Dec 7, 2014: A Week of Uncommon Occurrences

What a strange week it has been! First of all, it rained! A lot!! Not the heaviest rain ever, but a lovely, steady stream of rain. The downside to this is that I couldn’t walk Theo to school most of the week…but the upside is that after several years of drought (with last year being the worst!), we were in desperate need of rain! The mountains are now green instead of dry, dead yellow, and the creek that runs near our house and has been dry for the past few years actually was water in it! Theo said, “Wow, Mommy, I don’t think it’s had water in it since 1950!” Well…it’s not quite that bad, but it certainly has been a while since it had water in it.

But in addition to the rain, I officially finished the last of my work for my longtime client. It was a very, very strange feeling to submit the final invoice and archive all of my old projects from the past few months. Strange and sad, really… I also wrapped up the Valium book on Wednesday. And I finished grading my finals and submitted my grades, so I was sitting here on Thursday afternoon thinking, “What will I do with myself tomorrow while the boys are at school? Maybe I’ll clean the house! Or maybe I’ll read for pleasure!” I hadn’t had a work-free day (unless I purposely set work aside and took the day off) since right before I had Sam. But then, as luck would have it, a fellow freelancer needed someone to take some work off of her hands, so I agreed to do it. Who am I to turn down pay at this point?! And I also got asked to write another tech bio (I’ve written them on Jeff Bezos and on the two men who created Skype already; this new one will be on the man who invited the pacemaker) to contribute to a book, so that’ll keep me busy next week. No rest for the wicked! But it’s all good—I’m happy to keep some money coming in, and I do enjoy the writing.

We also had Sam’s intake meeting with the school district this week. It went well, but very much as I expected in one way. I had expected Sam to be wiped out because it was held at his naptime, but surprisingly, he was wide awake and gregarious. (He did crash in the car afterward and took a nice two-hour nap—little guy wore himself out!) I think he impressed the IEP team, because he was very much on his A game. They seemed impressed by how social he is, how independent he is, and how many vocal sounds and attempts at speaking he’s making. It was odd to watch their initial assessment, knowing exactly what some of the things they’re looking for are. It’s always a little bittersweet for me, because I watch Sam fly right through things that Theo struggled with in situations like this. And yet, Theo flies right through things Sam will struggle with, so I suppose in the end it all works out. But anyway, I remember when Theo was assessed (in the very same room, though by a different team), they kept trying to prompt him to do pretend/imaginative play with the dolls and dollhouse in the room, and he didn’t. At the time, I didn’t realize that was a “failing” in their eyes. Now I know more…and I know that they look for that ability in a child of around three. So when Sam, without any prompting from the team, walked over to the box of dolls, picked up a little boy doll, and pretended to have it go in the house and walk up the stairs, and the team gave a collective gasp and various utterances of approval, I was happy to see Sam nail that part of the “test,” but also a little sad as I remember how Theo didn’t meet that part of it. But such is life—different kids, different strengths.

Anyway, the part of the meeting that was no surprise to me was the team’s stance that special ed is the only option for Sam. They addressed the elephant in the room professionally but politely, saying, “We know you want a general-education class for Sam, and we keep thinking we should offer some sort of mainstream/inclusion program, but it hasn’t happened. It’s just not something we can offer.”

At that point, I was able to politely but firmly interject something along the lines of, “Yes, I do know that’s what you offer. However, I also know that if the district can’t offer Sam a mainstream placement, they’re obligated to pay for a private placement. I’m sure, though, that everyone involved would be prefer it if we could work this out without us having to have our attorney file due process.”

They politely offered me the chance to see their special ed classrooms—“so you can make an informed decision”—and I agreed that I would see what they have to offer in January, even though my mind is made up on pursuing a mainstream placement.

The team seems like a kind, professional group of people, and I know they are somewhat working with their hands tied—they can’t offer what the district doesn’t have available. So I don’t feel oppositional toward them as a group—I know they’re doing what they can within the limits they have. But the bottom line is, we need to pursue what’s in Sam’s best interests, and I won’t settle for less. I’m willing to see the special ed classes they want to show me, but I’m reasonably certain that ultimately we’ll still want a mainstream placement. Sam’s language development is just booming lately, and we don’t want anything to get in the way of that. Communication is just such an important part of functioning in general society! Obviously there are people who can’t communicate in a traditional way, and they get along some way or another. But given that Sam does appear to possess the ability to talk, we want to give him every opportunity to do so. In the long run, we think it will make his life so much easier!

There are a lot of studies showing that kids with Down syndrome prosper the most in a mainstream environment, and I won’t inundate you with them. But if you want to read one short, good one that focuses specifically on speech development, click here. This, in a nutshell, is why we’re stubbornly focusing on a mainstream placement.

Speaking of placement, I visited another school for Sam this week—the state-run preschool I mentioned that is on the same campus as his Early Intervention. I liked it a lot, actually. But it has one major drawback: He can’t start until September. Which means he has seven months with no sort of “school”-type program. And given how much progress he’s making lately, I hate to take a seven-month break. I mean, that’s a long time! It would be different if it were a month or two, but seven months? That’s a very long time for him to be out of the routine of “school” and away from those opportunities for development.

