What does one do when one is trapped in a prison from which there is no escape? When that prison is one's own body? And what does one do when observing from the outside, seeing one's own child as that prisoner, with a body that won't cooperate?
What I've been seeing with Henry is a mind that wants so very badly to explore his world and do things. But that mind is inside a body that is increasing in strength and coordination so agonizingly slowly. It's frustrating for me because I want him to experience the freedom of jumping, running, and exploring on his own and it must be frustrating for him because he sees what he wants just out of reach and it's hard to get there.
With what I know of the concept of low muscle tone with regard to childhood development as well as the principles of strength from my own weight-lifting endeavors, muscular strength and coordination isn't just about physical force. The central nervous system plays a very large role in the effect of physical strength; sending the right signals to the muscles has as much of a role in strength as the mass of the muscle itself, if not more.
This is why I may not be a large, muscular person, but can lift heavy objects that might otherwise seem out of the boundaries for an average guy my size. Why I can out-lift some of the guys at the gym who are physically larger than me. My nervous system fires more efficiently, and I also use leverage to my advantage. It's why I can lift a 250 pound friend off of the ground, as long as I use leverage and center of gravity in combination with brute strength.
Henry's lack of physical strength obviously isn't because he's not benching enough or doing enough deadlifts. It's part of the effects of delayed neurological development. But we can see that he desperately wants to stand, walk, crawl, and climb. He had wanted to crawl from about the same time as "normal" kids begin crawling. His form was that of "swimming" on a solid surface -- he instinctively knew what to do, but lacked the strength to actually place his limbs underneath himself to push himself along.
Months later, with consistent practice and placing him in that position, he's effectively army-crawling everywhere now. And he's beginning to show signs of spatial relationships, figuring out that if the things he wants are up high, he need to reach up to a nearby surface and haul himself up higher to reach them.
And that takes strength and balance that he doesn't have yet.
He's also beginning to show signs of trying to climb up onto the couch, but hasn't quite figured out how to get a foothold on the space between the couch and the cushions. He's slowly getting there, though, although it's tough to reconcile some feelings of envy on occasion when seeing other kids his age who are already flying all over the place on their own power and have been for months.
I know it's not fair to anyone to compare, and also inappropriate to do so. Special-needs kids are even more individual and unique because nobody can predict what their needs actually are, and how to provide them. It's all an improvisational game that needs constant course corrections outside of the "standard rules of engagement."
So while I continue to coach and train the boy on his own merits, and celebrate his accomplishments with as much pomp and circumstance as I have in me, I do have occasion to look wistfully at times at other parents and kids who aren't seemingly experiencing delays and difficulties. At least, not apparently on the surface anyway. Those moments are fleeting, though, because a brief little babble or giggle or a look of abject fascination crosses that kid's face and snaps me out of that "what if" world and back into his.
And I remember that this isn't a trap. It's a maze. We just need to figure out the path.
