Dutch and I met with Jacky’s support coordinator yesterday to make some changes to his care plan. I learned that because of the nature of his disabilities and the intensity of his behaviors, Jack requires what is coded for billing purposes as exceptional care.
It was the most validating thing I’ve heard in ages.
No kidding he needs exceptional care! Deep down I’ve known this forever, but hearing Shannon define it so simply and clearly was oddly liberating.
Jack requires exceptional care. Amen, and amen. Also, duh.
This is why our lives are a vortex of wild and crazy. We are trying to do normal things like work and raise other children and be social and give within our community, while the entire family spins and whips around Jack’s exceptional needs.
It makes so much sense! This is why things are always precarious, why anything added to our lives is like tying a sandbag to the ankle of a person dangling from a cliff.
I feel less unhinged. The state of our household has been unequivocally defined as beyond typical by accepted standards in the field. Even among other people with disabilities, our Jacky’s needs fall outside the norm.
We are outliers. Knowing this and having the correct options because of this distinction feels like the patter of rain, dropping a blessing on our house.