Therapy

Meet The Gallucci Family

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October 8, 2013

Bruno Gallucci plays rock-paper-scissors with his sons John, 8, left, and Joseph, 10, at their home in Burgettstown. Bruno, who has four sons, stays at home to care for them.
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By Mark Roth / Pittsburgh Post-Gazette

Jennifer Gallucci had been afraid to find out, but last month, she finally got her answer: Her 2-year-old son, Jude, does not show any signs of autism.

It was a small but important victory.

 

Jennifer Gallucci with her youngest son, 2-year-old Jude, who does not show any signs of autism.

Mrs. Gallucci and her husband, Bruno, who live in the tiny community of Burgettstown in Washington County, already have two sons with different forms of autism, as well as an older son with an ADHD diagnosis.

The Galluccis have four sons, two of whom have an Autism Spectrum diagnosis. They are awaiting definitive results on a third. (Video by Julia Rendleman; 10/7/2013).

Click on this link for video: http://bcove.me/op9t91zu

 

It’s not that their lives would have been shattered by having another child with autism, they said, but in a schedule already packed with therapy sessions, visiting aides and special diets, the conclusion by a psychologist at the Autism Center of Pittsburgh was a relief.

The examination showed that Jude has a speech delay but otherwise is “neurologically typical,” Mrs. Gallucci said. The psychologist “said he didn’t see anything indicating autism, and I said, ‘I like that. Let’s go home.’ ”

Joseph Gallucci, 10, and brother John, 8, play soccer at their home in Burgettstown. Joseph is low-functioning autistic while John has Asperger's syndrome, described as a form of high-functioning autism.

Her son Joe, 10, has moderate autism, and only began to speak in full sentences this year. Her next youngest, 8-year-old John, has Asperger’s syndrome, a higher-functioning form of autism, and also has some problems with aggression.

Because of that history, it made sense for the Galluccis to enroll Jude at the University of Pittsburgh’s Infant Communication Lab, which is part of a national network of centers studying children who have an older sibling with autism.

In 2011, the Pitt center and several others published a study that showed that nearly 20 percent of those younger children ended up with autism themselves — far higher than the estimated 1.1 percent rate in the general population.

The study suggests that autism has a strong inherited component, but it doesn’t rule out the possibility that some families might have experienced a common environmental exposure.

Joe Gallucci, 10, stretches his arms above his head as he works on balance during a horse-riding therapy session at Horse 'N Soul in Washington County.

As with Jill Escher in California (see related story), Mrs. Gallucci’s mother took fertility drugs when she was pregnant with Jennifer. But whether that has anything to do with her children’s autism, or whether her grandfathers being coal miners might explain it, she doesn’t know.

“Now all of a sudden autism is snowballing, and what is it?” asked Mr. Gallucci, a plumber who is currently a stay-at-home dad. “Is it toxicity in everything nowadays? Is it vaccinations? Is it food, water? There are so many different variables it’s mind-boggling.”

Even if the driving force for the Gallucci family’s autism is genetic, scientists do not yet have the ability to pinpoint a specific set of genes that are at fault in most cases of the disorder. Scott Selleck, a geneticist at Penn State University, said there are many different forms of autism, and hundreds of genes have been implicated.

“One could make the argument that to talk about a single entity called autism is a bit of a misnomer,” he said. “It is quite likely that autism is a disorder that has 2,000 genes, so what do we call it now?”

The Galluccis see that variation within their own family.

Therapist Brian Danna with Behavioral Dynamics Inc. plays a learning card game with 10-year-old Joseph Galluci, left, and his brother John, 8. The game helps the boys, who are both on the autism spectrum, to improve their nonverbal communication.

After their oldest son, James, 13, was born, Mrs. Gallucci remembered how active and verbal he was. So when Joe was born three years later, her first impression was that in contrast to James, “Joe didn’t need constant attention and he hit all of his milestones except for his speech, and I just figured he was quiet. And after Jim talking so much I was happy he was quiet.”

In preschool, though, it was obvious Joe had behavior probleMrs. School officials recommended Mrs. Gallucci take him to Children’s Hospital of Pittsburgh of UPMC and “at that point I was angry, and I thought, ‘I’ll take him just to prove you’re wrong.’ ”

After testing Joe, Mrs. Gallucci said, “the doctor left the room, and she came back in and handed me a book and said, ‘Your child’s autistic,’ and that was it. I shut down right then. I had no idea what she was talking about. I don’t think I’d even seen ‘Rain Man’ [the 1988 film starring Dustin Hoffman as an autistic man] at that point.

