The Best Kind of Different: Our Family's Journey With Asperger's Syndrome (32 page)

I have never asked why this happened to us, although sometimes I wonder whether it wasn’t for a positive reason. Many people wonder why, if there is a God, we have grief and sadness in the world. It seems simple to me: Without those things, we can’t truly celebrate what brings us joy. You need shadow to appreciate light. When people say, “God never gives you more than you can handle,” I laugh and reply, “I’m asking him for a little break.”

Even though life has thrown me many curveballs over the past ten years, I truly do understand how blessed I am. I thank God for all that I have. Grant may keep me on an emotional roller coaster where I feel proud one minute, sad the next, and uplifted the one after that. No matter. I still thank God every day that he gave Grant to me. He has truly been a gift in my life.

That’s not to say that everything is all better; I still struggle with grief around Grant’s issues. On the one hand, it’s great that he gets to live truthfully, and never has to concern himself with conforming or playing mind games. He’s just not capable of that, and I think it’s beautiful. He is a most loving, compassionate creature, and I believe he will find people who appreciate those qualities in him.

On the other hand, when he moves into adolescence, it will probably be very hard on Curt and me—much harder than it will be on Grant. We can see him differently than he sees himself; we can notice that he is different from the other kids. Grant can’t see that, and who knows? Maybe ignorance is bliss.

The more I learn about Grant’s Asperger’s, the more I adore him. He is a source of pure, unconditional love. He makes me laugh, he makes me cry. He
sometimes makes me want to scream. But he also makes me more compassionate. Although I can’t always comfort him and get him to behave on my terms, when he hugs me, I know it is genuine, that it is exactly what he wants to be doing. He has no other motive than to express his love for me. Words can’t describe how good that feels to a mother.

appendix

Asperger’s Resources

As I learned by being a parent of a child with Asperger’s syndrome, it’s easier to handle when you have help from other people and you’re armed with ample information. Here are some of the books and organizations that have helped me along the way. I hope they will help you, too. Remember, you are not alone. Best wishes on your journey.

BOOKS ABOUT ASPERGER’S

Asperger’s Association of New England.
An Introduction to Asperger Syndrome: Information for Families of Children and Adolescents.
Watertown, MA: Asperger’s Association of New England, October 2006.

Attwood, Tony.
Asperger’s Syndrome: A Guide for Parents and Professionals.
Philadelphia: Jessica Kingsley Publishers, January 1998.

———.
The Complete Guide to Asperger’s Syndrome.
Philadelphia: Jessica Kingsley Publishers, May 2008.

Baker, Linda J., and Lawrence A. Welkowitz.
Asperger’s Syndrome: Intervening in Schools, Clinics, and Communities.
Mahwah, NJ: Lawrence Erlbaum Associates, July, 2004.

Barnhill, Gena.
Right Address, Wrong Planet: Children with Asperger Syndrome Becoming Adults.
Shawnee Mission, KS: Autism Asperger Publishing, February 2002.

Bolick, Teresa.
Asperger Syndrome and Adolescence: Helping Preteens and Teens Get Ready for the Real World.
Beverly: MA: Fair Winds Press, June 2004.

———.
Asperger Syndrome and Young Children: Building Skills for the Real World.
Beverly, MA: Fair Winds Press, July 2004.

Buron, Kari Dunn, and Mitzi Curtis.
The Incredible 5 Point Scale: Assisting Students with Autism Spectrum Disorders in Understanding Social Interactions and Controlling Their Emotional Responses
. Shawnee Mission, KS: Autism Asperger Publishing, January 2004.

Koris, Ellen.
Asperger Syndrome: An Owner’s Manual—What You, Your Parents, and Your Teachers Need to Know: An Interactive Guide and Workbook.
Shawnee Mission, KS: Autism Asperger Publishing, March 2006.

Myles, Brenda Smith, and Jack Southwick.
Asperger Syndrome and Difficult Moments: Practical Solutions for Tantrums, Rage and Meltdowns.
Shawnee Mission, KS: Autism Asperger Publishing, March 2005.

