NY child with Fragile X syndrome finds communication through iPod Touch

From Hamptons.com:

EAST HAMPTON, N.Y. - Imagine living without language, going through the day-to-day unable to voice your concerns, needs, wants and dreams. Kelton Cuttone (pictured) and his family suffered through that existence for the first 12 years of his life, and though each day still has its challenges, a new device is helping Kelton to finally express himself.

Kelton was born with fragile X syndrome, a common form of inherited mental retardation, and was diagnosed with autism at a young age. One of the complications of his condition is speech apraxia, according to Lindsay Dargan, a speech pathologist currently working at Southampton High School, a condition that prevents him from forming communicative speech. Dargan was working with Kelton a year ago when she came across an interesting new product, an iPod Touch equipped with the program Proloquo2Go, a product of AssistiveWare, that acts as an augmentative communication device.

"He had these devices that cost anywhere from $6,000 to $8,000," Dargan explained, "but they weren't functional in terms of transportation." Besides the shear size and cost of the machines ("Is it really a good idea to take an $8,000 device to a pool party?" Dargan posed), "He would push them away and wouldn't use them," she said, while Kelton has taken to the iTouch communicator with gusto.

The program, which comes with over 7,000 words and terms and more than 8,000 icons, took about a week to customize to Kelton's needs and he took to it within days. Words and phrases are broken down into folders with descriptive pictures. As Kelton chooses what he wants to say, the words are laid out across the top of the screen until he's finished and presses the speak button, whereupon the word or phrase is spoken for him. Prior to this device, Kelton would use limited sign language, grunts or force to get his message across; now, he's having full conversations with his mother.

"Visualize spending the day knowing what you want to say and can't say it," Barbara Cuttone posed, recounting a conversation she had with her son the other day, marking a milestone. As Kelton gets older, certain pleasures from his childhood have to be discontinued, as with us all. As part of this consideration, his mother decided he was too old for Teletubbies, got rid of the video and deleted the option from his iTouch. "He wanted to access it and couldn't, so I told him we didn't have the video anymore. He types out, 'Let's go to the store.' I told him, 'No,' and he asked, 'Why?'" she explained, overjoyed at the mere thought of having a constructive conversation with her son.

Before the iTouch, his mother would have to feel him out, try to anticipate his desires and interpret his signals. "Now, he can say, 'I want to go here,' or, 'Can you play with me,'" she said, explaining that she wasn't able to leave him under someone else's care unless they knew him well enough to divine his needs.

Kelton's newfound speech has also allowed his family and teachers to see just how developed he is. "It was very hard for us to assess where his speech and language skills were" before Proloquo2Go, Dargan said, "Through this device we're realizing he's further along than we first thought."

"Ask him where the Eskimos live and he pushes Igloo," Lindajeanne Schwartz, director of ABA and Positive Behavior Supports at the Child Development Center of the Hamptons (CDCH), Kelton's school, said of his intelligence. "The school he came from thought he had very limited cognitive ability," Schwartz explained, as he was placed in a class with other developmentally challenged students. Three years ago, Kelton transferred to CDCH, where approximately 40 percent of the students have disabilities, and was placed in an integrated class with other students his age. "We wanted to check what he could do with academics," Schwartz explained, "So we gave him a spelling test." Kelton cannot speak or write, so the teachers provided him with magnetic tiles. "He got a hundred on his first spelling test in his whole life," Schwartz exclaimed, still amazed to this day, "That's when we realized there's a lot more going on in there than we thought."

In class, Kelton works with Sam Kelly, his one-to-one teacher since September. He sits in with the rest of the class, however while they worked on the elements of a biography, Kelton is looking at pictures of three-letter words with a letter missing in each. "I need you to find your letters, go to writing and find your letters," Kelly instructed him. Kelton works at his own pace, but doesn't dally in finding his letters. He brings up a keyboard on the screen and looks at a picture of a bat with the 'B' missing. "What letter does 'bat' start with? What makes the 'ba' sound?" Kelly prompts, "'Baa,'" one of the most difficult sounds for Kelton to produce naturally. It takes him a few moments, but he finds the 'B' key and pushes it. The voice of a young boy says 'Bee' and they move onto the next word. After a few warm-ups Kelton is getting them on the first try with minimal resistance to working, his finger hovers briefly over the keys as he concentrates, but he finds what he's looking for and has learned how to use the delete key when he makes a mistake.


"In the past he couldn't really be incorporated into the lessons," Kelly explained, "Now he can answer questions. He takes in everything you're saying, but this has brought it to a different, new height."

The iTouch device itself, with the speaker capability, can cost upwards of $500 and the Proloquo2Go program costs another $189, far less than the bulkier devices, yet still out of the family's reach. Dargan took it upon herself to contact a friend working as a corporate account manager for AT&T, Chris Balzaretti, who was able to get the iTouch at a significant discount and paid the balance out of his own pocket. Balzaretti has never met Kelton or the family, but was happy to be able to help.

Kelton's success with the device has led others to consider the same tack. Lisa Matz, president of the CDCH PTO and mother of Robert Matz, a child with a similar speech deficiency, explained that her son would be getting an iTouch with Proloquo2Go as well. The device and program are being donated to the Matz family by the local chapter of the Kiwanis Club.

Kelton is interacting more, progressing faster and has even begun to vocalize some words, though he is as yet still unable to vocalize full sentences and his vocabulary is very limited. Perhaps more importantly, he has begun to socialize more. "The fact that he has an iPod Touch, he's the coolest kid in the building," Schwartz said, "It's just been magnificent."

"That alone for a kid who came into this school with his finger in his ears - so shy," Barbara Cuttone said, "And now, you see him participating in morning meeting," using his iTouch to assist with the Pledge of Allegiance.

It will be a never-ending battle. "We keep pulling them out of the mud and autism keeps pulling them back in," Schwartz said, but for the first time in Kelton's life he can tell you he wants to fight.