“Then I cried about it for two to three months.”

Soon, her pain turned to anger again, and she vowed that “if you’re going to give my child a label, and he’s going to be stereotyped and looked down upon, then I’m going to make sure he’s going to get all the good things that come with it.”

That meant signing up for therapy appointments, special school programs and enrichment activities, a jam-packed life that only became more crowded after John was born in 2005 and eventually got his own autism diagnosis.

Unlike Joe, who still speaks haltingly and has just begun to read, John is articulate, high-energy and fascinated by computer games, especially his favorite, Minecraft. He also has behavior problems at school, Mrs. Gallucci said.

“He’s much better in school during structured time; during unstructured time is when I get the phone calls. John has done many, many things in school. John is the bully; he doesn’t get bullied. John has started food fights. John has thrown wet paper towels all over the bathrooMrs. John is very loud in the halls. Just mischievous stuff, but now it’s getting to be a big deal.”

The Galluccis found out a couple of years ago that John has a rare genetic duplication on part of his 17th chromosome, one that has been associated with intellectual delays and autism.

Both boys get in-home visits from therapeutic support staff, known as TSS aides, who spend time helping with daily activities, and from behavioral specialist consultant aides, who can help write treatment plans and go with them to doctors’ appointments, as well as from specialized therapists. Altogether, these visits, paid for by Medical Assistance, take up about 11 hours a week.

Joseph Gallucci, 10, lets out his energy by bouncing on a large rubber ball, something he does often. The bouncing is part of his self-stimulation routine, activity common in persons with autism.

The Galluccis also have enrolled both boys in numerous outside prograMrs. One of the best, she said, has been the equine therapy sessions Joe has participated in at Horses with Hope, a riding program for special needs children based in South Park and Washington, Pa.

“Within two months of starting there,” Mrs. Gallucci said, “Joe was flying through his occupational therapies. His balance increased, his throwing aim, everything just went through the roof. When he’s on the horse, he can be having a very bad week, but something about that horse walking calms him down and he’s good to go.”

Besides managing the family’s schedule, Mrs. Gallucci works at an office involved in land purchases for shale gas development. Mr. Gallucci, who recently went back to school for training in cybersecurity, is still looking for work.

What does the future hold?

“I want to see all four of my children with college-educated jobs, living in their own houses with their own wives and children and driving their own cars,” Mrs. Gallucci said without hesitation. “I’m pushing for that. The only one I worry about getting to that goal is Joe. Will he get there? I don’t know — but I’m hoping for that.

“Because eventually I’m going to die. Either Joe’s going to stand on his own two feet, or one of his brothers will have to help him, and what are their wives going to say? Are they going to want to deal with that? I don’t know.”

In the meantime, the Galluccis said, they make sure the boys are well cared for and not in the least hidden away.

“We don’t have a lot,” Bruno said, “but these kids are all fed very well, they play, they are in their community. Right now, we live for them.”

“We don’t have time to sit around and say ‘Oh, autism is so horrible’ and you should feel bad for me,” Mrs. Gallucci added. “I know a lot of people who do that, who sit and cry about how horrible everything is.

“OK, yeah, it’s bad — let’s move on from that.”

http://www.post-gazette.com/stories/news/health/one-family-four-children-two-forms-of-autism-706693/#ixzz2h8YVC0ki

Shakespeare, Emotions and Autism: A New Study

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Robin Post, the program director of the autism and Shakespeare study at Ohio State University Wexner Medical Center, works with students at an elementary school in Columbus.

AUTISM AND SHAKESPEARE: OHIO STATE RESEARCHERS STUDY HUNTER HEARTBEAT METHOD

Researchers at Ohio State University Wexner Medical Center’s Nisonger Center are working with a group of middle school students in Columbus to see if Shakespeare’s plays can help children with autism spectrum disorders make gains in communication and in understanding and expressing emotions.

The study is based on the Hunter Heartbeat Method, which was developed about 20 years ago by Kelly Hunter, an actress with the Royal Shakespeare Company in London. Hunter’s theory, according to Marc Tassé, director of the Nisonger Center, is that Shakespeare’s work, because of its meter and exaggerated expression of emotion, is particularly well suited for theater interventions for autism.

