From writing about Charlie so much online I have become even more aware of the difference between what I say about him, and who he is—who he really is. I don’t know how Charlie would represent himself, would think best to represent himself, or how. It’s very easy for a parent to be presumptive—-and very hard to discern where to let go and let be.
I wrote this as part of comment on an Autism Vox post on Ashley, the nine-year-old Seattle area girl who has been in the news much of late for this, in the wake of an exchange of comments among disability self-advocates and parents of disabled children.
As often as I can, I try to write here about Charlie’s speech—I need break!” and hugg!: What a difference one word can make.
I do not write here as much as I might like to about Charlie’s speech because, while he talks more and more clearly than he ever has, Charlie is a boy of few words, for whom (I more and more think) language is not his preferred mode of self-expression.
At a meeting tonight with his home ABA autism therapists, I asked Charlie’s coordinator about what she thought about a writing program. She had observed him in school last week and we talked about how best to proceed—Charlie is learning to tickle the ivories, but his long fingers drape themselves awkwardly around a pencil. His home coordinator noted that Charlie’s teacher had mentioned a program used throughout his school (for the non-autistic students, too) to learn typing.
“Great,” I said.
Perhaps we can show Charlie how typing on a keyboard is rather like playing on the piano…..
I kid you not: Charlie was singing the horn line for Tips of My Fingers tonight. We had been listening to it in the car on the way back home. As the sounds came from the CD player, Charlie—–anxiously calling—-“Daddy b’ue bankett”—stopped talking and listened.
Let handwriting come when it will, as Charlie’s speech is slowly emerging: Our first task is to keep trying to teach Charlie new and better ways to get his message across.
Autismland v. 2 (appendix) 
Keyboarding has been the key to writing for Brendan. We finally got the clue at some point during 3rd grade, when they were beginning cursive writing at school & he was still struggling with the non-cursive type. We asked that he learn to keyboard instead he did so well that our school district provided him with a portable keyboard (alpha smart) in 4th grade. Although the OCD gets in the way of typing sometimes, it’s been his main form of written communication for quite some time (&, interestingly, his handwriting has comtinued to improve, perhaps due to the pressure being off). We are presently looking into voice-recognition software because even the typing interface is not optimum for Brendan. I have promised him that he can start his own blog when he gets it up & running… 🙂
By: Lisa/Jedi on January 30, 2007
at 7:57 am
It would be really great if you can get Charlie to learn how to type. Then, you might just start to hear what Charlie has to say.
All though Edith appears to speak more than Charlie, I am looking forward to the day when I can learn what she herself has to say about everything. Her speech has been improving alot, but we are nowhere near my dream just yet.
But, we love her as she is and always will, no matter if she never is able to fully express herself beyond basic needs and echolalia.
What those parents in Seattle did to their little girl is evil, despicable…there aren’t enough adjectives to suffice.
We don’t own our children. They belong to God. They are given to us to nourish and love and be responsibly concerned with THEIR welfare. It is not the right of the parents to make such hideous choices for THEIR welfare. THEIR ease. If they don’t think they can care for their daughter, it would have been better to give her over to some one who could love her and care for her.
They may not have to worry about caring for her when she gets older. Their mutilation of her body to keep her small may result in a shorter life for her. They have gone against the grain of what nature intends for her natural development and there is no telling what the consequences of monkeying with that might be.
I’m sorry for the rant, but I am shuddering still from learning of that poor girl’s fate.
I read your post on it over at your other blog Autism Vox (a blog which I plan on reading and keeping up with one day), and I liked what you had to say. You are much more reserved than I would be if I were commenting on Ashley’s parents or that monster Pete Singer.
Charlie is lucky to have you and Jim for parents. You provide a concrete example that not all parents of disabled children are like Ashley’s parents, or the parents of autistic children like those over at “Autism Speaks”, (which is poorly titled since, their isn’t any autistic viewpoint represented over there, just “poor, pitiful me” parents of autistic children).
May God bless you and Jim. Please keep on sharing your experiences with Charlie with us and keep up the good work on your soapbox.
By: Clay on January 30, 2007
at 8:51 am
We have great hopes [future] for one with a key board, but for my older son the fine motor skills aren’t there, or more importantly the motivation to communicate.
I think that you’re almost definitely right though in that speaking words / talking, may simply not be Charlie’s preferred method of communication. I used to find that concept very difficult, but now I don’t even question it.
Cheers
By: mcewen on January 30, 2007
at 12:02 pm
I’m not sure what other things Charlie will write about and tell you, but one thing I know.
He will tell the world about his loving family that always supported him and made him feel special.
By: Club 166 on January 30, 2007
at 11:41 pm