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Wednesday, September 25, 2013

The books I can't write

Once in a while, someone suggests to me that I write a book about Janey.  It's a flattering thing to hear, and I have considered it now and then.  The problem is, though, that books about autism, like books about other topics, seem to fall into a few categories, and Janey's story simply doesn't fit the categories.  In thinking about this today, I came up with these four types of autism books....

1.  "How I Cured My Child's Autism"  This is the happy ending type of book, a book that you could flip to the last chapter of and almost always find an account of the child going off to a new school, where no-one knows they ever were autistic, and them fitting in completely.  Happily Ever After.  The books starts with a few chapters of the horror of the early years, the shock of the diagnosis.  Then comes the decision to follow a certain course of treatment, chapters about pursing the treatment to the ends of the earth, the days it got discouraging, the day there was finally some kind of amazing breakthrough, and then, as times goes by, an autistic child turning into a "normal" child.

This is not going to happen to Janey.  I used to say, barring a miracle it's not going to happen, but truth is, I don't much believe in miracles.  It's not going to happen.  Janey will be autistic for good.  There isn't a cure out there that will fix her.  I could write this kind of book about my misdiagnosed older son, but I won't, because that's not a book about autism, it's a book about misdiagnosis.   Any book about Janey will not have the traditional autism cure ending, and that right there would cut into the interest the general public would have in the book.

2.  "How The Cruel System Failed My Child"  Not as common a category, but I've read a few.  This book is about terrible schools and uncaring professionals, mean therapists---it's about fighting the system that for some reason wants to not help the autistic child.  I can't write this book, because that's not my experience.  I've had incredible luck over the years with teachers, therapists and just about anyone who has worked with Janey.  They want to help her as much as I do.  I have rarely asked for something from the schools I haven't gotten, and the few times I haven't gotten something, I truly don't think it's because someone was being mean or had a plan to not care.  I think sometimes it's easier to frame the tough life that having an autistic child brings as being caused by outside forces, and to fight those outside forces, where at least you have a chance to "win", than to accept that a child is just plain who they are.  But I've been more lucky than most in Janey's education, and that alone cuts out this book possibility.

3.  "How The Medical Profession Somehow Caused Or Didn't Endorse a Cure for My Child's Autism"  This is a big one, the one about vaccines or mercury or dairy products or wheat or oxygen treatments or pollution or PCBs or high tension wires or any number of other things.  I'm not saying that these things never caused autism, or that diets or other medical cures never helped with autism, but that's not my story.  I don't know what caused Janey's autism.  I don't think it was any one thing.  I think it was genetics, a tough pregnancy, a tendency toward auto-immune problems and an off-shoot of my bad allergic reaction to Aldomet.  But I'm not sure of any of those, and if anything, there are too many possible reasons Janey might be autistic.  I don't have a burning desire to figure out what caused her autism, because I don't think it really matters right now.  So that book is out.

4.  "My Child's Autism Showed Me a Whole New Magical And Poetic Way to Look At Life"  This kind of book uses autism as a starting point, and branches into a beautiful world of discovery, opened up by freeing oneself to see the world through the amazing eyes of the mystically gifted autistic child.  The actual child might be mentioned now and then, but more of the book is poetry, or art, or reflections on the author's one fascinating life, or thoughts on how maybe the child is the one with the right attitude and the rest of us are the ones with the problem.  Well, I can't write this one at all.  I don't think anyone who spend much time with Janey could.  Life with Janey is not poetic.  It involves lots of things that don't lead themselves to creative, eye-opening dreamy interludes.  It involves changing a 9 year old's diaper, waking up 20 times a night to screaming, trying not to get in car accidents as Janey loses it in the car, watching Kipper until your eyes bleed, and getting up the next day and doing it all again.  There are wonderful moments with Janey, yes.  I love her beyond words, yes.  But it's doing a disservice to pretend her life is somehow a life we all should strive to live.  It's doing her a disservice most of all.

The book about Janey, the one I will probably never write, is full of uncertainties.  It's full of working for years for her to be able to write a J.  It's full of devoted people that non-the-less often become discouraged by the reality of Janey.  It has no shortage of theories about her autism, but no answers.  It has moments so beautiful they might make you cry, but also moments so discouraging they would be hard to read, to say nothing of write about.  It's the story of reality with Janey, one of many, many children on this earth that have autism, but also of her uniqueness, the beauty and the tragedy of her life.  It's a book without categories, and I don't feel equipped to do it the justice that Janey deserves.


