Note: I contacted Jeni Decker a couple of months ago to request a copy for review of her book I Wish I Were Engulfed in Flames, having heard about it on various social networking sites. Her publisher sent a review copy and will send another free copy to the lucky giveaway winner. Other than the review copy, I have not received or been offered any sort of compensation or blog promotion for my review.
Okay, kids. Let me preface my review of I Wish I Were Engulfed in Flames by Jeni Decker with a warning. If you are rendered insensible from frank discussion of topics such as homosexuality, masturbation, and poop, please gather your belongings and locate the nearest exit. Because, though I adore and value you as much as any of my readers, there is no point encouraging you to read a book that will upset your constitution. Each and every one of us have preferences in our reading material. If you are offended by these topics, think mothers should never share potentially embarrassing stories of their children, or are a stalwart social conservative who can’t take a little liberal ribbing – by all means find another book to read. (This is not to be construed as a political stance of my own. I have friends all over the political spectrum and am quite happy to remain that way.) Jeni Decker is unapologetically true to both herself and her opinions and does not mince her words. Some of you might get offended. Those of you with more relaxed literary tastes, however, should remain for the rest of my review.
(Jeni Decker should kiss me for that warning, by the way. It’s enough to tempt curious souls, don’t you think?) 😉
I Wish I Were Engulfed in Flames is parts memoir, manifesto, and poetry all rolled into one. They come at you in separate bursts that end up telling the story of Jeni Decker’s admittedly chaotic life. Decker, mother to two children on the autism spectrum and wife to a husband in renal failure, is a woman struggling to deal with the challenging hand life dealt her while managing to pursue a successful writing and film making career. That she manages to do it with such humor and unflinching honesty is to her credit. But she does — and all while maintaining a healthy perspective of “Well, why not me?”.
And all prior teasing about shocking content aside, spectrum kids do have real issues with socially acceptable behavior. Shocking content is often in the job description of parents of ASD kids. My child is too young to worry about that right now, but I have taught spectrum kids before. I remember how horrified I was the first time one such child demonstrated a lack of awareness of sexually inappropriate behavior. I was caught between really not wanting to address it, pity for the oblivious child who had to have it gently explained, and a sense of duty to do so anyway. Puberty, suffice it to say, is rough on kids with autism. And rough on the parents/caregivers who love them. Many of Decker’s funnier stories are related to her kids attempts to make sense of the sexual world, its nature and mores. They, in the direct way of the ASD child, ask uncomfortable questions that Decker feels no more ready to answer than any of the rest of us. So, she does it in the only way she knows how – being herself – with often hilarious yet touching results.
Interspersed with her irreverent humor are glimpses into Decker the woman – an artistic soul deeply in love with and committed to her children, yet passionate in her beliefs and individuality.
“I am one person with many facts, each one as important as the other, and I don’t believe one facet negates the other.”
If you share her politics, you’ll get a kick out her humor. Even if you don’t, try to overlook those jabs and appreciate the book for what it is – a brutally honest portrait of the life of a parent with multiple children on the spectrum. Lightning often does strike twice in autism families. (It struck three times in mine.) We need to hear these stories and share these perspectives.
What impresses me more than Decker’s wit, however, are the subtle yet poignant moments demonstrating the very real differences in thinking between autistics and neurotypicals. In one chapter, Decker tells the story of an impossible dream of her son’s and his attempts to have a particular company contact him about his idea. He perseverates on it, and she must endure months of his asking for mail every day. At one point, Decker even wrote the company herself – begging them to respond to her enthusiastic but oh-so-different little boy. They never did. She relates notes home from teachers about disastrous school days for her children. Days that obviously hurt the mother inside even while Decker maintains a brave and defensive stance. And strewn throughout her narrative are her son’s touching, often unintentionally moving journal entries and poems.
“I wonder if there are hidden colors in the world? There just might be hidden colors in the world…”
I liked I Wish I Were Engulfed in Flames. There are moments throughout the book that took me by surprise in their heartfelt rendering of the uniqueness of the autistic mind and the complexities of preparing these children of ours for the perceptions of the world. I left it thinking how, though similar in our joys, frustrations, and fears for our children, we are all actually very different in our individual journeys with autism. We all have stories to tell. And we must be fearless in hearing them. Decker says it best here:
“There is a difference between resignation and acceptance. You have to eat what’s on your plate, not shove it around until it resembles something else. But you’ve really made it when you can find the good that comes out of the pain. Pain and joy are equally necessary in life — without one, you wouldn’t be able to recognize the other. What I’ve learned about life is that it’s about getting from point A to point B but everyone does this differently…With each living person, history is left to judge what their contribution to the world might be. Labels, supposedly, inform who we are, but the beauty of life is that it enables us to accept or reject them at will. We can allow others to define us, or decide for ourselves who we really are.”
To enter for a free copy of I Wish I Were Engulfed in Flames, please leave a comment below. I will announce a winner on April 18th. Good luck!
For more reading by parents of multiple spectrum kids, check out Adventures in Extreme Parenthood by Sunday Stillwell.