Thursday, September 22, 2016

The Power of Not Knowing

The day Ethan was diagnosed with autism, I had a brief urge to -- despite her kind, warm, thoughtful demeanor -- slap the developmental pediatrician across the face.

That sounds awful, I know. But until then, perhaps, I didn't know how much of control freak I truly was. I wanted, I desperately needed to be in control, and the thing was, she wouldn't tell me how this was all going to turn out.

I wanted to know, immediately: Would he talk more? Become conversational? Attend regular classes in school? Make friends? Find a job? Go to college? Get married?

And of course she couldn't tell me that. She could only speak in careful, measured terms about there being no way to know this early on what the future held, to bring him back in a year to evaluate, to get him started on therapies, and that he had some good early skills that kept him, at that time, out of the "severely autistic" category.

This infuriated me. I felt as if I was being given platitudes, when as I look back seven years later I see it was simple truth. Every child is different. Every strain of autism is different. Everyone responds differently to therapy. Some kids regress and others soar ahead. She didn't really know, and giving me any sort of detailed prediction would have been doing us all a disservice.

What every parent wants when they get a special needs diagnosis for their child is to know that this is all going to somehow work out.

What every parent wants is hope. I was going to title this "The Power of Hope," but realized that wasn't completely accurate. Yes, having no hope is a tragedy. One of the worst things you can do is rip hope away from a parent early on in a diagnosis.

But blind hope in these situations can be unhelpful as well. Hope with disregard to any facts can lead to false hope and living in denial. And desperate hope can lead down the path of "I must do everything in my power to cure my child."

No...hope isn't quite it. What I've found over time (and am learning every day, in all sorts of circumstances that have nothing to do with Ethan) is that there is actually power in not knowing how things are going to turn out. There is power in maybe.

Maybe my child isn't a typical kid...but maybe he can make great strides and surprise us.

Maybe my child will have trouble making friends...but maybe with effort we can help him learn to better relate to others and develop relationships.

Maybe my child will go to college...maybe he'll do something else completely amazing.

Maybe he won't amaze us but he'll be happy, and we'll learn more about ourselves than we ever thought possible. Maybe we'll discover more deeply an unconditional love not based on what our child ever accomplishes or doesn't accomplish.

Maybe we'll try this therapy or that plan and it will help...maybe there's something else. Maybe there's no one answer in this autism puzzle, but thousands upon thousands.

Maybe it's okay to admit we don't know what's going to happen, because really, whether our child has special needs or not, we were never fully in control anyway.

What I would whisper to my self of seven years ago, sitting in the hall outside Dr. Milanese's office as she flipped through papers and spoke in clinical terms, is to not give in to rage or desperation. By avoiding prognostication she was not playing a game or toying with me. She was admitting she is a doctor, yes, but human as well, and that autism is in no way a condition of absolutes, that it has never been about concrete numbers akin to cancer survival rates.

I would tell myself, I still tell myself, all the time, that to truly live you must live in now rather than taking up residence in the past or future.

I would tell parents who are new to this that, yes, unbelievably, there is power in not knowing. Not knowing relinquishes you from the weight of fixing everything. Not knowing allows you to simultaneously dream and grieve. Not knowing how this is all going to turn out forces you almost by default back into the present. The future is too murky to dabble in for long.

When their child is older, when they are years into a diagnosis and therapies and school and successes and dreams still not reached, this will all become more clear. There will be a time to plan; to fully accept. But the time is not in the doctor's office, five minutes into this whole thing.

No. That's the time to let go.

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