"Our family is a group project." ~Once Upon a Gene, Episode 184 with Janie Reade
I'm listening to a podcast about Syngap1. It's for work, but I'm finding it resonates personally, too. I'm still trying to understand, or perhaps accept, and definitely learn to navigate, my son's behavior. He has not been diagnosed with Syngap1, but I am curious about genetic testing and I related to many of the stories that the speaker shared.
This week, C had a panic attack around 7pm in the evening (triggered by his sister's refusal to play), resisted taking his medication (he's tired of it), and then, even after a reading break and finishing his medicine, was simply unable to sleep until 4am the next morning.
Last week, he had a panic attack after school (interestingly, again triggered by his sister's refusal to walk home with him), and I spent an entire hour physically wrestling him on the front lawn of the elementary school. C is more than half my body weight at this point, and it was really, really hard to try to keep him safe and keep myself safe. The traffic was busy in front of the school. There was a police cruiser parked at the crosswalk for traffic control, and parents were coming and going as they picked up their kids from after-school activities. Not a single person approached us or offered help. Tears were streaming down my face as C screamed and thrashed and I tried to keep him from biting me or running into the road. I was totally, completely alone amidst the 4pm hustle and bustle. This is how I feel much of the time. I feel completely alone. I am terrified I'll get sick for another month. Often I'm terrified I won't be able to complete the work for my part-time job. It is relentless fatigue and confusion and digging deeper within myself until I'm afraid I've completely excavated my psyche and the natural resources of my strength will run out. And even worse than the physical fatigue and isolation is the emotional isolation. No matter how well meaning, no one can understand what I am going through, truly, unless they have experienced it, or experienced living with a child with a severe or chronic condition. And life is completely unpredictable. When regulated, my child can engage in a grown-up conversation with his teachers or the parents of his peers. He can do division in his head and read chapter books. When unregulated, he is like a rabid raccoon and no amount of calm parenting can penetrate his fear and pain and anger, and he can barely access words.
I had a parent appointment with his therapist today. She is incredible, and I am so grateful we have her. I confessed that one of my fears is knowing how to keep him safe without being too rough. For example, to keep him from running into the road I had to pull him by his arm. I am also terrified of his shame: I want him to know that I don't judge him for his behavioral outbursts, that I don't think he is bad when he gets angry, that I will never stop loving him unconditionally. I am not perfect and certainly lose my patience and sometimes I yell, but I try really, really, really hard to be calm. I shared my fears with C's therapist, and she provided me with desperately needed validation. I don't think parents have to be perfect; in fact, I know that's not healthy. But to receive reassurance from a competent therapist I trust was deeply healing. I'm still hesitant to let myself believe it fully; but it made me feel better for a little while. It temporarily calmed my moments of doubt when I wonder if it is all my fault.
And meanwhile, I don't want my equally beautiful daughter to be an afterthought. She has her own struggles, and in a crisis I have to prioritize safety over nurturing. Next week she's going with me to a medical camp my work is putting on. B is our unofficial "youth ambassador." She's at the perfect age ~ young enough to just want to play with other kids, regardless of what extra equipment they have to tote around or if they appear different from her, and old enough to understand that some of those differences require accommodation. My son is staying with his dad while we go to camp, so I'm hoping it will be some special time for the two of us to hang out.
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