As some people out there in gopherland may know, I'm a stay-at-home dad
for a Special Needs child. Little Bronx wouldn't strike you as Special
Needs if you met him casually. In fact, you might realize how smart and
articulate he is. His vocabulary has been noticed and commented upon
since he began speaking. No, he's not Learning Delayed, he's not
retarded. His problems fall into the Social and Emotional arenas, and
are harder to pin down. In fact, they are hard to even define. And, to
date, impossible to diagnose. Everyone who works with him can see it,
but no one can put a name to it. We've seen countless "experts" now,
and everything from autistism to aspergers syndrome, from oppositional
defiance disorder, to sensory integration disorder...all these things
have been thrown at him. None of it sticks. Well, on the one hand,
that can be considered a good thing, right? But, on the other, it's
maddening. Without the knowing, where does one begin to help?
Consider the following:
* He was kicked out of two schools by the time he was six.
* He has no friends. Not just no friends locally, or no friends he sees
often. He has none. His behaviors typically unsettle or even
frighten other kids.
* He's on five different medications, including an anti-psychotic and an
anti-depressive.
* He's only seven years old.
Like a lot of only-children, his demands for attention are excessive. I
don't know what that's all about, really. I mean, I'm with him all day
and all night. How much more attention can I give him? Perhaps it's
compensation for his empty social calendar. Perhaps it's a sign of his
disorder. Perhaps I'm just a grouch.
At any rate, we are a single income family, so that means we live on the
cheap. We have debts, like most people, sure, but by and large we live
frugally and well enough. Being the Original Cheap Yankee, this suits
my natural inclinations anyway. Free and Open Source Software plays
into this nicely, since I don't have software costs, or viruses and such
to worry about. He's been raised on Linux, and is a gaming fan on it
(you should see him playing side-scrollers, and he's a veritable Master
of Tuxpaint), which goes a bit counter to prevailing PC gaming ideas,
but that's not new.
So he has an interest in computers. This week, he's shown an interest
in cooking, which we're encouraging. He made himself scrambled eggs
last night, and bean-and-cheese nachos today. Little things, these are
small little victories. But when you are faced with an intractable,
wide-ranging problem, for which no solution is currently known, ANY
victory, ANY success is mighty. The litany of issues that remain are
still daunting, and, so far, invulnerable to treatment or training;
realistically, they may even be here to stay. That makes no matter,
though, when he sits down to a meal made with his own hands, and feels
that sense of pride that can only be purchased with the coin of
achievement. In a very real sense, his bowl of nachos is a step -- who
knows, maybe a FIRST step on a long, enriching road of creativity and
passion. But I will take a smile on the face of a boy who has known too
few of them in his short time on this Earth, over the self-gratifying
dreams of a proud father. My place in this, both by circumstance, and
by the basic limitations of a man, is to hold him, to help him and to
protect him from a world too vulnerable or ignorant or cruel to care.
And in that, he, his mother, and I -- we're just like everybody else.
