A Mom Share About Autism: White Knuckling It

Jack age 7 – at nature camp

Super cute, right? What people can’t see is that I am totally white knuckling it. My breathing has been shallow for weeks and we are on the tail end of an extinction burst that was described as “one of the longest extinction bursts” our BCBA had seen. It was late August and I had arranged to accompany Jack to a local nature center who was having a day program (consisting of 2.5 hours of exploring and hands-on learning). Jack had been isolated from his peers since March and his need for connection out weighted my anxiety. I remember noting the glass case of geodes and rock crystals behind him as I snapped this picture. Jack wasn’t in balance yet. We had a behavior plan and he was working through the zones curriculum, but he could become triggered by others, his environment and past trauma. I remember a couple of the other children in the program asking why a mom was tailing along. I prayed Jack didn’t hear, as it could make his emotions spike. The days were filled with Jack interacting, learning and connecting. There wasn’t an outburst or an issue, but I knew it was possible. For months and months I was on pins and needles – anytime were were out in public, engaging with others (family, friends or strangers on the playground). Fear was a constant companion. Fear rode shotgun for longer than I want to admit. I share this because it is part of the “whole story.” If we don’t share what is true, what is hard, what is vulnerable, than how will other know? I share this now to promote awareness and compassion. Maybe it will provide insight, or even better empathy. There are so many fighting the good fight.

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