My original answer was “No way!”—but he really wanted to go along.
Our church family was Christmas caroling around a few of the neighboring houses and then meeting again for some cookies and hot chocolate. My son did okay while caroling. He wandered a little and pushed his brother a few times. He liked to ring the doorbells, but soon began pushing the buttons before the rest of us were up the sidewalk. One house, I had to run after him because he continued walking up the sidewalk of a house we were going to skip. All in all, he did okay for a kid who isn’t typical.
But then it was time to eat cookies – aka little blobs of sugar.
As soon as the sugar hit the blood stream, it was as if someone flipped a switch on my son. Even I was surprised. He quickly ascended the hyper-coaster and it was going to get ugly. It was like watching a wind-up toy. You can hold the toy in the air or put in on the floor, it just keeps going. That was my son. It was also past his bedtime. I could barely hold him in my arms. I told my oldest, “Get your coat—we’re leaving.” I had to hold him down just to get his coat on.
He was still struggling at home. I laid him on the couch and said angrily, “Stop it, Elias!” I knew he wasn’t able, but still I threw the accusation at him. Immediately—looking as if he would cry—he turned away from me. I was mad at a child who could not even control his own body and my cruel tone cut like a knife. I felt so guilty and disappointed in myself. How could I be so foolish? As he turned his head dramatically from side to side—possibly to regulate himself, I wondered if he’d be okay. Will he always struggle?
He was loud and wouldn’t stay in bed, which isn’t normally a problem. I brought him downstairs so he wouldn’t wake his brothers. There he sat for several minutes, leaned over with his head buried in his hands.
I looked at my son, tears flowing down my cheeks. I felt sadness and compassion—and of course failure. And then I felt angry. Life is not the same for us. It’s not fair that he can’t participate in certain things because it’s too much for his body. And it’s not fair for us to have to miss out either.
Last night was the first time I was angry at God. Why did He have to allow my son to have such a difficult life? I doubted our ability to handle a son who isn’t typical. I allowed him to go to the church event because I wanted him to enjoy the fun things in life. Yes, routine is important—and we rely on it heavily in our house—but doesn’t he also need to experience life and learn how to work through the effects it has on his body? Looking back on the rough night, I’m not sure this particular event was a wise choice, nor was I prepared to help him through it. Did he even have fun? The negative memory of me trying to fight with his unregulated self probably overshadowed any fun he did have.
The thing is my son has no clue he’s different than everyone else. He cannot identify his struggles or behaviors, let alone the reason. How then do you fully help someone who cannot tell you what’s wrong? So, if we tell him he cannot go Christmas caroling, he doesn’t even understand why.
It was such an emotional night for me—and certainly challenging for my son—as I realized just how difficult this is for our family.