I’m excited to write and see where this all goes, and I have lots of new things to share. But my computer is already overflowing with bits and pieces of the book I started six years ago about our autism journey (which if ever published will be titled “Raising A-L-E-X”).
In order to keep myself from obsessing over the organization of this new blog thingy, I’m going to keep it simple and go back to the beginning. Here’s the first story I wrote about learning to reach my son after his diagnosis. Hope you enjoy.
When Alex was first exhibiting signs of autism and apraxia, continuing with our normal routines was often challenging and depressing. The child who used to laugh and jump around with his buddies was now becoming more and more withdrawn, anxious and over-sensitive. Going on play dates, even with close friends, was sometimes excruciatingly hard on me emotionally. I would try my best to be patient and help Alex hand-over-hand interact and play with his friends. It was not always possible for me to keep a positive outlook, however, and the more anxious I was about Alex’s behavior, the more his sensitive mind picked up on my feelings and the worse things got.
One day when we were visiting my friend Rose and her daughter Sabine, I learned an important lesson about true friendship, trust and acceptance. Two year old Sabine taught me the meaning of unconditional love and belief that day. Her example gave me a model for helping Alex for the rest of that summer and into the early years of his therapy. Here is the story of Sabine’s lesson:
Alex was anxious when we arrived at Sabine’s home. He was suddenly extremely afraid of the loud noises her parakeet made and did not want to come into the house, even though he had never been hypersensitive to these noises before. It was a struggle to get him in the front door, despite the fact that Alex and Sabine had been friends for over a year and played together often. Next it was a struggle to get him to interact, to eat snack, to have a “normal” play date. I had not yet gotten to the point of accepting his quirkiness because he was becoming such a puzzle to me that at times I honestly didn’t know who he was anymore. I yearned for normal and typical, every night I begged God for a return to the life I knew and was confident in. I felt I had no resources to deal with these sudden, disturbing changes.
Now standing in Rose’s house, I was on the verge of tears, feeling depleted and exasperated as I tried to get Alex to come out from under her kitchen table. Sabine kept walking back and forth between the living room and the table, bringing Alex toys and cookies, even trying to get him to eat small bites of snack, which he was refusing. Sabine was holding cookies up to his mouth, and putting small trinkets in his hands. Alex was not making eye contact, was tense and frozen, occasionally whimpering a little like he needed to be rescued from something scary and dangerous. Rose was telling me it was okay, not to worry, kids were kids and sometimes they acted funny. But I knew that something was seriously wrong here and I was worried and out of my element. I felt powerless to help and was becoming more anxious by the minute. I didn’t know how to reach my child behind the autistic wall in his mind. For that matter, I didn’t even know how to get him out from under the table, as he was squirming away from me and pulling back with all his weight whenever I tried to pick him up.
Then Sabine did something so simple and extraordinary that I will never forget it. After waiting at the edge of the countertop for the better part of half an hour for Alex to come out, after trying to entice him with toys and food, she simply decided she wanted to be with him more than she wanted to play alone. She asked her mother to move one chair out for her so she could get in beside Alex. She crawled in and asked Rose to move the chair back in front of her, positioning herself just as Alex was positioned next to her. Then she reached out and took his hand.
Although Alex did not smile or look at her at the time, he did not pull away either. He just stood there holding Sabine’s hand. Tears came to my eyes as I watched this beautiful, caring little girl try her best to step into my son’s strange world. What she did next gave me more hope than all the expert advice I had received over the months before. Sabine, a typical two year old, just got tired of standing under the table. She decided that she was going to play in the living room and that Alex was going to come with her. Alex was her friend and she would show him how. She was confident that he would play because she knew that somewhere inside, he wanted to play and he loved her too.
Very carefully, Sabine stepped out from under the table. Then she took Alex’s two hands in hers. “Come here, Alex,” she said gently. Walking backwards from the kitchen toward the living room, she led Alex out from under the table. He did not pull away from her, he did not start to cry. He was a little bigger than she was at the time, and could easily have escaped her grasp. But he didn’t squirm. He didn’t want to. He wanted to be led, he wanted someone to show him how, and he trusted Sabine. Alex let Sabine lead him into the living room to join her in a game of ring-around-the-rosy. He had no words at the time to express his gratitude, but he smiled at her and these two tiny kids shared a moment of true friendship.
What I learned from Sabine that day was that in order to help my son, I needed to love and accept him unconditionally. I needed to always begin where he was and trust that he did not want to be locked under the table or inside his anxiety or behind the curtain in his mind. Sabine showed me that if I trusted my instincts and was very patient and persistent, I could enter Alex’s world and find ways to bring him into mine. When he trusted me and felt safe, he would let me lead him by the hand into a happier place of shared experience. From there I could reach him and only then could I help him.