Oct 13, 2013: Guilty as Charged!

Well, this week’s blog title refers mostly to Chris. Not that Chris is guilty of anything, mind you—rather, he had jury duty this week, and they found the defendant guilty as charged! Of one count, anyway. Thanks to semi-sloppy police work, they couldn’t convict him on the other count. But apparently he would’ve only been sentenced for one of the two misdemeanors anyway, so it didn’t really matter. It was a drunk-driving case, and lucky for Chris, he only had to report for three days. I think he actually kind of enjoyed it—in striking contrast to me. I had jury duty about 20 years ago, and I hated it. The trial lasted more than a week, and it was mind-numbingly boring. (Mine was a drug case.) Ugh! Better him than me. I think the worst part of it, for Chris, was that he was sick and had to sit in the courtroom all day, rather than resting. He tried to tell the judge he had the flu, thinking he’d get out of it that way, but she just offered him some cough drops. 🙂

Speaking of the flu, after three weeks, I am finally pretty much better—just a slight ache in my ear now. Chris’s mild case ended up hanging on…and in fact still hangs on. He never got the high fever that I had, but he’s had the throat-feels-like-he’s-swallowing-glass bit, as well as a lot of congestion and tiredness. Poor guy! It’s been nine days for him now. I told him in another 12 days or so, he should feel pretty much better. Somehow, he didn’t seem to find that too comforting. 😉

Miraculously, both boys escaped unscathed. I have no idea how they didn’t get it from either of us, but they didn’t. Small miracles…

In other guilty-as-charged news, Sam is guilty as charged…of being a diva! You know all of our feeding issues? Well, I’m becoming more and more convinced that they are largely a result of him being a diva! At home, he refuses pretty much any new food. If I put small pieces on his tray for him to explore, he promptly throws them on the floor and whines at me. If I try to feed them to him on a baby fork or spoon, he clamps his lips shut and wails. If I try to poke a tiny piece in with my finger, he shrieks like a banshee. And if I stick with his old-standby purees…well, it’s hit or miss. Sometimes he’ll eat for me, sometimes not. Needless to say, mealtime is very frustrating.

But change up his environment, and mealtime is strikingly more successful. For example, he will eat beans and rice and avocado by the truckload if we’re at Chipotle or at the park. So, wonderful! We’ll make beans and rice and avocado at home! Guess what? Won’t touch it. Okay, Plan B: We’ll get takeout beans and rice and try that, just to see. Guess what? Won’t touch it. Okay, Plan C: Let’s go back to Chipotle and eat there! Guess what? He eats it by the truckload. I don’t know what it is, but it seems he’ll only eat rice and beans if he’s at Chipotle or if we have takeout Chipotle (or a similar restaurant) at the park.

And what do you know? On Saturday, we went to Vik’s Chaat House for lunch, and he gobbled bits of pakora, samosa, and dosa like there was no tomorrow. He would squawk and holler if we didn’t feed it to him fast enough! But at home, will he try anything like that? Nope. For the samosa and dosa, he was just eating bits of the dough…but if I try to give him bread or any sort of dough-like thing at home, he most often gets mad and throws it on the floor. Sigh…

And I can’t tell you how many times I’ve tried to give him little bits of what I’m eating at home, to see whether it’s just that he’s tired of baby food and wants what he sees other people eating. He won’t touch it! But today, we had a picnic at the park with Theo’s friend Gavin, and Sam ate a bunch of Chris’s bread, bits of turkey, and even a piece of black olive. I can’t get him to eat any of that at home! But at the park, yes.

So, at this point, I think it may be an aversion to trying new things while in his home environment. And don’t ask me why. One day, I even tried putting a bunch of different small items in an ice-cube tray and taking them out into the living room, so we could have a sort of picnic of sorts on the floor in there. It’s not his high chair, so maybe he’ll be interested, right? Nope. He picked out the goldfish crackers and threw everything else on the floor. Lovely.

