Autism Spectrum Disorder: Life as a Puzzle.

Part of my journey as a parent of autism is to put my faith in things I cannot see.
02/16/2017 10:03 am ET Updated Feb 20, 2017

I knew that becoming a parent meant juggling a number of different roles. I am the mom, the planner. The guiding light. I am the ouch-y healer and the bedtime snuggler. I am the confidence booster and the ultimate cheerleader. And because my son is a puzzle; I am also the puzzle master.

When my son was diagnosed with autism spectrum disorder at 2 years old, we began unlocking the complex puzzle that is his brain. We did not know what to do with the pieces. We did not know where to start. We were scared. Scared of the pieces. Scared that the pieces may never fit together.

And, in that moment we could have given up. But we did not. Because the rules of parenting are actually quite simple:

Rule 1: Love your children fiercely. No matter what.

Rule 2: Protect your children and keep them safe. No matter what.

Rule 3: Be what they need you to be. No matter what.

And if my son needed me to be a puzzle master; then that is exactly what I would become.

My precious little boy is so complex. His brain works in a way that leaves me feeling both amazed and terrified at the same time.

He is smart and calculating and strategic in everything that he does. There are no accidents. His actions are intentional. On-purpose.

At age 1, he used to intentionally throw his snack cup on the floor. After watching the cup hit the floor, he would look up at us, gasp, and say “Uh-oh.” In those moments we laughed. We picked up the snack cup and said “Silly boy, it is not an accident if you do it on purpose.”

That sentence has become a defining sentence in our life. Trying to teach him about the consequences and rewards of his intentional maneuvers. Reminding him that sometimes the right thing to do is not the most logical thing to do. Because on his own, he does not account for the human factor. It is unnatural for him to think about his actions in relation to other people’s feelings. It is easy for him to disconnect that way.

This is hard for me to understand. It is hard for me see him laugh at the sight of someone crying. It is hard for me to understand how someone so sweet and full of love and warmth can be so cold at times.

And then I remember that he is a puzzle.

When I believe that I have seen every side of his personality; he reveals a new side to me. When I think I know all I need to know about who he is and what makes him tick; he starts ticking in a different way. When I start to feel over-confident in my ability to plan and prepare for his behaviors; he throws me for a loop and shakes my confidence.

He is ever moving through his puzzle. And he is ever willing me to keep up with him. Physically. Emotionally. Mentally. He wants to take me on his journey.

I give it my best effort. And sometimes, even if only for a short while, I can keep stride with him. Then, in an instant, he is miles ahead of me soaring and twisting and turning in directions that I could not predict.

He grows frustrated when I cannot keep up with him; physically, emotionally, and mentally. He does not understand why I fall behind. He looks back at me willing me to catch up. And from so far back I wonder if he can still see my face. If he can see my longing to be beside him. I need him to know that I would give anything to keep his stride. To follow his journey. To let him lead. To be led.

I plead with him to slow down. To come back and show me the way forward. I ask him if we can take it more slowly, together. And even though he does not want to come back for me, he does. We begin to move forward again. He starts slowly alongside me. And then again, all too quickly, he is out of my reach.

Part of my journey as a parent of autism is to put my faith in things I cannot see. I cannot always see where he is inside of the beautiful puzzle of his mind. I can rarely tell where he is headed. So instead I focus on the individual pieces.

I teach him about kindness and compassion. I help him understand the way his behaviors impact the world around him. And the way the world around him impacts his behaviors.

My son is a puzzle. To me and to the world around him.  But I have learned that is it the pieces that make the puzzle and not the other way around.  

I see all of the pieces of my son. It is not always clear to me how they will fit together. But, I see them. And, I will keep seeing them. Until one day, when all of the pieces just fit.

CONVERSATIONS