Benjamin Wohl

Meet Ben

Five-year-old Benjamin Wohl lives in Torrance, California with his parents, David and Jane, an older brother, Jonathan, two cats, and a frog.

Ben was born with an Arnold-Chiari malformation, which was corrected by surgery when he was a toddler, but left him with autistic characteristics, including little or no vocalization. He has poor bilateral coordination, poor motor planning skills, and a medical history including hypotonia, or low muscle tone. Because of oral motor issues, Ben is primarily fed via g-tube.

Ben is expected to begin kindergarten in fall 2009. Because of recent advances in his expressive communication skills, Ben’s family and clinician hope that he will spend time in mainstream as well as special needs classrooms. It’s a possibility his mother Jane says didn’t exist before he began using his augmented and alternative communication (AAC) device from PRC. “Just a year ago, we were told Ben showed ‘insufficient communicative intent.’ Now mainstreaming is a real possibility. That’s very powerful.”

The Clinician’s Report

Deborah Lim is a speech-language pathologist at Pediatric Therapy Network, a nonprofit therapeutic and educational center in Torrance, California that provides family-centered occupational, speech/language, and physical therapy to children with special needs. Lim incorporates Language Acquisition through Motor Planning (LAMP) strategies into her therapy to help clients like Ben overcome communication challenges posed by autism.

Ben’s Challenge

Ben and DeborahIncreasing and maintaining alertness. It relates more to his sensory needs, and he needs to be alert enough to participate. Incorporating physical movement into his lessons greatly improves his alertness and motivation. Another challenge has been the limited saliency of his communication attempts to others. For example, his signs are gross approximations with limited differentiation from one to another.

Ben’s Strengths

He is very willing to follow and is usually compliant. Another great strength is his memory, and he has good receptive language. Ben also has a strong desire to connect with others. This became obvious when he started using voice output systems and he grew more responsive and persistent in his communication attempts. Ben also has a very supportive family and team, which helps with implementation of his communication plan.

PRC Device

Ben was first introduced to the PRC Vantage Plus device during a clinical trial in November 2008. His family has since received approval from their medical insurance company to obtain a Vantage Lite for Ben.

Vocabulary

Ben recently moved from Unity 45 one-hit to 84 one-hit to his current 84 sequenced vocabulary system.

Access Method

Direct selection

Communication Before Vantage

Ben had a few signs and used facial expressions, smiling and some vocalizations. But for the most part, he turned away often and needed prompting. But when he was aroused or alert, his signing improved. He used PECS, but needed prompting; he didn’t go to it spontaneously and often didn’t use it.

The sounds that Ben produces are non-reflexive vocalizations for pleasure and displeasure. He whines a little when he does not like something and playfully voices when he’s happy. He is starting to make different kinds of sounds, but he is not able to produce them on command. He has been trying for a long time just to get his lips approximated as if to say the “m” sound. He is just at the beginning of being able to imitate an oral motor posture.

Therapy Strategies

I initially used “hand-over-hand” techniques to demonstrate to Ben how to activate the speech-output device. At first there was some concern that, with low muscle tone, he would not be able to master the appropriate pressure and coordination to activate the buttons. I would have to push his finger down to make the activation. When he signed “more” to let me know he wanted more pushes on the swing, for example, I would select “more” on the device. He picked it up pretty quickly. I offered him hand-over-hand, and then I would just point to where the icon was. He could do it when everything else was hidden, and when I started presenting two icons, he would start going to it himself. He did really well with it.

Communication Now

There are many situations in which Ben now relies on his device, and he is independently and spontaneously seeking it out to have both needs and wants met throughout the day. He’s willing to use his device for feeding, such as requesting a snack during therapy. At home, he asks for help in playing favorite games and DVDs, and delights his parents when requesting “want tickle” and “play with dad.”

Current Communication Goals

Ben’s IEP goals include identifying 10 verbs; communicating wants/needs/basic messages; following one-step commands with early spatial terms and pronouns; and pairing vocal output with communication output (signs, gestures).

