The Strangest IEP Meeting Ever
From Kate Swenson’s memoir Forever Boy
“Kate and Jamie, after careful evaluation, it appears that Cooper exhibits the signs of autism spectrum disorder.”
There it was. The label that had haunted Kate Swenson, but finally someone had said the word autism in relation to her two-year-old son, Cooper.
Swenson and her husband were at a meeting with her son’s IEP team to determine if he qualified for services with the school district, and after reading the reports of their assessments, the meeting became strange.
“The team gathered around the table has mixed opinions,” the director of special education said.
She went on to tell the Swensons that a child can have an educational diagnosis for autism without necessarily having a medical diagnosis — and two members of the team felt her son was on the spectrum and two did not.
That wasn’t the strange part — that part was a few minutes away.
After asking Kate how she felt about an autism diagnosis, the director did something that struck Swenson as bizarre. She brought the issue — of whether her son was autistic or not — to a vote among the four team members.
“I felt like we were playing some weird twisted game about my son’s future. She could not be serious. If it was that simple, autism or not, I obviously would vote no.” — Kate Swenson, Forever Boy
A vote? Is she serious?
The weird part was the director had already said the team was divided. What was the point of having a vote? Is this really the way it’s determined if a child has autism and deserves to receive services, she thought.
“Since we are not all in agreement on Cooper’s diagnosis, raise your hand if your think Cooper is autistic. Keep your hand down if you think he is not.”
One team member raised her hand and so did the director. Kate and her husband sat speechless at what was going on during the meeting.
The director asked each team member to share why thought Cooper had autism or not. Then the meeting became more bizarre. The director dropped a bombshell on Kate and her husband.
“Kate and Jamie, you two need to vote. With everything you have seen and heard during the evaluation process and at home, do you think your son has autism?”
It felt a strange way to Swenson — and to me reading about it in her memoir Forever Boy — to determine whether their son should receive services that are federal rights under the IDEA act if a person qualifies with a disability.
“I gasped and then giggled awkwardly. So did Jaime. I thought to myself, What in the actual hell? We were the deciding votes.”
— Kate Swenson, Finding Cooper’s Voice
The deciding vote
Silence hung in the air. The director explained that an autism diagnosis would help Cooper get more services. It felt like she was trying to talk them into an autism diagnosis while thoughts bounced around like a pinball inside her head.
“How could they expect me to label my own son? A label for people to judge him, treat him differently. I assumed a person was either autistic or not autistic. And they wanted us to decide? Weren’t they the experts?”— Kate Swenson
Finally, her husband broke the silence. “This will help Cooper and get him the services he needs?” he asked, and the director nodded.
“Then I say yes.”
Now, in a bizarre twist of irony, she was the deciding vote. She felt sickened and betrayed by how her husband answered so nonchalantly to something has been simultaneously running from and fighting for the past several months.
She had been screaming at her husband, trying to get him to see that there was something wrong with their son and, finally, he had simply said, “yes,” to something he had avoided for months.
Was she now the deciding vote in her son’s diagnosis? So many thoughts raced through her head that all she could do was just nod.
A medical diagnosis
The meeting continued with an agreement on an educational diagnosis of autism and a plan to start services in the fall. She asked the director after the meeting whether she should pursue a medical diagnosis of autism for her son.
She didn’t understand the difference between an educational and medical diagnosis. She still had questions. Was her son actually autistic?
“We can’t give you that advice. Not legally.”
The next day, Swenson went to work early and closed the door to her office. She pulled out a crumpled piece of paper with the phone number to an autism diagnosis center she had googled the night before in bed after a late-night search.
It was time to find out the truth, no more living in this in-between world where she and her husband cast a deciding vote if her son was autistic.
She had to know the truth — to support her son and to know the truth.
Thank you for reading my story.
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