Long is the first student in an inclusion setting in Monroe County to use the Language Acquisition through Motor Planning app to help ease communication between her and her peers, teachers and family.
Lorene has cerebral palsy, a congenital disorder of movement, muscle tone or posture, which can make it hard for her to communicate with others.
LAMP is a therapeutic approach using motor learning principles and a voice output communication aid. It helps to give non-verbal individuals with autism and other developmental disabilities a method to develop independent and spontaneous communication.
Individuals using the LAMP approach learn to use words and build sentences to communicate their wants, needs and ideas by pressing buttons on a speech-generating device.
“If Lorene wants to say a friend’s name she presses on the eye picture, which then can be a human picture, then it becomes a list of friends and she can pick between the pictures to have LAMP say the friend’s name,” Adam Long, Lorene’s father, said.
“Lorene for the most part is non-verbal,” Adam said. “She can communicate in her own way with words like ‘mama’ and ‘dada,’ but she has no control whatsoever of motor function in her mouth.”
Adam said the trick of it all is trying to understand his daughter. They have developed a form of sign language, but he said it is still difficult.
Lorene also has delays on the left side of her body, making it difficult to move her leg and arm on that side.
“Cognitively she is on par with her peers,” Adam said. “Therein lies the trickiness when it comes to school.”
Lorene was enrolled in the IU Speech and Hearing Program when she was 3 years old. The program focuses on development of language skills as a key to learning. It is designed to enhance the language learning of preschool children, whether they are typically developing, learning English as a second language or exhibiting communication delays.
“I don’t think we could have gotten better care anywhere else,” Adam said.
A variety of graduate students at IU Speech and Hearing worked specifically with Lorene throughout her time in the program. A different graduate student rotated every semester, meeting with Lorene two times per week. These sessions varied from a half an hour to an hour depending on the semester and the different methods of communication on which they were focusing at the time.
Dr. Amy Piper was the head professional working with Lorene’s case. She first introduced LAMP to the Long family. This introduction changed that family’s life for the better.
“Lorene is a rascal, as like other 5-year-olds are, always trying to get out of lessons, but the progress she has shown is just phenomenal,” Adam said.
The Long family currently has the LAMP app on an iPad, which Lorene uses to communicate at home. They are working to purchase the LAMP device itself so others can communicate with Lorene in the classroom in the manner that is easiest for her.
The app itself costs about $300 and the device is $6,000.
“The hardest part of our job as parents is how it sucks the life out of us, is not being able to understand our daughter,” Adam said.
Coming home at night, Lorene is typically fussy just like any other five year old would be, Adam said.
“Now we can communicate who said, played with, what they did, what her feelings were, and that way it saves us a lot of frustration,” Adam said.
Adam described the LAMP device as relieving a heartbreaking frustration.
Looking to the future of the device, Adam said he hopes to see Lorene use it in quick speed, raise her hand in class and give answers and be able to both be included and be put into situations.
“In these three weeks of school my wife and I trade off crying every day because we are so stressed out and worried for our daughter,” Adam said. “Without this program, I don’t know where we would be.”
Through the speech and hearing program, Lorene is perceived to be able to communicate on her own, a statement that never would have been true in the past.
“I’m really glad how well the school has adapted, and I think the word will spread for this, making huge steps for inclusion,” Adam said. “This gave my daughter a voice.”
