Watching and Waiting

We watch Aaron closely, every moment, and take great pleasure in what seem to be iotas of progress.

Mostly, these moments come when he demonstrates strong comprehension in some way that surprises us.

This morning he was standing, staring at the TV, face near the glass, while he and his sister watched a few minutes of Sesame Street. From the kitchen I called out, "Aaron, please sit down." He backed up three steps and sat down, but never once looked at me.

A few days ago I was holding him on my lap in a field at the Morris Aboretum. I looked at him directly, and did not shift my head nor my eyes. I said one word: "Sky." Instantly his head shot back as he looked upward.

These moments occur regularly. They are our lifeline, our cause for hope. They strengthen our gut belief that there is a smart little boy inside that wobbly, mostly silent body.

Yet his inability to communicate is frustrating for him and us. This morning I took him out of his high chair when I thought he was finished eating breakfast and he started screaming. I was left guessing as to what was wrong; I'm still not sure.

So we watch and we wait. We watch for morsels of progress and wait for greater breakthroughs. We watch for demonstrations of comprehension and wait for him to give voice to his levels of understanding.

I have never found it so hard to be patient.

This blog is devoted to Aaron, our son, now 2 years old.

Aaron is developmentally delayed and we are now in the process of trying to learn why.

There may be no 'why.'

Aaron loves bouncing and tickling and playing with his big sister. He has discovered board books and petting the dog. He pushes toy cars around and enjoys playing in sand. When I come home from work, his hug stops time.

And he wobbles when he walks, falls alot, doesn't speak a word. He battles to control his emotions and often sleeps fitfully. The Experts say he is at least 9 months delayed in every developmental area.

Last month we met with one Expert, a developmental pediatrician whose is known and respected in his field. He brought up a range of possibilities that left us distraught, devastated. He failed to balance the discussion with a more optimistic possible outcome -- that the delays could be just delays, that might be overcome with early intervention.

That early intervention has begun. Aaron now sees two wonderful therapists, a physical therapist and an occupational therapist who specializes in sensory integration issues. They seem to understand him better than the Experts.

But the Experts want tests and more tests. Neurological, genetic. Blood work and MRIs. And we've been warned that if -- in the best case -- the tests reveal nothing, they will propose more testing.

Aaron's mom and I are in a new world with all this, a confusing world. Our emotions are unsteady, pegged in large part by what kind of day Aaron himself is having.

So I start this blog in part to try to sort through the confusion, as we begin a journey toward understanding Aaron.