A few weeks ago, I was having a conversation with one of Charlotte’s Occupational Therapists about her defiant behavior. I had been noticing a pattern that went something like this: change in her routine due to holiday/illness/schedule, inappropriate sensory seeking behavior, Chad and I jumping in to regulate sensory needs, defiant and uncooperative behavior that diminishes over time. The cycle wrecks havoc on my mental state as I feel relief and exhaustion from the tide of dysregulation just passed and restlessness at the thought of the next swell coming upon us.
As I was talking to her I felt like an old weathered sea captain regaling his tales, vividly describing each cycle as a storm more difficult to bear than the last….with a thoughtful and far-off expression I discuss The Dysregulation of ’11…when we moved from one house to another…….oh, yes, then there was the Starting School Dysregulation last August….that was a really bad one….many nights of bad sleep, impulsive behavior…..and then there was the one just a few months ago when her preschool teacher left….horribly defiant….
She smiles patiently while I carefully explain each harrowing experience after another, all the while, I’m searching for appropriate amounts of validation and sympathy. She finally nods and concludes that this is all “normal”. I really don’t like that word and stare at her as if that answer is completely unacceptable. She squares herself in her chair to look at me and says, “It’s a good thing. The nervous system is resetting itself in preparation for more growth.”
I’ve been carefully considering the therapists words over the last few weeks, as illness stole our family’s sense of routine and order, and we have begun a new and mild cycle of dysregulation. It’s mild in the sense that her sensory issues are more under control, but it has been difficult in the sense that pragmatic speech has been affected. We’re hearing more scripted language, seeing less eye contact, and generally feeling less connected to her. This certainly doesn’t sit well with me as we can’t get Speech Therapy to save our lives, and my anxiety switches begin turning ON as I’m feeling helpless and out of control.
I force myself to come out of the haze of worry and fear and begin to put my concerns into constructive questions. At the next meeting with the therapist, I find myself asking questions like, “now that she’s more sensory regulated, will her patterns of dysregulation look more social and speech related?” Again, she calmly nods Yes. We discuss options for how to regulate her when she seems socially disconnected.
A few days later I’m reading The Way I See It by Temple Grandin on my Kindle and this quote strikes me…
“the best thing a parent (of a newly diagnosed parent can do) can do is to watch their child without preconceived notions or judgments and learn how the child functions, acts, and reacts to his or her world.” (parentheses mine)
I suddenly realize that I can take these two pieces of information and put them together to calm myself and help Charlotte. With careful practice, I begin to observe without my veil of anxiety and worry. Instead of squirming around her nonsense questions and comments, I find her eyes with mine and tell her that she’s not making sense. I coach her into finding better words to explain what she’s thinking and reward her for her efforts. It helps, and she seems relieved that I find this connection with her. She’s excited to tell me more about Max and Ruby’s adventures or what she did at school. She wants to ask what we’re doing tomorrow and when is her birthday. I find my own connection with her and ultimately find my peace of mind.
I tell myself that in giving her the words and safety she needs to communicate, she will experience a new surge of growth. The cycle will complete itself, and the next one will bring new and different challenges. My anxiety continues to rest at bay but these thoughts allow me to breathe a little easier. I remind myself that it just takes time and patience.
I ease up from bracing myself for the impact of the storm and ride the waves as if I’m on the voyage of a lifetime.