So, I have settled on the first program I visited: the small, in-home program. But that has one potential problem that I need to run by our attorney: It is technically licensed as a “large family daycare,” not as a preschool. Even though it’s run as a preschool, it’s not licensed as one. So I need to find out whether that would present a problem with the district, given that we’re going to be asking them to pay for it.

If it does present a problem—well, then, I guess we’re back to square one. Sort of. I’ve now seen three programs I like: the in-home “daycare” one, the state-run school, and another local, private preschool. The latter two don’t have openings until September, but I do like them. So if the in-home “daycare” is a no-go, I guess I’ll choose one of the other two and just figure something out for that seven-month gap. Heaven knows what…

And speaking of Sam and his speech development, he has apparently decided that since he can say no, he might as well practice it frequently. 😉 Now I have two kids complaining about my choice of music in the car: From the back seat, Theo says, “This isn’t rock-and-roll enough for me!” while Sam pipes up with “No, no, no!” He also says no when asked if he wants to go to bed, when told he needs a diaper change, and a dozen other times throughout the day. Such a typical toddler!! Oh, and of course when he doesn’t want to eat for us. Though Chris says the battle lines have been drawn now: On Friday we saw video of Sam eating steak at Early Intervention. Yes, steak. The child won’t touch anything other than chips, crackers, and yogurt or squeeze packs for us, but at EI this week he ate chocolate pudding, caramel sauce, whipped cream, tuna-fish sandwiches, and steak! Good heavens. So, we’ve decided to not buy any more chips and crackers and see whether we can out-stubborn the stubborn one. When he doesn’t want to eat for us (which is pretty much every meal), he goes to the pantry and either gets the chips/crackers or, if he can’t reach, points to them and whines plaintively. And for a long time, he was so darn tiny and scrawny that we just wanted him to eat anything. So we gave in and let the little turkey eat the chips. But he’s now tipping the scales at 24 pounds (still not even on the charts for a typical kid of his age, but at least not frighteningly scrawny anymore), and he eats steak, for heaven’s sake, so we’re going with the “he’ll eat when he gets hungry enough” strategy. We’ll see who out-stubborns who. I have a sneaking suspicion the final score will be Sam: 1, parents: 0, but we’ll see. (If you are wanting to smack us upside the head and say, “Do not give in to a child! You are the parent!” I invite you to spend several days with an extremely cranky almost-three-year-old who has low blood sugar because he’s been refusing to eat. If it gets to that point, I guarantee you we’ll cave. We’ve tried it in the past for a meal or two, and the incessant whining is like some form of Chinese water torture. I shall be donning earplugs over the next week.)

But moving on from the tiny stubborn one to the bigger stubborn one…Theo had an Odyssey of the Mind meeting on Friday. What fun! The competition (in February) will consist of their long-term problem (Wacky Weather) and a spontaneous problem (which they don’t find out until the moment of the competition). So, every meeting, I’m doing two practice spontaneous problems with them, and then we’re doing some work on the long-term problem. This week, we narrowed down the three types of “wacky weather” they want to cover in their performance. They chose: (1) A tornado inside someone’s house; (2) a simultaneous earthquake and tornado where nothing falls down; and (3) a rainstorm happening inside the house. Don’t ask me how they’re going to forecast and demonstrate these—it’s up to them to figure out it! But I’m confident it will be clever, because this is a clever group of kindergartners, first-graders, and second-graders! I was really impressed by their responses to the spontaneous problems.

I got the sample problems from a book published by Odyssey of the Mind; it’s full of sample spontaneous problems to do with the group. First we did a verbal one, where the team had to pretend a mug was full of steaming hot chocolate that needed to be moved, but was so hot the cup would burn them if they touched it. So how would they move it? They came up with the usual ideas of potholders, kitchen towels, etc., but they also came up with some really clever ideas: “You could use a hook and grab the handle of the mug with the hook and then pull it slowly!” “You could get another glass, put it right up next to the cup, and then push the cool glass so it will push the mug!”

The second problem was a hands-on one called “Wrap It Up.” I gave the team seven pieces of construction paper, scissors, and tape, plus an assortment of items that had different points values assigned. Their job was to wrap up as many of them as possible in the paper; to be considered “wrapped” and thus given points, no part of the object could be visible. First of all, I was impressed that they immediately realized that they should concentrate on the high-points items, so as to earn the most possible points. Adults would obviously think of that (I think!), but I was impressed that kids so young immediately thought of it, too. And I was further impressed when they said, “Hey, why are the bigger items worth fewer points?” Ah, there’s the trick, though I couldn’t tell them that: The bigger items are worth fewer points because you can use the bigger items as a vessel for the smaller items—that is, you could cover the two smaller tennis balls with the overturned large bowl, and the tennis balls would be considered “wrapped” because the judges wouldn’t be able to see them. But when they asked me why the bigger items were worth less, I just said, “I can’t answer that until after you’re finished. Just keep working!” And within 30 seconds, one of the girls said, “Oh, I know why! I know why!” She kept it to herself, but her eventual guess was pretty close to right. Meanwhile, a kindergartner had also figured out the trick. I was floored—I honestly didn’t expect such a young team to come up with that little loophole, but they did! I had, in my mind, hoped they’d get 20 points of “wrapped” items, but they ended up with 37 points!

