Sunday, January 20, 2008

Recycle, Reuse ok, but Reduce?

I just cannot reduce when it comes to words. It's a vice, I know, but there are many worse. And it's not even part of my addiction that all my words be received, just that I arrange them and put them out. That seems to satisfy the monster within.

I have been asked to recycle a few batches. Put them out again, if you will. Here is an answer to one such request. Awe, man. Rerun!

There is an online community of families around the world affected by Rubinstein-Taybi Syndrome, just as there is for other things that bring people together. This list serve is a place for Q&A, to exchange experiences, to ask for and offer support. It's also a goldmine of truth, tears and information. Just like any family is, I guess.

One witty, experienced, sage mother posted about a particular milestone that her son with RTS had reached at the age of 18. That milestone was the classic "consider bringing along tools to cover up a rule infraction while breaking said rule" milestone in all the child development books. OK, so it's not there. But not much of the truly amazing things our kids do/learn/accomplish is in those books. Our kids have varying degrees of delays, but all have cognitive differences. So this was big. This mother caught him in the act, but could not tamp down her pride at the planning and prescience he demonstrated by bringing a broom along with him sweep away the evidence. She told this story in a tone a fulfilled mother takes when telling that her baby is now a toddler, that this child just said this amazing thing, that that child of mine just made supreme court, that this other one is going to state for Academic know, that sheer, simple "can't see before or after this and don't want to" mother-pride.

It made me think of my own experience with that feeling recently. I had wanted to scream this victory from my front porch, but thought it took a particular kind of audience to appreciate it. And it does - an audience that can handle poopy talk and an audience that embraces accomplishment of a different kind. Here is what I shared with my Rubinstein-Taybi Syndrome list/serve family, some of whom have suggested I also share it here (you'll appreciate the lack of accompanying photos):

Addie poops in the bath. I'm not asking if anyone else's child does this, I'm just trusting that it happens and we don't really talk about it. We were just excited about things happening in the right room. OK, anyone who cannot handle where this is going, please hit delete now.

Anyway, the warm water, the joy of being in her element (I mean that literally), it all contributes to some very relaxed bowels. Which leads to some very anti-relaxed parents. Once you have a sighting, you've got to grab her out of the tub, dispose of the unwanted intruder(s), scrub and bleach the tub and all the toys in it, then put the little she-devil back in to re-cleanse and disinfect. You know. It's just not a joy. But she gets 2 baths from one, so I guess it's a joy for someone...

Her dad and I decided she could understand that this was not a good thing. So we started using consistent and vehement language: Addie, no. No poop in the tub, it goes in a diaper or better yet, in the toilet. And we would try to toss it in the toilet and get that propaganda done if we weren't too peeved. But we both always said the same thing and our 8 year old would parrot us when she was the discovery person. We thought being relentless about the message was a start. And we were right. And Addie had her own ideas of what a start is.

So very recently and a few times since, this scenario changed a bit. One day I'd just washed her hair and returned to the kitchen to do kitchen things - the bathroom is directly off of the kitchen and I can hear every muscle move, every breath from her while I'm in there. She likes to sort of twirl in the tub, she's on her back and uses her feet to propel her in a very rapid circle around the tub. Spinning, oh how she's addicted in every form. That sound is as familiar to me as the arch of her eyebrows. But suddenly it grew silent. Silence is never a good thing with her. I know you can relate. I stepped back in the bathroom.

She was looking at me - sort of unusual, there are so many things that trump me about a bath, that I feel more tolerated than noticed while I'm in with her. She stared. I asked why she wasn't doing her spin thing. Still the glare. Then she stood up. At which I freaked "No standing in the tub, that's dangerous!" But she continued. She looked down. But I was distracted by the thought of her falling. She took one hand off the edge of the tub and I felt like I could faint from premonition of a cracked open head. Finally, she pulled out the rare and huge guns for me. She pointed. This kid never points. She got my attention. She pointed down. To a pile of poop. Outside the tub on the bathroom floor.

She wanted me to know that she'd followed the rule we'd ranted at her. No poop in the tub. Well, there wasn't any. It was in a neat, gathered pile. Outside the tub. Just like I'd asked. I could not have been more jubilant. Truly, it was a big check mark in the W column. But it's a victory that's been hard to share, you know. So you'll indulge me for taking this opportunity, I hope.

Truth be told, it made me take stock of all the pat phrases I use with her, wondering if I could jack them up a bit to get more out of her clever little interpretations.

So I get you, Carla. Brag alerts aren't just about milestones in the book of how kids grow. They can happen anytime, anywhere, with a broom or a steaming pile of you know what... Here's hoping for surprise broomsticks and piles for all of us in 2008!


Maureen said...

Another great post, Terri. Thanks for sharing, and wonderfully done, Addie!

Anonymous said...

Oh Yea! I found myself clapping for Addie through my tears! This is soooooo wonderful! - Gabrielle

Ad's Dad said...

Yeah, it's funny how we can spin things and embrace the minor victories in life. When Addie first started expelling in the tub we had thought of telling everyone that she was finally using the bathroom, but just had horrendous aim!

angie said...

I love this post!! Yes, I am a parent that delights at talking about poop??? OK, maybe delight is not the right word, but as a fellow RTS parent I understand how at times it's just good when they poop at matter where it is:). I just read your comment that you left on my blog a long time ago. Thanks for your comment. It truly is a small world. I am enjoying reading your blog. Addie is beautiful...poop and all!