Sam is a sweet, lovely little soul, but oh my goodness, is he ever a stinker about eating!! It’s frustrating, too, because if we take him out somewhere or to someone else’s house, their immediate response is, “Oh, look! He’s eating great!!” And the insinuation is, “Are you nuts? Your kid eats just fine!” Yes, at a restaurant or at someone else’s house…but come on over to our house and see the difference! It’s rather remarkable….

As long as we’re on the subject of eating, I’ll also share that Sam’s new speech therapist started this week, and I have a great first impression of her! She reminds me of the first speech therapist we had, who I really liked. She is very engaged with Sam (and he with her), and I could see how the games she was playing with him were designed to work on communication. That was not the case with the previous speech therapist (the one I had dismissed from our case). I know therapy looks a lot like play, but I just could not see how what she was doing (barely interacting with Sam) had anything to do with speech. With this new therapist, I can see how what she’s doing is designed to help Sam. She’s reading books with very careful, exaggerated enunciation, along with signs. She’s modeling mouth shapes and sounds when she has his full attention, and then putting his little hand on her lips so he can feel what she’s doing. And then she encourages him to make the sound or mouth shape. (She was absolutely delighted that he already tries to imitate sounds—she said she often has to work with babies for months to get them to that point. She was thrilled to see that Sam already tries it.) With everything she does, she’s talking to him, signing with him, communicating with him. And he was rapt—with his previous therapist (the not-so-great one), he would kind of just do his own thing. But with Allie, he is staring intently at her and really focusing on her. She definitely holds his attention—at least thus far. That’s far more than I can say for the previous therapist. So I think this will be a much better fit. I also personally liked her right away—she’s very friendly and down-to-earth. Given that I have to work with these therapists every week, it’s nice to like them. 🙂

By the way, here’s a quick video of Sam repeating sounds. I tried to get him to say “up” for you, but he didn’t want to comply!

And speaking of therapists, Sam’s OT was delighted to find that she has to revise his semiannual goals…just two weeks after initially writing them! She literally just finished them, and Sam is already achieving some. So now she has to revise them…much to her delight! These goals are very simple little things, like stacking blocks, putting a shape in an appropriate hole in shape-sorter, trying a different texture of food, imitating a vowel sound, standing without assistance, etc. And a few of them, he promptly met. He is now stacking two objects, as well as standing and pivoting (while holding on to something). And he identified a dog on a card that had a dog and a cat, which was another goal. So, yay Sam!

As for my other kiddo, let’s see… He’s doing well. Monday was a rough day for him, which is no surprise because we had filled him up with gluten on Sunday. It was pretty much impossible to keep him gluten-free at Sam’s walk, so we just let him eat lunch and dealt with the consequences later. And not surprisingly, Monday was not his best day. I volunteered in his class that day, and he got sent to sit down at his table several times. Sigh… But then I volunteered again on Thursday (as a chaperone for the pumpkin-patch fieldtrip), and he was fantastic! He listened to directions, stayed with his class when he needed to, cooperated, and seemed to have a thoroughly excellent time. So, you know…good days and bad. But at least we have an idea of what triggers some bad days. I actually just ordered a book on diet that I hope will be of some help. Theo has a nasty case of eczema that keeps flaring up over and over, and this book was recommended for addressing things like that. (It also addresses some nutritional ideas for people with Down syndrome, which is another reason why I ordered it.) I can’t help but think that itching all the time can’t help but make Theo antsy—Chris has itching issues when he has too much dairy, and he says it drives him bananas. So then I think of Theo, trying very hard to stay reasonably calm in class, and I think that itching all the time can’t possibly make that any easier. But the topical creams don’t do a whole lot, and because they have steroids in them, you’re not supposed to use them on an extended basis anyway. So, we’ll see whether I can figure out a way to manage this with diet for the little guy. And heck, maybe I’ll pick up some good tips for Sam, too. His diet is so limited (see the above discussion on what a diva he is!) that I want to make sure I’m getting enough nutrition into him. So in my copious spare time (HA!), I shall read…and hopefully get ideas.

