When your kid is young, the teachers look dead serious when they tell you his IEP goals are designed for achieving “independence.”
You think “Independent? He’s in 3rd grade!! You think I’m letting this kid outta my sight? You’re insane, Miss Cutthroat! He’d run away with a predator.”
You think I’m letting this kid outta my sight? You’re insane, Miss Cutthroat!
But what you say is “Mmm-hmm” as you stare at page five of a 26-page document. Elementary school is the beginning of the disconnect between Special Ed teachers & parents who just want their kid to come home from school alive — not almost-strangled on the playground (true story from a dad I know), not wandered away at lunch (possible for many kids I know).
Flash forward to the spring of 8th grade and you see a need for independence getting real pretty quick.
Our incredible BT Jeannie has started to plan some forays into the community with Jack, getting him used to riding the bus and preparing him for more independence.
They made a list of things to do on Saturday mornings: go grocery shopping, go to Bryant Park, go to Top Pot. Today was the first journey out, and the weather cooperated. We had gotten him his Reduced Fare Orca Card this week, and he was psyched. His picture’s on it!
They headed to Fred Meyer for Larabars & Gatorade. Jeannie suggested they also look for a brown wallet to carry his Orca card in. They just got back and Jeannie said, “Excellent. He did great on the bus. I sat across from him the whole time. He self-corrected his posture, and kept looking up at the stops — 110th Street, 115th. He knew exactly where to get off.”
“He did great on the bus. I sat across from him the whole time. He self-corrected his posture, and kept looking up at the stops — 110th Street, 115th. He knew exactly where to get off.”
Jack’s sitting on the couch pulling out a box of Peanut Butter Banana Larabars, three loose ones and two bottles of Gatorade. “Lemon-Lime. Icy Charge,” he informs me. And? A brown wallet.
“Jackster!” I say. “Congratulations! Sounds like a great trip out!”
They have other ideas too — volunteering at an animal shelter and taking a class at the community center. Maybe martial arts or hip hop dance.
I can bide my time while they’re gone without freaking out because I have 100% trust in Jeannie. She’s a superstar and Jack is learning a ton from her. For me, it’s like a slow reeling out of Jack into a larger circle of activities.
I wish all kids with epilepsy could have BTs like Jeannie. God knows they need it for their impulse control and executive functioning. It’s not fair that insurance only covers it for kids with autism. The way I see that? Autism parents are mightily mobilized. We epilepsy parents? We’re just trying to piece together the day. But we need to rise up, and our day is coming.