Happy almost Fourth of July, all! Fourth of July is one of my favorite holidays because I absolutely love fireworks! Plus, I love holidays that are fun and a day off work but that don’t have any real “pressure” attached to them. It’s no secret on this blog that I’m not exactly of the mindset that we’re currently “making America great again” at the moment, but I do still intend to enjoy the Fourth of July. I love my country, even if not its leadership.
Speaking of not exactly being a fan of the current leadership, I’ve spent a lot of the week advocating about the healthcare bill and the damage that Medicaid cuts, caps, and carve-outs will do to people with disabilities. Being in a “blue” state, there’s not really all that much I can do—our senators already firmly oppose the proposed legislation. So, we California advocates are mostly just trying to continue to raise awareness about what Medicaid covers for people with disabilities—it seems a lot of people think it’s just healthcare for people who can’t afford insurance, and that is so far from the truth! Anyway, united in that effort, one of my fellow advocates made this neat meme of Sam. I thought it turned out really cute! It’ll be used with text that explains how Medicaid-funded therapies have helped Sam get to the point where he can be included in activities with his typical peers, like Cub Scouts.
Speaking of Medicaid—we got approved! For Sam, that is. I’m very pleased—though wondering what will happen if the government slashes the funding. But for the moment, Sam now officially has secondary insurance through Medicaid, which will cover about $2,000 in out-of-pocket costs we had been paying. Given our tight budget over the next year, this will be a big help.
In case you’re wondering, by the way—both Sam and Theo have actually benefited from Medicaid for long before Sam got approved this week. Medicaid helps fund therapies and special education services provided through the public schools, and both have benefited from that. And it also provides a huge chunk of the Regional Center budget, and both have used Regional Center services as well.
So even before Sam was a card-carrying member, Medicaid was our friend. We’re hoping our friend doesn’t go away. 🙂
In other health news, I had to go to the eye doctor on Monday, unexpectedly. I woke up Monday morning with pingueculitis! I tell you this not because it’s particularly interesting, but mostly because it’s such a fun word to say! It’s pronounced ping-gwek-you-litis. When the eye doctor told me that’s what I had, I said, “I have no idea what that is.” Turns out it’s an eyeball inflammation. Good times. A few days of steroid drops and rest from my contact lenses cleared it up. In case you’re wondering, apparently it tends to happen to middle-aged people. I was delighted for the reminder that I’m now middle-aged. Whee.
On the bright side, Sam has now accompanied me to two eye appointments and seen firsthand that the eye doctor does not kill you, so maybe he’ll be a little more cooperative when it’s his turn again in a year?!
Sam also had his last day of swimming. He did so much better this year than last year—I am delighted! He doesn’t like to get his whole head wet, but he will put his face in, and he actually kicks pretty darn well! Here’s two videos and a pic from his last day:
Here you can see him putting his face in by choice:
And here you can see his impressive kicking. That’s all him—she’s not helping him!
And here he is getting his medal for being a great listener and trying his best!
Sam also had CRP all week, which was fun. Just like last year, we are marveling at the language explosion! He’s trying out all kinds of words. I recently figured out that he’s trying to string together two words in some cases, too. For example, he’ll say “That’s it”—though if you’re anyone other than me, you probably couldn’t understand it. He races through it and rushes the two words together, so it’s hard to decipher. But still, he’s trying! And I also discovered that “Wawawawatts” means “I want to watch…” Again, indecipherable if you’re anyone other than me or Chris, but at least he’s trying!
I also had a full-on conversation with Sam that didn’t involve yes/no questions, which was pretty exciting! We went hiking at Muir Woods (more on that in a bit), and he and I were sitting on a bench, looking around.
Me: What do you see, Sam?
Sam points up: Tees!
Me: Trees, that’s right! What else do you see?
Sam thinks for a minute and then points to the stream bank: Wocks!
Me: Rocks, that’s right! What else?
Me: Water, that’s right!
Seriously, that might sound like a little thing, but it’s super exciting for us! For a very, very long time the only thing he has answered is yes/no questions. Getting him to answer a Wh question is huge!
