Kate Swenson - Forever Boy: A Mothers Memoir of Autism and Finding Joy

Advance Praise for Forever Boy

Until the late twentieth century, autism was hidden in plain sight. Now its a public health priority and focus of extensive research. However, it remains a black box. While we wait for answers, extraordinary people like Kate Swenson, through their dedicated and resourceful efforts, have taken it upon themselves to create a nurturing environment in which children like Cooper can grow and thrive. Forever Boy will be an inspiration to all who face the challenge of caring for special needs children.

Dr. Jeffrey A. Lieberman, Lawrence C. Kolb professor and chair of Psychiatry, Columbia University

Forever Boy is a candid journey through the beauty and battles of having a child with autism. Kate blends wit and wisdom in an unapologetic account of marriage, motherhood and unconditional love. She captures the struggles, expectations and reality all parents face while advocating for their children. Its a story of unexpected loss, enduring hope and most importantly, newfound understanding. It should be mandatory reading for teachers or for anyone who has children or is thinking of having children.

Colin Balfe, founder of Love What Matters

Kate Swenson has pulled the curtain back to show first-hand the challenges of life with a child with severe autism. For those who are in the dark about the disability, or know little about it, her story will be an eye opener.

Valerie Gilpeer, author of I Have Been Buried Under Years of Dust

Forever Boy

A Mothers Memoir of Autism and Finding Joy

Kate Swenson

To the boy who smells like the wind, the boy who saved me, the boy who healed our family, the girl who completed us and my husband for never giving up on me, thank you.

Kate Swenson is the creator of the blog and Facebook page Finding Coopers Voice. She speaks regularly about autism, parenting and motherhood, and is a contributor to Today Parents, the Today show and the Love What Matters blog. Her mission is to create a safe space for families of children and teens with special needs to come together and laugh, cry and support each other. She lives in Minnesota with her family.

C O N T E N T S

I dreamed of being a mother from an incredibly young age. While some little girls daydream about being a ballerina or becoming president, I wanted a family. I would fantasize about it often with my Barbies and baby dolls, playing house well into my tweens.

When I moved into my first home with my fianc, my mother dropped off numerous tubs of my childhood belongings in my kitchen. It appeared she had saved everything. In the first tub, I found awkward photos of me in thick glasses with a bowl cut (my mother called it the Dorothy Hamill and said it was darling...it was not), faded second-and third-place ribbons from elementary school track meets, handwritten notes to friends, and countless diaries with little keys. The secrets of my life inside.

Brody and I are going to get married and have five babies and dogs and horses and live in a big, beautiful house. We will have three girls and two boys. I will be a veterinarian. He will play professional basketball and we will be in love forever. Our life will be perfect.

I was seven, and it was obvious I had my whole life planned out. But not once did it occur to me that one of my babies could have a disorder that would prevent him from communicating even the simplest need. Or that his body would grow, but his understanding of safety and independence might not. Nobody thinks it could happen to their child.

But the thought nagged me for years after we learned the diagnosis. What if I had known? What if someone had whispered the secrets of my future in my ear during my pregnancy, as if they had a crystal ball?

You and your baby are destined for a world different than most. You will call him Cooper, yet the world will call him disabled.

It will be hard at first. You will experience suffering, struggle, and sadness, but eventually you will overcome it, and catch a glimpse of the unbelievable joy he brings to your world. You will come to understand that in fact, you are the lucky one.

But the beginning, well, it will nearly break you.

If I had been warned about autism and all it would change, would I have run away crying? Or laughed out loud? I guess Ill never know. I do know that nothing prepared me for the way stress and worry would overshadow a large part of my life for years to come. And I dont know if anything truly could have. It was something that I had to experience for myself.

You may read the first chapters of this book and think its a sad story. Please keep going. Youll see it is not.

You may also think its a story about a boy with autism. And while yes, Cooper is certainly the star, it is also the story of me as a mother, finding my way down an unexpected path.

It is the story of mistakes and triumphsof altered dreams and agonizing hope.

A story of a marital compromise, and sibling rivalry, and the shifting perspective of advocacy, as I tirelessly find new ways to give my nonverbal boy a voice in this world.

In the end, its about discovering exactly who I was meant to be.

And I owe it all to my son.

Jamie and I met right after I graduated from college, during an internship I took at a large bank. I had no desire to work in banking, none whatsoever, but I wanted to make money and get my foot in the door somewhere. Spending my time with professional men and women seemed like a logical next step toward adulthood.

I was just coming out of a relationship and not really looking to date anyone. As a woman who always had a boyfriend, for the first time in my life I had the freedom to do whatever I wanted, whenever I wanted. I spent my summer working two jobs and having fun with friends.

Then I met Jamie, five years my senior, and far too serious for me. He was working on a promotion from banker to branch manager and had no time for me. In fact, many years later he would tell me he nicknamed me the flouncy intern in the short skirt and ratted me out to our boss for taking long lunches. We were at different places in life, or so I thought. But midway through the summer, we found ourselves together at a softball tournament, the rest of our coworkers canceling last minute. We decided to make the best of it and ordered a pitcher of beer on the patio of the bar.

He spoke of his future plans, his dreams of owning a little house and a fishing boat, and his close relationship with his family. When he got up after a bit to go catch for his softball team, I was a goner. I dont know if it was the tight white baseball pants, the fact that he was a real grown-up man and different than everyone else I had dated prior, or a combination. I spent the night daydreaming about a future with Jamie.

A year later, on a beautiful fall night, he proposed on one knee. I said yes before he could even finish the words, Will you marry me? The next year flew by. We purchased a two-bedroom home in Two Harbors, Minnesota, a tiny city located on Lake Superior, where the average high temperature in the summer was sixty degrees. Neither of us knew anyone there, but Jamie had been promoted to manage two smaller banks up the North Shore, so we decided to make it home. I had said goodbye to my career in banking when I found out how much direct sales was involved and took a position as a marketing coordinator for an assisted-living facility. We spent our time living a rather simple life. Just starting out in our careers, neither of us really made any money, but we didnt know any different. We bought that old fishing boat Jamie had told me about on our first date and spent most of our time outdoors and fixing up our old house. And we planned our wedding.