The Ohio State researchers are using “The Tempest” to teach the study’s 20 participants subtle clues about emotions; they will study the children over the course of 42 weeks to see if the method yields results.

The students “practice how to express emotions differently, and observe how that emotion may present itself differently in the facial reaction and tone of voice of others,” said Tassé, the principal investigator of the study. . “Sometimes that’s a challenge for kids with autism, reading those subtle social cues.”

According to Tassé, Hunter believes the iambic pentameter of Shakespeare’s verse mimics the rhythm of a heartbeat, and each session begins with students tapping their chests. Participants then re-enact scenes from the play to work on expressing emotions.

“They go around the circle and take turns doing an angry voice, with an angry face, and observe the other students and the theater students doing angry, then sad, then happy,” Tassé said.

The study is broken into two groups of 10 students from across the autism spectrum. One group is working with members of the theater department at Ohio State on the Hunter Heartbeat Method for about an hour once a week through next May (with a break for the summer). Members of the other group will receive only the therapy or services they normally would get, Tassé said.

At the end of the study, both groups will be assessed on their use of language in social situations, social skills and ability to recognize others’ emotions. A pilot study last year looked at results in 14 students over the course of 10 weeks. In that study, Tassé said, researchers noticed significant improvements in communication, peer relations and adaptation skills.

http://www.washingtonpost.com/lifestyle/on-parenting/autism-and-shakespeare-ohio-state-researchers-study-hunter-heartbeat-method/2013/04/09/843cc67e-9003-11e2-9abd-e4c5c9dc5e90_story.html

The Impact Of Music

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When you think about how many school districts start to cut music programs due to budgetary constraints, you really don’t think it has that much of an effect on students on the Autism Spectrum, especially when compared to the more ‘traditional’ services they tend to receive: Speech, OT/PT, etc.  But this study shows a real correlation to how music therapy really has an impact on autistic students: impacting socialization, motor skills, tolerance levels toward non-preferred activities, etc.  Bottom line: support your local music programs; it will go a long way. -Ed

AUTISM AND IMPROVISATIONAL MUSIC THERAPY

Autism and Music Therapy

Music therapy has become an integral part of many programs for children with autism. The broad category of music therapy is generally described as interventions that seek to teach individual skills or goals through music. Music therapists use their training as musicians, clinicians, and researchers to effect changes in cognitive, physical, communication, social, and emotional skills. According to theNational Autistic Society, “Music therapy aims to encourage increased self-awareness/self-other awareness, leading to more overt social interactions. The therapy stimulates and develops the communicative use of voice and pre-verbal dialogue with another, establishing meaning and relationship to underpin language development. The client may also benefit from increased tolerance of sound, tolerance of and capacity for two-way communication, the opportunity to exercise joint attention, and other emotional needs met in the therapeutic process.”

Research Autism reports strong positive evidence from peer-reviewed journals that support the effectiveness of music therapy for individuals with autism spectrum disorders (ASD). Based on the literature to date, music therapy has shown good effects in influencing joint attention, social interaction, verbal and gestural communication and behavior. It is considered to be a useful intervention, particularly with young children, and where language acquisition is either delayed or disordered to a severe degree. Supporters of music therapy emphasize that it can be used to develop social engagement, joint attention, communication abilities, while also addressing emotional needs and quality of life.

A study published in the journal Autism provides further support for the effectiveness of music therapy with ASD. This study investigated the social-motivational aspects of musical interaction between the child and the therapist in improvisational music therapy by measuring emotional, motivational and interpersonal responsiveness in children with autism during joint engagement episodes. Improvisational music therapy is an individualized intervention that facilitates moment-by-moment motivational and interpersonal responses in children with autism. Compared with other therapeutic interventions utilizing music as a background or contingent stimulus, improvisational music therapy involves the interactive use of live music for engaging clients to meet their therapeutic needs. It is gaining growing recognition as an effective intervention addressing fundamental levels of spontaneous self-expression, emotional communication and social engagement for individuals with a wide range of developmental disorders.

Design

This randomized controlled exploratory study employed a single subject comparison design in two different conditions (improvisational music therapy versus toy play sessions) and two different parts of a session (an undirected/child-led part versus a more directed/therapist-led part) in each condition. The objective was to compare the effects of these two different media (music versus toys) and to determine how children respond in a musical context with or without direction, compared with a non-musical context such as play activities with toys with or without direction.

