Wednesday, September 14, 2011

Fighting for the Unknown

The autism support group I attend started up again the other night, and there were a few new people there.

One immediately captured my attention. There was something magnetic about her. She was big both physically (very tall) and in personality as well. Apparently she just turned 40 but looked 10 years younger...yet when she spoke, she seemed mature beyond her years. Her son was diagnosed with autism six months ago at age 2. Yet the depth of knowledge she'd already collected about autism, local therapists, treatments options and educational approaches made her come off like a veteran. She exuded confidence, assertiveness and optimism. I wanted to stand close to her just to see if some of it would rub off on me.

In the parking lot after the meeting she, I and another autism mom stood talking. She had told us what it was like to witness her son drift away literally in front of her eyes...to go from saying words and flirting with strangers as a one-year-old to being completely non-verbal, with a vacant look in his eyes. The story sent chills through me. She talked about how he was responding well to therapy, though, and how she was willing to fight tooth and nail to get her son into the best possible school in the area.

"You never know," the other woman with us said. "Some kids even lose their diagnosis."

"That's my goal," this new mom answered quickly and firmly.

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.

3 comments:

Colleen said...

Deb, I work with six of these wonderful kids who are aged 14 to 21. They have much to contribute to the world! Only two of the six have parents involved the rest are foster kids which makes me sad. Hang in there and keep fighting!

K- floortime lite mama said...

Loved your post
and OMG how often have I been in that exact same situation
I do exactly what you did

Deb said...

Colleen - thanks for all that you do, giving back to these kids! I so appeciate those who give of their time to help people with special needs.

Floortime-lite mama - thanks! Can I tell you again how much reading your blog warms my heart? Some day I would like to talk to you about Floortime...I'm sure you could give me some pointers!