In the immortal words of Tom Petty, 'The waiting is the hardest part.'
When a child is diagnosed with autism at 12 months, 24 months, 4 years, or 10 years, parents are faced with a sudden and overwhelming ambiguous future. A flurry of questions ensue about what will this child be able to do in life. Will he play sports? Will she get married? Will he drive a car? Will she go to the prom?
A whole life flashes in front of a parent's eyes with no assurances about anything. And so we wait. We wait to see how life unfolds for this child. And sometimes, that's the hardest part.
When a child is diagnosed with autism there is a DIAGNOSIS, but there is no PROGNOSIS. Someone can tell you this child has autism, but no one can tell you what this child will do in life. The prognosis is different for everyone. A child who, at three years, has a very severe form of autism might provoke an impression of a grim outlook. Yet, no one, not one single person can tell you what this child will be like as an adult. What happens at three doesn't always happen at 23. Children, yes even those with autism, develop and grow and change and mature--and often it is in ways that will surprise you.
Just yesterday, as we drove our boys up to a local hospital for an appointment, my husband turned to me and said, "Do you remember when Ewan couldn't use the elevator? When we would have to run past the elevators like a strategically placed military strike team?" In a flash, I was taken back 4 years ago to the same hospital seeing my husband hold our son with a blanket over his head as we ran through the building past every set of elevators to the stairs. I can remember the crowds of people looking at us as if we were holding a timebomb (and trust me, we were). All over an elevator.
Today, my son walks in the elevator much like anyone else does, pushes the button and patiently waits for it to move. But 4 years ago, even SEEING an elevator elicited a meltdown of Chernobyl like proportions. Oh how far we've come. Yet when my son was that age I couldn't see the day when we could actually use an elevator. I couldn't imagine how we would get from here to there. I couldn't see the day when instead of running from the elevator, we would take that step into one.
The future is full of possibility though, with an entire world at your feet. All it takes is the first step. As Abraham Lincoln said, "The best thing about the future is that it comes only one day at a time." Four years ago I couldn't imagine the day we'd use an elevator and I wonder what surprises the next four years of life will bring us.
It's a leap of faith because the future is so uncertain. It's uncertain for everyone to be sure yet as soon as the doctor says, 'This is autism', these twin feelings of doubt and possibility envelope every thought and action. It's a leap of faith to believe that the hours and hours of therapy will actually help this child. It's a leap of faith to believe that the days and years of education will help connect the dots in a way this child will understand. It's a leap of faith to believe that this child's developmental path will lead to the life he reaches out for. The statement 'he walks to the beat of his own drum' is never more true than when speaking about the child with autism--and we wonder every day if we are playing the right tune.
Today I sit in awe and wonder as I think about my son. How far he has come and how far he has to go. Every single day he surprises me and inspires me to believe in the impossible. Every single day he walks beyond the bounds of possibility driven by some inner momentum. Driven by the sound of his own drum. A sound I cannot always hear but am always listening for.