veggies the night before and just make a quick smoothie to take with me on the road. The juice is really yummy—I’ve most done fruits so far, though I have also juiced in some carrots, celery, and kale. Fun! The other cool thing about the juicer is that it’s an easy way to use up stuff from the CSA box if we can’t come up with anything else to do with it. Pomegranates, for example. We keep getting those in our box, so I’ve just been throwing the seeds in with my juice. Tasty!

But enough about food—let’s talk about the weekend. On Saturday morning, we went to Justin’s second birthday party, which was super fun! It was at this place called Fire Stations 4 Hire, and Theo loved it! So did Sam, actually, though Theo is of the age where he can actually appreciate it more—Sam was mostly just happy to be crawling around exploring, which he can do pretty much anywhere. 🙂

There was a full-sized fire truck that the kids could climb all over and into—opening all the doors and compartments on the outside, pushing all the buttons on the inside, etc. They also had a control panel for all kinds of different lights and sirens and CB radio stuff, and Theo loved playing with that. And they had a little two-story play firehouse complete with a real pole to slide down, so Theo was a big fan of that. I think his favorite part, though, was clomping around in the giant fireman boots. He looked ridiculously cute staggering around in them. 🙂

After the party, we headed down to San Jose to see Grandma Kathy and Papa, and we had a nice, relaxing visit. Sam was on nap strike, so he was a bit overtired, but he managed and was reasonably cheery most of the time (except while eating lunch—diva!). And it was a gorgeous fall afternoon, so we walked the boys to the park and had a nice time there.

On Sunday, we headed to the Bay Area Discovery Museum, which is my favorite kids’ museum these days. I’ve always loved it, but I especially love it now because it’s perfect for both boys. There is plenty of stuff for a kid Theo’s age to do, but there is also a lot of stuff for a baby of Sam’s age/developmental level to do. Sam was particularly enamored of the xylophones, and it turned out to be a nice PT exercise for him, because he stood up for a long time on his own, happily playing the xylophones with his mallets! And Theo, who has spent…oh, four years or so…ignoring the art studio, spent most of his time in the art studio! They have an area where you can paint on windows and squeegee it off, which he loved. They had a green ooze table set up where kids could play with ooey-gooey ooze like you would with Play-Doh, which he liked. And they had a building-blocks area that he spent a lot of time in, pretending to take out the trash. (He would put all the blocks in a bin and then take it to the dump, apparently. Hey, whatever works…I was just glad to see him picking up blocks! Wish we could inspire him to do so at home!) He and another little girl also built a “governor’s mansion,” and it was fascinating to watch. The little girl was pretty bossy, so Theo mostly just hung out and did what she commanded, but she kept building the mansion so tall that it would topple over. Theo was staring at it thoughtfully as she cursed the blocks not working, and he said seriously, “I think you’re building it too tall.”

“No I’m not!” she insisted. “It just doesn’t work!”

“Maybe you should try to build a shorter building,” Theo suggested helpfully.

“No! It will be fine!” she announced.

“I think you’re making it too tall,” he repeated.

So why did this conversation fascinate me? Because one area where Theo struggles is with visual-spatial tasks. I’ve seen him attempt them numerous times—puzzles, patterns, etc.—and they just do not come easily to him. So the fact that he was able to study this building and see what the structural problem was delighted me—it suggests to me that his visual processing may be improving. It’s not a pattern/puzzle task exactly, but to me the skills look the same—he needs to look at something and assess why it’s not working and what needs to be done to fix it. And he did that. So I was delighted! (For the record, the little girl never took his advice, but that’s okay. When she left, he promptly took down her tower, built a much shorter, longer structure, and seemed quite satisfied that it worked.)

And speaking of Mr. Theo and his mad skills, I have to tell you about one of the most exciting parts of the week! I got a Scholastic book order from his teacher some weeks ago, and I ordered a little set of science books from it. They’re just little eight-page early-reader on topics of science and nature—Theo has been into science lately, so I figured he might like them. They arrived this week, and I cut the plastic off them and handed the first one to Theo. “Why don’t you try reading it to me, instead of me reading it to you?” I suggested. “I bet you can recognize some of the words.” We’ve noticed he’s been sight-reading more words lately, so I figured he’d be able to pick some out. Um…yeah. He did more than that. He read the entire book to me without asking for any help and without struggling or sounding out any words. I was stunned and handed him the next book—same thing. Chris came downstairs, and I said, “Watch this!” and handed him the third book. And the fourth. All told, he read all four books and only needed help on two words in all of them. Wow! Evidently he’s reading far more than we knew!

I just love seeing these developments, because we don’t sit with Theo and work on this stuff—we just see where his mind takes him, and if he’s interested in something, we try to encourage that interest by providing the appropriate materials (thus the little science books since he’s been into science). He doesn’t seem to be a phonics kid—when he has asked us what a word is in the past and we’ve tried to help him sound it out, he just gets frustrated. Phonics don’t seem to click with him. But if you tell him what a word is once, he will remember it from that point forward. That’s what leads me to believe he’s primarily a sight-reader. Which is actually supposed to be a “bad” thing, but I have to say that I was a sight-reader and always have been, and it certainly hasn’t hurt me—I make my living reading, for heaven’s sake! So we’ve never pushed Theo to learn phonics or sounding out words because it just doesn’t seem to be his preferred learning style for language arts. And thus, when he suddenly demonstrated that he can read simple books, it was a complete and utter surprise—and very, very cool! There’s very little more fun than watching your kid’s brain naturally develop, I think. Fascinating!