Participants and Procedure

Participants were children aged between 3 and 5 who were not previously treated with either music therapy or play therapy. A total of ten children (all male) completed the clinical trials. Five children were non-verbal while the other five were verbal with varying degrees of language skills. Eight children were in preschool special education, and two were in mainstream preschool programs that included additional therapeutic supports, such as speech language therapy. The children were randomly assigned either to have the music therapy sessions first and the toy play sessions later (group 1), or vice versa (group 2). In order to differentiate the media used in these two conditions, the therapists in music therapy were instructed to interact with the child mainly through music, whereas the therapists in the toy play condition were instructed to engage the child by any means, but to avoid any musical media, such as singing or rhythmic playing.

Observed behaviors were recorded in terms of both their frequency and their duration for two broad categories. The first category concerned the participant’s emotional and motivational responsiveness (joy, emotional synchronicity, initiation of engagement) towards different types of attunement promoted by the therapist in these two conditions. The second category concerned two different types of responsiveness towards the therapist’s initiation of interaction (social invitation and interpersonal demands). Joy referred to an event when the child either smiled (facial expression duration only), or laughed (facial expression with vocal sound) during the interaction with the therapist. Emotional synchronicity referred to an event when the child and the therapist shared a moment of emotional affect duration (happiness or sadness) while engaged with each other. Initiation of engagement referred to an event where the child spontaneously initiated interaction with the therapist, or initiated a change during ongoing interaction, and then expected the therapist to follow.

Results and Discussion

Improvisational music therapy produced markedly more and longer events of joy, emotional synchronicity and initiation of engagement behaviors in the children than toy play sessions. In response to the therapist’s interpersonal demands, ‘compliant (positive) responses’ were observed more in music therapy than in toy play sessions, and ‘no responses’ were twice as frequent in toy play sessions as in music therapy. In the music therapy condition, there were more joy, emotional synchronicity and initiation of engagement events in the undirected part than the directed part, suggesting that children were happier, more able to express their happy emotions and more able to share their affects with the therapist when leading. These results suggest that musical attunement enhances musical-emotional communication together with joy and emotional synchronicity, which results in children’s spontaneous willingness to respond, initiate and engage further.

According to the authors, “The temporal structure of music and the specific use of musical attunement in improvisational music therapy suggests that we can help children with autism experience and develop affective skills in a social context.” Creating music relates to the child’s expression, interest and focus of attention may evoke responses from the child to a therapist creating such relational music for them. Moreover, improvising music together is an emotionally engaging process. Music can be an attractive medium, allowing the child his/her own space and the choice of objects, at the same time engaging the child with different objects of the therapist’s choice.

Of course, this “exploratory” study has limitations. For example, the small sample makes any generalizable conclusion premature. The test power is low and should be considered when interpreting the results. Likewise, the small sample limits the relevance of subgroup analyses (language, age, severity) as well as therapists’ effects which would be helpful to understanding how children with different developmental needs respond to this type of intervention different therapists.

Conclusion

In conclusion, the results of this exploratory study found significant evidence supporting the value of music therapy in promoting social, emotional and motivational development in children with autism. The findings highlight the importance of social-motivational aspects of musical interaction between the child and the therapist, the therapeutic potential of such aspects in improvisational music therapy, and the relative value of less directed and more child centered approaches for children with autism. The authors conclude, “Both previous and the current study indicate that we should use music within the child’s focus of attention, behavioral cue and interests, whether it is improvised or precomposed. A future study should perhaps look at the differential effect on response of improvised and precomposed music with young children with autism.”

http://www.examiner.com/article/autism-and-improvisational-music-therapy-2

XBox Kinect for Autism: Technology as Therapeutic Aid

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Video games help autistic students in classrooms

Click the link to view the video: http://bcove.me/nl38ettj

ASHBURN, Va. – Onscreen, Michael Mendoza’s digital avatar stands before a wonderland of cakes and sweets, but his message is all business: “I. Get. Frustrated when people push me and call me — and call me — a teacher’s pet!”

Technology resource teacher Adina Popa works with student Michael Mendoza using the Xbox Kinect. Motion sensors have become a big deal in the world of autism therapy and education.