How AAC Device has Changed Ben’s Life

Having the AAC device gives Ben better control of his environment and he can now say when he wants or does not want something because the device is always available to him. The device has also opened some doors to let people see that Ben has opinions, wants, and ideas, and that he understands more than you might think. He appeared so passive that people might have assumed he wasn’t paying attention to what was going on around him, but I’ve learned how much he understands and how much he tunes into his environment.

The Parent’s Perspective

Jane Wohl, Ben’s mother

My greatest fears for Ben when he was first diagnosed were that he might never read a book himself, or be able to communicate his wants and needs, or eat without a feeding tube.

Without speech, I feared that no one else in the world would have a clue about what he needed. He’s a really, really subtle guy, and as his mom, I just sort of know what he wants by how long he’ll gaze at something, for example. But no one else would be able to interpret like I can for him. And once his world grew bigger than just me, I worried about what would happen.

As a former preschool teacher, I was familiar with some low-tech communication devices used in the classroom, and Ben was taught sign language and to use the Picture Exchange Communication System (PECS). But many of these approaches require more physical coordination than Ben has, and his interest level is much higher with the quickness of the AAC device’s process, as compared to looking at a page of PECS, pulling off the correct one and handing it to someone, who then gives him verbal feedback. It is obvious that the delay time reduces his interest in the activity and it is more work for him with less immediate feedback. Ben is such a techie that the dynamic nature of the Vantage device makes a critical difference.

Now that Ben has the Vantage to help him, the trick is finding motivating communication opportunities for him. He loves swinging, and will use his device to request more pushes. He also loves the book Owl Babies, and last week, during a behavioral therapy session at home, he learned the four-step sequence for “turn the page.” It’s pretty complicated, but he really likes the book and he learned it. Ben is very curious about what messages are inside that magic box!

Having an AAC device has dramatically changed Ben’s life already, and I think it’s going to change the trajectory for his feedings, because he is going to have more power to choose, and that’s going to be very meaningful in helping him be able to go off the feeding tube. Now that Ben communicates with his Vantage, he is also giving orders around the house. Now that he can tell us to move our butts to do what he wants done, he seems not to miss an opportunity to tell us to do whatever it is – and to “go fast.”

Today, I hold bigger dreams for my son than I once dared to. I find myself sitting in the living room after everyone has gone to bed, playing around with the Vantage. I’m not at all a techie, but it’s very motivating for me to learn because if I can help Ben get his messages across, I’m going to spend the time to do it!

The support from PRC has been phenomenal. I have exchanged calls and emails with Tech Support, and the speech therapist has been incredibly supportive. I understand there is good training for the whole team of those working with a device. So, it’s not just me who has mastered this -- this is new for the school’s speech therapist, for the aides at school, and even for the physical therapist who works with him. We’re all teaching each other.

I’m thankful to clinician Deborah Lim for introducing Ben and my family to PRC devices, and to the other members of Ben’s support team. My approach to all of Ben’s therapeutic interventions has been that it’s got to be a team approach. From my perspective, it’s wonderful if he can do something in one situation with one person, but I don’t feel that the goal is met until it’s generalized in other settings with other people.

The coordinated effort really feels like a strong point regarding Ben's case, and I am sure that without that team effort, Ben would not have been so successful to date. He is a very good example of home-school-clinic cooperation at work.

Videos

• Ben’s words “in” and “go in,” along with “go” and “go fast,” show nice generalization and expansion. The word “in” (shoes in cubby) becomes “go in” (enter through the door). This illustrates that the meaning of “in” can be different given different situations, and his language is generative.

• Ben loves the swing but becomes slightly frustrated because he is not able to “push” and “pull” when first introduced to it. Deborah shows him how to ask for “help.” Finally, the swing goes into action.

• Soon the enjoyment of the swing begins to take over and Ben learns how to ask for “more” and “go” and “go fast.” At first he is dependent upon Deborah’s prompt, however, later in the session he selects the icons without assistance.

• Ben easily communicates “go fast” and “go swing.” When Deborah indicates it is time to stop, Ben is cooperative and generates the words “all done.” Note the fading of prompts as the session continues.

• Here you will see Ben interacting with his parents. He started with Unity 45 One Hit and progressed rapidly to Unity 84 Sequenced. Ben is using a limited number of core words, but note how useful and flexible they are, and how well he knows their location.