Saturday, December 15, 2007

Taste Another Existence - parts 2 and 3

As stated 2 weeks ago: Brown writes with precision and unsentimental honesty about the shape his family's life has taken around Walker's routines. The writer's willingness to reveal the irony and amusement in parts of this life changed by disability is refreshing.

Parts 2 and 3 finish out the piece and are now available. Click below.

Boy in the Moon

Tuesday, December 4, 2007

More than Swimming Lessons

In the realm of teachers, therapists, doctors - paid professionals in my daughters' lives, I have become a little more discerning (a nice way to say judgmental or skeptical) over the past years. Addie in particular is no easy knot to untie for anyone, including me. But she knows with consistent certainty what she needs from people before she'll deliver the goods: whether the demand is an arm out for a blood pressure check, the right ASL signs, lining up nicely, hitting the right button on a talker, cleaning up a bucket of toys she just dumped, etc. But Addie is keeping her secret combination close and inside. So we guess and guess again.

But a woman we met about 18 months ago never guessed. She didn't try different combinations, she had it down before she even met Addie.

Addie loves the water and always has. This love of water has been documented as a commonality in those with Rubinstein-Taybi Syndrome. She has no fear of water and will play in it regardless of it's container: a pool, beach, bath, bucket of water, dog's dish... Regrettably, she also finds it great fun to drink from all of the above.

Addie started individual adaptive swim classes on Monday nights a year and a half ago. This is when Christine Sparrow, an occupational therapist and swim instructor, came into Addie's life for a half hour each week.

When we resumed swim class this fall, Addie had a really hard time with the lack of freedom. She had spent most of her waking hours this past summer in a zero depth outdoor pool where she practiced her water feats and grew stronger and more bold every day - on her own. We stayed in the vicinity, but tried not to inhibit her with too much watchfulness. The outdoor pool closed Labor Day and swim class started a few weeks later - indoor pool, very loud, and way over her head. Christine still has to hold on to Addie as she cannot swim independently yet. This was so bitter sweet for my little waterbug - happy to be in water, but angry to be at someone else's mercy.

Truly, she was never really at Christine's mercy - there was not a pitying, patronizing, underestimating hint in a single interaction from moment one. Christine offered Addie the great respect of assuming that even though Addie cannot speak and has intellectual differences, that she is capable of understanding, and making her own choices about what others ask her to do.

Addie would cry in the beginning. Cry and fight a bit. But Christine kindly acknowledged Addie's fury and just held on tighter as she moved Addie through the instruction, giving her a chance to respond however she chose to respond to Christine's directions. And how ever Addie did respond was always received as a decision Addie made, even when the response was to ignore the direction. Christine never once looked as though she wondered if Addie was "getting it."

Without my being able to pinpoint the time, Addie gradually concluded that Christine knew what she was talking about; that kicking really does get you to the ball floating away, that blowing bubbles in the water is fun, that putting your eyes under gives a great new perspective of beloved water. Suspicion in Addie grew - suspicion that the person holding on to her actually wanted her to be free in the water. This became a certainty germinated by Christine's unwavering faith that Addie will in fact, swim on her own one day.

Addie chooses to do nearly every last thing Christine asks her to do at this point. I'd love to have some of Addie's underestimators (among them therapists, doctors, teachers, even family) come and observe this half hour on Monday nights. I would invite the ones who let their hunch that Addie either cannot understand their directions or is not capable of following them shape their interactions with her. What these well-intentioned, but bumbling few seem to be unaware of is that their doubt can be felt, even by Addie - particularly by Addie. They are led by the down-side of uncertainty. Christine is led by the up-side of it. Addie feels this faith and acts on it.

Monday night was the final class of the semester. There are other kids and young adults in the adaptive swim class at the same time, but each learner has their own instructor. Maki, a bold fellow a few years older than Addie zipped around the pool, his instructor following behind. Maki has Down Syndrome, though with a pride thinly disguised as amused exasperation, his father says he has "Up Syndrome." This kid is full of energy and a solid sense of self (read: mischievous). During class this week his swim instructor and Christine talked quietly for a second at the other end of the pool before asking Maki to show Addie how he goes underwater. Maki dipped down with verve and popped up like a Jack in the Box. Addie found it delightful and Maki was clearly glad to show his stuff. Christine then suggested to Addie that she do it for Maki. Without any ado, Addie swiftly complied by putting her head up to her eyebrows under. After popping up, she did not cough and sputter like usual, because Maki hadn't. In fact, she was more concerned that he was as thrilled with her trick as she was with his. Not only had Addie done what the big boy had done, she succeeded in producing the response she wanted - the same giggle she offered Maki was returned to her.

Christine has a patient way of reminding Addie of her power, of her possibilities - a way that is rare, simple and amazingly effective. Or maybe it isn't all that rare, but rather buried under the urge for instant gratification for many of us. We aren't willing to wait for this process, for this faith in another to take root. We want our directions followed "because I said so." But Christine has a different answer to that question we all (including those with intellectual differences) take a moment to ask internally when given direction - "why should I?" Without words, but through consistent, clear demonstration of belief, Christine answers "because you can."

Sunday, December 2, 2007

Taste Another Existence

Part one in a 3 part series by Canadian reporter Ian Brown about his life with son Walker who has CFC Syndrome. Brown writes with precision and unsentimental honesty about the shape his family's life has taken around Walker's routines. The writer's willingness to reveal the irony and amusement in parts of this life changed by disability is refreshing. Be sure to hit the site again the next 2 Saturdays for parts 2 and 3.

The Boy in the Moon

Saturday, December 1, 2007

Silenced by First Snow

The first snow of the year always silences everything. The sky is bright, even at night, but all sounds are muffled as the white accumulates.

We've a rain/snow mix here, but before the rain came a nice covering - enough to play in. Cate spent about 8 hours outside today, which she hasn't done since the free days of summer. Right now she's inside, in the bath, but still giddy from the clear change of season today.

While I was out gathering supplies for a snowed in evening (hot chocolate mix, gingerbread house kit, wine - a low effort evening in, that is), my husband Michael took Addie out in the snow. It didn't last long.

We'd taken her sledding 2 winters ago. Unfortunately on the first descent, she and I got whitewashed with crusty, icy snow as our sled cut sideways into the packed path. She cried for the next hour and refused to sit with anyone on the sled again. We couldn't leave yet, Cate was just 6 years old - prime age for endless hours of trudging up the hill and skidding down it tirelessly. But since then Addie has had a love/hate relationship with winter - she loves cold air and wind - it makes her babble and jibber jabber with gusto - but she despises the proximity to snow.

If the girl's taught us anything though, it's to keep on trying. Michael took her out today. She took her mittens off. He put them back on. She took them off. He put them on, she...well, you know. It was too cold to let her feel the snow for long with bare hands, so they had to come back in.

We mulled it over a bit. Mittens. It would be like me bundling up for some "fun" outside and finalizing the preparations by putting duct tape over my mouth. Addie cannot "speak" with mittens on. She cannot sign with only a thumb and four bound fingers. Whether she's got anything to say or not, having someone bind your power up is probably not something that any of us would gladly comply with.

We'll try and find gloves in her tiny hand size, but I have my doubts about keeping her chunky digits in those. I think the prevailing response to this realization will be that she goes outside in the winter, just as in every other season, with nothing on her hands. And to be honest, I can already foresee that it will also mean that in a subconscious act of solidarity, I will often forget my own gloves.

Stay warm!