Nov 10, 2013: I Hate the Time Change

Greetings, all! I think this week’s title leaves no doubt about my feelings regarding the end of Daylight Savings Time. I’ve never particularly enjoyed “falling back” in autumn, mostly because I like it to stay light out later in the evening. But it’s never been that big of a deal to me. This year, though, it is. Because the time change has ruined what little sleep I was getting, so I’m cranky about it! Sam was already waking up for the day in the 5:00 hour much of the time, so now he’s waking up in the 4:00 hour, which is just inhuman. Put him back in his crib, you say? I do. He chatters noisily and then eventually protests, so I never get back to sleep. And as if that weren’t bad enough, he’s waking up all hours of the night again. Last night I believe he was up five different times. So, yeah…I’m tired. I’d like to sleep later than 4:30 a.m. on a regular basis. I hate the time change.

But moving right along…let’s talk about baking! Because we actually had a reasonably uneventful week (I was too darn tired to do much), but we did manage to have some cooking fun. We keep getting persimmons in our CSA box, and no one in our house particularly likes persimmons. Yet I hate to let them go to waste, so I decided I’d make a pie out of them. Because what doesn’t taste better in a pie? I made a homemade coconut-flour-and-cream-cheese crust, which was actually pretty tasty, and made a gluten-free persimmon filling. And actually, it’s pretty darn good! I should’ve peeled the persimmons, but I was lazy. (No, I was exhausted because someone doesn’t sleep! Sigh…) Next time I’ll peel them, and then I think the pie will be really yummy.

I also made some little individual…egg muffins, for lack of a better word. I sautéed some leeks and pancetta, dumped it in greased muffin tins with some cheese, and then poured beaten eggs over the top and baked them. Voila! Individual egg/pancetta/leek/cheese “muffins” I can pop in the microwave for breakfast! This is pretty cool because I don’t have time to eat breakfast before taking Theo to school, and most days I either (a) have to volunteer, (b) have to babysit Max while his mom volunteers, or (c) do therapy with Sam. So a lot of days, I don’t even get to eat anything until lunchtime, and then I’m rather cranky and overly hungry. Egg muffins to the rescue!

In addition to cooking food, I also cooked laundry soap this week! I call it cooking because you make it on the stove, much to Theo’s delight, so essentially we “cooked” laundry detergent. I’ve been wanting to try that for a while—I’m told it’s way more cost-effective than buying detergent, and Theo has super-sensitive skin, so I was wanting to avoid the harshness of store-bought detergent. (He has nasty, nasty persistent eczema that just keeps flaring up, so I’m trying to get that under control for him, poor guy…) And, we use cloth diapers some of the time on Sam, and the detergent options for laundering those are limited. So, my friend Robynne recently started a “prairie living” blog and website (though she lives in the mountains, not on the prairie!), and she has some pretty cool ideas. So…laundry detergent! If you’re interested, here’s her recipe: Theo and I “cooked” it on Saturday night, and I have high hopes that it will result in nice, fresh, inexpensive, non-itchy laundry for us all.

Let’s see…what else can I report? Sam’s communication is really taking off, as I think I mentioned. He’s definitely trying to say words, although I’m pretty much the only person that can understand them—and that’s just because I’m around him all day. He says a few quite clearly, but many are only obvious to me because I know the context he’s uttering them, and I hear him repeat the same sounds every time in that context. One example is “kitty.” We stopped to visit our neighbor on Halloween, and I could’ve sworn he said “kitty” when he saw their cat. But I wasn’t sure. However, we took the boys to PetSmart one night this week when we got the dogs’ nails trimmed, and I took Theo and Sam into the room with the adoptable cats. Sam immediately said, “Deedee! Deedee!” which is how he says “kitty.” So to anyone else, I think they’d just think he was making the /d/ sound, but because I’ve heard him do it several times when cats are involved, I’m quite certain it’s supposed to be “kitty.”

He also tries to say “toast,” which is his current favorite food. Every morning (at the crack of dawn, dammit!), he signs “cracker” at me (because he signs “cracker” for everything—it has replaced “more” as his go-to sign for everything) and says, “Tuh-tuh-tuh!” and points his finger. His speech therapist encouraged me to start making the beginning sounds of words for him to imitate, as a gateway to eventually saying the word, thus “Tuh-tuh-tuh” for “toast.” As for the pointing, I think it’s because I’ve been using his communication cards, and when I put him in his high chair for breakfast, I show him the toast picture, say “Tuh-tuh-tuh-toast!” and guide his little pointer finger to point at the picture of toast. So now he just points into the air and says, “Tuh-tuh-tuh!” when he wants toast. Again, no one other than me could probably figure this out, but since I’m the one who feeds him breakfast every morning, I’m quite sure he’s trying to communicate that he wants toast! Pretty cool…

