May 15, 2016: New Beginnings

Well, we kicked off our week with one of my least favorite things: an IEP meeting! But I’m happy to report that it was a rousing success—it was downright pleasant!

Actually, I had assumed it would be fine because I’ve been in touch with Theo’s teacher a few times throughout the year over various things, and every time she has been very, very positive about him. So I figured that meant all was well—and indeed it has been. She said she has no concerns about his academic progress, as he’s on grade level for everything (and a teeny bit above for reading), and more importantly (to us!), he’s very well liked by his peers and gets along well with everyone. She said he’s been a real treasure to have in class, which as you can imagine made my heart very happy! I really wish we could take her with us to third grade—Theo has just responded so well to her teaching, and this has been by far his most successful year so far. Kid is never going to enjoy homework, I don’t think…but I surely don’t blame him for that! The fact that he’s actually enjoyed going to school and learning while in the classroom is what I care about.

We were a bit surprised to find out that he’s being discharged from occupational therapy, but after seeing the work he produces in OT, we can see why. It’s incredibly readable! I think even Theo’s teacher was a bit surprised, because his in-class writing isn’t nearly that good (and his at-home writing is pretty dreadful). In talking with the team, it seems a good approach is going to be consistently reminding Theo to “write like you do in OT.” They all agreed that there’s just so much going on in his brain that he gets distracted and hurries through…resulting in sloppy work. But the fact that he is now capable of producing legible printing is a HUGE achievement for him!

So we’re keeping his IEP mostly because as school gets harder, I want it in place in case we need to add accommodations. In particular, I have a feeling we may need to add some around standardized testing, which starts in third grade and which I’d love to see dropped, but I don’t make the rules for everyone. (Why not?!?!) But we’ll see—he may surprise me. I’ve just heard from a lot of parents of autistic children that as they get further in school, it can get significantly more challenging and may require more supports. So by leaving the IEP in place even though he doesn’t really need anything in the way of support right now, we reserve the right to put supports in place later as needed.

I may not even have to do an IEP meeting this year for Sam, which would be awesome! Our settlement last year was written with the provision that we could extend it for a second year if all parties agreed. I agree (as does Chris), so we just have to make sure the school district does. They seemed amenable when I spoke to them a couple of weeks ago, so I’m hopeful.

Speaking of Sam’s education, it’s official: He’ll be starting a new preschool in the fall. He’ll finish up where he’s at either at the end of May or in mid-June (I haven’t decided which yet), and then he’ll do a summer communication program through Down Syndrome Connection, and then he’ll start a new preschool in the fall.

Although I hate making him change an environment where he’s generally comfortable (and so I waffled back and forth FOREVER about whether to change him), I think this will be for the best. Certainly, for me it will be more convenient—we can literally see the roof of the new school from our backyard! If I need to go pick him up in the middle of the day, he’s just a five-minute walk away! And hopefully he’ll do as well there as he has at his current school. His trial day went well, so I’m hopeful. It will require me to sell a kidney to pay the extra monthly fees for it, but what the heck—I only need one kidney, right? 😉

In case you’re wondering why we changed…well, it’s a long story. But I’d say that the biggest factor was that I think some of the staff at his current preschool underestimate Sam’s abilities, and I don’t think that does him any favors. There are a few smaller factors, but that was the biggest one. And the straw that broke the camel’s back and made me finally make a decision was a reprise of the Booger-gate scandal—the current director gets very stressed out every time Sam has a runny nose, and then it stresses me out. Sam frequently has a runny nose over the fall/winter/spring because of his narrow nasal passages—stuff just blocks up and then drains a lot more than it does with a typical kid. I can’t even tell you how many moms of kids with Down syndrome I know who face the exact same thing! It’s just part of DS for some kids. And I know it’s gross, but I also know it doesn’t mean he’s sick. Sure, sometimes he’s sick—and then I don’t bring him in. But if it’s just Sam drainage…well, if I kept him out of school every time he had that, he’d be out for the entire winter. (Well, that might be an overstatement, but probably at least half!) I talked to a lot of other DS moms, and all said that their kids’ preschools simply realize the snot is an issue and cheerfully deal with it—keep a spare box of Kleenex nearby. No matter how many times I talked to them at Sam’s school about this, it still seemed to be a problem area. We had a bit of an altercation about it on Thursday that left me in tears, so…that’s it. New preschool. I’ve had enough of the Fear of Snot. I shall warn the new preschool that Snot Happens, and hopefully they will be better equipped to deal with it.

Speaking of snot (isn’t that a great transition?!), I did keep Sam home one day this week (Tuesday) when I thought the snot might be an actual cold. It turned out not to be and had actually dried up by 9am, but by then school had already started, so I just kept him home. I had to run errands that day (chiropractor, smog check, and Target to pick up a birthday present for one of Theo’s friends), and I admit I was dreading taking Sam. He typically hates shopping and whines and fusses the entire time, so I always plan my errands for when he’s at school. But I bit the bullet and set out with him, figuring it would be a long, painful morning.

