Capturing Autism

Early on, when Brooks was first diagnosed, I spent most Saturday afternoons walking around New York City listening to my iPod and crying. Quite simply, it hurt too much that Brooks’s brain didn’t work properly. Since there wasn’t a lot of opportunity to cry while I was in the throes of saving his life, which was 99% of the time, walking was my outlet. And, of course, nobody noticed, which is one of the reasons I love this city.

It was during one of my tearful outings that I happened upon A Slant of Sun on a bookstore shelf. I devoured it then, and I find myself re-reading passages to this day, sometimes just to revisit an old friend, and other times, to inform Brooks-related decisions. Although it was written over 10 years ago, it is timeless, which is all the more incredible because autism books generally date quickly. But this is less a “how-to” book about what families should do after a diagnosis, and more a thoughtful, insightful and passionate look at what happens to these families. As author Beth Kephart describes her son Jeremy’s PDD (Pervasive Developmental Disorder – Not Otherwise Specified) diagnosis, she explores the definition of normal and struggles to help her son without destroying his essence.

Kephart’s deep and enduring love for her son is palpable on every page. She admits that the only response she can bring herself to utter to people who tell her that her son is handsome is: “I know.” She is “never modest about [her] son. There’s no disputing how beautiful he is.”

Every obsessive behavior or speech abnormality or food intolerance is not looked upon as an undesirable trait to be cut out of him, but rather studied as a puzzle piece of his heart and soul. Why is this little person doing this? No clue is too small to investigate, and there are no limits on time and energy spent in this pursuit.

Her aversion to “fixing” her son is familiar to all autism parents, and since Jeremy’s huge imagination often traversed into obsessions, she struggled mightily with how to reign it in without damaging it, and even questioned whether she should reign it in at all. She describes a playground scene on a bitter-cold afternoon where Jeremy has dreamed up a scenario where a plane with a war hero will soon fly over their heads. His anticipation is completely joyful and full of rich, colorful details, and she struggles with her response. She knows what she “should” do therapeutically: tell him that there is no plane coming and that it’s cold and they need to go home. But she can’t bring herself to do it: she knows somewhere deep inside that if she tells him she doesn’t believe the plane is coming, he might be disappointed in her and see “only a mother, nearly middle-aged, who has lost her capacity, her vision.”

Although she doesn’t deny her Herculean efforts to help her son, in the end she credits him for lighting the way. (Similarly, whenever I’m complimented on how far Brooks has come, I immediately respond that he did all the heavy lifting.) And though most of her decisions are based on instinct, she openly and honestly questions each one of them, and admits that she often doesn’t really know what she’s doing.

In the current melee of autism books about overnight cures and miracle recoveries, A Slant of Sun is a blast of welcome fresh air: a beautifully-written memoir about the painstakingly slow, all-encompassing and ever-hopeful reality that takes over your life when your child gets diagnosed.

Although I don’t think that Kephart has written about this subject for years, she currently has her own blog (which I find myself visiting often). As for her son, Jeremy? He’s in college now: she just blogged about him the other day.

Author’s Note: If you’re planning to read “A Slant of Sun,” please support Insideschools.org with your a portion of your purchase at ShopForCharityNow.com.

This post was originally published on Inisdeschools.org.