We think that the above mentioned report does not give a fair and true statement on my daughter’s behaviors and progress as follows:

1. Under Behaviors Section, it states "Ting ting’s inability to understand cause/effect, contingency relations that is necessary for the use of systematic behavioral intervention strategies." This is a very unfair judgement on my daughter.. First, Ting ting’s ability to understand cause/effect is well recognized by various sources, such as school, OT/PT therapists, and parents. Secondly, since Ting-ting is a rett syndrome girl, her interactions with people and environment is very different from other children, especially those with Autism. Most of her interactions are through strong eye gaze for communications vs. responses through movements, which require a lot of motor planning. A more fair statement to address her behavior during the quarter of training under CARD supervision should be restated as: "Ting-ting demonstrates the ability to pickup and grab on to a fork with a piece a food already speared for her.. This behavior has been shaped from the initial level at which Ting-ting was only picking up food item directly with her bare hand. She is currently working on spearing of food using fork. This procedure requires her to pick up a fork, which she consistently demonstrates, and wait for assistant to spear food. Another behavior Ting-ting demonstrates is the touching of a clear cassette case filled with food item along with an empty cassette case presented in the same time. Ting-ting is then rewarded with the same item enclosed in the cassette as she touches the case. Both cassette cases are attached to a binder via Velcro strip and exchanged either right or left sides. Ting-ting demonstrates the ability to choose the preferred item by touching, cross the midline, the cassette with food presented on either left or right sides."
2. Under Therapy at Home Section, it states "At this time, Tiffany is not making the rate of progress of showing the cumulative benefit that warrants continued participation in the CARD program." This is a statement lacking support data and baseline information to show the rate of progress needed under CARD for the disability of her category, i.e., rett syndrome, or related disorders. Ting-ting received her education at home under CARD supervision just a little more than ten months. Within only ten months, she is learning at the speed beyond children usually in this category. As a matter of fact, during the second follow-up with Dr. Uta Francke at Children Hospital of Stanford, she is no longer considered as typical rett syndrome girl due to her improvement in the hand function which are mostly lost in the rett syndrome girl. As most of us can recall, ten months ago, Ting-ting was a girl barely hold on to an object longer than 3 seconds. However, at this time, she learned to use the fork and prepare to spear the food to feed her.
3. Recently, CARD is trying to implement the PECS to establish Ting-ting’s communication system. The progress is indeed slow due to several factors, 1). The modeling of a particular communication system takes time and practice for the young children to have a sense of the appropriateness of the symbols as being a meaningful expressive outlet. Ting-ting is not giving enough practice and opportunities to learn this new skill. 2). The PECS is never setup with a careful observation and evaluation from her behavior or home environment. The system is only setup based on the conversation among therapists and consultant, who has never done a home-visit or observed Ting-ting’s behavior in either the CARD clinic or her home environment. 3). The approach of PECS should be model to encourage her communication. Ting-ting shows a clear and strong intent for the communication; however, due to her severe apraxia as well as ataxia, which is common among rett syndrome girls, she could not use either hand or mouse to express her desire. Several recommendations could be found from Rett Syndrome Associations, as well as the reports from Rett Center in Oregon Heath Sciences University (see attachments). The augmentative system, switch-activated systems, eye-gazed computer devices, and various assisted technologies are all very appropriate to establish her communication system for the disorder of her category.