Maddie Chan

Meet Maddie

Fifteen-year-old Maddie Chan lives life enthusiastically despite microcephaly and cerebral palsy. Affectionate and outgoing, she is eager to learn and very interested in interacting with others. She attends junior high in a self-contained, special education classroom in Chandler, Arizona, where she lives with her mother Patty, father Scott, and older brother Morgan.

Maddie is a highly successful emergent communicator with her PRC SpringBoard Lite, using it to express her feelings, communicate her physical needs, interact socially with others, and share her sense of humor. Her SpringBoard Lite empowers her to communicate to her fullest potential.

The Clinician’s Report

Sarah Hales is a speech-language pathologist in private practice who has been working with Maddie since 2005.

Maddie’s Challenges

Not being able to speak is Maddie’s major challenge.

She also has cortical visual impairment and small motor skill deficiencies. She is severely apraxic and has mild to moderate cognitive disability. Her body inhibits her from being more independent, and her physical needs have to be met to even remotely begin to see the bright, shining kid that she is. If her needs are met, her whole demeanor changes and she is better ready to learn.

Maddie’s Strengths

Maddie loves being around and interacting with people, despite her limited verbal skills. She is ambulatory and very social. Her interest in other people and the enjoyment she gets from commenting on things and making jokes motivate her to use her AAC device.

PRC Device

Maddie uses a SpringBoard Lite. Its lightweight and portable design makes it possible for her to carry it with her wherever she goes.

Vocabulary

Maddie uses core vocabulary. She has successfully progressed from 15-locations to 32-locations, indicating excellent progress from both the motor and visual perspectives. The Activity Row and Visual Scenes are used to provide access to additional vocabulary.

Access Method

Maddie uses a keyguard to access her device by direct selection. Once she learns where a key is, she is 95% accurate in finding it again. Occasionally, if she is tired, she has trouble activating a key –she’ll swipe instead of pressing and will accept help to activate it.

Communication Before SpringBoard Lite

Maddie communicated nonverbally with gestures, such as swinging her arms towards things that she wanted. She vocalized loudly to request attention. She can approximate “yes” and says “dat” for “that,” although she isn’t using these as often as she used to.

Therapy Strategies

Maddie’s sensory needs must be met prior to focusing on the task at hand. Her readiness to learn depends on meeting these needs first through bouncing or deep pressure. She uses a Sit-Fit cushion, which encourages movement while sitting. Maddie is very interested in what is going on around her, but less interested in structured tasks. She is very motivated by books. She likes to turn pages and see colorful pictures, which are used to teach her core vocabulary. The vocabulary is then reinforced by applying it to an activity.

Communication Now

When Maddie feels overwhelmed by noise or activity, she used to scream. The screaming decreased when she learned to use her device to say “Don’t like it!” She spontaneously communicates in single words, and will sometimes use two-word and, less frequently, three-word phrases. She also uses her device to share information about herself, her family, and her favorite things, and to tell her caregivers when she needs something, such as, “need drink,” “need food,” or “want snack.” She says “my turn” and “your turn” on her device when she is playing a game. This basic emergent communication it is all done with core vocabulary, which Maddie uses very well.

Maddie likes to use her device to elicit reactions from others and display her great sense of humor. Like a typical teenager, she loves any kind of funny noise. She can navigate her way through her animal pages to find the skunk in order to solicit a “PUUUUUUUUU.”

Current Communication Goals

Maddie is continuously increasing her ability to use “yes” and “no” and build sentences from core vocabulary. For Maddie, the greatest value of having a SpringBoard Lite is her ability to share her personal thoughts and feelings when she is with people she doesn’t know. She needs to be better at saying, “Look, you are not meeting my needs.” She shares very well in environments where her needs are met.

