Archives for February 2010

Good Things

In no particular order, things that are making me smile:

  1. My art is being shown on the Style Lush Blog and there’s a Giveaway going on over there as well. Go enter to win a free print. You should check out the whole site–there are shoe pictures over there!
  2. We’re headed to Plano tomorrow for more ABR training–finally got that mess worked out. Can’t wait to find new ways to help Charlie maximize his potential–also, we’ll be getting comparison photos, which I LOVE! Like before and afters, but with my kid.
  3. I wrote an article for a national art magazine and they sent me a contract in the mail–like, I might be in an honest-to-goodness magazine. I’ll let you know if it all works out, but a magazine, y’all–not one that they sell in super markets, but one they sell at most major booksellers. How cool is that?
  4. Charlie got a new chair. I don’t know why, but I like it better than the old one. Feels less bulky. It may or may not be doubling as a coffee table in this picture.
  5. This picture of Charlie. Again with the beach theme only my sand is colored–I figured, what the heck! Good visual contrast! Yeah, looks a lot like marinara–he scooped that stuff up lickety-split and shoved a handful in his mouth. It’s possible that we took a bath thirty seconds after this picture was taken. It’s also possible that I found orange goo in his nose about an hour later.

He might be a little cross-eyed, but he is cross-eyed with glee I tell ya.

Why Choking Your Kid Can be Educational

I’ve mentioned our Unit on Oceans, right? Oh. Obsessively? Yeah. I guess that’s possible.

Well, I decided to try a little activity that I found in Family Fun magazine. It’s a recipe called “squid dogs.” I took one look at it and knew we could do it at our house. I re-named it Octodogs because we’re studying Octopuses this week.

I am not the kind of lady who feeds her kids hot dogs–I don’t even own a microwave–I had to specifically buy some for this activity, but I thought it was worth it. Even got the really expensive hot dogs because the things freak me out (see also: Katy needs hot dog therapy). So you take a hot dog, cut it up, and then stick spaghetti noodles through the sections. Four noodles per hot dog piece and that will mean eight legs sticking out the sides. Octodogs I tell you.

So, I make the octodogs, show them to Charlie and then put them on his tray to explore. The doorbell rings, it’s his OT, I go to let her in.

MEANWHILE Charlie picks up an entire Ocotodog, puts it in his mouth, chews like three times an then attempts to swallow.

Cue coughing/choking kid as professional enters the room.

Not long after that we decided to turn Octodogs into an activity about using your fork. Cut those suckers up pronto–poor things, never saw it coming.

Parenting–it ain’t for the faint of heart.


Lately I’ve been borderline obsessed with Charlie complete disinterest in speech. One of the people from the school district came a while back and absolutely marveled at how well Charlie doing using his augmentative communication device (a.k.a. Tina the Talker). I revelled in her compliment for about half a second before turning my agst back on full blast. I mean, the device isn’t terribly useful at this point and I find myself yearning for a child who can tell me which video he’d like to watch or even that he’s thirsty–I’m only human! Sometimes I think I’ve tried it all when in reality he hasn’t had a thing to drink in hours.

In truth, I think that I can worry about speech because I feel good about other things. Progress may be paint-dry slow, but I can see Charlie improve physically day after day–his body looks better and moves more freely. I’m addressing his intellect–we cover topics, read books, watch movies, and I see the wheels spinning when he’s introduced to new things. He eats; his vision is improving. I could just revel in this stuff but why do that when I could find something new to worry about?

So I worry about speech because it’s next–because I can taste normalcy in a way that I couldn’t before. In the beginning, I was glad that he could move all arms and legs. He’d make eye contact with the camera and I’d send the picture to everyone in my address book. I was happy for any victory.
I have often been confused by the parents of other children who are angry about their child’s disability. Specifically, parents whose children are disabled, but are still able to walk and talk. I’m not saying that they don’t have a right to be angry–I think anger is a valid part of the grieving process–but I look at them and see all that they have. They’ve got walking or talking, hell, good vision. I guess from their perspective, something is missing and that’s the thing we focus on–the missing thing. All I can see is what they do have.

Jessica is a fellow blogger who discusses her days as a special needs parent. She posted something recently that hit me square between the eyes and is still lingering. She wasn’t looking for pity or even really dwelling on it, but she revealed to us that her son, Connor, has what is considered a “severely life-limiting” condition. He’s already lived three times longer than the doctor’s original estimates and I can’t tell you the number of times I’ve read about her performing rescue breathing on him because of a seizure. She speaks frankly about her desire to preserve and record as much of Connor’s life as possible because they just don’t know when it will be over.
I wonder about that perspective too. In the beginning of Charlie’s life I was so scared about the future. So scared about having to care for him FOREVER. Scared that I wouldn’t’ be strong enough to go the distance. What if the opposite were true? What if each day was a gift that I might not get again? What would I do differently? Would I worry less or more? Would I handle it with Jess’s grace or crumble under the weight of it all?
How much of our struggles comes from our perspective? How much of it is real and how much of it do we create? Can we do things to make it easier? Can we give ourselves a break sometimes?

I wonder.

Photographs from our recent Ocean activity, putting sea horse stickers in the ocean. Not a hit. In this second picture he’s willing my husband to come save him.

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