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The extraordinary memoir of a mother's love, commitment and nurturing, which allowed her son, originally diagnosed with severe autism, to flourish into a universally recognized genius--and how any parent can help their child find their spark.
Today, at 13, Jacob is a paid researcher in quantum physics, working on extending Einstein's theory of relativity. Diagnosed at age 1 with severe autism, at 3 he was assigned to life-skills classes and his parents were told to adjust their expectations. The goal: tying his own shoes at 16. Kristine Barnett's belief in the power of hope and the dazzling possibilities that can occur when we keep our minds open and learn to fuel a child's true potential changed everything.
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KRISTINE BARNETT is the mother of Jacob Barnett and his 3 younger siblings. She runs a daycare that includes both typical and special-needs children. She is also the founder of Jacob's Place, a non-profit organization designed to help children with autism, as well as an award-winning sports league for autistic children.Excerpt. © Reprinted by permission. All rights reserved.:
An Inch, or Ten Thousand Miles
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.
Three years before, I'd been ecstatic to find out I was pregnant with Jake. At twenty-four, I'd been practicing for the role of mother as far back as I could remember.
Even as a little girl, it was clear to me (and to everyone around me) that children were likely to hold a special place in my future. My family had always called me the Pied Piper, because wherever I went, there was sure to be a trail of little ones on my heels, waiting for an adventure to begin. My brother, Benjamin, was born when I was eleven, and right from the start he was never far from my hip. By the time I was thirteen, I was the go-to babysitter for the whole neighborhood, and by fourteen I was in charge of the Sunday school at our church. So nobody was the least bit surprised when I went to work as a live-in nanny to help pay my way through college. Then, after I got married, I opened my own daycare, a lifelong dream. I'd been around children my whole life, and now I couldn't wait to have my own.
Unfortunately, the road leading to Jake's birth was not easy. Although I was still young, the pregnancy was touch and go from the beginning. I developed a dangerous high-blood-pressure condition called preeclampsia, which is common in pregnancy and can harm both mother and child. My mother helped out with my daycare, as I was desperate to hold on to the baby. But the pregnancy became more and more fraught, as I went into preterm labor again and again. Eventually, my doctors became so concerned that they put me on medication and strict bed rest to help prevent premature labor. Even so, I was hospitalized nine times.
Three weeks before my due date, I was rushed to the hospital once again, this time in labor that couldn't be reversed. A cascade of events made the outcome increasingly uncertain. For me, the scene was a kaleidoscope of people rushing in and out, alarms sounding constantly, as the faces of the nurses and doctors crowding the room grew increasingly tense. Michael says this was the day he saw exactly how tough and stubborn I could be. I didn't know it at the time, but my doctor had pulled him aside to tell him that labor wasn't going well and he needed to be prepared: It was likely he would be going home with either a wife or a baby, but not both.
All I knew was that in the middle of the hazy blur of noise, pain, medication, and fear, suddenly Michael was by my side, holding my hand and looking into my eyes. He was a tractor beam, pulling my -attention--my whole being--into focus. That moment is the only clear memory I have of that frantic time. I felt as if a camera had zoomed in on us and all the commotion surrounding us had ceased. For me, there was only Michael, fiercely strong and absolutely determined that I hear him.
"There aren't just two but three lives at stake here, Kris. We're going to get through this together. We have to."
I don't know whether it was the actual words he said or the look in his eyes, but his urgent message broke through the fog of my terror and pain. He willed me to understand the unending depth of his love for me and to draw strength from it. He seemed so certain that it was in my power to choose life that he made it true. And in a way that felt sacred, he promised in return to be a never-ending source of strength and happiness for me and for our child for the rest of his days. He was like the captain of a ship in a terrible storm, commanding me to focus and to survive. And I did.
Real or imagined, I also heard him promise me fresh flowers in our home every day for the rest of my life. Michael knew that I had always been wild for flowers, but a bouquet from a florist was a luxury we could afford on only the most special occasions. Nevertheless, the next day, while I held our beautiful baby boy in my arms, Michael presented me with the most beautiful roses I have ever seen in my life. Thirteen years have passed since that day, and fresh flowers have arrived for me every week, no matter what.
We were the lucky ones--the happy miracle. We couldn't know it then, but this would not be the last time our family would be tested or that we would beat incredible odds. Outside of romance novels perhaps, people don't talk seriously about the kind of love that makes anything possible. But Michael and I have that kind of love. Even when we don't agree, that love is our mooring in rough waters. I know in my heart it was the power of Michael's love that pulled Jake and me through the day Jake was born, and it has made everything that has happened since then possible.
When we left the hospital, Michael and I had everything we'd ever wanted. I'm sure every new family feels that way, but we truly felt that we were the most fortunate people on the planet.
