The Rush to Judgement - See The Capability Not The Disability
By Kim Rossi
Several months ago, I came across this story on Facebook. It's attributed to a Dave Hingsburger, so I'll include that. I've had every single member of my daughters' team read it. When you have adult children with autism, life is different from the childhood days. As parents, we have to make a conscious shift from thinking of (and treating) our children as.... children. Education, including advanced degrees, focus on early childhood. People who go into adult services learn as they go. And bring their pediatric mindset with them. I've worked hard - sometimes NOT very nicely - to tell day program staff that my daughters are bright, intelligent ADULTS who need appropriate engagement. Anyway, I hope this story speaks to you as much as it did to me, and you can share with your child(ren) and team. It also applies to the elderly. XOX Kim
He was slowly cutting a piece of his pizza. It was clear that whole he would be unable to ear it by picking it up with his hands, he would be able to do so bu cutting it up into pieces and spearing those pieces with his fork, and then taking the food to his mouth.
He was with a staff who had turned her back to him to text a message or otherwise use her cellphone. Her thumbs flew as she did what she did. She then turned to see that he had started his meal and a look of "this is hard to believe" annoyance crossed her face.
"I told you to just wait a moment, she said. I couldn't hear his answer, as he spoke very softly. "Well, never mind," she said, and she took the knife and fork from him against his small protest, and began to cut up his food. "Don't fuss, " she said. "This will make it much easier for you to get at the pizza faster." Then she laughed. He didn't. He looked deflated.
When a piece of pizza went astray, he picked up his napkin to wipe his mouth. She saw this and took it from him. She didn't say anything this time, and neither did he. But he hung onto the napkin and it ripped. She grabbed another one and went for his mouth. She had a firm, "I'm HELPING you" look on her face. Again, he looked defeated.
She hovered over him.
She took what belonged to him.
A kind of theft of his independence and his self-esteem.
We've all heard about helicopter parents who hover over their children. Who do for them what belongs to them. Who try so hard to be there at every moment that initiative and skills are slowly smothered. It doesn't matter how soft the pillow is that takes the breath from one's self. It only matter that it kills.
I have no doubt that the staff was trying her best to do her best. I have no doubt that her intention was to give him wht he needed. The only problem was, it's what SHE THOUGHT he needed.
The goal in service is to "respect the disability while not disrespecting the ability."
She saw his disability, but she did not see his capability. She did not give him room to grown, to use what he had.
He protested her interference with his independence. He still had a spark in him.
I hope she puts the pillow down, and realized it's not her job to snuff out that spark, but to fan it until it bursts into flame.
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