Excerpt: 'The Spark' by Kristine Barnett

Jake and Kristine Barnett. Her memoir of raising

Jake and Kristine Barnett. Her memoir of raising the autistic, astrophysics genius is titled "The Spark." (Credit: Drew Endicott)

November 2001, JAKE, AGE THREE

"Mrs. Barnett, I'd like to talk to you about the alphabet cards you've been sending to school with Jacob."

Jake and I were sitting with his special ed teacher in our living room during her monthly, state-mandated visit to our home. He loved those brightly colored flash cards more than anything in the world, as attached to them as other children were to love-worn teddy bears or threadbare security blankets. The cards were sold at the front of the SuperTarget where I did my shopping. Other children snuck boxes of cereal or candy bars into their mothers' shopping carts, while the only items that ever mysteriously appeared in mine were yet more packs of Jake's favorite alphabet cards.

"Oh, I don't send the cards; Jake grabs them on his way out the door. I have to pry them out of his hands to get his shirt on. He even takes them to bed with him!"

Jake's teacher shifted uncomfortably on the couch. "I wonder if you might need to adjust your expectations for Jacob, Mrs. Barnett. Ours is a life skills program. We're focusing on things like helping him learn to get dressed by himself someday." Her voice was gentle, but she was determined to be clear.

"Oh, of course, I know that. We're working on those skills at home, too. But he just loves his cards . . ."

"I'm sorry, Mrs. Barnett. What I'm saying is that we don't think you're going to need to worry about the alphabet with Jacob." Finally -- finally -- I understood what my son's teacher had been trying to tell me. She wanted to protect me, to make sure I was clear on the objectives of a life skills program. She wasn't saying that alphabet flash cards were premature. She was saying we wouldn't ever have to worry about the alphabet with Jake, because they didn't think he'd ever read.

It was a devastating moment, in a year that had been full of them. Jake had recently been diagnosed with autism, and I had finally come to understand that all bets were off as to when (or whether) Jake would reach any of the normal childhood developmental milestones. I had spent nearly a year stepping forward to meet the gaping, gray uncertainty of autism. I had stood by helplessly watching as many of Jake's abilities, such as reading and talking, had disappeared. But I was not going to let anyone slam the door shut on the potential of this child at the tender age of three, whether he was autistic or not.

Ironically, I wasn't hopeful that Jake would ever read, but neither was I prepared to let anyone set a ceiling for what we could expect from him, especially one so low. That morning, it felt as if Jake's teacher had slammed a door on his future.

For a parent, it's terrifying to fly against the advice of the professionals, but I knew in my heart that if Jake stayed in special ed, he would slip away. So I decided to trust my instincts and embrace hope instead of abandoning it. I wouldn't spend any time or energy fighting to convince the teachers and therapists at his school to change their expectations or their methods. I didn't want to struggle against the system or impose what I felt was right for Jake on others. Rather than hiring lawyers and experts and advocates to get Jake the services he needed, I would invest directly in Jake and do whatever I felt was necessary to help him reach his full potential -- whatever that might be.

As a result, I made the scariest decision of my life. It meant going against the experts and even my husband, Michael. That day, I resolved to stoke Jake's passion. Maybe he was trying to learn to read with those beloved alphabet cards, maybe he wasn't. Either way, instead of taking them away, I would make sure he had as many as he wanted.

 


Excerpted from "The Spark" by Kristine Barnett. Copyright © 2013 by Kristine Barnett. Excerpted by permission of Random House, a division of Random House, Inc. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.

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