Behind those words were tests they knew nothing of. Behind those words were thousands of genes and a handful of confusing mutations. Behind those words was an astute doctor who said, “He’s got something; we just aren’t smart enough to figure it out yet.” They had no idea. And they didn’t ask. They didn’t care.
And what happens when a single parent working two jobs walks into a meeting? Or a parent who is stressed about making rent or has another child with more urgent needs? What then? The loss, for everyone involved in such IEP meetings, can be measured in time, energy and imagination. When my concerns about Tophs are ignored or referred to in air quotes, as though only hard numbers matter, we all lose. What angers me most as a mother is that I have to be deficit-oriented in meetings to get my point across. If I commend Tophs’ progress and strengths, they will think I’m agreeing to cut his services.
Alone but befriended in this world of figurines, Tophs directs the magic and sets the scenes. He improvises;ponies travel to Target to buy even more ponies, but even if the ponies disagree or one falls prey to feathered bangs cut with blunt-tip scissors, the theme remains the same:Sometimes I worried whether Tophs connected with kids his age, especially as he left the self-contained special-education preschool classroom and entered kindergarten in a new school with typically developing peers.
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