Well, it finally happened! The rain has come! Not in buckets, but at a steady pace for several days. Why is this noteworthy? Well, we’ve been in the beginning of a serious drought. Truth is, drought is common in California—pretty much every year, the newscasters tell us we’re not getting enough rain. I remember the first time I visited the East Coast in the summer, I was stunned that it rained, because it pretty much never rains even a single drop between about late May and mid-September in California.
So dry is really a state of being here, and although we never get a lot of rain, we generally end up getting a reasonable amount, and the dreaded drought never ends up being as dire as the weatherpeople seem to like to predict. So just like my relatives in Buffalo generally shrug off snow with an “oh, we’re used to it” attitude, here in California we just kind of shrug and go about our business every year: “Oh, not enough rain? Hmmm, we’ll watch our water usage, and I’m sure it’ll all be fine.” And usually it is. But this year has been different. We got almost no rain from May through February! November, December, and January, when we typically get some rain, were almost 100% dry. I think we got maybe one or two days of light rain in that whole time. January is usually cold and wet here, and it was 70 degrees and sunny much of the month! Honestly, we were beginning to wonder if we’d get any rain this season.
But rejoice! Hurray! The rain has come! Of course the newscasters are telling us it isn’t even making a dent in the drought, and no doubt we still need to watch our water usage, but at least there’s some rain. And even though rain makes for long days with housebound kids, it’s nice to see it. And maybe we’ll have nice, green hills and mountains in a couple of months to show for it. I was beginning to think the summer brown would last all the way until next winter. Ugh!
In other noteworthy news, you likely know that a certain member of our household had a birthday this past week! That’s right: Mr. Sam turned two on Tuesday! Two! Can you even believe it?! Boy, that two years passed quickly.
We had a pretty quiet birthday for Sam. He and I picked Theo up at school on Tuesday, and the three of us headed over to Genentech to have lunch with Chris. Theo loves to go to Daddy’s office, and Sam was delighted to have an entire lunch of potato chips. (I wasn’t about to battle with him (a) on his birthday and (b) in Chris’s work cafeteria, so the little stinker just ate chips. I tried to sneak a green bean onto the table in front of him, but he promptly threw it on the floor. Typical…)
In the evening, we had cake—or should I say, three of us had cake. Sam took one look at the piece on his tray, started screaming, and hurled his fork on the floor. There was no calming him down after the horrible offense of putting a small piece of cake on his tray, so I had to pick him up and hold him while I ate my cake, and he wailed and fussed and tried to bat the fork out of my hand, because, you know, if he doesn’t want cake, none of us should have it! Diva!!
I shall digress for a moment and say that I’ve decided I am done with these feeding battles. It’s been 18 months of battling with solids, and I am over it. Even when I turn on Baby Signing Time to distract him, he won’t eat for me and fights me like crazy. He got a very good bill of health at his two-year checkup, with no concerns about his weight—he’s tiny but holding steady—so that’s it. The battling over feeding is getting us nowhere and just making him mad and me frustrated and worried, so I’m done. From me he will eat, sporadically, dry toast, soy yogurt, pretzels, potato chips, and tortilla chips. From Chris, he will eat, sporadically, these items plus baby food. So for most of the day, he’ll survive on toast, yogurt, pretzels, and chips, and when Chris gets home in the evening, he’ll get a more proper meal that includes some baby food…if he’ll eat it. So, I’m going to resort to that age-old parenting philosophy: When he’s hungry enough, he’ll eat. And hopefully, when he starts at the developmental center, they’ll make progress with him on eating. Because lord knows Chris and I are getting pretty much nowhere. I give up, Sam—you win the battle!
