I'm always struck at the number of grandparents who turn up at my readings. During the discussion afterwards, they usually ask similar questions; "I have a granddaughter with autism. What should I do when she flaps her hands?" or, "Why do the tags on his sweater bother him so much?"
Whether they go by Grandma and Grandpa or Nana and Pop or Meme and Bumpa, they all ask about sensory integration and weighted blankets and self stimulation: the buzzwords that weren't around when they had small children. They are hungry for knowledge and yearn to connect with their sometimes spinning, oftentimes silent grandsons and granddaughters.
And I have so much I want to tell them -- too much to squeeze into the five minutes we have together.
I want to tell them that out of 20 grandchildren, Jack is the only one diagnosed with Autism Spectrum Disorder. That at first his grandparents didn't believe it was true, they kept telling me things like he is fine he is fine he will be fine. But he wasn't fine. Eventually they realized it too, and their hearts broke right along with ours.
I want to say that for years they longed to connect with their enigmatic grandson, to have sleepovers and make meatballs and sing Italian songs.
That for the longest time, he didn't understand them and they didn't understand him. But over time, like dancers who have never danced together on a stage, they slowly figured out each other's rhythm and routine and style.
And finally, when he was about six, it was Jack's turn to spend the night in their cozy one-story ranch, his turn to gently drift off as his grandmother sang Italian lullabies in the darkened bedroom. And once he was asleep, Joe's mother and father kept a silent vigil over him all night long -- watching and waiting in case he woke up and slipped out the door, even though his days of wandering were behind him.
Now Jack is nine, and when we go to their house for Sunday dinner he marches up to his grandmother in the middle of the meal with a yellow pear in his hand and wordlessly thrusts it at her. My husband Joe and I protest; Jack Grandma isn't done eating yet let her finish. But every time, she shushes us and bends closer to him, whispering for him to hand her the ripe fruit. She picks up her knife and peels it, handing him section after section while he hovers at her elbow. "This," she says quietly. "Is what I do for him."
I wish I could explain how this is a victory, and yes, we've made so much progress and they love him for who he is and embrace his autism and all of its wondrous color.
But what I really want to say is that the real progress happened six years ago.
We were at my sister-in-law's house for a birthday party. Jack was about three, and over the course of the afternoon he and our two-year old, Charlie, were at each other again and again, fighting and kicking. I don't even remember why, but I think it had something to do with a deflating balloon. I vaguely recall them grabbing and snatching for it as the white circle drifted around the crowded kitchen.
I do remember I was hot and I do remember I was irritated. I remember I was tired of hearing my two boys screech and scratch at each other, tired of separating them again and again. Finally, Joe put Jack in a timeout in the living room and instructed him to stay there.
Alone, he sat in the other room, screaming and crying as the rest of us shifted nervously in our chairs. Then all at once Joe's mother got up, and walked determinedly over to where Jack sat. She picked him up and cradled him against her shoulder. When Joe protested, she looked up at her six-foot-tall son and said firmly, "Enough. We are done with this."
Both Joe and I were outraged. Outraged that she interfered, outraged with one another, outraged with a son we could not figure out. On the hour-long car ride back home we niggled and argued, bickering about timeouts and in-laws and how to handle children who threw tantrums.
But now, six years later, I finally understand what my mother-in-law had figured out during that party. She didn't know the terminology for sensory integration or regulation or self-stimulation, but she recognized a small boy who was overwhelmed and tired and sad. She didn't need sophisticated language to diagnose two parents who were on the verge of a breakdown.
So, I would like to say this to all of the grandparents I meet:
Yes, there are unfamiliar terms like joint attention and IEP and theory of mind, but at the end of the day, it's just you and this child. Do not be afraid. Deep down you already know these phrases. You know when a child has had enough.
Yes, you'll need to accept what you can't change and love them for who they are, but when your grandchild has autism, never forget that you have your own message to share and lessons to teach. Sing the songs. Make the meatballs.
And there will be progress. Some days it will be small -- so small you will miss it if you blink. Fleeting smiles and mouthfuls of ziti and a quiet whisper, hi Grandma you are here.
Some days, it may look like nothing more than a small boy standing next to you with his palm outstretched, waiting for his slice of a juicy yellow pear.