“Since the fall, I’ve been lost at sea
Walking in my sleep
Dreamin’ of the major leagues…
And who’s been calling my name?
Is it me, or is it getting darker in this town?
You know, you know, we’re all just castaways;
We’re cold and wet and naked and surrounded by the waves;
Something in the way you
Hold on, hold on.
Waiting for the land to come again…”
Oh, my little boo. Now you’re not attacking as much (yesterday not at all) but the meds have taken a toll they tell me is temporary – this stoned look about you, lethargic and “out of it.” What trade have I made? Late at night I lie in bed and think I am making tremendous decisions about this precious human being and I think who the hell am I to try this and not that, to demand and declare, to push through only to question everything even as I shoulder-shove the scared aside…
I feel lost at sea.
I am on the defense, though no one is pointing any fingers — at least not to my face. I have tried alternative therapies I consider innocuous: rhythmic entrainment therapy, dietary changes, Reiki…I have sailed this ocean of uncertainty that is autism and I am navigating wave-filled waters – some days with intelligence and determination, other days with the barest inkling of how to survive the next 24 hours.
I am anxious. There are so many changes in my life right now. I question every move, every motive, every step. The road not taken loses all its significance except in hindsight. Am I even making any sense? I’m tired. In how many posts have I waved the flag of exhaustion? Too many, I’m sure. Everybody’s tired. I know.
On Friday I flew at hyper-speed and got shit done: To the insurance company office the moment they opened, forms all filled out, appeal ready, supporting documents in hand. They handed me something that had to be completed by Jonah’s doc, so I ran to the car in the pouring rain and headed straight there. Waited while he saw his patient and filled out the form. Drive directly – do not pass go – back to the insurance company to add my son to my insurance plan; now he’ll have both private and the disability Medicaid waiver. Then to the Center for the Disabled to make appointments to see a neurologist and a child psychiatrist. Learned I needed more forms. Went home to make copies. They called me before I could even return, telling me I could bring Jonah to see a neurologist at 2:30pm that same day. Miraculous. So I cram food in my mouth and my mom helps me make more copies of everything they need and I call the school and we pick up Jonah and head back to the Center for the neurologist appointment.
Jonah attacked the nurse when she took his blood pressure. I guess they’re used to that kind of thing at the Center for the Disabled because she took it in stride. The neurologist was a kind doc, letting Jonah sit on the floor in the doorway, asking him questions in a gentle voice, looking through the information I’d provided. She wants Jonah to have an EEG at Albany Med to take a look at his brain waves. Then we can get set up to see the Center’s child psychiatrist.
It’s all a long twisted road full of doctors and insurance companies and red tape and waiting lists for help (respite services are starting to trickle in, thank God) and uncertainty and – sometimes – shining rays of hope. Tomorrow is a long day. I will be exhibiting at an adoption conference at the Marriott after work. I do like the adoption conferences; since I’m an adoptee I have a vested interest in these folk and their search to find a child. (I’d give them Jonah, I’ve joked to myself, but they’d only bring him back).
Today I’m holding fast to the hope. This morning on our ride to the train there was glorious light breaking through the slate-gray clouds, shining all over the cliffs of Thatcher Park…the mountain trees all rust and sunflower-yellow.
I practically breathed it in, storing its beauty inside me.
I’ll need it to see us through. “Sometimes the light’s all shining on me” ~ The Grateful Dead