On the way home, with our brand-new bundle in tow, we stopped to sign the final mortgage papers on our first home. With a little help from my larger-than-life grandfather Grandpa John Henry, we were moving into a modest house at the end of a cul-de-sac in a working-class suburb in Indiana, where I also would operate my daycare business.
Glancing over Jake's fuzzy newborn head at a beaming Michael, I was suddenly reminded that it was pure serendipity that Michael and I had found each other--especially when our first meeting seemed so ill-fated.
Michael and I met while we were in college. Our seeming "chance encounter" was actually the ploy of my meddling sister, Stephanie. Completely unbeknownst to me, she had felt compelled to play matchmaker--a ludicrous notion, since I was emphatically not in the market for a beau. On the contrary, I was on the giddy cusp of becoming officially engaged--I hoped--to a wonderful young man named Rick, my very own Prince Charming. We were blissful together, and I was looking forward to our happily ever after.
Stephanie, however, had a "feeling" about me and a boy from her public-speaking class--a boy who was not just brilliant but electrifying, a boy she was convinced was my true soul mate. So she hatched a scheme.
On the afternoon she sprung her trap, I was busy in her powder room, readying myself for a date with Rick, with at least twenty different shades of lipstick and eight pairs of shoes out for consideration. When I finally emerged, I found that the person standing before me was not my boyfriend, but a boy I'd never laid eyes on before. There, in her tiny studio apartment, under false pretenses, Stephanie introduced me to Michael Barnett.
Confused by this unexpected visitor, I looked to my sister for an explanation. She pulled me aside to confide in a hushed whisper things that made no sense at all. She said that she'd invited this boy over so that we'd be forced to meet. She'd even called my boyfriend with an excuse to cancel our date that evening.
At first I was too dumbstruck to react. As it slowly dawned on me that Stephanie was trying to play Cupid, I truly thought she'd lost her mind. Who fixes up someone who's hoping her boyfriend is about to propose?
I was furious. She and I hadn't been raised to play the field. In fact, I hadn't gone on my first date until I was in college. We certainly hadn't been taught to be dishonest or disloyal either. What could she have been thinking? But as much as I felt like screaming at her--or storming out of the apartment altogether--we'd been raised with good manners, and Stephanie was counting on that.
I extended my hand to the boy, who was as much a pawn in Stephanie's charade as I, and took a seat with him and my sister in the living room. Stilted chatter ensued, although I wasn't really paying attention. When I finally looked at the boy, really registering him for the first time, I noticed his backward baseball cap, his bright eyes, and his ridiculous goatee. With his laid-back, scruffy appearance, I assumed that he lacked substance. The contrast with my crisply formal, preppy boyfriend could not have been more pronounced.
Why had Stephanie wanted us to meet? I was a country girl, from a family that for generations had lived a modest, simple life. Rick had shown me a very different world--one that included penthouses, car services, ski vacations, nice restaurants, and art gallery openings. Not that any of that mattered. Stephanie could have brought Brad Pitt into the living room, and I still would have been angry at her for disrespecting my relationship. But the contrast between this disheveled college student and the shiny penny I was seeing made me wonder all the more what my sister had been thinking.
Before long, Stephanie yanked me from my silent perch and, trying to find a bit of privacy within her tiny studio apartment, chided me sternly. "Where are your manners?" she demanded. "Yell at me later if you like, but give this boy the courtesy of a proper conversation." She was, I saw immediately and with embarrassment, right. Being rude to a stranger--a guest!--was unacceptable. Courtesy and graciousness were qualities that had been instilled in us since birth by our parents, our grandparents, and the tight-knit community in which we'd been raised, and so far I had been as cold as ice.
Shamefaced, I went back to sit down and made my apologies to Michael. I told him that I was in a relationship and didn't know what Stephanie could possibly have been thinking when she'd arranged this meeting. Of course, I explained, I wasn't angry with him--only at my sister for putting the two of us in this ridiculous situation. With that out in the open, we laughed at the utter preposterousness of it and marveled at Stephanie's audacity. The tension in the room eased considerably, and the three of us fell into easy conversation. Michael told me about his classes and about an idea he had for a screenplay.
That's when I saw what Stephanie wanted me to see. The passion and drive that animated Michael when he spoke about his screenplay were unlike anything I'd seen in anyone I'd ever met. He sounded like me! I felt my stomach lurch and experienced a kind of vertigo. Instantly, I knew that my future, so certain only moments before, would not go according to plan. I would not be marrying my boyfriend. Although he was a wonderful man, that relationship was over. I had no choice in the matter. I'd known Michael Barnett for less than an hour, and yet with a certainty impossible to explain or defend, I already knew that I would be spending the rest of my life with him.
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Book Description Vintage Books Canada 2014-07-01, 2014. Paperback. Condition: New. Paperback. Publisher overstock, may contain remainder mark on edge. Seller Inventory # 9780307362780B