People ask, “what is the hardest part about having a child with autism.” And the truth is, the hardest part about having a child with autism; is having a child with autism.
Because it is all hard. In different ways and at different times. I cannot pinpoint one thing. One single piece of this journey. One moment of pain or struggle. One symptom. One behavior. One thing that we have lost along the way. One person we have lost along the way. One hurtful or insensitive thing said by someone we love. One way that we have changed and adapted our life.
No, I cannot pinpoint the hardest moment for you. Because in a way all of the hard moments and behaviors and people have become part of one big jumbled memory.
Autism is not neatly organized into clear and consistent traits and behaviors. It is not always easy to recognize or label. Autism is not the same from day to day. It may not look the same or sound the same or feel the same. And the world, our world, where autism lives is not the same every day either. Autism is tiny little pieces of a million different things. And the pieces are constantly changing. Things that fit with ease one day may not fit the next day. And, pieces that you thought may never fit, all of the sudden fit together perfectly.
The fit is unpredictable. Because the pieces are unpredictable. Because the journey is unpredictable. Because autism is unpredictable.
And that is hard in a way that I never understood before. To look at someone who lived inside of me. To know him so deeply in one moment. And in the next moment to feel so far away from him. To feel like a visitor in his world. To even begin to accept the idea that he and I live in different worlds.
And I know how difficult it must be for you to imagine what this feels like.
Pretend I give you a gift. It is the most precious and amazing gift you have ever been given. You love and cherish it in ways you never imagined possible. The gift becomes a part of your life; a part of you.
The gift is a blanket.
Beautiful and soft and welcoming and ever-ready to invite you into its warmth. It brings you comfort and safety. You wrap up inside of it and lose yourself a little. You begin to forget about anything that happened before the blanket. And just as you wrap up and start to live inside of the comfort of the blanket; it changes.
Now the gift is a picture.
Still beautiful, but no longer soft and welcoming. All of the sudden being snuggled up inside of the gift feels un-natural. Un-welcome. And because the gift has changed; you change. You interact with it differently. You hang it on the wall. You admire the way it ties everything around it together. As if maybe it was always intended to be that way. You can no longer wrap up inside of it, so you sit near it and admire its strength and beauty. It’s presence. The way it makes everything look different. And just as you can no longer imagine the room without the picture; it changes.
Now the gift is a balloon.
You are overjoyed to interact with the gift again. To hold it in your hands. You carry the balloon around with you everywhere you go. You admire the way it stands tall. The way something knocks it down, and it pops right back up. You see the balloon beginning to lose air. You worry about the balloon. And just as you drop your head in worry, the balloon escapes your grip. It sails up to the tallest corner of the room. And there it stays. Just out of your reach. As you make a plan to rescue the balloon; it changes.
Now the gift is a puzzle.
It takes hours to put the pieces together. Everything must be just so. As you manipulate the pieces you feel a mix of every emotion inside of you. You feel anger and frustration and joy and sadness and exhaustion. You consider quitting. You consider putting the pieces back in the box and storing them away on a shelf. You wonder if you are up for the challenge. But, you push on. And piece by piece the puzzle comes together. It is not easy; because nothing truly wonderful in life ever is. But this is your gift. And when you are given a gift, you just cannot give up on it.
How is it so? How it is that one gift can be all of these things? A warm and cozy blanket. A strong untouchable picture. A light and airy balloon just out of grasp. And, an intricate and complicated puzzle.
The answer is autism. Autism is all of these things and so many more. It is waking up each morning unsure of what we will find. Unsure of what gifts lie ahead of us that day. It is being ready for anything. Rolling with whatever comes our way. It is learning to look at our son with open eyes and a clear mind over and over again each day.
Pretend I give you a gift. The gift is complicated. The gift is unlike any other gift you have ever been given. But it is your gift. Your gift to love and cherish. Your gift to teach the world how to love and cherish it too.
I was given a gift. My son is a gift. And I love him. I love him when he is soft and comforting. I love him when he is strong and rigid. I love him when he is present. I love him when he is withdrawn. I love him when he is messy and complicated.
And maybe that is the real gift. Unconditional love.