We also had soccer on Saturday, which was fun. Theo moved up a level in soccer, and his class is big now! But he’s handling it just fine and seems to be enjoying it. As are we…with the exception of being in the vicinity of a real jerk of a parent. Two weeks ago, I texted Chris (who was in the car with sleeping Sam) and said, “You’re missing it—there’s a total A-hole here.” He asked me what the guy was doing, and I explained that he was berating his wife and daughter (who looked to be about 10) for various things. Last week we didn’t have soccer (there was a tournament going on), but this week, the A-hole was back…and worse than ever. His son decided, halfway through the game, that he was tired and didn’t want to play anymore. This is no big deal—the kids are five years old, and it’s not even a formal game anyway. It’s skills and drills, and it’s absolutely not a problem if a kid steps out. But this father went ballistic, berating his kid and demanding that he get back on the field. “You’re a QUITTER!” he yelled. “Get back out there! I am NOT proud of you! Not at all! We don’t quit in this family!” Over and over, he berated the little boy, finally grabbing his arm and pulling him, very forcefully, back toward the field. The boy sat down and cried, “But I don’t want to play anymore! I’m tired!” And the mother just stood there and smiled calmly. It made me feel sick to my stomach. There is no doubt in my mind that the father is emotionally abusive—he was belittling a five-year-old boy over a stupid soccer game. All I could think was that the little boy was going to grow up with no self-esteem. It was to the point that Chris asked me if I thought we should step in and say something. And we both felt the same way—we wanted to, but would this guy haul off and punch us or something? He clearly has temper issues, and we had both of our kids there. And honestly, I wondered if we’d make it worse for his family if we intervened—would he go home and beat the tar out of them if we angered him by telling him to lighten up on his kid? I really don’t know, but I’m still bothered by the whole thing.

When he was berating the mother two weeks ago, she just sat there smiling and saying nothing. And again this time. And this is an older Causasian man—maybe in his late 50s or early 60s compared to her thirty-ish years—with a younger, attractive, foreign wife. And I keep wondering whether this is a sad situation of a wealthy man (because Theo’s soccer is in Walnut Creek, which tends to be a wealthy area, and this guy drives a Lexus or something) marrying a young, foreign woman who thinks it’s somehow okay for him to treat her badly. You know—because he “takes care of her” financially, does she just assume that gives him a license to be nasty to her and their kids? Or maybe I’m reading into it, and it’s a simple situation of an abusive man and a wife who is too frightened to do anything—or who has learned that the best way to live with the jerk is to stay quiet and smile her way through it. Either way, it’s a sad situation. I feel sorry for her, but I feel most sorry for her kids, as I’ve now seen this guy two weeks, and he’s been a jerk to his kids both times.

Seriously, it was bad. After watching the guy berate his son, Chris muttered to me under his breath, “If he’s not careful, his kid is going to grow up and turn a shotgun on him.” And honestly, it wouldn’t surprise me. Will that kid break someday? I hope not…I really hope not. The whole situation just really bothers me. Anyway, it’s none of my business, of course. But I could really do without seeing this guy. I hate seeing how he treats his family. Sad…

But back to happier topics. After soccer, we headed over to Berkeley for lunch at Vik’s. I’ve been craving Indian food, and it’s a tasty, inexpensive place for lunch. And after eating some yummy chaat, we headed to the Lawrence Hall of Science (on the UC Berkeley campus) for Theo and Sam to play. That place is awesome, particularly for Theo’s age, but it’s often very crowded. On Saturday, though, we went later than usual, and it wasn’t crowded at all! Theo was able to try all the exhibits he was interested in, and Sam was able to crawl around in the tot area and explore. The Lawrence Hall of Science also boasts pretty much the best view of the Bay Area (it’s perched way up on a mountain), and it was a lovely day, so we enjoyed letting the boys play in the outdoor area while we soaked up the sun and enjoyed the view.

On Sunday we had a play date at the park with Theo’s buddy, Gavin. The boys played hard for 2 ½ hours, while Sam hung out happily on the grass with Chris. All in all, a nice, relaxing weekend!

