Oct 20, 2013: Illness and New Projects

Well, another member of our household has been felled by a virus: This time Theo is the victim. I don’t know whether it’s the flu—he got a flu vaccine, so in theory he shouldn’t get it. I’m assuming it’s probably just a respiratory virus or something, although the flu vaccine doesn’t protect 100% for every strain, so who knows? He was fine Sunday morning, so we headed out on our adventures, and by midday it was clear that he wasn’t feeling great. By late afternoon, we were certain he had a fever—and indeed he did. His temperature was 100.4 when we got home—not anywhere near alarmingly high, but high enough that I’m sure he feels like crud. We gave him a cool bath and some Motrin and got him snuggled in bed. Hopefully he’ll feel better in the morning, though I’ll be keeping him home from school regardless. (Selfishly, I’m kinda happy about that part—it means not rushing out the door at 7:15 and hustling 45 minutes to make it to school by 8!)

Speaking of school, I’m very excited to report that my sweet son is getting an award on Friday!! So here’s the thing: Evidently they do awards once a month for various things, and this month one of the awards they’re giving is to kindergartners who have met the end-of-kindergarten goal of being able to count to 30. Theo and one other girl have met that goal and are getting awards at an assembly. Now, Theo has been able to count to 30 (and beyond) since he was three, so that’s no surprise or big deal—his ability to meet expectations academically has never concerned us, as he’s a sharp cookie. But what does thrill me about this is that we weren’t even sure he’d be able to cope with a mainstream kindergarten class—and not only is he coping, but he’s doing well enough to get an award! I don’t care that it’s for something he’s been able to do for 2 ½ years already—I care that he’s succeeding, period! Kindergarten is not without its struggles for him, but he is doing so well overall, and I couldn’t be more thrilled! I credit this largely to Theo, who obviously has to do the hard work of meeting the expectations in the classroom—but also to his teachers. First his preschool teacher, for preparing him so well for classroom expectations, but also his kindergarten teacher, who I can’t say enough good things about. She is just so friendly and calm and down-to-earth and unflappable—while at the same time having high expectations for Theo. I think it’s the exact perfect combination that he needs, and he’s really flourishing in her classroom. I’m ecstatic that he’ll have her again next year—I think that will really make his transition to first grade (and full-day school) much easier.

Speaking of which, Theo is quite fond of his teacher. He told me the other day, quite matter-of-factly, “Mommy, Mrs. Jacobson is smarter than you.” I replied, “She is smart, but what makes you say that?” He said, “She’s a teacher, Mom. She’s very, very smart.” Indeed. He forgets that I’m a teacher, too. 🙂 I think I’m just “Mom” to him. His definition of smart is a little amusing, though. He also informed me that his babysitter is much smarter than me. Again, I agreed that she was smart and said, “What makes you say she’s smarter?” He replied that she buys better bread than I do. Indeed. That is smart. The gluten-free bread I buy is gross. Unfortunately, all gluten-free bread is gross, so he’s stuck with it. (Though one of my students clued me in about a coconut-flour cookbook that I ought to buy and try, so I did—and it has a recipe for sandwich bread that I’m anxious to try making!)

Speaking of domestic issues, Chris’s and my home-buying effort is on hold for a year. Long story short, the mortgage underwriter didn’t agree with the mortgage rep that our short sale was excusable due to Chris’s job change. The underwriter felt that it was a choice for us to move. And I suppose it was—although Chris’s new job was 100 miles away, and so commuting wasn’t an option (and the bank granting the short sale agreed that it wasn’t an option), the truth is that he could have turned down the job and stayed with his old job, and we wouldn’t have had to move. He would’ve been crazy to do so, since he had reached a dead end in that job and the compensation was painfully low, but still, the fact remains that it was our choice for him to take a new job and for us to move. A smart choice, but still a choice. So, we have to wait one more year to qualify for a mortgage. Fair enough. Truth be told, we weren’t in a hurry anyway, and we don’t really trust this market, so we don’t mind holding off for a year. Gives us time to save up a little more money, too, which is never a bad thing.

Meanwhile, we will stay in our rental, which we love, and Sam will continue practicing his mad walking skills!! I’m going to include a video this week of Sam’s musical tastes (he he he!) and his recent walking success—he will now independently pull to standing at a walking toy and walk halfway across the room with it! The video only shows him taking a few steps, but he will actually take 10 steps or so. Very exciting! Check out the video:

Speaking of steps, Sam and I went to Baby Steps this week—always fun! I just love seeing the kids and babies. The older Sam gets, the more he interacts with the other kids. This time, he was Mr. Social, crawling all over and playing for the full hour and a half. Boy, it wasn’t long ago that he’d last maybe 40 minutes and then start wailing. Now he’s a playing machine for the full 90 minutes!

Speaking of Baby Steps, I have a new Down syndrome–related endeavor. My friend Jisun and I are trying to start a website related to Down syndrome. But there are tons of those already, you might say! Indeed there are. However, most of them have to do with young kids or babies with Down syndrome. There are a ton of “mommy blogs,” for example, written by mothers of children with DS. (There are a couple of “daddy blogs,” too.) And there are oodles of websites devoted to support for new parents of children with Down syndrome…and on and on. But what’s missing is a place to hear the voices of people with Down syndrome—teens and adults. There are older kids and adults with DS doing amazing things, and you see bits and pieces about them all over, but nowhere is there a site to see them all together. When I had Sam, I wanted to know short-term what we were looking at, and I found a lot of resources. But Jisun had a different experience—her son wasn’t diagnosed until he was almost three months old, and she and her husband were the ones to bring it to people’s attention and say, “Hey, we have a feeling he might have Down syndrome.” So she’d had a couple of months to get to know her baby, and what she wanted to know was, if he does have DS, what will his life look like long-term? What is adulthood going to look like for him? And there was pretty much nothing out there.

