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.
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Alaina, Your pain is
Alaina,
Your pain is palpable, for good reason. I appreciate you sharing your raw emotions, frustrations and questions above.
While reading your post, I started thinking about a man I recently met (Dan E. Burns) who wrote a book about his 22yo son with Autism. Even though he and his ex-wife spent years and years on treatments and therapies for their son, Ben, the outcomes have been far less powerful than they expected. Though I haven't read it yet, I just got a copy today and look forward to reading SAVING BEN: A FATHER'S STORY OF AUTISM. (http://www.amazon.com/Saving-Ben-Fathers-Literary-Nonfiction/dp/15744126...) The book is a Mayborn Literary Nonfiction Award Winning book from UNT...Dan has a true gift with words. If you do read it, I'd love to chat with you about it and get your impressions...I wonder if it might be just the book you're searching for...
Also, Dan just joined the Dallas Moms Blog as a weekly contributor; here is his initial (powerful) piece first post (http://momsblog.dallasnews.com/archives/2010/07/dan-raising-a-son-with-a...) and there was also recently a great story written about him and his son (by Nancy Churnin) in the Dallas Morning News...(http://www.dallasnews.com/sharedcontent/dws/ent/books/stories/DN-bk_auti...).
Warmly,
~Leigh Attaway Wilcox
Little Changes
Stories like yours do exist. I am a Language Stimulation Specialist and at our office I see the little advances children make that may seem minimal to others, but they are big advancements. Everyone likes to have a "I cured my autistic son/daughter" story. But the reality of the fact is, that we do not even know the cause for autism, so how are we going to know a definite cure? I believe between intervention and modification of behavior a child can improve. And little by little, you will see those little changes. Jenny McCarthy loves to ramble about how she cured Evan her son. Which gives many of her followers a false sense of security and hope. Just know that you are a wonderful mother and that Jacob is a wonderful and unique kid. You do not need a "cure" story, because at the end of the day, Jacob is his own person, and his personality and way of being is who you love.
Thank You
Thank you so much for both of these comments. I admit to being a little down when I wrote this blog, and when I am feeling sorry for myself isn't the best time to be writing. I look forward to reading Dan's story.
You're welcome!
Alaina, you're most welcome for my comment, but I did want to add that sometimes the BEST times to relieve our heartfelt emotions are WHEN we are the most down and those are sometimes the pieces most connect with, so I applaud you for sharing in such a candid way!
I'm wondering, have you read Dan's book? I still haven't had the opportunity, but it is next on my reading list; and as I said before, I'd love to "chat" about it sometime!
All Best,
~Leigh Attaway Wilcox
Ours is like yours.
My son was diagnosed at age 18 months. We did private ABA, speech, OT for 1 1/2 years. Now he attends a preschool autism classroom that is considered one of the best in the country. He is now 3 1/2 years old and he is happy as can be but non verbal. Looking at the other kids in his classroom, he is definitely the lowest functioning. I have started to refer to the news stories about the autistic kid giving his high school's commencement speech, "cures", ect, as cases of "boutique" autism. I found your blog and return to it often because I relate to your story and an searching for a view into the future. If you haven't read Susan Senator's blog you should.