We use various "reward" strategies to give her incentive to sit and focus. One example is a token board where she collects tokens for each portion of work she completes. After she collects a set number of tokens, she gets to take a break, play with a toy, have some potato chips (she loves potato chips) or watch Ellen DeGeneres, who is her favorite celebrity. Then, there are times when we use no reinforcers at all and obviously the goal is to fade them completely at all time. She is becoming more proficient, and we're hopeful that in time typing will become easier. Some days are faster than others — her mood will often dictate that.
McKenzie: Did Carly ever use facilitated communication or has she always typed independently?
Carly's Parents: She has never used facilitated communication. Our speech pathologist has never supported this strategy, and it is largely out of favor. We started with picture exchange, simple sign language, PROMPT speech therapy (it's important to remember that Carly's lack of speech is due to a motor-planning issue) — all before she learned how to read and spell.
I am seeing comments online that people are doubting her ability to do this independently. Trust me — we have nothing to gain by misrepresenting her abilities and, while we don't know that all kids with autism will be able to do this, we also don't think that Carly is one in a million. She has been fortunate enough to have consistent, ongoing and intensive therapy for many years — probably long after many experts would have told us to stop — that we weren't getting our money's worth in terms of cost/benefit.
Carly types on her own. We do not cue her except to remind her to focus on days where she is very fidgety. We do not touch her hands or her fingers to guide her. What would be the point of that? Yes, there are often people sitting beside her, but she also often sends us out of the room. She wants her privacy too. She loves to go on MSN with her dad or with other friends and family members and she does not want us breathing over her back at times, just like any other teen. To the doubters out there, she initiates dialogue or thoughts on her own. A small example: she was sitting at our friend's kitchen table last month. It was a Sunday morning and there were many people there for brunch because her Bat Mitzvah had been the night before and we had many out of town guests. She was just sitting there with her laptop open and she wrote, "I want to thank everyone for coming" so I suggested she take her laptop around and show that message to everyone, so then she wrote, "Mom you do it".
When we told her we were taking her to New York to see a doctor there, she wrote, " I want to see ground zero and the lady with the torch." We had no idea she knew about either of these. These are just two small examples of Carly independently taking the initiative to talk to us. There are many more.
McKenzie: What are your hopes for Carly now?
Carly's Parents: We now think and hope she can go to college. She tells us she wants to be a cook and a writer, so who knows? A lot of you are suggesting she write a book. She has actually started a short story called "The Elephant Princess." It is currently 15 or 16 pages long, and it is really imaginative and engrossing. Her character in the story is Carlito, who is a gecko. Once she finishes it, I can ask her if she will share it with everyone.
We obviously want her to be as happy and as independent as possible as well and, really, she will be the one who shows us what is next for her. I think this experience has really increased her confidence and self esteem. I know she is concerned that kids her age look at her funny or that she frightens people with her sounds and her movements. I am hoping she will feel better about herself now that she knows how much she has helped others and that she will continue to do so.