You’ll see that I’ve included the next set of kiddos with Down syndrome in this week’s album. So much cuteness in one place! Before I sign off for this week, I have to share a sad story with a note of triumph. If you looked at the photos of the kids with DS in last week’s album, you might’ve noticed one named Luca. His mom’s comment about the biggest challenge DS has presented to them is his infantile spasms, which they’ve been unable to get under control. Luca just turned a year, and before the spasms started some months ago, he was able to sit up, babble, hold his bottle, etc. Now he has lost the ability to do those things. And he’s gotten very lethargic as well. They’ve tried the medicines typically used for IS…with no luck. At the doctors’ recommendation, they tried a ketogenic diet, which is basically a straight-fat diet that is very hard on the system but that supposedly can work to control IS. No luck—and in fact it landed him in the hospital for dehydration. He managed to make it home for his first birthday, but he landed back in the hospital a matter of days later for aspiration pneumonia—he spiked such a high fever that he was seizing uncontrollably, and they had to call 911. He’s now in a children’s hospital in Chicago recovering from pneumonia. This is scary stuff—it’s the very reason why we worry so much about Sam’s choking on fluids. Aspiration pneumonia is nothing to be messed with. So poor little Luca is a very sick little boy, and somehow he parents are continuing to hold it together for him and his big sister.

But his mom, who I very much like (I’ve only met her electronically, but I really like her), is frustrated. You see, Luca is now very lethargic, sleeping 20 hours a day or so. And the doctors and nurses are apparently chalking things up to, “Oh, well, it’s because he has Down syndrome.” And this is far from the first time I’ve heard this refrain. It hasn’t happened to us because, thankfully, Sam has been very healthy. But evidently it’s not uncommon for the medical community to chalk a lot of things up to, “Well, he has Down syndrome…” and then to have very low expectations because of it.

Two examples for you. One mother whose story I follow was told that her daughter (with DS) had such severe low muscle tone that she would never be able to eat solid foods. She’d be on a feeding tube forever, according to them. Guess what? The daughter is now three years old and loves to eat—particularly all things chocolate and pancakes! Another mother, whose son had an unspecified chromosomal anomaly and tragically passed away a few months ago at age five, was told that her son would never sit up, never eat real food, never crawl, etc. They didn’t know what was wrong with him, but surely he would never do these things. Guess what? Before he passed away, that little boy was eating, drinking, sitting up, crawling, and even walking!

So my point is that seeing these limitations put on kids is frustrating. And often untrue. People blame Down syndrome for things that children supposedly can’t do, but in reality, kids with Down syndrome can very often learn to do anything a typically developing child can—it just takes more time and effort. (I’m speaking here of children who don’t have some sort of secondary complicating factor—a severe heart or digestive problem, for example, which can come along with DS.)

So little Luca’s mom is frustrated that the medical community is treating her son as if this lethargy and lack of abilities is normal for his condition, when she knows better than anyone that her little boy used to be active and able to sit up and babble and hold his bottle and so on. Yes, he’s undergoing a lot of difficulty right now, but no one wants to see them just dismiss him because of it, you know? So his mom, Jenny, decided that “the nurses and doctors need to see what healthy kids with Down syndrome look like”—and she papered the walls of his hospital room with pictures of our kids, as well as pictures of Luca when he was healthy and smiling and being a healthy little baby boy. And cheerful balloons and blankets and such, too. I laughed out loud when I saw the picture she posted—and I thought, “You go, Mama! Way to show them not to just write off your little boy as a sick little kid!” Now every time they go in to check on Luca, they see happy, smiling, alive little faces smiling at them. And Luca, when he wakes up, can see all his friends smiling at him. I love it—I just love it. I haven’t been able to get him off my mind, and I love that his mom is saying, “Enough of this! My boy was healthy and can be healthy!” Little Luca needs to fight his way through this and show them all what he can do. He just does. If you’re the praying type or the “sending positive thoughts” type, then send some out for Luca, please. He and his family can use it. 🙂

Leave a Reply

Your email address will not be published. Required fields are marked *