I'm making this thread to put my goals and progress on this project somewhere. Through some events in my life and comments and encouragement from some great folks here, I am working on a nonfiction called What We Can't Tell You: About Autism.
Remember Chicken Soup for the Soul and all its subsequent flavors of soup? Think that, but the whole story, not just the good parts. One in sixty eight children now are affected by an autism spectrum disorder, so that puts the number of children, parents, caregivers, friends, etc. affected in the millions. We have some stories on the bookshelves about overcoming autism, and they usually go something like "One person's journey to overcome autism." There are also one-liners all over the internet about how "I wouldn't change my child with autism for the world."
These aren’t rosy stories about how great things can be. Those books are great, I have them on my shelf at home. That’s not what this is. This is another part of the story that needs to be told. These are real stories and real experiences that happened to people, kids on the spectrum and to us, as parents of kids on the spectrum. We love our kids, I love my son unconditionally, but I don’t buy into that whole “I wouldn’t change my child’s autism for the world” line. I would. I would take it away from him in a second. Autism isn’t what makes my child unique or special. His humor, his love of art, his passion. Those things make him unique and special. Autism makes it harder for him to express those things, and it steals away some things that many parents take for granted. Like hugs—I rarely get them. Or “I love you”s—it makes him uncomfortable to say it back, so he compromises and says “I love me too.” I know what he means, but still.
We, as parents, put our “brave face” on when dealing with the world, and that face fools everyone, even other parents of special-needs children. We can’t take that brave face off for fear of judgment, or embarrassment, or seeing that look of pity on someone’s face. So we keep it on, and we get lonely, and we feel guilty because we only see “brave faces” from other parents too so we doubt if our feelings are normal. So we feel even more alone.
Persons on the spectrum, likewise, are taught to control their emotions and to do their best to fit in with the world. They’re told to try to get along according to the rules of a world they don’t understand—to act “normal.” So they feel even more alone.
The fact is, we’re not alone and we have stories to tell. Stories to help others understand some of the things we go through, and stories to help each other know there are others out there struggling with some of the same things. Our tales include our journeys and our high times, as well as our falls and low times. This book will share stories from dozens of people who are either on the spectrum or care for a person on the spectrum. We'll laugh, we'll cry. We'll remember that we are not alone.
_____
I get carried away sometimes, but this is a thing I'm passionate about, so you'll have that. And I confess I wrote much of the above yesterday. The stories will be anonymous, names changed. Anyway, things I have done so far:
Next steps now through end of April:
Things I'm also gonna do, because I can:
[*] Ask some well-known people for a story or a few words because why not?
That's it.
Remember Chicken Soup for the Soul and all its subsequent flavors of soup? Think that, but the whole story, not just the good parts. One in sixty eight children now are affected by an autism spectrum disorder, so that puts the number of children, parents, caregivers, friends, etc. affected in the millions. We have some stories on the bookshelves about overcoming autism, and they usually go something like "One person's journey to overcome autism." There are also one-liners all over the internet about how "I wouldn't change my child with autism for the world."
These aren’t rosy stories about how great things can be. Those books are great, I have them on my shelf at home. That’s not what this is. This is another part of the story that needs to be told. These are real stories and real experiences that happened to people, kids on the spectrum and to us, as parents of kids on the spectrum. We love our kids, I love my son unconditionally, but I don’t buy into that whole “I wouldn’t change my child’s autism for the world” line. I would. I would take it away from him in a second. Autism isn’t what makes my child unique or special. His humor, his love of art, his passion. Those things make him unique and special. Autism makes it harder for him to express those things, and it steals away some things that many parents take for granted. Like hugs—I rarely get them. Or “I love you”s—it makes him uncomfortable to say it back, so he compromises and says “I love me too.” I know what he means, but still.
We, as parents, put our “brave face” on when dealing with the world, and that face fools everyone, even other parents of special-needs children. We can’t take that brave face off for fear of judgment, or embarrassment, or seeing that look of pity on someone’s face. So we keep it on, and we get lonely, and we feel guilty because we only see “brave faces” from other parents too so we doubt if our feelings are normal. So we feel even more alone.
Persons on the spectrum, likewise, are taught to control their emotions and to do their best to fit in with the world. They’re told to try to get along according to the rules of a world they don’t understand—to act “normal.” So they feel even more alone.
The fact is, we’re not alone and we have stories to tell. Stories to help others understand some of the things we go through, and stories to help each other know there are others out there struggling with some of the same things. Our tales include our journeys and our high times, as well as our falls and low times. This book will share stories from dozens of people who are either on the spectrum or care for a person on the spectrum. We'll laugh, we'll cry. We'll remember that we are not alone.
_____
I get carried away sometimes, but this is a thing I'm passionate about, so you'll have that. And I confess I wrote much of the above yesterday. The stories will be anonymous, names changed. Anyway, things I have done so far:
- Made an informational sheet and consent form
- Sent an email to the director of local autism awareness group that is having annual walk for autism on Apr 8 for permission to hand out information sheet, waiting to hear back
- Started researching book proposals
Next steps now through end of April:
- Gather a few interviews/stories, enough to help me with an outline of the book
- Work on book intro and chapter intros
- Write a book proposal
Things I'm also gonna do, because I can:
[*] Ask some well-known people for a story or a few words because why not?
That's it.