Feb 21, 2016: This and That

Happy mid-February, everyone! We’ve been enjoying some lovely warm days—as well as a surprisingly good storm on Wednesday night. The nice thing was, the rain was finished by the time I walked Theo to school Thursday morning. Whew!

Wednesday was a big day for the kitties, too—they finally got spayed! And none too soon—we think Violet may have been going through her first heat cycle. She started acting really odd a couple of weeks ago—would not leave me alone, kept meowing at me and then rubbing her face on mine rather obsessively, which was unusual behavior for her. I looked it up, and apparently that may be a sign of heat. Good grief! With no male cats around, apparently I became the object of her affection. But anyway, they are now both spayed. There’s a local animal rescue foundation (run by Tony LaRussa, in fact) that does spay clinics every Wednesday, so we had simply been waiting for an opening. And now the deed is done!

Perhaps not surprisingly, the cats weren’t at all phased by it. They were back to normal behavior within 48 hours, and even the same day of the spaying, they were surprisingly active. Izzy did hiss at Zoe a few times to let her know not to come near (which is unusual for Izzy but not surprising given that she’d just had surgery), but by the next day she was back mostly to herself. They were actually rather ticked that I kept them sequestered the first night–they wanted to be out and roaming the house as usual!

That was an eventful day, too, because Theo came home “sick” from school. I’m not entirely sure he was sick, but his teacher thought he was, so he came home. (The school nurse didn’t think he was, either. I have a feeling it is just allergies. He was a bit congested, but nothing to suggest a cold. The next day I gave him some allergy medicine, and he was totally fine.) But anyway, the funny part of this story is, when I got the call from the school and headed to the office to pick him up, I found him surrounded by five members of the office staff, as if holding court. “Mom!” they said when I came in. “Theo has been keeping us all entertained for fifteen minutes!” They then proceeded to tell me all that he had been telling them, and the vice principal, who I hadn’t met before, extracted himself from the group around Theo and came over to shake my hand. “I’m the vice principal,” he said. “Congratulations, Mom: Your son has a brilliant future in the law if he wants.” And then he started laughing when I said, “Oh, believe me, I know!!” He started cracking up and telling me all about Theo, and it was clear that Theo has made a friend in him. The vice principal is surely a good friend to have, my son!

The VP has actually met Theo at least once before, when Theo was in his office recently after being punched in the face by his friend, resulting in a bloody nose. This isn’t as negative as it sounds—they are good friends who just got in a typical squabble, and Theo’s friend apparently hauled off and bopped Theo in the nose…which gave Theo a bloody nose. It was no big deal, and they had made up almost immediately. Honestly, I felt terrible for the little boy’s parents—they texted me absolutely mortified and apologizing, and I’m sure I would’ve felt the same way if I were them! But we weren’t upset: Theo’s friend is a very nice little boy who we like, and based on Theo’s retelling of the situation, it was just a “boys will be boys” spat. But anyway, I think that was the VP’s first meeting with Theo, as the VP is relatively new to the school. It wouldn’t surprise me if he’s seen him other times, though, because Theo is frequently in the office. Apparently he and his friends play “extreme head-injury soccer” at recess, so Theo is often in the office to receive care for his various injuries. (Reality? Theo likes going to the office because the people who work there love him and give him a ton of attention. He never comes home with so much as a scratch or a bruise on him, so I’m quite sure these “injuries” are trumped up for effect. When I went in to pick Theo up the other day, another little boy I really like was in there for a similar “injury”—basketball to the head—and one of the office staff said, “Ah yes, your son and C share a similar tendency to get ‘injured’,” and winked knowingly at me.)

Anyway, all this meant that Theo was home with me when Sam’s Regional Center caseworker came over for her annual check-in. He kept himself busy, though, so it wasn’t a problem. Sometimes answering a lot of questions in front of Theo can be a little dicey—there are things he doesn’t really need to be privy to at his age. But in this case it all went fine. It was a pretty brief check-in. They just come once a year to ensure that Sam is doing well and to see whether we have questions. Usually I don’t, but this year I did. Number one: diapers. Diapers are covered (to an extent) for children who haven’t yet potty-trained by a certain age. And as much as I’d like Sam to have potty-trained, he has other ideas. Believe me, we’ve been working on it for a long time. He’s got some level of awareness about it now, which is a big step in the right direction, but we’re still a long way from it happening. The bigger he gets, the more expensive diapers get, so it’ll be nice to get a little assistance on that.

But the other, more pressing issue I wanted to discuss was respite and Medi-Cal waivers. Honestly, we haven’t taken any advantage of Regional Center services since Sam finished up at Early Intervention the day he turned three. We just haven’t needed to. Last year, his caseworker said to me, “Are you sure you don’t want a few hours a month of respite? I mean, don’t you and your husband need a little time alone every now and then? You could use it to go on a date or something!” The idea behind that type of respite is just that parents of kids with special needs sometimes have a bit of difficulty finding a babysitter, and there are some added pressures of raising a child with special needs, so it’s beneficial to the parents (and by extension, to the children) if the parents get a little break every now and then. Last year, I didn’t think we needed it. But this year…well, maybe. It would be nice to have a babysitter every once in a while, just to get two hours together without the kids. I don’t even think I remember the last time we had a date. I think it might’ve been for the Genentech concert last June. That’s quite a while! So, I broke down this year and said, “Okay, yeah. Talk to me about respite. We probably could use a little time together every now and then.” But there’s another reason, too…an even more important one: the Medi-Cal waiver.