Welton, Jude.
Can I Tell You About Asperger Syndrome? A Guide for Family and Friends.
Philadelphia: Jessica Kingsley Publishers, January 2004.

MEMOIRS

Page, Tim.
Parallel Play: Growing Up with Undiagnosed Asperger’s.
New York: Doubleday, September 2009.

Paradiz, Valerie.
Elijah’s Cup: A Family’s Journey into the Community and Culture of High-Functioning Autism and Asperger’s Syndrome.
Philadelphia: Jessica Kingsley Publishers, March 1996.

Robison, John Elder.
Look Me in the Eye: My Life with Asperger’s.
New York: Crown, September 2007.

MOVIE

Adam.
Directed by Max Mayer. 2009, in which Adam, a lonely man with Asperger’s syndrome, develops a relationship with his upstairs neighbor, Beth.

ORGANIZATIONS

Asperger’s Association of New England

85 Main Street, Suite 101

Watertown, MA 02472

Phone: (617) 3933824

http://www.aane.org/

Best Buddies

100 Southeast Second Street, Suite 2200

Miami, FL 33131

Toll Free: (800) 89 BUDDY (8928339)

http://www.bestbuddies.org/

U.S. Autism and Asperger Association

P.O. Box 532

Draper, UT 840200532

Phone: (801) 8161234

http://www.usautism.org/

YouthCare Camp

Massachusetts General Hospital

15 Green Street, Third Floor

Charlestown, MA 02129

Phone: (617) 7260060

Fax: (617) 7260064

http://www2.massgeneral.org/youthcare/

Acknowledgments

There are many people without whom this book would not have been possible, and I extend my gratitude to them all.

To Sari Botton, for listening to my stories for hours, and with your special gift of writing, helping me to dig deep into myself to do something I never dreamed I could. Without our relationship, these words would never have made it to paper. Thank you for the crash course.

To Matt Harper, my editor, for your encouragement and words of kindness to make me believe I could do this. But above all, thanks for your special talent in editing, helping to make sure the focus was kept on Grant, and what I felt so strongly about from the beginning.

To Lisa Sharkey, for taking a chance on me based on a speech, and believing that this story would help many other people.

I thank you, Katie Leighton. Without you, this book would never have happened. You insisted that this was something important for me to do when I didn’t yet understand it myself. Thank you for your friendship!

To Dr. Peter Rosenberger, our neurologist, thank you for the compassion
you showed when helping me understand Grant, and for always helping me believe it would all be okay when I couldn’t see the light at the end of the tunnel.

To Dr. Maura Shaunessy, our family physician, thank you for treating me as a friend and guiding me with such care to the next step in healing, but not before I was ready. You gave me the push I needed, at just the right time.

To Dr. Jesine Xavier, thank you for not seeing us as anything but a couple in love and showing us how to see that in ourselves. Our family has been forever changed by that.

To Dr. Jan Weathers, for helping me pull down the guard I hid behind for so many years so I could learn to laugh at and love all that life brings me—the good and the bad.

To Pastor Phil Bauman, thank you always for your teachings, which inspire me to be the best person I can.

To Mrs. Callahan, Mrs. Trikulous, Miss Hayes, and all the teachers and educators who have worked with Grant over the years, your patience and true love of teaching will forever have an impact on Grant and my family. Thank you for always seeing that Grant has so much love, and never hesitating to tell us what happiness he brought to your classroom, and to you.

To the Asperger’s Association of New England, thanks for the knowledge and resources you offer to families. I hope that more people will realize how important and invaluable your organization was to us and can be to them.

To Brenda Dater, Katy Stromland, and Christine Connelly, thank you for treating me like a regular mom who needed help. You made me feel like I wasn’t alone, and as if I could really do this. I hope I can do for others what you did for me. You were my first steps toward peace of mind.

To YouthCare, I am so proud that Grant can be a part of this wonderful camp. I hope that through my sharing of this story, others in your field will be inspired to start similar programs elsewhere. To all of those counselors, I applaud your time and hard work, and hope you realize how your patience and love changes each family like ours.

