Friday, April 30, 2010

Friday Focus- Roo

Roo, also known as Muffin, T-bird, T-bone, and about seventeen other things that pop out of our mouths at random times... she rocks. Spending so much time with her and Kanga for the past year has really bonded us. I love being her honorary auntie. She loves me too. Except for when I put her down on the table to take her picture when she was perfectly happy being held.

Kanga is half Thai, so Roo is a quarter. (not too shabby.... must insert Adam Sandler Hanukah song reference here because in my head I sing "not too shabby" every. single. time...) Her Kunyai (thai for grandma) is concerned that she might not grow up speaking it, so makes sure to talk to her pretty much exclusively in Thai. It's so much fun to listen to her new words, because sometimes they don't make sense to me because they're toddler babble, and sometimes it's because I don't speak the language. :) She knows little songs and nursery rhymes in Thai and Kanga has sung them often enough that the other kids are starting to pick them up too. It's hilarious to hear. I love listening to Duchess and O'Malley speak Thai to her, and all the kids can now point out Thailand on the world map and yell "ROO'S KUNYAI FROM HERE!!!!!"

Roo's Kunyai cuts hair, and I think this picture will make her happy- it's the first one I've seen where Roo actually looks like she might need a haircut. The silky tresses have taken their time growing in and Kunyai's been frothing at the mouth to attack her grandbaby with the scissors.

She's opened my eyes to a whole lot of things. I didn't know anything about therapy or standers or working with muscles or neurology but it's been easy to learn because I care. Because she is ever so much more than a special needs label. Because she's amazing and I want to do everything I can to help her while she's here. I want her to be challenged and educated and not frustrated, just like any other kid.

I guess in a way it's a tiny bit like having a special diet- people who don't know me well feel so sorry for me that I have to be gluten free. They tell me how they could never do it, and how it must be so hard, and say all kinds of well meaning things that usually annoy me because they just don't get it. Her family has to deal with stuff like that all the time. No, she isn't sitting or crawling or walking yet. Yes, we're working on it. No, we don't really need your pity thanxverymuch. If you've spent any time at all around her you can see that Roo would have no idea what to do with your pity. She has such joy. Such a zest for life. She loves Mickey Mouse and getting thrown up in the air and having people talk to her like the grownup Pink Lady she is, not the baby who needs help. Sure she has challenges to face, but if you have to do it, then yes, of course you can. Maybe it wouldn't be your first choice, but if she was different than she is, she wouldn't be Roo.

The last time I got inspected, the licensing rep noticed her stander in the corner and asked about it. Roo wasn't here that day so I just explained that it was hers and that she was using it for therapy. I got really defensive when he was asking about whether I was equipped to deal with her needs. I know he just needs to know in an advisory capacity, to check for safety and the handicap laws and all that legal stuff, but I didn't want him to think she is hard to care for. It made me mad, a little. She's a kid. I take care of kids. I take care of her. 'Nuff said. Everybody's got something that makes them different, and hey, at least she can eat whatever she wants! Don't assign it more weight than it deserves.

There's a balance for me- I certainly don't want to make her limitations be the biggest thing about her, because she needs to be able to feel normal typical- (a much better word to use. Normal is a dryer setting.) I want to make things as much like everybody else as I can. But then, there are times that just isn't possible- her physical capabilities are just different from the other Pink Ladies. It's kind of a tightrope to walk and I hope that I'm always sensitive to what she and Kanga need.

So, the fabulous ECI ladies come and do therapy, we work with her too, and in the meantime she's just so much stinkin' fun.

She does have front teeth of course, but the fangs are still a lot longer and it totally cracks me up. She looks very vampirish in a lot of her pictures. :)

I really love this picture. She looks like she wants to lunge at me and bite my neck.

She is casserole girl to the extreme, which pleases me deeply. I cook a lot of pasta and stir-fry and stuff that's all mixed together and it takes some kids awhile to get used to it. She shovels it in with both hands and gets incredibly messy. It's very satisfying as a cook to watch somebody enjoy the food you made like this. :)

1 comment:

Angelia Sims said...

She is beautiful inside and out. Her ability to shine has a softening effect on everyone that meets her. Thank you for sharing her story and being such a wonderful friend and caretaker. What a blessing it is for them to have you in their life.
-From a friend of the family