My daughter, who is 8 years old, is on the autistic spectrum. She was diagnosed over a year ago, has been in ABA therapy for about eight months, and has been making slow but still steady progress. However, that doesn’t exempt us from bad days. Yesterday was one of them.
It started with a change in routine. Her dad and I share custody of her; it was his weekend, but we picked her up for her sister’s birthday party. Her dad asked us to keep her overnight because he had a work emergency, which changed things up even more. At the birthday party, there was cake and cupcakes and ice cream and other children and noise. She became overstimulated and bouncy.
After the birthday party, we went as a family to the local hockey team’s evening game. It lasted over three hours, and although she had brought toys to play with, the music was loud, there were a ton of people, and it was past her bedtime. All of these factors combined together to create the perfect storm of what we call “pinging” — she becomes like a pinball machine, going in every direction very quickly, seemingly out of control of herself.
During the hockey game, she was talking non-stop and incessantly touching me. She wanted me to look at this, watch me do that, did you feel that, hear this, see that? It went on for the entirety of the three-hour game, with her either talking to me or touching me every few seconds.
I love my child desperately, and I want her to be happy and feel like she can talk to me, be close to me, interact with me in whatever way she needs, whenever she needs to. At the same time, I was also overloaded from the day’s activities. I was tired and running low on patience, plus I’m six months pregnant and my tolerance for many things is dangerously low these days.
When we got home, it was 10:30, and I could already feel myself fighting back tears. She wanted a piece of pizza; she was hungry. She couldn’t find the pajama pants she wanted, so she asked me no less than four times if she could wear the pants she had been wearing before finally hearing my answer. She discovered the balloons from the party earlier and became entirely distracted by them. By the time she sat down to eat the pizza I had heated for her, almost 20 minutes had gone by. It was going on 11. I stumbled over to the couch and sat down. My shoulders sagged, my heart sank and I felt the day weigh heavy on me. I started to quietly weep.
She wandered over to me and sat on my lap. She hadn’t yet noticed my tears. She hugged me tight, and then said, “Mommy, you’re shaking. Why are you shaking? Are you cold?” I was trying to hold back my tears, but her earnestness was my undoing. I broke down into sobs. “You’re crying, Mommy. Why are you crying?”
Because some days it is hard to parent you. Because I feel like I’m doing everything wrong. Because I don’t know what I’m doing. Because I don’t understand you sometimes. Because I don’t understand myself. Because I feel all alone in this journey sometimes. Because what if this baby in my belly also has a disability, and I’m not strong enough? All of these thoughts flew through my head like a tornado.
What I managed to say was, “Mommy’s crying because it was a hard day today. I’m tired.”
Her sweet, innocent self seemed to sense none of my doubt, none of my trepidation, none of my concern, none of my pain. “If you’re tired, you should go to bed. That’s what you always tell me.”
I hugged her tight, tighter than usual. I cried silently into her hair. I breathed her in and was transported to when she was a baby and I would breathe in her sweet baby smell. I never could have seen this journey coming when she was that small. Even if I could have, I wouldn’t change a second of our lives. Every moment of parenthood, every step, every hurdle, every struggle has led us here. Even on her hardest days, I love her with a ferocity that can’t be named. She is joy embodied. She is endlessly compassionate and wildly imaginative. She sees everything with eyes I could only wish for, and goes through life with a zest I am deeply envious of. As I wept onto her shoulder, she patted my back and stroked my hair, and told me that everything would be OK.
I know in my heart that she is absolutely right.