To YouthCare director Scott McLeod, Ph.D., thank you for always having the time not just for our family but all families you come into contact with who need your help. Your passion to make this an easier world for kids like Grant will change their lives.

To YouthCare counselor Christina Lazdowsky, I often laugh when I am reminded that you are twenty years younger then I am. Your wealth of knowledge, which you so generously share with me, changes our home and gives us hope that we are doing everything possible to get Grant ready to go out on his own and face the world.

To Marilyn Davis, thank you for being that extra set of hands. You have personally had two very rough years, losing two daughters, and yet you are always there for us. Thank you for telling me I “got it” when I was writing this book. Nice to know I never have to worry when you’re around. You are a treasure.

To the Medfield community, thank you for giving us the privacy and respect we needed in order to put our roots down and make this our home.

To all the coaches and volunteers in and out of the classroom, thank you for giving back. You do not get enough recognition. Know that you are appreciated.

To my friends Heidi, Jen, Linda, Ellen, Peg, Lisa J., Robyn, Lisa M., Reka, and Janet, thank you for all the hugs and checkins to make sure I was okay, and the endless tears of joy and sadness that we shared over the years—plus the ones yet to come. Where would I be without my girlfriends?

To Sue Gorham, who runs SHADE, and Ellyn Phillips, of the Philadelphia chapter of the ALS Association, thank you both for showing me how to make a real difference in people’s lives, not just by raising money, but also by touching each life with friendship. You taught me that you change the world not alone, but by touching one life at a time. Thank you to all the people at SHADE and the ALS Association for all your hard work for these most important causes that are so close to my heart. And to the good people at Families of SMA, who do so much for children like Grant’s friend William.

To my brother Michael, my sistersinlaw, Allison and Shelby, my brother-inlaw, Larry, Aunt B., Uncle Billy, and Pam, thank you for swooping in with kind words and/or visits when you could sense I was starting to fall apart. I love you all.

Mom and Dad, thank you for the foundation you gave me growing up, helping me to become a good person. You led by example and always loved me unconditionally. By the way, you always said I would get paid back when I had kids. I did. Thank you for believing in me when I didn’t always think it was possible to achieve the things I wanted. You taught me always to fight for what I believed was right. And look at that—you couldn’t get me to read a book when I was growing up, and now I wrote one! I hope if nothing else, I made you proud. I love you both very much even if I don’t tell you enough.

I can’t thank you enough, Curt, for giving me these beautiful kids. You have always made me feel like no one in the world could love me any more than you do. Your passion for life is contagious. You have always stood by your word from the beginning that no matter how hard things got, you weren’t going anywhere. Your love makes me feel safe. I love you and thank you for encouraging me on this project, and for the hours you devoted to going over final drafts, toward the end. How about this book? It’s a long way from spellchecking my grocery list. By the way, it’s official: I am funnier. It is now written in a book. I love you, Curt.

To my kids: You are the reason I get up every morning. You make me want to love more deeply than I ever knew I could. Gehrig, Gabby, and Garrison, you are each wonderful human beings who make me smile with pride every day. Being your mom is all I have ever wanted to be. I love you very much.

And to Grant, thank you for letting me share our story with the world. I wish sometimes that I could be more like you. You love life and you don’t live it the way anyone else expects you to. You are free to be exactly what you want to be. You will do amazing things in life, and I can’t wait to see what they are. I love you, Bug!

About the Author

SHONDA SCHILLING
and her husband, Curt, have been married for seventeen years. Shonda is a survivor of melanoma, an experience that led her to create the Shade Foundation of America. Curt is a former All-Star pitcher who has won three World Series titles with the Arizona Diamondbacks and the Boston Red Sox. He is also the founder of the video game development company 38 Studios. Shonda and Curt are also spokespeople for the ALS Association, raising millions of dollars and significant awareness for Lou Gehrig’s disease. They live with their four children, Gehrig, Gabriella, Grant, and Garrison, in Medfield, Massachusetts.

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Credits

Jacket design by Richard L. Aquan

Jacket photograph by Jan Cobb