How an AAC Device has Changed Maddie’s Life

Having a SpringBoard Lite has absolutely improved Maddie’s quality of life. It has increased her ability to interact socially, which is hugely important to her, and to let people know when she needs help. “There have been times when I’m programming her device and she can’t access it,” says her SLP, Sarah. “She gets frustrated when I tell her ‘not now.’ She gives me a look that says, ‘What do you mean? This is the way I talk. You can’t take my voice!’”

Teacher’s Notes

Amy Conover, M. Ed., was Maddie’s special education teacher for two years. Today, Amy is a PRC Regional Consultant in Arizona who provides programming, instruction, and support to augmented communicators, students, parents, and colleagues in the use of AAC devices.

About two weeks into the school year, Maddie’s mom sent in her AAC device and I felt lost! While this was meant to be Maddie’s voice, I really didn’t know what to do with it. Over time, her parents were very supportive and helped me as much as they could in finding training opportunities, programming her device and even allowing me into their home for a therapy session to see what she was doing with her device.

After all that, I still did everything wrong for that kid! It is amazing that she put up with me. I had her navigating from page to page to page like there was no tomorrow. Once I finally got to PRC training and learned about the core vocabulary in a PRC device that would enable Maddie to say what she wanted, whenever she wanted, we started all over and began teaching Maddie core vocabulary.

Once we determined how to physically position and stabilize the device to accommodate Maddie’s physical needs, she quickly started using core vocabulary in the classroom. It was like magic. She was very functional and started to put two or three core words together. She would say, “don’t like this” and “don’t want to,” but more importantly, she started to use her device in non-scripted situations. We would take it on our field trips and she would use it out and about to say, “here’s my money” or “I have that.” She just blossomed.

I knew in the first few weeks after meeting Maddie that she understood everything I said to her. Everything! Her receptive vocabulary is huge. She’ll pick up on adult jokes and laugh appropriately and usually before the adults laugh. Her SpringBoard Lite has become such a vital part of Maddie’s life. It is her voice. She is never going to be able to communicate with spoken words, so it is her way of actively participating in the world and enjoying life.

The Parent’s Perspective

Patty Chan, Maddie’s Mother

We call Maddie our “Mystery Girl,” because though she has been given a diagnosis of CP, she has other characteristics that CP doesn’t explain. Genetic workups, however, don’t find any genetic syndrome, so at least for now we have to live with not really knowing.

From the beginning, I was concerned about what these disabilities would mean for the rest of Maddie’s life, and felt not being able to communicate was by far her greatest challenge. We tried low-tech recording devices when she was as young as four years old, but didn’t have a lot of success because Maddie didn’t have enough motor abilities at that time. Though some therapists said devices wouldn’t be an avenue for her, we knew there was a lot going on in that little head and we weren’t going to give up.

When she got her first SpringBoard at age 10, Maddie, who loves to watch TV and is a movie bug, initially used it to choose what shows and movies she wanted to watch. But things really advanced when she got into Amy Conover’s class at school. [Amy, formerly a special education teacher, is now a PRC Regional Consultant.] Amy was interested in augmented communication and was passionate about integrating “aug-com” into the whole academic day for Maddie. She understood Maddie at a level that no one else had. Amy figured out how to get her to use the device in ways that let us see what Maddie knows and what she was capable of academically. What she knows surprised some, but validated what others of us knew was in there!

Maddie is much happier when she can tell us things, which in turns makes all of us happier. Life at home is more peaceful now that Maddie has fewer episodes of frustration. And having the device changes the way other people interact with her – she’s highly social, but being nonverbal was a big obstacle.

A recent communication highlight occurred when Sarah, her speech therapist, had a scheduling conflict and asked to meet with Maddie before school. Because Maddie is little in stature and cognitively more like a preschooler, we forget sometimes that she’s a teenager. She sometimes has difficult teenage behaviors, like wanting to sleep in. In therapy that morning, Maddie was grumpy and tired. Spontaneously, she chose the “feelings” page and told Sarah that she felt “tired” and “want my bed.” It was just hilarious. But we won’t be doing any more early-morning therapy sessions!