But back to birthdays! After the Great Cake Offense, we did presents. We let Sam open a car first, and then he had very little interest in anything else, because he loves cars above all else and wanted to just push it around the living room! But when he eventually tired of the car, he was pleased to get a little cash register that teaches color sorting and, from Grandma Diane, a Hug-Me Elmo that is oddly fun to hug (and I say this as a person who actually doesn’t typically like hugging—there’s something rather sweet about this darn Elmo!). Sam likes trying to feed Elmo blocks, which is very cute. 🙂
The day after Sam’s birthday, we had an appointment with the pediatric endocrinologist. I think I mentioned that Sam’s labs showed that he has subclinical hypothyroidism, which is not uncommon in kids with DS. Most of the people I know who have kids with this are treating it with synthetic thyroid hormone or some such thing. However, these days the medical community is split on whether to treat or just monitor—and our medical group falls on the “just monitor it” side. I wasn’t sure how I felt about that. On one hand, I’m not a fan of treating when no treatment is absolutely required. On the other hand, hypothyroidism can cause cognitive delay, and Sam is already cognitively delayed, so I didn’t want to put him farther behind the eight ball—especially given that so much cognitive development occurs before age three. So, I wanted to discuss options with the endocrinologist. The upshot? We compromised and agreed to just monitor his thyroid level—but every three months instead of every six months. It does mean a blood draw every three months instead of every six, but it will give me peace of mind. If his subclinical hypothyroidism shows signs of becoming full-blown hypothyroidism, I want to get him started on treatment right away. But until then, we will watch. (For those nerdy folks like me interested in the medical reasoning, there are two numbers they watch for in this case: the TSH level and the Free T4 level. Sam’s TSH level is high—outside of the normal range—but his Free T4 is in the high-normal range. If he had full-blown hypothyroidism, the Free T4 number would be below normal. So since it’s high-normal right now, the endocrinologist is worried that treating the subclinical hypothyroidism would actually push him the other way—into hyperthyroidism. So we’ll watch the TSH and see if it stays outside of the normal range—and watch that Free T4 and make sure it doesn’t start dropping outside of the normal range.)
Speaking of Sam and cognitive development, he is a signing machine lately! He imitates pretty much all the signs he sees on Baby Signing Time and will try to imitate almost any you show him. He regularly uses a lot of signs—some that I don’t even recognize, so I clearly need to bone up on my sign language! He’s starting to combine two signs, too: Food please, more food, etc. (Oh, the irony—he signs for food, but then won’t eat it unless it’s a pretzel or chip!)
Speaking of “please,” add that to the “my chromosomally atypical child is amazingly typical” files! Chris and I spent three long years trying to teach Theo to say please and thank you. And I remember blogging about this way back when: I was certain that it wasn’t that he was a rude kid, but rather that it just didn’t even occur to him to throw in niceties. So we reminded and modeled…reminded and modeled…reminded and modeled…for about three years before he really got it. (And these days, we get compliments on what a polite little boy he is, so it finally took!) It was kind of frustrating because I had friends whose two-year-olds would regularly use please and thank you without prompting, and here my four-year-old needed prompting every time! I felt like people were thinking, “He’s a nice kid, but his parents need to work on please and thank you with him”—and we were working on it!
So enter my little communication-challenged fellow. I showed him the sign for please yesterday—and he’s seen it on Baby Signing Time as part of one of the songs for a couple of months now. You know how long it took him to get it? About two minutes. And he’s already using it without prompting. Not every time, of course—far from it. But if I say, “Can you say please?” he’ll immediately sign please, and sometimes he’ll sign it with absolutely no prompting. After ONE day. I am shocked! Social development is actually the one and only area where Sam is at age level developmentally (as of his last assessment), and I can see why—he really gets the social end of things. I also taught him the idea of “gentle” this week, and he immediately got it and will now switch to a gentle touch when he’s getting too rough and I remind him to be gentle. (This is a work in progress with Theo, who tends to not know his own strength!) Theo, meanwhile, blows things out of the water when it comes to academics and what we typically think of as “smarts”—but the poor kid has to work and work and work to get the social stuff. He’s done amazing, and at age five (almost six!) is a friendly, congenial, empathetic, sweet, polite little boy…but boy, did he work hard to get there! Just like Sam will work hard to get there in other areas. Funny how my two boys’ strengths complement each other. It’s sort of a beautiful relationship, isn’t it?
As long as I’m on the subject of signing (sort of), I have to share the exciting news that we’re going to see Sam’s idol in person!! I speak often of Baby Signing Time on here—the woman who developed Baby Signing Time and Signing Time (which is for slightly older kids) is seriously like the Elvis of the tot set. They go nuts for her. And what do you know, she’s doing a concert in South San Francisco! I told Chris we have to go, because Sam is obsessed with her, and he grudgingly agreed. (Despite complaining about it, Theo actually really likes her too, so he’ll have fun. And honestly, her songs are catchy as kids’ songs go, so I’m looking forward to it. Plus, the locally famous food truck “Melt” will be there serving grilled-cheese sandwiches, so what’s not to like? I’ll take a GlutenEase and thoroughly enjoy my melty sandwich of goodness!)
