These are some of the passages that I found particularly compelling and relatable, from the first half of the book.
I saw no beauty in this condition. Autism was a thief. The opportunities it stole from Carly were obvious; the chance to participate, to play, to learn, to fit in. It stole a sister from Matthew and Taryn. It stole energy and money and patience. It was stealing our daughter, bit by bit. I saw no beauty, only evil. What force of good attempts to rob a parent of the love of a child?
... a main tenet of ABA is to include parents in on the training so they can provide consistent direction. Tammy and I marveled at their patience, sitting on the floor and supervising their youngsters as they put colored pegs in holes for a reward. The mere thought of it made me yawn. I found that the style of communicating with my child in the manner of a therapist turned me from a parent into an instructor, further distancing me from my daughter rather than bringing me closer.
After three or four years of ABA, it was evident that we would not have the same outcome as the family who had introduced us to it in the first place. The rewards were meager, and yet there were rewards. We persevered, propelled by Howard and Barb's devotion and the data provided by therapists indicating small improvements. I came to think of us as a slow-grinding train. I couldn't fathom our destination, but took solace in the belief that we were at least moving forward.
(This is how I ended up feeling about ABA therapy. It didn't bring about the miraculous upheavals in behavior and communication that we were led to believe it would. And I knew it wouldn't - I knew that they didn't just have autism - they have Fragile X. It's in their DNA. Nothing short of a medical, genetic miracle was going to change it. But I listened to their statistics about how many kids who go through the ABA program go on to attend kindergarten without needing special assistance. And a little part of me allowed the hope to creep in. ABA was very beneficial to AJ and Zack, but they aren't among the "cured.")
It wasn't that I doubted Barb and Howard's veracity, but what they were telling me was as incomprehensible as learning that a relative I believed to be dead was in fact alive.
"Carly, type five words and I'll give you the chips," promised Barb.
A small, sly smile seemed to cross Carly's face.
"Five words," she typed.
(They were amazed at Carly's cunning ability to manipulate to get what she wanted, and her humor, once she began speaking - well, typing. Most children, when they first start talking, are much less mature and tend to communicate simply - with one word. Carly first communications were deep and surprisingly intelligent thoughts. I wonder that about the boys sometimes. If they could, would they tell us to quit the baby talk that we tend to use? I try not to, but you tend to get on their level, and they generally only use one or two word sentences.)
"Are you ready to show Mom that you can spell?" Barb asked Carly. It was early fall of 2005 and Carly had recently had her second breakthrough - typing in full sentences.
"she does not like me. She just likes my sister," Carly responded. Her words, in some ways, were all the more powerful because her face did not show any sense of emotion.
(That is one thing autism has taught me. I didn't realize how very much nonverbal communication entered into our understanding and appreciation of each other. What you say carries only half the weight when your face doesn't express emotions to go along with your words. It's why we need to add smiley faces to emails.)
Howard was able to cajole and convince Carly to behave in ways Tammy and I could not. And when Carly erupted into flailing tantrums, he had the patience to whisk her away and get her refocused. For both Tammy and me, the wailing set off internal chemical reactions that left us filled with despair. But Howard was firm and calm and seemingly unscathed by Carly's temperament.
(I read this passage and silently bellowed to myself "YES!" That's what it is. That's why I can't deal with Zack when he screams. It makes me feel something as his mom that it doesn't make other people feel. I have a gut reaction to it that is hard for me to describe.)
Even small children can tell their parents when something is wrong. But with Carly we were always guessing. Something as simple as stomach pain or a headache had to be intuited. Happy? Sad? Anxious? Carly was never able to provide insight into what drove her actions. Doctors would ask us if we thought she was in pain as if we had a telepathic connection - adding frustration to an already hopeless experience.
(Yes - doctors, therapists, teachers - everyone is always asking me about the boys feelings, likes and dislikes - as if I had some telepathic connection. I wish I did.)
"Carly is becoming more human," Taryn said to Tammy...
(I don't think people realize how necessary communication - real, descriptive language - is to relationships. It's hard to really know someone who can only tell you when they want "juice" or "chips" and can't ever tell you complex thoughts like "I loved lunch today," or "I felt sad today when no one would play with me." I think Carly's sister was commenting on the fact that she was able to know her sister so much better now that she could communicate her thoughts.)
To be continued when I finish the book......