So we got to talking about how there should be a place for adults and teens with Down syndrome to share their ideas and thoughts. Because they have a lot of great ideas and thoughts, but communication can be difficult. So how about if we help them? How about if we create a place where we can hear their thoughts about things like inclusion, prenatal testing, and so on? We hear a lot from parents, but what about from the people directly affected by some of these issues? Do they have thoughts on them? Probably. Let’s give them a place to share their thoughts.

And further, let’s make it a place where they can share their businesses and talents. There are a lot of people with DS who have small businesses or artistic talent, but it’s hard to find their work because there’s no central repository that features them.

So this is our idea: Let’s create a central place for teens and adults with Down syndrome—a place where they can advocate for things important to them, a place where they can share their talents and their ideas. Between the two of us, we have a fair number of local connections, so our plan is to start locally (in terms of getting people to contribute to the site—the businesses listing we can expand beyond local) and then hopefully grow if the site seems like something that is helpful and useful to people.

Jisun is well-connected with some of the national organizations, which hopefully might give us some ins, and I plan to focus a lot on the content—editing, mainly. I recently tried to read a book written by an adult with DS, and I was so excited to read it because there just isn’t much out there written by people with DS. But I stopped reading the short book halfway through because it wasn’t edited at all. And that rendered it very difficult to read. That has bothered me ever since, because I think if any typical person had written a book, that book would be edited. No author writes perfectly and without errors—it’s just not possible. But I feel like because this woman has DS, the thought was just, “Oh, good for you for writing—we won’t offend you by correcting your mistakes!” Which is, in a way, patronizing. I feel like that author deserved to have her work polished as much as any author does. And I would like to do that for people who contribute to our site. At the same time, I think it’s crucial to retain author voice, so my editing will be simply to make it easily readable—the same thing I do for any author. I feel like that’s one of my strengths as an editor—some editors are good at “slash and burn,” as they call it, and others are good at preserving author voice. I am in the latter camp, and my philosophy with any writing is to say, “Excellent—we have your words, so now let’s just make them as readable and accessible as possible so that your readers can hear what you’re trying to say.” And if you put out a book with no editing, the reality is that your readers can’t hear what you have to say, and they often get frustrated and give up. I don’t want to see that happen with the contributors to our site—I want people to be able to read and hear our contributors’ thoughts.

So, I’m excited about this project. Chris asked me if I had time to do it, and then answer is no…but I will make time. Because it’s important to me and it gives me satisfaction to work on something meaningful. Because I would like to think that when Sam is older, there will be a place in the world for his voice. He gets a ton of attention by virtue of being a cute baby, but I don’t want his voice to go quiet as he gets older because he has no place to share it. I want to be part of creating an area where his voice, and the voices of his peers, are heard.

Besides being excited about the project, I was also excited at the opportunity to go to lunch and talk to a grown-up without kids around! Chris watched the boys and Jisun’s husband watched her three kids so that we could go to lunch and hash out some of the details. We went to a delicious hole-in-the-wall Vietnamese restaurant in Oakland and had pho. I’ve had pho before, but not like this—the versions I’ve had in the past have been somewhat on the bland side. This one was incredibly flavorful and delicious. I think I may have to request a repeat visit the next time we get together. 🙂

As a matter of fact, I had two grown-up meals on Saturday! I also went to my friend Roxann’s book club on Saturday night—but Roxann and I were the only two who showed, so it ended up being a girls’ night just for us. Which was fine with me—I hadn’t had a chance to talk to her in a while, so it was great to catch up! And I have to admit, having some adult time on Saturday was very refreshing—I don’t get that too often.

On Sunday, as I said, we went out on an adventure, not knowing Theo was getting sick. He had actually been very compliant and calm all week (his teacher even commented that he was unusually agreeable at school), so I was suspicious that he might be coming down with something—but he never got sick, so I figured he must just be calm for some other reason. (Isn’t that awful? When my kid is agreeable and compliant, I immediately assume he must be sick! But it’s true that most of the time he’s pretty feisty—not necessarily disagreeable, but feisty. When he’s not feisty, I know something is up!) He was fine on Saturday, and Sunday morning he was fine, too. We headed out for the Bay Area Discovery Museum…which turned out to be way too crowded, so instead we drove to San Rafael, stopped for lunch, and then drove on to Stinson Beach. I’ve always wanted to go to Stinson Beach but hadn’t yet made it there. It’s lovely—despite the rather harrowing cliff-side driving overlooking the Pacific far below! Anyway, Theo seemed fine at lunch, too, and the only clue that anything was up was that he fell asleep in the car before lunch. But he occasionally does that, so we didn’t think much of it. However, he fell asleep again in the car after lunch…hmmm. He woke up at the beach but was tired and listless, so I got suspicious. We drove home (about two hours), and all told he fell asleep in the car five or six times! Um, that never happens. Indeed, his temperature was over 100 when we got home. So, we have a sick kiddo—and I just hope that whatever it is passes quickly and doesn’t spread to Sam.

Chris is attempting to make me a steak dinner (our attempts at cooking steak have historically been less than successful), so I’ll sign off now and go eat my dinner—while watching Season 4 of Downton Abbey. Oh yes, if you’re a DA fan, you can watch Season 4 despite it not airing in the U.S. until January! You can download the UK version already—woohoo! I am getting my Carson fix….

Have a good week, all!

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