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On Wednesday, April 18, Lindsey expected to take Sam to school that afternoon. First they had a clinic visit with a speech pathologist whom Lindsey had hired to try to help Sam talk again. The therapist (who asked not to be named in this story) had already expressed concern about Sam's lack of receptiveness and his inability to respond. Sometimes, after half an hour of coaxing, she could get him to murmur a B sound, but the process was exhausting all of them, and there was little evidence of progress.
At the clinic, Lindsey watched Sam's session through a two-way mirror. He went through a series of sensory warm-ups, jumping on a trampoline and going down a small slide. But when the warm-ups were over, he curled up on the trampoline and refused to move.
Eventually the therapist got him to sit on the floor. She tried to do some identification exercises designed to get him to recognize objects by name. She spread a few toys and cups across the floor. "Can you get me the ball?" she asked. After a moment, Sam picked up the ball. Then he threw it across the room.
The therapist looked up at Lindsey behind the mirror with an obviously tired expression. Lindsey understood her to be wondering, What the hell am I supposed to do here?
After the session, Lindsey and the therapist concluded that as long as he continued to regress, there was no use continuing his speech therapy.
Then Lindsey called the school to say Sam wouldn't be coming in that day.
She took him to a playground, then home to watch Finding Nemo. Ten days later, after what she describes as an unsatisfactory meeting with Sam's teachers, she pulled him out of the district for good. Six weeks later, he still wasn't speaking, but he wasn't crying anymore, and the tantrums had stopped.
But DESE dismissed Lindsey's complaint, ruling that the district had met its legal obligation to Sam by holding IEP meetings with Lindsey and trying to be as collaborative as possible on the boy's education.
"They argued that by meeting with me, they were meeting the letter of the law," Lindsey says. "But there's a difference between working with a parent and just letting a parent speak, then doing what you think is best anyway."
Based on the reviews available from his earliest education in the DESE First Steps (a program for children 3 and younger) and his reviews from Lee's Summit's early childhood program, Sam's skills declined in 12 of 13 areas while he was in the Lee's Summit district.
Now he's in a community outreach education program at Shawnee Mission Medical Center — and making progress. He has regained roughly half of the words and sounds he could make before he started in Lee's Summit. Lindsey filed a request for due process against the Lee's Summit district in February. She's still waiting for a response.
In the time between leaving Lee's Summit and starting at Shawnee Mission Medical Center, Sam went through an intensive course on communication in Columbia. Lindsey hopes that someday he'll be able to speak full sentences, but she worries that the time lost at Lee's Summit and the following year while looking for a new program closed too much of Sam's short window.
"You have a few years in their development, and then that's it — they've come as far as they're going to be able to," she says. By filing legal action, Lindsey says, she's not looking for money from the school district.