Technology resource teacher Adina Popa works with student Michael Mendoza using the Xbox Kinect. Motion sensors have become a big deal in the world of autism therapy and education.

In another classroom at Steuart W. Weller Elementary School, nearly an hour’s drive west of Washington, D.C., two students stand side-by-side, eyes riveted on a big-screen TV. They jump, duck and swing their arms in unison, working together as they help their digital doppelgangers raft downriver.

In real life, 9-year-old Michael has autism, as do his two classmates. All three have long struggled with the mental, physical and social rigors of school. All three now get help most days from video-game avatars — simplified digital versions of themselves doing things most autistic children don’t generally do. In Michael’s case, he’s recording “social stories” videos that remind him how to act. In his classmates’ cases — their parents asked that they not be identified — they’re playing games that help with coordination, body awareness and cooperation, all challenges for kids on the autism spectrum.

Can off-the-shelf video games spark a breakthrough in treating autism? That’s the question researchers are asking as educators quietly discover the therapeutic uses of motion-controlled sensors. The devices are popular with gamers: Microsoft this week said it had sold more than 19 million Kinect motion-sensor units since introducing it in November 2010.

Now autism researchers, teachers and therapists are installing them in classrooms and clinics, reporting promising results for a fraction of the price of typical equipment. Could a teacher armed with a $300 Xbox and a $10 copy of Double Fine Happy Action Theater do as much good as months of intensive therapy?

“Nobody thought of it as a therapeutic device,” said Marc Sirkin of Autism Speaks, a New York-based advocacy group. Earlier this spring, when he first got wind of computer engineering students at the University of Michigan hacking the Kinect to develop autism games, he bought a ticket on a red-eye flight to see for himself. “It turns out you don’t have to look very far, you don’t have to scratch very deep, to go, ‘Wait a minute. There’s something really cool here.’ ”

Microsoft’s Radu Burducea stops short of calling the Kinect a therapeutic device, but says he hears every day about teachers and therapists adapting it in new and creative ways: math instruction, book criticism, counseling and physical coordination, for instance.

“We’ve lost control,” he admitted, “and thank God that we have.”

The U.S. Centers for Disease Control and Prevention reported in April that about one in 88 children are on the autism spectrum, a 78% rise from 2002 to 2008.

In many cases, researchers have found, autistic children easily interact with an onscreen avatar that mimics their motions — the game world is more predictable and less threatening than real life, said Dan Stachelski of the Lakeside Center for Autism in Issaquah, Wash. As a result, teachers can help even the most isolated child interact with teachers and peers. In one case, Stachelski said, a student playing a Kinect game for a few moments moved his arms up and down in unison for the first time, “something our therapist was trying to do for six months.”

Lakeside preschoolers now regularly compete in Dance Central dance-offs, and more recently, eight students shared a tiny classroom space with the help of Happy Action Theater, a sort of rule-free, multiplayer digital sandbox. Tim Schafer, the game’s designer, said his team built it with “zero assumptions” about players’ abilities. “We were thinking of a birthday party full of toddlers,” he said. “The main mantra was, ‘No failure.’ ”

At the University of Michigan, software engineering students this spring designed several Kinect games for children with autism, an assignment from instructor David Chesney. Among the titles in testing: Tickle Monster, in which kids tickle imaginary creatures onscreen and learn about both appropriate touch and facial expressions. “For kids with autism, there’s a certain social awkwardness and a lack of ability to recognize emotion, and to respond to emotion and verbal cues in an appropriate manner,” he said.

Teachers at Weller had worked for years to help autistic students cope with the everyday demands of school — following directions, staying in a prescribed space, getting along with one another and working together, among others. Even talking to one another is often a challenge, teachers say.

A few weeks ago, Michael’s teachers invited him to step in front of an Xbox equipped with a Kinect. He has since recorded four “social stories” that help him cope with social dilemmas as they happen. Teachers create digital QR codes that students access with a smartphone or iPad and up pops the student’s video.

One teacher, Adina Popa, recalled that an autistic classmate recently watched Michael’s “getting frustrated” video and reminded him of his own prescription: Tell a teacher, don’t push, hit or use “inappropriate” words.

“That was a very neat conversation,” Popa said.

http://theautismnews.com/2012/06/01/video-games-help-autistic-students-in-classrooms/