Jan 25, 2015: This and That

Happy late January, everyone! Greetings from warm, sunny California. Don’t hate me, but our daily highs are near 70 degrees right now. This isn’t actually a good thing, though, because it’s also very sunny, and we desperately need more rain! We had such a good start to the season, with lots of rain, and now we haven’t seen a drop in more than a month. Eeek…

But one thing gorgeous weather means is plenty of chances to get outside, and we definitely did that this week! Saturday, we took a short morning hike at some trails right near our house that wind around the base of Mt. Diablo. It’s really pretty out there right now, because the mountain is still all green from the rains we had late last year. I’m glad we went, because we learned that it’s definitely a hike best for cool months—there is virtually no shade, and even in January we were rather warm!

Our hike was short because we hadn’t been there before, and the trail we ended up choosing turned out to be a short loop of less than a mile. But it was a great morning for a walk, and we’ll definitely go back and try out some more trails!

Later in the afternoon, we had a play date with some new friends, and the four boys (their sons are 5 and 2-½) played out in the backyard for a couple of hours, and only stopped when it got dark and we said we had to go! I actually met this friend through a local Facebook group over a year ago, and we’ve talked often about how similar our two older sons seem, and that they’d probably enjoy each other’s company. Her son, too, has high-functioning autism and loves to play with other kids but sometimes struggles a bit with how to relate to them. We tried to plan a play date last year, but then something came up, and we never ended up rescheduling. But we finally managed to get together, and we were right—the two boys instantly hit it off and played very well together! I wish this little boy went to Theo’s school, but unfortunately his neighborhood is over the border into the next school. (He actually goes to the school where Theo went to summer day camp—it’s very close to us, but just not the one Theo attends as regular school.) He’s a year younger than Theo, so they wouldn’t be in the same class anyway, but they certainly got along great and played very well together. And we really enjoyed meeting their parents, too—really nice people! Sam was enamored of the kiddie “roller coaster” in their backyard and was his usual fearless self on it. He is my son, for sure. 🙂

Gorgeous weather also meant a fun park play date with friends on Thursday. Theo had to go to school, so he missed out, but Sam and I had fun with our friends—we spent a while at the park and then went out to lunch. Between Jisun and I, we had five children age 6 and under at the restaurant, but it went surprisingly well. 🙂 Sam, however, has decided that he doesn’t feel like sitting in the high chair anymore, and that’s a bit hit or miss. As long as he’s interested in eating, he actually sits very well. But when he doesn’t feel like eating, he’s very much like a typical two-year-old—into everything! I kept having to rearrange the plates on the table to keep the tiny marauder from grabbing them!

Speaking of tiny marauders, he had his three-year checkup that same day. I needed to have the doctor fill out his preschool paperwork, so I figured I might as well just get his checkup done, too, even though we’re slightly early. All is well—he is healthy as a horse in the grand scheme of things. (It’s cold season, so you know…runny nose is kind of never-ending. But other than that, he’s healthy!) He is, as always, tiny but mighty. He finally reached 25 pounds—woohoo! That’s still nowhere near big enough to get him on the typical growth charts, but it does put him around the 50th percentile for weight on the Down syndrome charts. So in the world of DS, he is quite average. In the real world…well, pretty tiny. But mighty!

I got curious and looked up Theo’s three-year numbers, and it turns out that at age three, Theo was 30 pounds. Only five pounds more than Sam—but he was only at the 29th percentile for weight on the typical charts. I’m baffled by the fact that I seem to make small children, given that I’ve always been on the large side myself, and Chris is pretty average for a man. Theo’s still on the small side—he’s the second shortest in his class—but he just went through a growth spurt, so perhaps he’ll catch up soon!

After the doctor appointment, Sam and I headed over to meet up with Chris and Theo, who were at a pizza dinner with the Cub Scouts. Our little town has a pizza joint that is family-owned and has been a town fixture since 1974. It’s really popular among the locals, and they have a big play yard in the back for kids, surrounded by picnic tables and patio heaters. It’s a great place to go with kids, because they can play to their heart’s content and run by for a piece of pizza when they get hungry, and parents can relax and enjoy their pizza. Anyway, the Cub Scouts had a two-part meeting on Thursday—a tour of the local library and then a pack meeting two hours later—so they arranged a pizza dinner between the two. Chris said the library tour was a lot of fun and Theo was really into it, and he definitely had a blast at the pizza place! I tried to go to the pack meeting, but a certain marauding toddler made it impossible for me to stay. Still, I got to see their flag-ceremony practice, which was pretty hilarious because it was like herding cats. The boys had to march in a particular fashion that involved two lines crisscrossing each other, and I’ll just let you imagine how that looked with a bunch of six- and seven-year-old boys hopped up on pizza and soda. 🙂 I wish I could’ve stayed for the rest of the meeting, as Theo received his official Bobcat badge, but I fled with Sam before he caused too much damage.