On the less cheery end of things, we had a weird experience this week that still has me rattled. Many of you who read this are on Facebook, so you know how it works, but for those of you who aren’t, let me explain. Facebook has privacy settings, so you can protect your pictures, posts, and information from people unknown to you. They are notorious for changing their privacy settings, but as long as you keep on top of it, you can keep yourself private (or so I thought). Well, when I was working on Friday, I suddenly started getting Facebook notifications that people were sharing one of my pictures. I clicked on the first notification and discovered that it was one of my favorite pictures of Sam—the one where he’s in jeans and no shirt and has just slammed his face into his birthday cake and is royally ticked about it. I had used it as a “cover photo” on my Facebook account. The first person to share the photo was some Down syndrome group in Costa Rica. Their Facebook page looks legitimate, but I was a little rattled, wondering how they found my picture and were able to share it. For one thing, you can’t even tell he has Down syndrome in it—his eyes are closed, and at age one, it really wasn’t that apparent. (As he matures his features are becoming more apparently linked to Down syndrome, but when he was one, most people couldn’t even tell.) So how did this group know he had Down syndrome—and why did they use his photo? People were posting comments about him being cute—they were all innocuous, but it just still kind of weirded me out.
Then I clicked on the other share notifications, and I discovered individual people were posting his picture on their individual pages. All of the pages looked okay, but they are all in South and Central America, and I can’t read enough Spanish to read everything on the pages. There was nothing outwardly inappropriate on any of them—but why were these people sharing my son’s photo?
There are three disturbing things that can go on with “stolen” photos. One is that some groups (often in other countries) will steal photos of kids with DS and use them to try to get donations. Another is that people steal photos of kids with DS (or other obvious disabilities) and use them to create cruel jokes that go around the Internet. (This happened to one of my favorite bloggers—someone stole a picture of her five-year-old daughter with DS and created a very cruel “meme” (or joke) out of it. The woman found it just by chance, when it popped up in her Tumblr feed. Imagine that—being caught off guard by seeing a cruel joke at your kid’s expense!) And the third is the worst of all: Creeps use the pictures for other creeps. You get my drift—I’m sure I don’t need to spell it out. This happened to another blogger I like; her daughter has cerebral palsy, and at some point she posted a picture of her daughter’s new leg braces. It was a perfectly fine photo—barely any skin showing, just a shot of her legs in the braces (which covered up most of her skin) and tennis shoes. And it got stolen and used on some sort of fetish porn site.
So I don’t like to be a conspiracy theorist, and I would like to believe that there’s nothing weird about Sam’s picture being shared. But I can’t shake the feeling that something is off about it. For one thing (and shoot me here for painting with a broad brush, but I’m going to do it anyway), a few of the people posting it on their personal pages were men. Now, does this seem like typical behavior for a man? I would find it a bit odd even if a woman posted a picture of some kid she had no connection whatsoever to—people just don’t typically post pictures of random kids and say, “Look, isn’t this kid cute?” But for a man—that just seems very out of character to me. If I show Chris a picture of a cute baby he doesn’t know, he says, “Oh, cute!” or something along those lines—he doesn’t say, “Let me post that on my Facebook page!”
Now, let me say for the record that I am very careful about matters of sexual abuse. It’s one of my hot-button things. In fact, that was one of the deciding factors when we chose our house. We had it narrowed down to two—one 12 miles from Chris’s work and in a nice enough neighborhood, and ours with its godawful two-hour commute for Chris, also in a nice neighborhood. Being the freak about perverts that I am, I checked the Megan’s Law website, and guess what I found? No sex offenders around our neighborhood, but a sex offender living on the street directly behind the other house we were considering. Decision made! So when I worry about Sam’s picture being shared for creepy reasons…well, I do know that I tend to be perhaps a bit overly cautious about such things, and it may not be the case at all.
