Tuesday, June 26, 2012

Hope for an Autism Day

As I read this post, I thought about how much I could relate to this mother.  I will always remember that the Lord chose Nate and I to parent Landon.  Some days I like to get sad and upset, but I always come back to the Lord being faithful through all of it.  I can see the Lord's hand over our family in so many areas.  Maybe one day I can write about that.  

My husband I have a code for our hardest days of parenting a child with special needs. We call them autism days. It's an autism day, I say, and he instantly knows everything there is to know about how I'm feeling. It's shorthand that I'm sad and perhaps a little tired but mostly just sad. It's a sensitive sadness, a familiar sadness, like a wound that's mostly healed and often forgotten, but unexpectedly gets reopened.  Oh yes, I tell myself, I forgot. This isn't going away.

On Friday, my son finished a week at camp, which in itself is a feat of God's grace and a testament to where we are and to where he's come. I went to collect Will and his suitcase of stinky clothes at camp, arriving in time for singing and cabin awards. While the entire camp, stuffed into the dining hall, sang and cheered, we parents stood with our noses pressed into the screen windows trying to catch a glimpse of our children belting out worship songs. I found Will immediately and marveled as he participated in the hand motions and chants.

The worship leader called out the name of the last song before the campers dispersed for cabin awards: Lean On Me. Initiating the ultimate Christian camp experience, he urged all the campers to interlock their arms and sway as they sang. Will's fellow cabin mates enthusiastically obeyed, and Will, standing in front of them all, tried to get into the chain of boys, but they refused his entry. He tried again but was denied a second time. Finally, he put a hand on the shoulder of a girl closest to him, who looked at him nervously and started uncomfortably giggling.

Will's face said it all. He knew he had been left out. He knew it was an awkward moment. And he knew that he had done something wrong socially, but didn't know what it was. He looked toward me with flushed cheeks and tears in his eyes. I smiled and gave him a thumbs up, wanting instead to reach through the screen window and fold him into me.

And there it was--the familiar sadness. I knew I would have to wrestle with it in my heart the rest of the day. Though the song was a small thing and could likely be explained away, those small occurrences and difficult days are like keys to Pandora's box for me. Pain and suffering take me deep into the recesses of my heart, my theology, my faith, and my perseverance. Autism days provide me opportunities to straighten it all out once again, like ironing out the wrinkles after every laundry cycle.

On the ride home, I listened to his stories about camp, which took approximately three minutes. We played the question game, where we took turns asking each other questions, primarily so I could get more out of him. He asked me trivia questions from our Bible on CD, and I asked him how he felt during the last song. Embarrassed, he said. Everyone gets embarrassed, I said, and I told him times that I'd felt the same way. You know I love you? I asked. Yes, he said, and then we were silent.

As we drove on, I let him play his coveted video games, and I listened as David Crowder sang on my headphones: Wherever you've been, He's been there. The words stood out, but a part of me rose up, bucking the truth of that statement. I'm sorry, God, but have You really been where I am? Have You parented a child with special needs? Do you truly know what it's like?

He spoke clearly, with grace and empathy, into the deepest parts of my heart: I have not parented a child with special needs, but I know how you felt today as you watched your son. I watched as My Son was bullied, humiliated, misunderstood, mocked, physically tortured, and murdered. My dear, precious Son, was rejected before My eyes. I know that sadness and can empathize with you. You do not walk this road alone.

I remembered then that the Father and the Son were able to endure such difficulty because of the outcome, because of the joy set before them. Perhaps I could endure as well or, even better, embrace this road I'm walking, for the joy set before me.

I reached to touch my son as my comforted heart simultaneously bowed in surrender to my Father. With hope from a Father's heart, He re-bandaged my wound.


  1. I have tears in my eyes as I read this. Thank you for sharing! I am so thankful for Landon and that God gave him two amazing parents. We've all been blessed by Landon's life, and he's only 6 years old! Love you

  2. What a great post! Thanks for sharing : )

  3. We're having a Fragile X day here. This post has my crying, but has brought me comfort. Thanks for sharing it.

  4. Amen. I wish we lived closer so we could get together. Maybe I'll be able to see you at a FXS thing one day! :)