Last summer, we put C’s name on a waiting list for the Waisman Center for Autism and Developmental Disabilities. This clinic is part of UW Health and we were told it was the best place to go in Wisconsin for a complete, holistic evaluation for an autism diagnosis. C finally had his appointment late last week. I was so anxious about it that I barely slept, and afterward I was so exhausted that with the exception of a hasty Facebook post I hid from the world.
Those five words came out of my mouth before I realized how silly they sounded, while also summing up exactly what I was feeling.
“It is what it is.”
I was at the church office to pick up C’s school supplies. Two days earlier, his teacher approached me when I was dropping him off for school. He was making seven or eight trips to the bathroom during his three-hour school day. He is too scared to go to the bathroom alone, so a teacher had to leave the classroom to escort him to the bathroom and wait outside the door until he was done. Sometimes he was in there for 10 minutes at a time.
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The thing is, there’s something about my son that I know, but we don’t actually know, but we want to know, yet I’m scared that we will be told, “no,” about. It’s a word that makes me tear up even as I am about to type it here. It’s this thing that I’m grappling with knowing but not actually knowing, and I’ll be sharing my deep emotional struggles with that all week.
Whenever I hear parents extraneously worrying about a child’s aches, pains or viruses, I find myself wishing that the fear in which I operate was that simple. For me, fear is the accomplice of special needs parenting. I may not want it to be there. I may not like it there. But, it’s there.
Starting a new routine that includes school drop off is just plain weird! I do not know how my child got so big so quickly. Even with all the challenging days and nights, I don’t know how we arrived at preschool so quickly. I was apprehensive about today. He was leaving my care for a few hours. How could I be sure his needs were being met? How could I know he was okay?
You reached over the bed rail for my hand. I squeezed it tightly, gazing into your eyes. I love you, my child. My heart.
As I looked at you and gave your little hand a squeeze, I was brought back to the countless nights I rocked you to sleep. I slept in the rocking chair with you many days and nights, because you would not sleep any other way. I held you, rocked you, breathed in your sweetness.