Monday, March 30, 2009

Another Towel Not Thrown In

Get a whiff of these smelling salts. Not one damn thing is impossible, not one thing is unachievable. We humans are so freaking capable under so many outrageously unfair conditions, it blows my mind.

Watch Augie kick tail. One of his tools is the same augmentative communication device as Addie has. She does not use/need the eye gaze technology, but it's amazing progress, particularly for degenerative conditions.



Go ahead, pull an Augie today - go out and do something that defies the odds. You can do it.

Friday, March 27, 2009

And today...

I promise I'll get over this soon, but my girl is apparently on a roll. I'll let the very exclamation-pointish note from her teacher speak for itself:

Terri -
Addie worked so great this morning! We reviewed the letters from yesterday that she knew. She did it! Then I did the other letters that we had not done yesterday. Here is what she demonstrated so far:

Letters she identified:C,O,L,Y,B,V,G,E,F,N,A,P,S,Q,W
Letters she needed help with:T,J,D,X,H,R,K,I,Z
Letters left to do:M,U

She was so great this morning. We did the letters this morning while she was on the swing. I am wondering if she thinks it is fun and not work! I am totally fine with that because learning should be fun, right?

So proud of her!

Funny when she went to Kelly's [her regular K4 classroom - Addie goes to school a half hour earlier than the other kids to get individual work done, avoiding pull outs] this morning she had the "church giggles" big time! We just smiled! I do not know what brought it on? It was very catchy though! Have a great weekend!


My husband's comment to me about this update was that he loves that Addie is so proud and thrilled with herself that she gets the uncontrollable giggles. We have seen this happen with various victories here and can attest to its catchiness.

Cheers!

Thursday, March 26, 2009

O, L, Y, B, V, G, E, F, N

Addie's teacher held up cards with each of those letters on them this morning. My sparkly girl lobbed back the appropriate ASL sign for each one without hesitation.

I knew it. I am really going to miss her when she moves out.

Monday, March 23, 2009

Excuse Me


The heat and color in my cheeks rose high early Saturday evening. My head ducked in reflexive shame, while an embarrassed smirk fought to be free. But unlike most embarrassing moments - where you do everything in your power to forget them, to tamp the memory down into a place it can't get air - this one, this moment I have happily and frequently relished for 3 days now.

After spending nearly the entire day outside Saturday and then dropping Cate off at a slumber party, Michael and I were ravenous. Addie was filthy from her outdoor adventures, but we were hungry enough to just wipe down the visible dirt, change her clothes, and head out for dinner. It is a rare thing that we take just Addie out for dinner. I'm not sure it's conscious, but we tend to do breakfast out more than dinner, so when we do, it's usually all 4 of us.

We chose a restaurant owned by the family of a boy in her adaptive swim class - The Apollo on Brady, for you locals. It is a greek place - order at the counter and then wait at the cool stone tables for your huge portions of delicious food to arrive.

Addie was still squirrelly from all the fresh air. And waiting is not a strong point for her. We pulled out the usual diversions, hoping to distract her from impatience. Michael handed her ice cubes to munch, we pointed to the really arty ceiling, to the people passing outside. We tried a signing game and a song.

Suddenly, a loud burping sound. Looking at Addie and glancing around, we didn't think anyone tuned in - there are few textiles in the restaurant, so it's quite noisy. We figured it was drowned out and so let it go. Too late. Addie caught our minor anxiety about it. We heard it again.

I glanced to the table next to us. A young man waiting for his take out order was looking right at me, grinning. That's when my color rose, my head ducked. I looked back at him, intending to offer non-verbal apologies with my eyes, but his attention was fixed on Addie now. At that exact point there was a momentary lull in the noise of the restaurant, just brief enough to highlight a single sound - you guessed it, the burp again. Addie and the take out man were eye to eye, snickering the same reserved, knowing and somehow conspiratorial laugh.

Addie did not actually have gas. She used one of her favorite buttons on her communication device to entertain herself and her take out friend while we waited for dinner. Take out man was not unaware of the presence of assistive technology.

Watching Addie and her friend make the most of it, overlooking the small computer on the table, you would have never known it was a button being pushed instead of an actual belch.

I have all but forgotten the minor parental shame - it's replaced by utter delight and pride - yes, I am proud that Addie can initiate crude humor to amuse strangers.

There is another gassy sound file on her device - gas that emanates from another, more southern region of the human body. I will keep you posted.

Thursday, March 19, 2009

2009 Midwest RTS Family Reunion

A few pictoral highlights from our annual gathering in Wisconsin Dells with Midwestern families impacted by Rubinstein-Taybi Syndrome.

Addie on the frog slide


Caden taking my photo


Sister love


Erika chillin' in the hot tub


Kayla sandwich with McKenna and Cate bread


McKenna Kayla and Addie


Jenny and Michael


Tucker and Addie stealing a hand-hold


Will and Max


Corey and Addie watching Signing Time


Annual Troy Jam with Sheridon on drums, Blaise on guitar and Caden on Groupie


Smiley Sheridon


Eric entertaining with bottle blowing music


As much of the group that would fit in the frame (not including the 20 or so behind cameras or those that hadn't yet joined us)


My own experience at these reunions has changed quite a bit over the 4 years we've taken part. It never felt as much like family as it did this year to me, never as much like a real celebration. Cheers to the kids that bring us together. Cheers to the parents, grandparents and siblings that love those kids.

Thursday, March 5, 2009

No Talking During the Movie (right)

I found this video in my camcorder, never downloaded. People have asked for some clips of Addie talking. I don't have many because generally if she's talking to us...we're listening and not capturing - still novel, you know.

This is from a day or two after Christmas. Addie had just chosen the movie Happy Feet with a gift certificate from Aunt Sharon. She was excited about the dvd, but missed school and her routine once the festivities died down.

It's hard to hear what she is saying with the device - speaker is pointed the other direction and my own loud voice will ispire you to turn the volume down - but she's going through her teacher's names and pictures. In her pining for school she decides to take a crack at boredom by asking me if we can go somewhere. When that doesn't pan out for her (it was about 7pm then), she looks towards the bathroom considering the consolation bath I offered instead. Ultimately, she decides she wants to continue watching the DVD, with some additional entertainment, please. Just before the video ends, she says "Let's rock out." This is a request for me to sing to her. The camera had to be turned off if that was to happen.

And I'm sure it did. She has a page of songs, some with actions, some in Chinese, some in sign. When she hits them, I behave like the trained monkey I have come to be, and perform at her whim. She likes hitting the buttons in rapid succession to see how quickly I can shift from the Hokey Pokey to a lullaby in Mandarin. Funny girl.

Just a little snippet of chit chat for you (please pardon my Midwestern accent...it's so clunky).
video