Thursday, July 08, 2010

My Reality is Not Reperesented in The Media.

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.


Anonymous said...

I'm with ya. I am moved by your post and love your site (which is just stumbled on via autismspot) and kids. Our son, now eleven, is not "recovering" anytime soon. He and are are now watching Blues Clues together on the couch, me typing and he laying upside down, head on the floor and feet up and the wall. He he happily talking to himself and the TV characters with great enthusiasm, if not intelligible speech.

Our families, which we depend enormously on the folks with kids who require less company (because they can get a lot of writing and advocacy done for the rest of us) really need our own virtual conversations to stay good humored.

Amy said...

I am also with ya on this post! It kind of stinks that all the kids we know are higher functioning than Nick. I almost felt like screaming at this mom we met at the YMCA one time. She shared that her 2yr old was autistic...Really?? This kid was pointing, had excellent joint attention, and was acting as typical as can be. She then started to preach on the Floortime method they used and how much it has helped her son. Seriously wanted to punch her. In the face. Nick is six yrs old, barely speaks, is not toilet trained, despite being in therapies since he was two. Earlier this year we had to start him on medication to stop him from hurting himself. He would bite himself,hit himself, and bang his head on a daily basis. He would spend half of his therapy sessions on the floor screaming. My own mother came to visit for ten days and had no idea how we did this on a daily basis. Some days it is just not fair!

Anonymous said...

Preach it sister! My son is 4 and has been in early intervention since he was two and we also tried many things not to cure him but to stop the self injury. He has great joint attention, points, can be flexible when his schedule is changed (but don't interfere with his rituals and obsessions) and acts typical as well but he still doesn't speak except in echolalia and far from potty trained. We have huge tantruming, biting himself and a strong compulsion to hit himself and to headbang. We had to medicate him with really strong meds to stop him because he was headbanging 20+ times a day and it was very hard.

His previous developmental pediatrician said that she really questioned his autism diagnosis because he made eye contact with her. I told her that Noah has had 3 diagnoses of autism and every test that exists and each one said autism. Did she not read his file? She attributed to all the early intervention he received. I don't know, we had therapist come in our home every other week until he was 3 and then he started at half days at public schools. The biggest difference for us has been taking him on playdates but that doesn't stop the self injury. I am also sick of all the cockamamie advice that everyone offers me on how to cure my son. Plus it is so hard to find other people in the world who have self-injurious kids and all the typical sensory things DO NOT work.

Anonymous said...

This may be a bit late but if you have not found the book you were looking for, I am please to tell you that "The Accidental Teacher" by Annie Lehmann is not the kind of book that brags about the progress of a child with ASD. I think overall this book preaches acceptance and love. The story was set in the early 80s though. Hope you get around to reading it!

M said...

I'm so discouraged at my efforts to get our son to stop hitting himself. He had stopped hitting me for a few months but this week got me two days in a row, the second time I really thought he had broken my nose and had to call my husband to come home. Just checking your blog and this post caught my eye. You are such a beautiful writer, Alaina!
--Mindy (DeeDee)