Theo’s now begging to go to the library, so I need to take him over there. I have a beef with one of the women who works there, but I’ll get over it. I think many of you know this story, but for those who don’t…a few days before I went into labor with Sam, I took Theo to the library to try to get him a library card. That in itself was a total pain because the library requires more verification for a darn library card than the DMV does for a driver’s license! But anyway, on that day I waited in line with Theo, and there was a man with Down syndrome in front of me, trying to work out a fine he owed on some late materials or something. The woman working at the desk was incredibly rude to him—kept rolling her eyes and sighing and snapping at him. I was furious—and in fact, on the walk home I called my mom and vented to her about how annoyed I was at this woman’s treatment of the man. A couple of days later, I had Sam…and one early thought that crossed my mind was, “People are going to treat him like that awful woman at the library treated that guy!” I’m painting with a broad brush here—so far, most people we’ve encountered have been great with Sam, and I hope that will continue—but I’m sure you can imagine that I’m not overly eager to deal with this woman again. I didn’t like her then, and I’m sure my opinion of her probably won’t have improved now. But anyway, the library is a good resource to have, so I’ll set aside my distaste and take Theo soon. I’m hoping they have an audiobooks section, as I think he might enjoy choosing a book to listen to on his CD player.

Sam got a little media/Web coverage this week. The executive director of his Early Intervention center was being interviewed by our local Fox affiliate this week, and he had asked me if he could use some pictures of Sam in the interview. I said that was fine with me—after all, Sam’s pictures are all over this public blog, so it’s not like his face isn’t already out there to some extent—so he took some pictures, and they were played during the interview. I woke up early on Saturday and watched it, and Chris and Theo watched the replay on Sunday morning. It’s also supposed to be posted on KTVU’s website on the Bay Area People page, but as of right now I don’t see it up yet. If they ever put it up, I’ll post a link so you can see it. 🙂

A piece I wrote about Sam’s experience in EI is also the cover story on their winter newsletter. Many of you probably already read the piece (I posted a slightly revised version on the blog some weeks ago), but if you didn’t and/or you want to see it actually laid out with Sam’s cute grin pictured next to it, click here.

Speaking of Early Intervention, he has just ten days left—sob! Actually, eight days if you count out next weekend. I’m just hoping he stays healthy so he can have his little graduation ceremony on his birthday. As hard as that’s going to be for me to watch, I really need the closure from it. I have gotten very attached to his teachers and the kids in the classroom, and I just can’t stand the thought of it ending abruptly, with no little ceremony. That said, assuming he stays healthy and we are able to have his graduation, I’ll be a bawling mess. I went to his friend’s ceremony a little over a week ago, and it was so cute…and so bittersweet.

Speaking of Sam and wrapping up EI, we have his IEP meeting on Tuesday. That’s the meeting where we set up everything with the school district, and all of his therapies and such transfer over to the district (along with his schooling, of course). In a way I’m dreading it, but in a way I know it will be very civilized. They called me this week to ask how I liked the special-ed class they had me tour, and I basically told them it seemed like a nice class but that it was not right for Sam, in my opinion. They said if there was nothing they could do to change my mind, we’d just head into the IEP meeting knowing that I wasn’t going to agree to their offer. So in a way, the hard part is done—they know I’m not going to agree to their offer, and I know we’re headed to court. But still, sitting for two hours hammering out the details of his next year isn’t going to be the most fun I’ve ever had. We still have to wrangle therapy details and such. But Theo and I are going to bake cookies to take to the meeting, so it’s all good. Everything’s better when chocolate-chip cookies are involved, right? 😉

Theo actually has Monday off school (teacher in-service), so he and I are going to have a little mommy-Theo date that involves lunch and cookie-baking. I have to be on a conference call for a bit in the morning, but then we’ll still have a few hours for our date. The conference call is for my work as medical outreach coordinate for Down Syndrome Connection. I started work last week, putting together the spreadsheet of information we have so far, and now I’m starting to contact other people who have similar programs in their region to find out what’s working, what’s not working, etc. No point in reinventing the wheel when I have a lot of connections who can give me some pointers on how to start! I did discover that I have a whopping 39 hospitals to handle. Wow. I told Chris this, and he said, “You have to visit 39 hospitals? Maybe you should get some new clothes.” He hastily added that he thought I might make a better impression if I had some good clothes. Ha ha, gee, thanks, honey! I see my yoga pants aren’t exactly a power suit! Ah well, he’s right—I do need something a bit more professional. Having spent the better part of 12 years working at home, plus having gained weight…well, my wardrobe doesn’t exactly have much presentable in it. I’ll have to work something out.

Anyway! Before I wrap up, let me share a little video of Sam doing speech therapy this week. He’s making huge strides in trying to vocalize, and this video really shows it. So exciting!

I may sound like I’m super-invested in Sam learning to talk, and I should clarify one thing: Some kids with DS never talk. Some only sign, and some communicate in other ways (with assistive technology, for example). If that was Sam, I would be okay with that, and we would work with what he could do. It’s not as if spoken speech is the end all, be all. But because it appears that Sam can talk and is very motivated to do so, we’re definitely doing all we can to encourage him. And it is very exciting for us, since it helps us understand much more what he needs and wants. Which is usually chips or bacon. 😉

We actually just got his latest speech evaluation from his therapist (which is not the same as the somewhat dismal speech evaluation we got from the district—his therapist uses a different measurement scale), and he’s made a lot of progress. His receptive language is now at roughly 30 months and his expressive language is at roughly 18–24 months. That’s a huge jump from the last time he was evaluated, six months ago. Exciting!

Happy end of January, all!

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