But yeah… The thing with Sam’s picture may have been nothing, but I didn’t like it. At all. And I thought, “How could I be so careless?” But you know what? I wasn’t. I went back and checked my settings, and they are set to Private, so that only people I’m friends with can see my pictures and posts! But as it turns out, cover photos cannot be made private, and I didn’t know that. I do now, though, and so my kids are now no longer on my cover photos. I deleted the picture in question, and it turns out that automatically removed it from all of the other pages where it had been shared. So, problem solved…but I’m still a bit creeped out.
As for our blog, I don’t have a wide readership. I’m not interested in having a wide readership, or I would put a whole lot more effort into doing themed posts, rather than just randomly writing about our week. I write the blog for our family and friends who like to follow it, and as a bit of therapy for myself, as I find writing very therapeutic and much cheaper than a shrink! So I was thinking, “Well, I occupy this tiny corner of the Internet, and I’m sure no one even notices me.” But another mommy-blogger I know of just found that her blog—which, like mine, is just a little family blog and not something intended to make a big splash in the blogging community—was raided, and pictures of her kids showed up on porn sites. YIKES! So, I’m very seriously considering password-protecting the blog so that only people I’ve approved can see it.
Why haven’t I done this already, you might ask? Because I do have “lurkers” who read the blog—people I don’t know who read it because they find support there for their own family. I’ve had people tell me they’ve told acquaintances who have a kid with DS or autism about my blog, because they find it relatable because I cover both the good and the bad about raising kids with unique needs. And I’ve had people tell me that they were really comforted by some thing or another that I’ve written about. And I like that I can help people in that way—if they find some use in what I’ve written, I’m glad for that. If I password-protect the blog, that will end. And the second thing is that I have four years’ worth of material that I still need to transfer from our old blog to this one, so even if I password-protect this one, there’s still the old one floating around. (And lord knows I don’t have the time to transfer everything over right now—it’s a Herculean task!)
But regardless of these two drawbacks, I’ll probably do it soon. Because I don’t want either of my kids used as a joke, used as some sort of “prey,” or used to solicit money on someone else’s behalf. Gross. It’s sad that this is even an issue, but evidently it is. Sigh…
Speaking of being in the public eye, by the way, I spoke with Sam’s modeling agency this week (on an unrelated matter—they needed updated sizing information for him, which is somewhat pointless because his sizes haven’t changed in a year!), and I mentioned that I was surprised I hadn’t heard from them in many months. Sam’s agent said, “I know! We keep submitting his portfolio to clients, but they haven’t been interested. This hasn’t taken off like I had hoped. I’m bummed about that.” In other words, I suspect their clients aren’t particularly interested in featuring a kid with special needs. At least, that’s what I take from it, because I don’t think it’s a cuteness issue. I’m his mother, so I’m biased, but come on—he has a crazy cute smile! Who wouldn’t want that gracing their ad? I’m rather disheartened by this—not because he won’t be gracing the pages of an ad or more commercials, and not because he won’t be padding his special-needs trust further (though that would be nice!), but because it’s the first example (of many, I’m sure) of him being excluded most likely because of his extra chromosome. And that just makes me sad. It shouldn’t be that way. Oh well, I’ll just have to keep on advocating, right? Gotta show the word that my boy is just as valuable as anyone else!
But let’s move on and end on a cheery note. Because it rained all weekend, we needed to find a fun indoor activity. We decided to check out the World of Wonders science museum in Lodi. How have we not been there before?! It was awesome! It had a lot of fun science experiments, but not so many that it was overwhelming. And it wasn’t overly crowded, even on a rainy day, so Theo was able to try all of the exhibits without being crowded out, which often happens at the bigger children’s museums. And even Sam had fun, checking out some of the exhibits and pushing a stool around while he practiced walking. We will definitely go back! (Not to mention it was free due to our membership at a local wildlife museum—always a plus.)
On Sunday, Grandma Kathy and Papa came up for a visit, and Chris made his homemade tortillas, which are excellent—so much better than storebought, and they don’t have any of those nasty gums in them that make me sick. Mmm, we had a tasty taco lunch.
That sums up our week. This coming week, the big excitement is getting our taxes done. So I’ll either be very cheery in the next post or very depressed, depending on how our taxes turn out. Cross your fingers!