The short dark days of December seem to be a perfect reflection of the winter that’s arrived in my parenting experience. For the past eight weeks, my son’s classroom behavior has simply disintegrated. At the close of each day, I learn that my child—my love bug, the one I’d do anything for—has been hitting and spitting at other children. One day, he refused to go to the cafeteria for lunch with the other children. He stood outside the lunchroom throughout the entire lunch hour, and an hour later was hungry and begging to eat.
While my wise self knows better, I take these behavioral reports personally; as though they’re evidence that I’m failing as a parent. Even though my son has Down syndrome, and his sensibilities, needs and modes of communication are different from those of typical children, I don’t want things to be harder for him. I realize that’s silly and unrealistic, but it’s true.
My son’s father and I attended our teacher/parent meeting the other day. His teacher is dedicated and lovely. She is constantly trying new things to assist all her students in meeting their goals and yet still have fun, but that day she looked sad. She didn’t want to give us difficult news, but she knew she had to be honest. She started off positive.
“For the most part, your son is progressing. He loves math and can count into his 20s. He’s identifying colors and having an easier time transitioning from one activity to another.” She continued, “He loves music and looks forward to helping lead songs and being my helper when I need it. But...” I braced myself and gazed at my son’s father. I was grateful for his steady demeanor. “We struggle because your son is noncompliant.”
Although my son’s teacher is great, her entire classroom can’t be adjusted for the needs of one child.
There it was, the title that has been the bane of my parenting experience. Noncompliant. I shrunk in my seat, and listened as she went through a list of behaviors that make my son’s school day difficult for him and everyone around him. For example, because he is smaller than most kids, the girls (especially) nurture and baby him. This frustrates him, and because he doesn’t have the language to respond, he reacts by hitting them or spitting at them. Eventually, he is isolated.
I could see both hope and sadness in his teacher’s eyes. She could probably see the same in mine. “I’m afraid this isn’t the right environment for him,” I responded. “I think he’s on sensory overload. There’s just too much information for him to take in and his little body and brain aren’t ready for it all. I’ve noticed at home that he’s startled more often by loud noises, and that he’s become clingier with me. At the same time, he’s able to communicate better with me, asking for what he wants and eager to share his thoughts,” I said.
Leaving that meeting, I felt like I was out of options in that environment. Although my son’s teacher is great, her entire classroom can’t be adjusted for the needs of one child. My son’s father and I spent a few moments talking afterward. Both of us were unclear what our next move should be.
It was time for me to do something I hadn’t done since becoming a parent to a child with special needs. I would join a support group. It always seemed like just one extra thing to add to my already full to-do list. Previously, I’d felt I could get the support I needed from my relationships with teachers, therapists and my son’s doctor. But that day I felt in my heart that I needed another mother who’s been through behavior issues with her child with Down syndrome.
Within 24 hours I’d called the local chapter for the National Down Syndrome Society, hoping to find a support group I could join right away. I also had a long conversation with a special needs educator who’s worked closely with children who have Down. She confirmed my feeling that my son is experiencing sensory overload, and that it’s important to design his educational experience around his pace. I hung up the phone realizing that we had a lot of work ahead of us, and that we’ll discover the tools and the environment to help reveal our son’s highest potential.
If running out of options has taught me one thing about parenting a child with Down syndrome, it’s that when my bag is depleted, it’s time l look in the bag that belongs to another mother. Parent support meeting, here I come.