It is extremely frustrating and disheartening when I go to do an online search for books, new releases that focus on autism, and every single book that comes up is the story of how a child was "cured."
They can't all be cured. They can't. And don't tell me that its all due to the hard work of a parent, or the miracle of Early Intervention. Maybe your kid just didn't have it as bad as my kid does!
Jacob began, at age 2, getting 30+ hours a week of one-on-one therapy. He was shuttled from Intensive Behavioral Intervention (IBI) to speech therapy to a specialized preschool. We tried the special, very specific diets, communicating through sign language and pictures, a variety of medications, and several different new-age ways to "bring him out of autism."
And here we are, years later, with a child who is as severely affected now as he was then. Different, yes, but still locked in his own little world that none of the rest of us can penetrate.
I want to be happy for all the mothers and fathers out there who have seen miracles. I do. But it hurts to read, time after time after time, about the 4 or so years it took a family to bring their child to normal. Why haven't my years of trials and pain and desperation paid off?
I love Jacob the way he is. I'm happy with the small advances he does make. I cheer him on and celebrate every little step forward. I love his quirks and unique behavior. He's a blessing to my life and the lives of everyone who really knows him. His story is no less important because we have not had the streotypical happy ending.
But where are the stories like mine? Lives of families who continue to search for answers. The children who are loved, appreciated, and enjoyed, and yet never fully redeemed from their private worlds? Why are all the stories so one-sided? There was a time when I devoured these success stories, looking for the secret that might unlock my sons mind. But the cures they tried haven't worked for us, and my bookshelves still sag with stories than seem unreal to me.
There have to be more kids like mine- who may never speak, may always struggle to be understood, and will always remain stuck on "the spectrum." I want to hear these stories. I need to know there are moms out there like me who pray and cry and beg for understanding.