By the way, you see why I think this program is tailor-made for Theo? It’s all about finding the loopholes—something he is a master at! And speaking of OotM, each team has to provide a judge for the competition, or else they aren’t allowed to participate. (This is entirely volunteer-run, so they have to require judges from each team or there won’t be enough to hold the competition.) No one wanted to commit to judging (which is a full-day affair and has a one-day training beforehand), so Chris stepped up to the plate. Which means we’re taking volunteers for who will watch Sam for the day on the last Saturday in February, given that I’m coaching and Chris is judging. Any takers?!

And now to perhaps the oddest part of the week: My fifteen-minute brush with fame in the form of being interviewed by Joey Travolta, whose brother is John Travolta.

At this point you’re wondering what on earth Joey Travolta would want to interview me for…and the answer is, my experiences with Down Syndrome Connection of the Bay Area. As it turns out, Joey Travolta was an actor and then turned director and producer. And somewhere along the way, he created an organization called Inclusion Films, which allows people with special needs to work alongside filmmakers and learn the film-production process. Here’s their website, if you’re interested in learning more. And it so happens that they have a location in Livermore, which is in this general area…and Down Syndrome Connection lined them up to produce a 10-minute film about their organization, which DSC intends to use for awareness, presentations, fundraising, etc. And they asked me, along with four other parents, if we would be willing to be interviewed. Specifically, I think they’re interested because I’ve been involved with their medical outreach committee.

Sunday was the DSC holiday party, and Inclusion Films was there filming, with Joey Travolta was doing the interviews. So we attended the party and had a great time, as always—and Sam and I snuck out for 15 minutes near the end for the interview. I learned that I talk VERY, VERY FAST when I’m nervous. 🙂 I just had so much I wanted to say, and I was afraid I’d forget it. And of course, I did. But hopefully I said some useful things, too. They asked me a couple of questions I wasn’t expecting (about Sam’s birth, for example), so I forgot about one of the main things I wanted to say that I like about DSC: That they not only preach inclusion, but they also practice it. Because it’s all well and good to talk about inclusion, but if you’re not doing something to promote it, then talk is useless. And I love that at DSC, there’s no reverse exclusion going on—sure, it’s a place for people with Down syndrome, but siblings and other family members are always welcomed with open arms and treated just as warmly as the people with DS. So when you go to a get-together like today’s holiday party, of course there are a lot of people with DS, but the day itself isn’t about DS—it’s just about people getting together and having a good time. And I love that—to me, that is inclusion at its best. Taking DS out of the discussion and just treating people as people. I wish I’d had the chance to say something about that, but oh well—I jabbered like crazy about various other things instead.

By the way, I met Joey for all of maybe 20 minutes, but he seems like a heck of a nice guy. The film crew with him included people with special needs, and in fact the guy he referred to as “my boss” is a young man with Down syndrome. Everyone was very warm and friendly to us, and Joey made it a point to tell Sam all about how his father was named Sam, and he has a brother named Sam and a nephew named Sam. To which my Sam replied, “Ooooooh”—that being one of his common utterances. 🙂 Joey gave us a big hug when we finished, and it seemed like he and his crew truly enjoyed being at the event.

And who wouldn’t? It’s a lot of fun! Theo quickly made friends with a five-year-old girl whose brother is another Sam (he’s about six months older than our Sam). They played and did crafts together most of the time, and she and Theo went up and joined the bell choir performance, too. And there were so many homemade cookies and brownies—mmmm, what’s not to like?!

We also had the boys meet Santa, much to Sam’s chagrin. Sam likes everyone…but apparently not Santa. He cried on Santa’s lap, and then once I took him back, Santa stood up and said, “Oh, he’s so sweet! Can I give you two a hug?” and Sam shook his finger at Santa and said, “No, no, no!” Kid doesn’t know where his bread is buttered—that’s the guy who’s going to give you presents in a few weeks, little man! 😉

For his part, Theo stared stoically at Santa and politely asked for “a new CD and a teeny, tiny radio.” We shall see whether Santa obliges.

Anyway, that’s it for our week! Tomorrow we have Theo’s parent-teacher conference, which should be…interesting?!? Wish us luck!

By the way, if you missed them, I had two midweek blog posts: one about why parents of kids with special needs feel the need to share positive stories, and one about Theo’s reading progress.

Bonus for you: You get a gallery of pictures AND a cute video of the boys doing an “obstacle course” among the piles of laundry waiting to go upstairs. What cracks me up in the video is Sam’s belly flop at the end. He does the same thing when he’s about to throw a tantrum. He realized this week that doing it on the kitchen tile is not his best idea. 🙂

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