Theo had fun at his camp, too. I went to a parent meeting and got to meet his counselors and the psychologist who works with his group. It was interesting to hear how they approach the camp, and I actually like how they do it. I was afraid it would be very prescriptive, role-playing type stuff (which sounds dreadful to me, to be honest), but it’s not at all. The counselors facilitate interactions very subtly. For example, they talked about how many of the kids struggle to connect with other kids. So if one of those kids comes up to talk to the counselor about something that interests them, the counselor will say, “Oh, you know, Johnny was just talking about how much he likes cars, too! Let’s go see what he thinks” and will gently facilitate an interaction between the kids. Apparently a lot of the kids are like mine—they prefer to talk to adults. Theo’s actually pretty good at interacting with other kids, but he will gravitate toward adults if they’re there. I’m okay with that, but I also don’t think it hurts him to be reminded that other kids his age do have similar interests, too. It’s good for him to be able to interact with everyone.
So anyway, my fears of it being a “Now, Johnny, you pretend you’re talking to Theo about cars. And Theo, you’re going to answer Johnny when he asks you about cars” camp were unfounded.
I do also like that the kids at the camp have a say in what they’re working on. Theo is mostly work on developing his coping skills—he can get really frustrated when things don’t go as planned, and they are helping him learn to be able to take a step back and refocus his attention instead of obsessing over why things didn’t go the way he thought they would or should. Other kids are working on different goals—just depends on the kid. But the kids are instrumental in planning what they’ll work on, which I like.
Theo also really likes the quests they do twice a week. He almost always chooses the Science quest; this week, he built a bottle rocket one day and a balsa-wood glider with a working propeller the other day. Interestingly, he has not yet done the Robotics quest, which was the one he originally seemed most interested in. I wonder if it might attract more of the older campers—Theo generally likes to stick to his age group or younger, so that may be why he isn’t doing that one. Anyway, he’s having a good time.
Each week, the kids get to pick out stuff from the camp store with the points they’ve earned from working on their goals. Theo had enough points this past week to buy a fidget spinner, which he has been wanting. Fidget spinners are all the rage, and a lot of schools have banned them as being a distraction. They were originally created for kids on the autism spectrum, but then typically developing kids got obsessed with them too. And now they’re everywhere. So anyway, I don’t mind the idea of a fidget spinner, but it wasn’t anything I was going to buy for him—I figured if he wanted it, he could buy it himself. So he did, with his camp points. And I have to admit, it is a rather hypnotizing little gadget.
Neither boy will be doing camp next year, because we’ll be on our eight-week road trip. But Theo says he wants to try this camp again in two years, so we shall see. I didn’t love everything about it (the snacks they offer really surprise me—I’m not militant about food, but giving a bunch of kids on the spectrum a choice between Doritos and cookies every day seems a little questionable to me), but in general it has been a good experience, and Theo has enjoyed it. He finishes up this Friday, and then he’ll be doing a week at the camp he did last year.
By the way, while at the parent meeting I got a stream of texts from Theo. At first I thought he was just feeling needy and being affectionate. But then his true motivation came out:
I admit, as much as some people think texting is contributing to the downfall of our society as we know it, I disagree. I actually have some great conversations with Theo and with Chris via text. Conversations that I might miss out on if not for this quick, easy method of communication. I’m a fan.
This weekend, we decided to hike Muir Woods on Saturday. I have wanted to do that ever since we moved here six years ago, but the prospect was daunting. Not the hike itself—it’s short, easy, and very accessible. But the parking up there is a nightmare, so you have to park twenty-five minutes away and take a shuttle.
Back in the days when Sam was younger and I had to lug a diaper bag everywhere, hauling two kids plus stroller plus diaper bag on a crowded shuttle just wasn’t appealing. But now I can just stick a spare diaper and pair of pants in my purse, and it’s all good. So we decided to try it. Plus, it’s a National Park, so we get in free! (And even our shuttle tickets were free!) I love that silver lining of having a kid with a disability—we get a lifetime National Parks pass. Chris jokingly said, “They should tell people that when they deliver prenatal diagnoses: Your baby has Down syndrome, but hey—you get free lifetime access to all the National Parks!” He he he….
Anyway, three of the four members of our family very much enjoyed the trip. The fourth member was moody and out of sorts. Better luck next time for that member. We did the two-mile loop, which was all paved/boardwalk/packed dirt and very easy to push a stroller on. Sam walked a fair bit himself, but two miles is more than he can do. So the stroller came in handy when his little legs tired out!
It’s really a lovely place. I highly recommend a visit if you’re in the area (Marin, just north of San Francisco). The shuttle-bus ride is a bit harrowing—we literally almost scraped a cliffside because the road is so narrow in parts, and we also ran over a cone that was blocking off part of the roadway that had been washed away. But if you can handle the shuttle-bus ride, the experience of Muir Woods is well worth it! I do love the National Park Service—I find their parks and monuments to be so well done and enjoyable to visit. I always marvel at how they manage to make them as disability-accessible as possible without disturbing the environment much. We saw several people in wheelchairs who seemed to have no problem accessing the park.
