“My IEP today is going to be tough: those parents are intense. Every year she starts crying, or worse, arguing with me. I wish she would just accept her child’s disability and move on. He’s 11 years old, for goodness sake!”

The parent of a child with cerebral palsy shook us to the core when she talked about “The Spiral Staircase.”

Here are her comments:

“I do accept Robert’s disabilities, but I still grieve for the “normal” child we do not have. That grief is like a spiral staircase. I grieve because my little preschool Robert cannot swing on a swing, or color a picture. Gradually, I accept it, and move on. But then, another milestone is reached by other kids, and he loses out again. I accept that Robert cannot walk, but then the other kids start riding bikes in the neighborhood and he is left at home. I accept that he can’t ride a bike, and the other kids start getting driver’s licenses and going to prom…

“My son is happy and productive. He is being challenged by excellent teachers every day. I know that, and am eternally grateful, but the team appears stressed and is always changing. Does the new aide abide by the critical safety precautions? Can I ask for documentation, or is that argumentative? Those goals seem too easy for what I see at home, but what do I know? I’m just the parent!

“The fact remains that IEPs are a painful annual ritual for me. Incremental progress is documented as cold reality. The stakes are high as we decide which of his many struggles will be our next focus. I once again must consider his peer’s progress and my son’s limitations, while simultaneously being an effective advocate for his care. So, forgive me if I am emotional. I’m just climbing the spiral staircase.”

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