But I was pleasantly surprised! He sat cheerfully in the chiropractor’s office looking at the books I had brought while I got my much-needed adjustment. He then sat happily reading books with me in the smog-check place while I got the car smogged—despite a little tyrant child snatching all the toys away from him. (By the way, I had a moment of smug pride that I probably shouldn’t allow myself if I’m a nice person. But what the heck—we all need moments of pride very now and then, right? The tyrant child in the smog-check place was about three and was a little stinker. In addition to taking all the toys away from Sam and hoarding them, he/she—couldn’t tell for sure which it was, as the hair was long and curly and the clothes were gender-neutral—the kid climbed up to the coffee station and dumped powdered coffee creamer all over the floor, and the mother did nothing while the other people in the smog-check place looked on in disgust and the tyrant child continued to disobey. I admit to being very proud of my well-behaved four-year-old who accompanied me! He’s not always an angel for sure, but he certainly was that day!) Then we headed to Target, which Sam usually hates with a passion, and he sat happily in the stroller, kicking his feet and chattering at me while I quickly grabbed a present for Theo’s friend and some other supplies we needed. All in all, a highly successful outing! I was pleasantly surprised.

And then the big event of the morning: Sam’s first back-and-forth conversation with me! We went home to eat lunch, and Sam, as usual, had no interest in eating for me. So I sat and ate a cup of cereal while he wandered around, and he came up to me with books in hand and said, “Read!” I said, “You want me to read you a book?” and he triumphantly said, “Yes!” I replied, “Can you wait until I finish my lunch?” and he said, “All done!” and ran to the couch with his books, as if to tell me, “Oh no—I believe you’re all done now, Mama!” It was a very big moment!! (And yes, I read to him. I can never turn down books!)

Speaking of which, here’s a video of the reading. It’s long and probably not of much interest to anyone other than grandparents, but here ya go! His favorite book is a Thomas the Train ABC book that my mom got him for his birthday. He identifies all of the letters in it and will also try to tell you some of the words on each page to describe the pictures. It’s his way of “reading.” You can see that it’s hard to understand the words he says, but if you know the context, you can pick them out. He’s trying, and that’s huge for us!!

Other than that, it was a pretty ordinary week. I cooked three Blue Apron meals, which were really yummy! The tteokbokki (a Korean rice-noodle dish) was one of our favorites we’ve had from them—SO yummy! And I also made a salmon dish and an enchilada dish with black beans and quinoa that was surprisingly good. (I’m not usually a huge black bean fan, but it was quite good.) I find myself really looking forward to doing these Blue Apron meals, and I know Chris enjoys the break from cooking!

On Saturday, we went to the farmers market in the morning, where I had a somewhat amusing encounter. Our farmers market is super small—maybe half a dozen vendors. And it’s never terribly crowded. While we were there, Sam and I were enjoying a family musical group that was playing bluegrass songs, and Chris and Theo were off somewhere. This woman came up and introduced herself as running for state assembly. I said, “Well, if you get elected, I’m sure we’ll be talking—I’m a legislative advocate.” She asked me who I worked for, and I told her Down Syndrome Connection of the Bay Area, and we had a nice conversation about kids with special needs and how important that is to her because her partner who was campaigning with her that day has a son with autism—and she told me she’d look forward to talking to me when she’s in office. At least, I thought it was a nice little conversation. Five minutes later, l had taken Sam out of the stroller and put him on my shoulders for the walk home (he was sick of the stroller). And she came up to me again and introduced herself and said she was running for state assembly. I laughed and said, “Yes, I know—we just met! I’m the advocate, remember?” She looked confused for a minute and then said, “Oh, yes, of course!” I had to laugh, though, because not only did I have Sam on my shoulders (and it’s pretty obvious that he has Down syndrome, which I would think would be a dead giveaway: “oh, this is the woman I just talked to who works as a legislative advocate for the Down syndrome group!”), but I was wearing a hot-pink workout outfit that was kind of hard to miss. We had gone to the market right after I got home from the gym, and I hadn’t bothered to change. I mean, I’m usually dressed pretty nondescript, but my gym clothes are quite bright! But it’s good to know that even dressed in hot pink and having a somewhat in-depth conversation about political issues with a politician, I’m still quite forgettable!!

After we got home from the market, Grandma Kathy and Papa came for a visit, which the boys loved. Chris’ birthday is this week (the big 4-0!), so they wanted to come up, see the boys and the kitchen remodel, and have a birthday visit with Chris. We all went to dinner at a local restaurant where Theo ate enough for a small army. Growth spurt!

On Sunday, Theo had a piano lesson in the morning, and then I took him to a birthday party. They had laser tag at the party, which he loves, and he was a laser tag junkie—even when most of the other kids had gotten tired of it, he was still playing. He played until the bitter end, and then moved on to jumping on the trampoline with a bunch of other kids, playing some sort of ball game on there. He had a blast—three and a half hours of hard partying! When it was over, he told me, “I made lots of friends, Mom. I get along with other kids really well.” Indeed he does…social butterfly, that one. Not sure how that happened, as he’s the product of two introverted parents!

Anyway, that was our week! This coming week will have some fun, what with Chris’ birthday on Wednesday. Theo is part of a study at the MIND Institute, so we’ll be going up to Sacramento on Wednesday for his first study appointment. Chris says he may take the day off and tag along with us, in which case we’ll bring Sam and just make a day of it. We shall see. These studies are usually kind of fun, and if nothing else it should be interesting. Theo loves having a captive audience, so sitting down with adults to talk and play games for two hours is right up his alley!

If you missed it earlier this week, I had a midweek post. Click here to read it—but be forewarned that it’s not exactly a happy one. I had a really hard time with some stuff in the DS community recently, and I wrote my feelings out about it.

Hope you’re all having a good May!

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