Not to be left in the dust, Sam decided to make leaps and bounds in his language development this week, too. After 20 months (yes, his entire life!) of me signing “milk” to him before he nurses, he is finally making the sign to me! And, I’ve been signing “cracker” to him since he developed his love of fish crackers a few months ago, and he is now signing “cracker” when he wants a fish cracker. His speech therapist and I also could’ve sworn we saw him sign “dog” when she was showing him some animal flashcards, and I’m almost certain he signed “shoes” to me when I said, “We need to put some shoes on you!” The “shoes” one really surprised me, because that’s not a sign I do with him—he has only seen it on Baby Signing Time. And he only watches Baby Signing Time a couple of times a week, and hasn’t even watched the one with the “shoes” song on it more than a couple of times. Nevertheless, I’m almost sure he signed “shoes.” Given this recent signing explosion, I need to put on Baby Signing Time a lot more often for him. I’ve heard so many stories from parents in the DS community about how their kids rapidly picked up 50 signs or more, just from watching Baby Signing Time. I’ll have to watch them, too, so I can figure out what the heck he’s signing. 😉

He is also regularly saying “Up up up!” when he wants to pull up or be picked up, though he runs the words together so it sounds more like, “Pupupupupup!” And he’s imitating vocal sounds amazingly well, much to his speech therapist’s delight. She suggested that we try to use the first sound of common words with him, as she thinks he’s capable of imitating it, and it can be a gateway to him using the entire word. For example, for “toast,” she suggested that we say to him, “You want some toast? Tuh-tuh-tuh!” and encourage him to imitate the tuh-tuh-tuh sound. Same thing with water—not that he’ll drink it, but we keep trying. Wuh-wuh-wuh…

It is very, very cool to see Sam communicating more. For a very long time, when he’s wanted something, he has just whined for it. And I can understand that—communication is a really tough thing for many kids with DS. But oh boy, whining gets old. So I’m delighted that he’s starting to acquire some signs and language!

The thing about Sam is, even with the whining, it’s reasonably easy to figure out what he wants. You know how they say when a baby is crying, check his diaper, check to see if he’s hungry, see if he’s tired? And supposedly, one of those things will be the right answer and he’ll stop crying? That has generally been the case with Sam, so even though he whines a lot to try to communicate, I can at least figure it out and meet whatever his need is at any given time. I have realized, as a wise old second-time parent (HA!), that this is a big part of what made Theo so hard to raise as a baby: That conventional trick of “check his diaper, see whether he’s hungry, see whether he’s tired” rarely ever worked. We would check all those things and more, and it would rarely make him stop crying. And wow, was that ever hard! We felt like completely inept parents—we couldn’t even figure out how to soothe our baby! And it was all the more frustrating when we’d be out in public, and some well-meaning person would say, “Oh, he must be hungry!” or “Oh, poor baby is tired!” or something. Although I’m sure they didn’t mean it this way, in our exhausted, frazzled state, we tended to feel defensive, as in, “I’ve checked all that, and he’s still crying! I don’t know why he is, lady, but he isn’t tired or hungry or wet!”

So to this day, I don’t really know why he cried so much. I assume it was some combination of tummy discomfort due to dairy sensitivity and over-sensitivity to stimuli that he was still learning how to process. But whatever it was, it actually kind of helped with Sam, because we were able to feel much more confident as parents when we realized, “Hey, this baby reacts like a typical baby! We check his diaper, check to see if he’s hungry, check to see if he’s tired, and inevitably one of the three is the answer!” Bliss. If all kids were that way, we might’ve had ten. 😉

One other last bit of Sam coolness before I sign off for the night. Call me crazy, but I think that kid is able to keep tempo! Much like his big brother, Sam loves music—when he hears it, he gets a big grin on his face and signs “music.” But there are three songs he loves above all others—three songs that actually get him movin’ and groovin’ in the car. When he hears them, he starts clapping his hands and feet and hooting in excitement. (If you’ve never seen a baby clap his feet, it’s ridiculously cute!) Those songs are “Wannabe” by the Spice Girls (no accounting for taste…), “Goodbye Earl” by the Dixie Chicks (the banjo seems to draw him in), and “Barton Hollow” by the Civil Wars (the Civil Wars rock, so good choice, Sam!). So much does he love these songs that I will actually put on “Wannabe” to make him stop screaming or to keep him awake if he’s falling asleep and I need him to stay awake. Works every time!

Anyway, I digress. Whenever “Wannabe” or “Goodbye Earl” comes on, he claps his hands and feet in a rapid tempo. I assumed that was just because he’s a baby, he gets excited, and he claps quickly. But I noticed this week that if “Barton Hollow” comes on, he claps much more slowly and in time with the beat! And in thinking about it, both “Wannabe” and “Goodbye Earl” have very fast tempos, whereas “Barton Hollow” has a slow, strong, deliberate tempo. And I think Sam is picking up on that and clapping accordingly. How cool is that?! I think he and Theo are going to start a band someday. Sam can be the drummer, since the drummer sets the tempo, and Theo can be the guitarist because, well, he is nothing if not passionate about guitar!

Anyway, on that note, I’m going to bid you adieu and sign off. Hope you all have a wonderful Halloween—we will be trick-or-treating with our two Elvises, Theo’s best buddy Gavin (who insists that he needs to be the letter A, while his dog is the letter B and his mom is the letter C–Gavin is obsessed with letters!), and two other friends from his preschool who I just found out live in the complex right behind us, Emma and Mateo. Look for pix next week!

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