Sunday, October 23, 2011

10.23.11 A Body in Space


A different perspective of the bathtub

There is a philosophical idea that we geeky, architectural types like to think about when we are not busy designing our way out of debt and it goes something like this: We humans are very used to thinking of ourselves as naturally correct and go around our universe using ourselves to "measure-up" our enviroment. In other words, the Leaning Tower of Pisa wouldn't be considered 'leaning' if we all walked around leaning too, nor would it be nearly as interesting! On an even more abstract level the idea is that we actually project our idea of ourselves onto things and into the spaces of our environment to get information and understand them. Now, I'll stop here with all of this and get to my point...

I wonder if being upright in the world is ever so slightly over-rated. Granted, there are distinct advantages to being upright, feet to the floor, faces to the sun like the pansies in the garden, but it is hard for me to fairly compare any other position's advantages, because I usually don't spend much time say...upsidedown. From a different vantage point, who is to say that the underside of my coffee table isn't the beautiful landscape I see in the stains that I find there, or that the ceiling fixture in the kitchen that I've been wanting to replace is just fine from the floor. Give me a glass of wine and I would never have to redecorate from down here on the floor.

I was watching Maxwell hanging upside down this week. He had gotten on top of the little round table in the playroom and was doing breakdance-style spins on it, taking a breather every few spins to hang his head backwards over the edge. I started to think about what things would look like if they measured-up to his 'projections' of himself into his surroundings. If I could design a world that fit his understanding of himself, what would that look like? Do the things that are made to "make sense" to upright people have meaningful purpose for Max the way they do for us? The legs of a chair are more like the poles of a tent, the front door is more like a hole in the wall that appears every so often, and the ceiling is canvas of patterns and shapes...

This week Max is scheduled to have a procedure that requires chemicals to be injected into his legs with the aim of interrupting the mis-guided messages being sent from Max's injured brain to his confused muscles. It will provide a window of time in which we can dive in and stretch out Max's muscles and head-off a more invasive surgical correction. Another peripheral advantage is that Max will have a chance to experience the world from a more upright position and hopefully feel comfortable enough to stay there! Where we go from there, we have to see...

Max continuously offers up opportunities to ponder a far more surreal and perhaps interesting microcosm of a universe, and with any luck, I may just have to look a little harder. I may just not be doing it from the floor as much!

Monday, October 17, 2011

10.12.11 A Parent's Concerns


It's all relative isn't it? What makes a parent concerned that is. In the pediatrican's office you are often asked if you have any concerns. In a parent-teacher conference you are always asked if you have any concerns. Even in a place like a children's museum or a water park, you are asked if you have any concerns. As a parent in general, concern is par for the course, it is part of what makes being a parent such a full-time occupation, whether you are with your kids every day or if you are a thousand miles away on a business trip. But when you are the mom or dad to a special needs child, particularly one with multiple challenges, the question "Do you have any concerns?" is kind of like asking  my six-year old daughter if she wants a pony or asking a fish if it likes to swim or asking my husband if he would like to sleep in on Sat. morning....Right.

So, when I go into a neurologist's office, or an orthopedic surgeon's office, or a speech therapist's office, and fill out that pile of paperwork that feels like an application for a security-clearance government job, (while the receptionist looks at you with that, "I'm so sorry I have to ask you to do this" look), and I get to the question, "Do you have any concerns you would like to discuss with the Doctor?", I never fail to to go through the same ridiculous circuit of emotional responses. Usually I start with indredulous indignation which goes something like this: "Why the heck would I be sitting in a neurologist's office in the middle of the day with my stressed out child if I DIDN'T have concerns.....Do you think that I LIKE looking at the crappy magazines and balloon wallpaper? Does anybody come here because they are concern-FREE?" Then it usually only takes me about 30 seconds to do a complete flip-flop which verges on the edge of panic and goes something like this: "If I don't write down ALL of my concerns this very second, then it is possible that this over-scheduled, too-busy-to-read-between-the-lines doctor might not have ALL the information they need to make the best determination about my child's health and therefore his/her entire future...better to write it down and hurry, hurry, hurry!" It is ridiculous, yes. I'm also pretty sure it is totally normal when you come to live with and love a round peg in a vast world of square holes....

The photo above was taken about a year and half ago when Max was still able to fit into a "bouncy seat" that he loved to play in. He was a master at manipulating his body in space and preforming aerial manuvers in this seat, that if my typical children were to try I'd have fainted. Visitors coming to the house and watching Maxwell in his element would be at first horrified and then amazed by his awareness of his body and ability to avoid ever crashing into the floor or falling out of the seat. He could feel his hair on the floor and would "measure" the distance he could bounce down before hitting his head on the floor. Max has memorized the way things feel and the distance between objects and the position of furniture and walls...playing in this seat was cake for him as long as he developed the body strength to do it over and over and over again....and he did. (His spatial mapping skills are still stunning to me.) As usual, everyone would ask the same question: "Aren't you concerned?" And in this instance I could truthfully say without a single back-talking thought badgering my conscious, "Nope. I'm not."