Five years ago, my confidence dropped. As I looked back at the huge investment I had made directly and indirectly in my son's development, I also looked forward. But I saw how much I would still need to invest for as long as I live.
I even stopped writing. Writing was my favorite hobby and was what helped me relax. It helped me process my thoughts and provided me with perspective on tough days, until it didn't anymore. My thoughts turned to how much knowledge I had about the early years of raising a child with Mark's struggles but how much I did not know about the later ones.
Continuing to write a book about finding peace as an autism mom felt dishonest when I was feeling unsettled and questioning much.
Friends directed moms whose kids were recently diagnosed with autism to me, but I felt like an imposter. How could I help? I was surviving one day at a time.
Looking around, I saw experts, but I did not see myself as one of them. In fact, I almost stopped the activities that helped Mark relax and helped us grow closer, the ones that brought on his most fluent thoughts.
As I reflected on my tried and true strategies to calm Mark and generate more talk, I saw only our weird routines and wondered if we were weird people. We frequently went on long drives with music blasting, and I prepared unusual trail mixes that he loved. How could I tell other moms that these were the moments we cherished and craved?
Peace came to me at an unexpected time: I was cuddling with my boy and watching one of my favorite shows, This Is Us.
In that episode, a foster child was staying with a family that was exemplary by all objective standards — kind, organized, educated, financially comfortable, and so on. The family wore many hats as mentors, protectors, teachers, and confidantes to the girl. Even so, the court ruled the girl must go back to her mother once the mom got out of jail.
When the foster dad, out of curiosity and concern, drove to the mom's home, he saw a setting that was far from perfect. However, he also observed the love of a mother who was thrilled that her daughter was coming home. She had gone on a special shopping trip and handpicked purple clothes for her daughter.
When the dad went back to his home and his wife, he commented that they had a lot to offer the girl but acknowledged that they didn’t even know her favorite color was purple. The perfect-looking parents reflected on their gaps and the biological mom’s special, inside knowledge.
There are people who have specialized degrees that relate to autism, speech pathology, special education, and behavior. I love those people. They are resources for me and listening ears. They have much to offer Mark and me.
At the end of the long days, though, I know what Mark likes and needs. When he asks to “go on the big freeway really fast,” I know that means taking Interstate 635 all the way to Mesquite and then turning around to come home, and I know what songs he will want to hear on that ride.
When he says he wants a snack, I know that means Gardetto’s, Chex Mix, Cheez Its, and Goldfish. I know what “white cracker” means and what “cave crackers” are, and when I don’t know phrases I determine a strategy to figure out and muster the patience to help him.
When he looks at me and says, “I miss my wife,” I say, “You know what? That song is called 'Rocket Man.'”
Mark's favorite color is red. I handpick red shirts, caps, and bedspreads. Our house is home. I’m his mom. We have a comfortable house, dependable cars, and a refrigerator full of food. Mark has two parents, a sister, and a dog. He is safe and loved.
Homes where autism lives can be messy and stressful, though. The resources may never be fully there for Mark to have a mom who has enough answers, energy, and magic to give him the friendship of peers or the skills he needs to be independent.
When he comes home sad or burned out, though, I will be the one with the answer I have read from his face for how to calm him or make him happy on that day, the motivation to help him, and the magic touch he needs to help him soothe himself.
That’s something Mark needs.
It's also something most people don’t know how to do.
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