July 12, 2015: I Got Nothin’

Well, here I am trying to think about something interesting to write about this week, and I’ve got nothin’…a whole lotta nothin’. It was a whole lot of mundane, really. Though Sam started swim lessons…and then promptly stopped them. Definitely an epic fail. We’re going to restart in mid-August with some private lessons for him instead. He got a face full of water because he stepped off the step where he was supposed to be waiting for the teacher…and I nearly had a heart attack. I knew it was likely to happen, and the teacher knew it was likely to happen, but still…I nearly had a heart attack. And he didn’t like it one bit…so yeah. We’ll try private lessons with his teacher later in the summer.

I worked a lot—and will be working a lot for the next several weeks—because…we decided to take a short vacation! I got offered a few extra projects I wasn’t anticipating, which has yielded a little extra income, so we decided to plan a short getaway. I did some sleuthing, and it turns out the least expensive reasonably close place for us to go is none other than one of our favorite vacation spots, Cambria! So I booked a house for several days in August. Our usual little cottage across from the ocean wasn’t available this time (wah!), so we’re a few blocks off the water, but we can still walk to the bluffs and tide pools in a few minutes’ time and see the ocean. We’re very excited! We’ve been working a lot the past few months, so it’ll be nice to have a quick getaway before Theo starts second grade (which I anticipate will be more fun than a barrel of monkeys, given his distaste for homework).

Work has, at least, been fun. I’m working on writing a book about Frankenstein’s monster, which is relatively interesting, but even more fun is a new project I’ve undertaken. Now that I’ve had a couple of meetings about it this past week, I can share a bit more about it. I’m going to be working on writing legislation for the State of California (and hopefully getting it passed!) that will require medical providers to give parents receiving a prenatal or postnatal diagnosis of Down syndrome up-to-date information about Down syndrome. In case you’re thinking, “Wait, don’t you already do that?” the answer is…yes. Sort of. I do it for our local area—and it’s not a law. I just provide the materials to our local hospitals (and I’m about to start working on the local obstetricians and geneticists who would be handling prenatal diagnoses). But whether they actually use the information is up to them. The law, if enacted and enforced, would actually require the materials to be given out all over the state of California.

There is actually federal legislation about this (the Kennedy-Brownback bill), but it hasn’t been funded, so laws are being passed at the state level. Right now, I believe eleven states have passed the law—one that has done so very successfully is Massachusetts, whose Department of Public Health now ensures that parents receiving a diagnosis of Down syndrome for their child receive the up-to-date information. California does not yet have the law, though there is some interest in it. So that’s where I come in. 🙂 We need to write a bill that focuses on being pro-information (not pro-life or pro-choice; that is a whole other issue that doesn’t pertain to this), and then we need to get it backed by either a politician or special-interest groups so that we can get it into the legislature. It will be an interesting challenge, but I’ve already been introduced to some good contacts that I think will be very helpful.

I’ve had a few meetings this week with various people about launching this legislation, and I’m really excited to get started working on it! It’s funny the directions your life takes you, isn’t it? I certainly wouldn’t have predicted this one five years ago….

So I guess maybe this week’s not so much a whole lotta nothin’, huh? That’s something! But it’s just something in progress, not something tangible yet. An exciting in-progress event…

As for the boys, other than Sam’s failed swim lesson, much this week was the same old, same old. On Saturday morning, though, I took Sam to the park for a play date with a preschool friend and their beloved former preschool teacher. Part of the drama at Sam’s preschool involved this teacher being let go, and I was very disappointed about that (as were all of the other parents), because she was wonderful. So now that the dust has settled, we were able to reach out and get together with her, which was so nice. Sam ran right over to her and gave her a huge hug—he has missed his “Ya Ya!” Unfortunately, she won’t be coming back to the school (although she has been offered her job back) because she is starting her own daycare, but at least we’ll hopefully get to see her now and then. And Sam’s current teacher is great, too. Now that the dust has settled with the drama, they have regrouped the kids and reassigned teachers, and he ended up with another one who I really like, Miss Cami. She’s very warm and loving and enthusiastic, which I think is a great match for Sam’s warm, outgoing personality. She told me a few days ago that her goal for this week was to get him counting to 10 by the end of the week. (He knew 1, 2, 3, 8, and 9.) Um…guess who’s counting to 10 now? He skips 7 because he can’t say it, but he says “One…two…fweee…four…five…ix [s’s are hard for him to say]…eight…NINE!! [he always shouts this one]…ten!” Way to go, Miss Cami…and way to go, Sam!

After Sam’s Saturday morning playdate, we met Chris and Theo at a birthday party that Sam had been invited to. Theo was invited, too, so we all went. The birthday boy was turning 3 and thus Sam was the main invitee from our family, but the family has an older son who Theo is friends with, too, so Theo got invited as well. What fun! They had a little train come and drive the kids around the neighborhood. Sam was iffy about the train (which was rather loud), but he loved playing at the water table with the other kids and also going on the big trampoline with them. He fell asleep in less than three minutes when we got in the car, so I’d say that’s a successful party!

I’m posting this on Saturday night because tomorrow night we’re having a houseguest, and our office happens to double as our guest room, so I won’t have computer access. 🙂 My legislative advocate cohort from Southern California is coming up to give a testimonial during the legislative hearing for the California ABLE Act on Monday, and she has a six-hour drive each way for it, so I offered our guest room to her so she didn’t have to do it all in one day. I’m also going to attend the hearing—it’ll be good practice for me, since hopefully I’ll be doing the same thing with the Down Syndrome Info bill when we get that into the legislature. 🙂 (See how I’m thinking positively there? WHEN we get that into the legislature!)

We’re also having Theo’s BFF, Gavin, over for a swim date and BBQ tomorrow, so I may be too tired to blog anyway. Two crazy seven-year-olds and a wild three-year-old…yeah, I’ll probably be glad I posted it tonight. 😉

Happy week, all!

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