“Oh, no. Oh, no. Oh, noooo!!!!” The wails started within minutes after dinner had ended. As is our habit, we waited to hear if it was over, or just beginning.
It was just beginning.
The day had gone well. I had taken Sam to a research study that was scheduled in the afternoon. For three hours, he played with clinicians for testing that helped them better understand how children’s brains with autism work. While he did that, I filled out about eight different forms about his development and current strengths and weaknesses while connecting to their WiFi and watching Netflix. I promised him a new toy if he did really well, and he worked very hard. He was paid $30 in cash for his participation, so he had money to go shopping with when he was done. (I got $10 just for filling out those forms!)
He picked out a new Lego set and skipped happily alongside me as we walked down the sidewalk of the outdoor shopping center. I held a large shopping bag in one hand, and Samuel’s hand in the other. Both of my hands were full, matching the state of my heart. I felt myself smiling inside and realized I had a giant grin on my face as we walked along. He let go of my hand, jumping around and making funny noises, and I smiled even more, delighting in my son.
It was dinner time when we arrived home and it was a peaceful meal filled with laughter and good conversation. As it wound down, Sam politely asked to be excused and cleared his dishes from the table to the sink. He hadn’t had time to put his new Lego set together before dinner, but he had opened a couple of the bags to find the minifigure parts to piece together before I realized what he was doing. We had cleaned up the pieces and put them in a sandwich baggie to store in the box, which he was now taking out in his room. That’s when the wails began.
Kyle and I looked at each other from across the table, silently exchanging the look that said, “Do we wait, or go find out what’s wrong?” Sam began to cry and wail louder, forcing me out of my seat to go to his aid. A Lego piece had fallen off his table and he couldn’t find it. I quietly told him I would help him look for it, but that he needed to calm down and take a deep breath. He continued his exaggerated breathing instead, and insisted I could not help him because I didn’t know what the piece was. He couldn’t describe it to me as not even he knew which piece it was. He didn’t know what color or shape it was, only that it was “tiny.” I told him we’d look for it anyway and assured him we would find it. But that would have to wait now, as he had entered meltdown mode. I followed our normal protocol of removing him from the situation to “take a break” until he was calm enough to go back and search.
Samuel HATES taking a break, but I know how much worse it will get if he does not first calm down, so that was my job, which required moving him away from the Legos. This did not bode well for either of us. His meltdown lasted a full hour, during which he got as close as he could to scream his loudest in my ear. His body was unstable on his bed, and I had no choice but to steady him while turning my head to lessen the audible blows – twice. A couple times, he jabbed me in the ribs with his elbow to let me know how mad he was. With a stone face so as not to reinforce his behavior, I repeated my instructions to him as I blocked his elbow with my hand.
After more severe behavior with both myself and Kyle, we had finally succeeded in physically dressing him ourselves and putting him in bed. Miraculously, he was quiet, and Kyle and I sat together on the couch in a kind of shock after what we had just gone through. Our hearts ached, and we talked through what it meant to enter his suffering with him, to love and comfort him as we speculated his likely fear and confusion in his extreme behavior. How were we to reach the heart of our child? The comfort we wanted to offer in the ways we knew how to comfort him was sent on a detour by autism. As we desperately tried to comfort ourselves and find a solution for the next time, we heard Samuel call out again.
I went to see what was wrong, and he said he was just stretching. As I turned to walk out of the room, he said, “Mom? I want to lay down with one of you guys.” I called for Kyle to come as I climbed into Sam’s bed. Kyle walked in and Sam told him he wanted us both to lay down with him for five minutes. We laid on his bed with our son sandwiched between us. Samuel turned over to lay on his stomach, and stretched out both of his arms across our backs in the shape of a “t”. After a few minutes, he told us we had one more minute and flipped over to lay on his back, still putting one hand on each of us where he no doubt was silently counting down from 60. He leaned over and kissed Kyle’s cheek, then turned and stretched to kiss me too before telling us we could go now. We told him we loved him and kissed him back and quietly closed his door as we left.
We hugged each other, trying to grasp the grace we had just experienced. I told my husband, “See? It’s going to be okay.” With tears in his eyes, he said, “No. It’s not ‘okay’…” his voice trailed off. Then with more strength, he added, “But at the same time, it is.”
This is the hope in which we walk. When the challenges and struggles of autism hit us hard, we do not despair. We continue to hope in the grace-filled moments like these where we feel and hear the whisper of God tell us that in the middle of it all, threaded through every fear and every tear, He is making all things new – little by little. He calms our fearful anxieties. He makes our tearful hearts smile. He turns the chaos to peace. He makes the struggle more beautiful because it ends with the sweet kisses of our autistic boy.
I write this not only for your encouragement, but for my own when the next meltdown happens that might not end in kisses. I write this to remind myself of the glimpses of glory I have seen with my own eyes and felt with the touches of my son’s hands and lips, that I might hope to see it again.
What glimpses of glory do you hold onto in your own struggles?