Lovely Muir Woods:
Checking out an informational sign:
See that black tree piece, right in the middle? Apparently it was the original tree. When it was destroyed (by fire, they think), the root system sprouted up a bunch more trees in a circle around the original tree trunk. They form little circles around the dead original trees. It’s pretty cool!
Theo likes to do the Junior Ranger program whenever we go to National Parks. I think this is the third Junior Ranger pin he has earned. He should earn a bunch on our long road trip next year!
I wish I could remember the name of this. Mountain sorrel, maybe? Anyway, it looked like very large clover. It was everywhere, and I thought it was pretty cool.
I hadn’t realized that the delegation that established the United Nations originally met in San Francisco and went to Muir Woods. Pretty cool!
Fuzzy pic, but this was my little hiking buddy for much of it:
Also fuzzy, but I love this pic!
Behold, giant trees!
We had two exhausted kids on the shuttle-bus ride back down the mountain:
Sunday we stuck close to home and just went to the local wildlife-rescue museum and park, then out for ice cream. Ever my son, Theo asked to sample the tequila ice cream and then opted for coffee ice cream with chocolate chips on top. Just like mama: margaritas and coffee!
Sam’s favorite activity at the wildlife museum: “flying” over Mt. Diablo!
Speaking of food, Sam is currently still on an elimination diet (gluten and dairy) to try to clear up a stubborn rash and see if we can figure out what’s triggering it. It’s making it very hard to find things for him to eat, since his diet was so limited anyway. But I discovered he loves a non-dairy Jamba Juice smoothie of carrot juice, orange juice, and mango. He sucks them down like candy! If only they weren’t $5.50 a pop! I admit I’m buying him more of them than I normally would, just because other than that, about all he’s willing to eat is bacon and tortilla chips. It’s amazing that child is as healthy as he is, given his crappy diet.
Also speaking of food, Chris, Sam, and I got to have lunch with my mom and her cousin this week! Every year Rich takes a road trip across the U.S., and he often stops to see my mom. This year we were able to join them for lunch! Rich is kind of living my dream—road-tripping every summer sounds like heaven! (He also does it in a fancy little Mustang, which makes it all the more my dream….)
A final note: I had another post earlier this week, if you missed it. I will warn you right now, it’s not exactly uplifting. (Or maybe it is. I’d like to think the end is.) I think some people might wonder why I posted it publicly, rather than just journaling it. Three reasons: 1) I don’t own a journal. 2) I think what damaged me the most from the whole experience was spending my entire life hiding it. Being honest about it is my way of trying to turn that around. 3) Most importantly, there is still a very real stigma attached to being the victim of sexual abuse. That’s a wrong that needs to be righted. Women should not feel ashamed for something they couldn’t prevent. They shouldn’t feel embarrassed for having a piece of their soul chipped away. If I continued to stay silent, I would just be contributing to that stigma. My favorite saying is “Be the change you want to see in the world.” I want to see that stigma disappear someday. So by being honest, I’m being the change I want to see.
If you still want to read the post, click here. I definitely understand if you’d prefer not to. It could be triggering for some, though I did really try to keep it from being so.
Anyway, I’ve rambled long enough. Pictures…
From last Sunday’s hike on Mt. Diablo:
The look on his face when he sees a hairdresser approaching:
Theo loves these cats. I think the cats would prefer he didn’t love them quite so much—especially Isobel. But she tolerated a picture with him!
Shrimp pasta with summer squash. Pretty tasty!
Spinach and cheese manicotti with salad. Not the most exciting thing I’ve ever made:
Theo got to spend some time after camp with his buddy and his buddy’s bro. Isn’t this a great picture?!
Vegetarian fried rice topped with a fried egg and cashews. Yummy!
Hands down the best box meal of the week! Chris had to make this one, since I was at the camp parent meeting. Summer squash and poblano tostadas with rice, queso fresco, and spicy aioli. SO yummy!
How many males does it take to wash a car? Answer: five. Do you see the tiniest one in the garage, supervising the efforts?! (Also, this was an excellent way to keep four rowdy boys ages 9 and under from destroying the house. We are not above using free child labor around here.)
After forcing them to work, we also played some baseball with them: