I’ve not gone into great detail about how hard last summer was, but it was pretty brutal. After pinpointing the sensory processing disorder with both boys, we had to face it head-on. Benjamin, especially, was incredibly high-needs. Is high needs, but we’ve become accustomed to that now. At the beginning of last summer, our Occupational Therapist was able to explain exactly what was going on and provide a ton of feedback on how to help Ben, which was great except then we actually had to implement everything, and that ain’t easy. He needed regular intervals of heavy work, tactile input that didn’t overstimulate, deep massage, and help planning tasks, among other things. Suffice it to say, the summer found me laminating little squares of paper with tasks like “choose breakfast” and “take off pajamas,” then affixing Velcro to the backs.
While Beth Kephart’s son, Jeremy, had a different and more acute set of needs, her 1998 memoir A Slant of Sun particularly resonated with me. It’s a glimpse into the challenge of trying to help a small child with high, high needs. Kephart’s language is poetic and evocative of the way parents live from one trial to another error as they search for the right school, the right professional, and the right parenting methods for this unique child in this very moment.
Jeremy is diagnosed with pervasive developmental disorder not otherwise specified, which offers his parents little guidance, beyond don’t let him fixate for too long on his cars. Kephart is home with him while also maintaining a freelance writing career, but her quest to help her son takes over all aspects of her life. It is draining: emotionally, financially, and physically, yet Kephart remains steadfast and committed to her little boy.
If A Slant of Light has a weakness, it’s that it evades the sense of hopelessness I feel so often. Even when Kephart is writing about the way her son completely shuts down and refuses to join in at school, she never seems to give up believing she can help. As a mother who desperately wants to give up much of the time but then doesn’t because parents don’t get to give up, it’s humbling to imagine that other mothers face their children’s special needs without that feeling. I don’t know if Kephart really did feel that way but kept it out of her book or if she’s just a better woman than I am.
I left the book with the desire to email Kephart and ask her: “Now that he’s all grown up, how are things? Is he happy? Living a fulfilling life? Has he read this book? Is he OK with you having written such personal things about him?” Standing where she stood 13 years ago, and writing about my kids in a similar vein, I want to know these things. I want to know it’s all going to be OK.
Remind me to check for a sequel. Right after I’m don’t helping Benjamin plan how he’s going to put on first one sock, then the other.