Ohhhhh, I thought.
Silently and simultaneously I was thinking many things. I was thinking about those early days after the numbness wears off, somewhere before reality and acceptance sink in there is this fire inside you to set everything right. Everything you read fuels it. Everything everyone tells you fuels it. You have this voice echoing in your mind whispering Early intervention is key -- maybe if I tried this therapy -- How many hours can we squeeze in every week? -- If I can just get him to talk/make eye contact/make friends it will all be okay -- Maybe if I try this doctor -- Maybe if I try this diet -- What about what that person said? -- What about that book? -- What about....what about...what about...
As we stood out in this parking lot in the dark I started to clear my throat. I was actually going to get up on my pulpit, wag my finger and say something like, "He may lose his diagnosis, but you have to learn to accept him for who he is if that doesn't happen." Very quickly I realized how tremendously condescending and self-righteous I was going to sound. These are not lessons that can be hammered at you by anyone, even a well-meaning person who's been down a similar path. These are lessons that are learned. They take time and usually involve a tremendous amount of pain. I'm still learning.
I didn't want to preach, I realized. I just worried about the fall. I worried about that possible moment when, after 2 or 3 years of dedicating life to helping her son beat autism, she learned he was very much still on the spectrum.
I thought about that, but didn't say a word, because in the same moment I remembered this: there is something very vital about that gung-ho phase I think many parents of special needs children enter not long after they receive a diagnosis. It's called hope. Planning treatments, going to therapy, learning more about how to help your child keeps your mind focused and present. Feeling as if you are doing something is eons better than feeling you are lost and powerless.
So many of us feel so frustrated when we hear our child has a disability, and no one can really tell us what the prognosis will be. We hate the unknowns. We hate the what ifs. But maybe they are a gift. The question marks can either send us on a downward spiral as we fret about our lack of control, or spur us to keep trying, keep working, to not ever, ever give up on our child because you just don't know what the future holds.
I HAVE known kids who have lost their diagnosis. One of their moms actually had attended the very support group we'd just left.
"You never know," I nodded my head in agreement. I could see the smile and resolve in her eyes. We said our goodbyes and headed out into the night, looking forward to the next time we would all meet up again.