Speaking of therapy, Theo’s OT through the school finally started. I wasn’t too concerned about it because they only give him 30 minutes a week anyway, but still—it’s in his IEP, so he ought to get it. And he is, now. I met his OT this week, when I was volunteering, and she seemed really enthusiastic and nice. Theo seems to quite like her as well. And Theo’s teacher told me, somewhat apologetically, “I’m pulling him out of Board Math for OT, because he’s way ahead in math, so I feel like that’s an okay time for him to miss.” Then she said, “Well, actually he’s ahead in everything, so I guess any time would be okay…but he’s farthest ahead in math, so I decided to have him miss that.” Which is totally fine with me—to be honest, I’m not overly impressed with Board Math anyway, and Theo prefers “math packets.” In fact, “math packets” are his favorite part of school. They’re worksheets, and he loves them. He actually wants me to get him some to do at home. Board Math, on the other hand, is a group lesson with the math done on a white board. Which isn’t a bad idea, but having sat in on Board Math, I just found it rather tedious. And Theo looked bored to tears. (Bored by Board Math–HA!) I think he prefers the hands-on “math packets,” so I’m totally fine with him missing Board Math. But anyway, my point in sharing this story is that he’s doing great academically, as we suspected he would, and that makes me happy. He has to work pretty hard on some of the social parts of school—sitting still when it’s required, not talking out of turn, paying attention and focusing—and he really has to work hard at the writing parts (the physical aspect of writing—he has wonderful ideas in his head, but actually writing them on paper is very hard for him), so I’m relieved that some part of school comes easily for him. I would hate to see him frustrated by all of school being a big challenge. At least the academics come easily to him…even if some of the other pieces are a challenge.

In other news, lucky Chris gets to travel in a few weeks! His boss sent out an email asking if anyone was willing to go to a training session to be held in Philadelphia, and Chris volunteered. Not only is it good for his professional development, but he has family he really likes in Philly, so this will be a great chance for him to see them! We briefly toyed with the idea of having all of us go, since the hotel room and rental car are already paid for, but in the end we decided we couldn’t afford two extra plane tickets (Sam still flies free for another few months) and the kennel fees for boarding the dogs. Sigh…I do miss traveling! I love Philly and would’ve enjoyed taking the boys around during the day while Chris was in class. But, c’est la vie—there is just no money in the budget for it. Ah well. Chris will get a lovely few nights of uninterrupted sleep (lucky dog!), and the boys and I will…do our usual thing. Hopefully with my Mom coming for a visit—if she’s feeling up to it, she plans to come for a couple of days, which will be fun!

I did manage to muster up the energy for one thing this week: advocacy. I blogged last week about why I advocate, and as it turns out I had a chance to do some this week. I’m a member of several Down syndrome–related groups, and one of my favorites is the “Rockin’ Moms.” This is a Facebook group I joined more than a year ago—the official name is something like “2012 and 2103 Moms of Kids Rockin’ the Extra Chromosome,” though we have shortened it to “Rockin’ Moms.” All of us have kids with DS born in 2012 or 2013. This is an awesome group of ladies, and seriously, sometimes they give better advice than the “professionals.” If something wonky is going on with Sam, I can ask these ladies, and inevitably several have gone through the same thing and have ideas. And they’re funny as heck, too. One of my favorite recent posts? One woman wrote simply: “Remedies for constipation…GO!” Only in this group would everyone immediately understand the situation and start tossing around good advice along with hilarious comments. And micropenis—we’ve talked a lot about micropenis. Ever heard of it? Neither had I, until I had a son with DS. But seriously—where else can people talk frankly about micropenis? It’s just a great group. We share joys and frustrations, and we laugh a lot. I’ve met super-cool people.

So this week, one of the ladies posted that she was aghast to have gone on Sephora’s website and seen that they were offering a lipstick (part of their Kat Von D line) called “Celebutard.” In case you’re not familiar with the term, “celebutard” is a mashup of the words “celebrity” and “retard,” and it refers to vapid celebrities like Paris Hilton who don’t really add much to the world.

Now, in the grand scheme, is a lipstick with a tacky name the biggest problem we face? No, of course not. But it’s the principle. The word “retard” is cruel, and a word that uses it isn’t a word we need to have in the language. If we let things like “celebutard” slide by, we’re one step away from letting “retard” itself slide by…and then our kids end up getting hurt when people refer to them as “retards.” Not cool.

And honestly, would Sephora even try to market a lipstick named “Celebu-f*g” or “Celebu-n*gger”? Of course, not, because gay rights and civil rights have come far enough that we no longer use those slurs. Or we shouldn’t, that’s for sure. And they are definitely not socially acceptable in most circles. Yet, for some reason “retard” still slides by.

So we took action. A number of us posted notes on Sephora’s Facebook page and Kat Von D’s Facebook page. We submitted comments to Sephora’s website (which, ironically, censors the word “retard” and refuses to publish a comment that contains the word—even though they market a product with the word “-tard” in the name!). We alerted various Down syndrome advocacy groups. We let people in the media know. Lauren Potter, the actress with DS on Glee, got wind of it. Huffington Post got wind of it and ran a blog post…and then a story on the front page. And within three days, Sephora issued an apology and pulled Celebutard off the market. (Kat Von D, alas, simply tweeted “It’s just a f*cking lipstick.” Classy…but I can’t say I expected anything more.)

And I have to tell you, this feels good. I was only a small cog in this advocacy wheel, but together with my fellow Rockin’ Moms, we got the word out there and made a change…for the better. And damn, it feels good! I spend so much of my time spinning my wheels, fighting bureaucracy for Sam’s services and getting nowhere, that it feels good to have done something that actually made a change. Despite the fact that I got told (online) that people like me are the reason America is going down the drain (yes, because if I just shut up and allow words like “retard” to be used, the entire country will be a better place), and despite the fact that I got called a “lame housewife,” I hold my head high as a Rockin’ Mom…and someone who helped to, in my own small way, make a tiny part of the world better for my son.

Rockin’ Moms…I am so proud to be one of you awesome ladies!

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