I never worried about the Medi-Cal waiver because we have good insurance through Chris’s work. Honestly, I didn’t even know what it meant. And then I went to the NDSC conference last year, and people said to me, “Are you kidding? You should’ve been on the waiting list for the waiver for a long time now! Why haven’t you applied?!” And I said, “Because no one told me about it. And we have insurance.” Well, it turns out what this Medi-Cal waiver does is, it kicks in where your insurance doesn’t cover. So all those copays we’ve been handling for four years? It would’ve helped with those. And all the therapies not covered by insurance? It would’ve helped with those. Oy vey. When I think about how much we’ve spent out-of-pocket on medical/therapy stuff over the past four years, I really wish I would’ve known about this.

But here’s the thing about the Medi-Cal waiver: You need two qualifiers. Down syndrome is one qualifier, but we don’t have a second. Sam has no additional diagnoses, such as autism or a heart condition. Which is good except when you’re hoping for a Medi-Cal waiver. But here’s what you can use as a second qualifier: respite. So if we get hooked up for a little respite, we not only get to spend a little time together as a couple, but even more important, in theory we can also get the Medi-Cal waiver to help with some of the not-covered medical/therapy costs we’d been handling out-of-pocket.

This would be a good thing because I’m beginning to think that Sam would benefit from OT. Most children with Down syndrome get occupational therapy, but Sam never has. His fine-motor skills have always been reasonably decent—delayed, but not too far delayed. So it has never been offered to us. But recently, I’m noticing him start to slip further behind in fine-motor skills. Many of his peers (with DS) are able to use an iPad to trace letters and shapes, for example, which is an important prewriting skill. Sam doesn’t yet have the dexterity to do that. So I’m thinking some OT is probably in order. But even if I can get our insurance to agree, the copays will be out of pocket, and they get expensive. So…Medi-Cal waiver. At least, that’s the plan.

I hope this doesn’t sound like two middle-class people taking advantage of a system designed to help people less fortunate. Because we are indeed middle-class…but we are very stretched middle-class. The amount we’ve spent out-of-pocket on this stuff is actually quite high (and makes me realize why we are generally cash-poor!), so I’m just trying to find a way to ease that going forward. I don’t want to skimp on what therapies Sam needs, but I also don’t want to put us in the poorhouse.

Speaking of the poorhouse, I was not there on Thursday, as I went down to give a talk at Stanford University Hospital. Good grief, the houses around there are amazing!! My nine-year-old minivan looks rather out of place in those neighborhoods. Anyway, the talk went well—I was doing the presentation about discussing Down syndrome with new parents that I developed for our Down syndrome association for a group of students in their master’s program for genetic counseling. I was excited because that’s just the group we want to target: These are the people who will be delivering new diagnoses, so it’s very important to us that they understand positive ways to address the topic! Certainly, these students know all the science behind it, all the technical details. But knowing how new parents may be feeling is a piece not generally covered in their classes, so we were excited to get to come share that piece.

On Saturday we took the boys to the Bay Area Discovery Museum in Sausalito. I thought it would be chilly (it often is there, right at the end of the Golden Gate Bridge), but it was actually warm and lovely. Chris went off with Theo, who had fun on the playground and using the manual typewriters in a section devoted to older communication devices, while Sam and I played in the tot area and then played ping-pong in a section devoted to Chinese culture and pastimes. Sam is too little to be able to handle the paddle much, but he has really good aim and would throw the ball to me so I could hit it back to him, which he thought was a grand game!

On Sunday, we went out for bagels and a trip to the park to enjoy the sun. And now Chris and Theo are working out in the yard while I write this blog and Sam naps. We’re trying to get our garden ready for planting in a month or so. It’s full of weeds, and the soil really needs to be turned and amended, so I think Chris is working on pulling out more roots and turning over the old soil. We’re hoping to have more luck with the garden this year, since we can actually plant it on time! I have a tendency to plant too much, so this year I think I’m going to focus on tomatoes, tomatoes, tomatoes and see if we can get those going. We use them in many things, so even if we end up with a ton, they won’t go to waste.

And as soon as I finish this blog, I’m going to go tackle my next project in Operation Inexpensive Home Updates: “staining” the ugly yellow “oak” piece around the top of the fireplace. I found this gel “stain” that supposedly works amazingly well for this type of thing, so we’ll see. If it works as well as everyone says it does, my next project is doing the banister, which is that same 1990s yellow “oak” that we’re not fans of. Cross your fingers!

In case you missed it, I had another post this week, about a renewed love affair of mine. Click here to read it.

And as always, enjoy the pix!

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