Simone Blanchard said...

You help me get through the day Suzanne. Or night to be more accurate. I think you are already writing your book. And it's beautiful and at times heartbreaking and full of humanity and honesty and joy and survival. Real survival that makes others feel less alone as they navigate their own 'trips to Holland.' Thank you. Lori

Pam said...

I would suggest your book was just outlined...autism isn't a is an experience. Good, bad, revealing, maddening, it is proverbially what it is. The beauty of it is it's individuality...and I use the word beauty loosely, but beauty lies in the way families adapt. We don't ask for it and we have no road map, but we just do what needs to be done. And we learn how to let go of control where we have none and make the most of where we do and celebrate the littlest things. And we just love our kids...there is incredible beauty there. That's the story. And in the meantime we talk and write to others like us around us and that helps. You do a fantastic job with this blog. Thank you for helping others see they a not alone..!!!

Freeyoke said...

How about "My kid made all the other child rearing books worthless"?

It took me a while to realize my daughter's life experience isn't going to track with what passes for normality. I once googled the phrase "my kid cries when someone coughs". Never found anyone on the planet within reach of a computer who had the same problem. During one phase she kept taking off her diaper and putting on pants inside out to hide what she did. The treatment was supposed to be having her get a quick cold water shower for a few seconds and I'll never have to do it more than twice. She took those showers tougher than a terrorist getting water-boarded. Never seemed to bother her much. Cure book? I keep thinking about Helen Keller and The Miracle Worker. Anything positive from my daughter comes out like "waa waa" in front of the water pump scene. The daycare teachers figure she can't hear or something but if you ask her to touch a named body part she does it. We get all echolalia from school: "baby daddy", "oh my gosh", "put away the toys", now it's time for a break". . .

"How my kids got me hooked on drugs- a role reversal"

Never thought I'd pop pills to sleep but I'm hooked on Ambien or "Zombien" until the next day. I have a 1 year-old son that tag teams with my daughter insuring I rarely have a night in 3 years without someone screaming at night. My wife's separation anxiety working the night shift combined with her Filipina Catholic guilt leads her to keep the kids at home when they should be in the daycare. Went to a sleep clinic where everyone apparently gets sleep apnea dx. What a joke! A couple thousand of dollar billed my insurance company to watch me sleep for two nights and then to try to sell me an air pump mask. The unseen doctor never read about home situation on the form I filled out. I've read a lot about parents of autistic kids on antidepressants but I'll pass on joining the Prozac generation for now.

Natalie said...


Your book is the book that needs to be written, because you will give the realities of coping with LFA a competent, readable voice. Sure, that has been done before, but not in the honest, windowed what you write your blogs, and moreover, now about LFA in girls (Or if it has, I have note yet found such a book).

Only you can decide if chronicling your life with Janey in a book is for you, but should you decide to do it, I predict with confidence that it will become much-talked about, and even if not, I sure want to read it.

Suzanne said...

Thank you to all of you. Lori, you made me cry with that. I think this IS my book. You are right, Pam, autism isn't a book really. It's something we live through. It doesn't fit well into the pages of book, because it's so individual and so hard to capture. In a way, the beauty and the joy are the hardest parts to capture accurately, because it's so easy to for those who don't get it to not understand how fleeting those moments are, and how they are not the triumphant happy endings, but instead part of the whole picture---the part that keeps us going, but still, not the breakthroughs that make books sell. Natalie, you make me want to try to write the book! I don't think I've either read a book about LFA in girls. I wish I had.

David, I love your book ideas! I've thought so often about how one of the toughest parts with Janey is that she makes all parenting books useless. I am the type that doesn't want that. I don't pride myself on having a unique child necessarily! I would like a child doing things that other kids have done before, so I can look up and see the right way to deal with what she does. The shower example is just like Janey. She doesn't react as other kids react. What would be punishment or at least a deterrent for them is not for her, and the same with rewards. I have started taking the melatonin I got to try with Janey myself every night. I feel for the 3 years without screaming at night. I think a lot of people don't quite believe how awful the sleep piece is. It's funny, as my doctor recently also wanted me to have a sleep study. Ha. I know exactly why I'm tired so much, or at least what a huge piece of it is. When you have child waking you up all night, you are tired. And I feel for you with a younger child too!

You guys are what keep me going. Thanks more than I can say.