This weekend will be my 15th Father’s Day.
As the dad of a child with profound special needs, my day will be anything but that of a typical dad, or a typical Father’s Day.
My son is non-verbal and so for the fifteenth consecutive year, he won’t wish me Happy Father’s Day.
My son has limited motor skills so there will be no handmade Happy Father’s Day card for me.
Silence is symbolic for many on the Autism Spectrum; for many who are nonverbal, it is a literal interpretation. The autism community as a whole was (once) viewed a silent minority hidden amongst the neurotypical populace. We have only begun to understand, however, that the autistic and the neurotypical can, and must, coexist for the benefit of both. Like the Chinese yin and yang, there must be a balance; this applies to music as well as autism. To understand and appreciate autism, there must be an acceptance of it; an understanding of the neurotypical allows for an understanding of the autistic, and vice versa. As explained below, music without silence, pause or punctuation, is simply unending cacophony. Silence allows us to appreciate the sound. -Ed
WHAT IS MUSIC WITHOUT SILENCE? by Phil Evans, via huffingtonpost.com
There is one phrase I overuse to an almost criminal extent – “the power of music”. As a Nordoff Robbins music therapist, it is both my currency and an easily digestible sound-byte that trips off the tongue when I haven’t the time or inclination to explain what it is I actually do.
When music therapists talk about the ‘power’ music has, I think we are describing music’s inherent potential to connect us, to move us, to remind us who we are and to change the way we think and feel.
Everyone has an instinctive understanding of the language of music. Consequently, we can’t help but respond to it. As a (faintly embarrassed to admit) monolinguist, I find it pretty easy to ignore an overheard train conversation spoken in Spanish or Mandarin… yet if it’s in English I find it nigh on impossible not to earwig at least a little. So it is with the language of music; we all understand it, so when we hear it we can’t help but tune in.
Where did this innate, universal understanding come from? Well many would say that it is because we are all formed by music.
When we enter the world our primary relationship, usually with our mother, is fundamentally a musical one. There are the obvious musical tools – the lilting melody of her voice as she sings to calm us or her rhythmical rocking to lull us to sleep. But the musical nature of the relationship runs far deeper. In fact when trying to describe the nuances of how a mother and her baby interact with each other, child developmentalists such as Daniel Stern found that they constantly borrowed from musical terminology to do so; the rhythm of the interaction, the shifting dynamic range, a shared crescendo, and so on.
Even before that, our earliest experiences in the womb are essentially musical in nature. We hear the rhythm of our mother’s heart beat on average about 26 million times before we leave the safety of the womb. We experience and internalize the regular meter of her pulse, her breathing, her walking.
We also hear the melody of our mother’s voice. Or to be specific, we hear the melody, and we hear the silence when it stops. Many now consider this ‘presence’ and ‘absence’ creates our first meaningful experience of ourselves – of something being with us, then, through silence, absent.
I’ve recently found myself considering this relationship between music and silence in music therapy, which has been prompted by David Hendy’s excellent Radio 4 series, Noise: A Human History. In this week’s episode, in which he focused on humanity’s affiliation with silence, Hendy said that ‘in a world full of noise, the value of silence is rocketing’.
As a Londoner who spent 10 years living under the Heathrow flight path I know all too well what he means. But his insight reminded me that we take silence for granted at our peril. Indeed I believe that the source of the ‘power’ of music is, to a large extent, the power of silence. It is the silence before, after or during a musical experience that articulates and structures that experience, and in doing so helps us to make sense of it.
So silence, perhaps counter-intuitively, is one of the most powerful tools in a music therapist’s armory. Because through the journey from silence into music and back again, comes meaning. And often our job as music therapists is to help clients find a balance between the two; for example with clients on the autistic spectrum.
Much of the original work that Paul Nordoff and Clive Robbins did when formulating their approach to music therapy was with autistic children. Today, 50 years on, the range of client groups whose lives are transformed by the charity that bears their name has expanded enormously. However, at the Nordoff Robbins music therapy centre in London where I work we still see a lot of children and adults with ASD.
Commonly, these children develop repetitive, self-isolating cycles or patterns to create order and sense from what can be for them an incomprehensible, orderless world. So often they will come in to the music therapy room, find an instrument to play and soon get stuck or lost in one of these repetitive patterns – endlessly playing up and down the xylophone or beating a drum, unable or unwilling to stop; perhaps for fear that in the silence the incoherence of the ‘real’ world will return.
One of our tasks as therapists in this situation is to make that silence bearable. To use it to punctuate the music we make together, in order to make our musical connection meaningful and understandable. In doing so, we can then offer a pathway out of isolation to be able to communicate in a slightly more endurable world outside.
Silence in music therapy, as in life, can take on many qualities. It can be oppressive or mutual, uncomfortable or soothing. I often find in music therapy with verbal adults that when a long musical improvisation ends it is very difficult to come straight back ‘into words’. Here an instinctive shared silence – sometimes of as long as a minute, can act as a de-compression chamber allowing us time to return from the intimacy of spontaneous shared music-making back into the realm of words and interpretation.
Many who go to classical music concerts will recognize that instinct in the couple of seconds’ silence between the music ending and applause starting. It brings audience and musicians together in a moment of shared, intimate stillness, reminding us that what was experienced individually was also experienced together. And again it acts as a transition back into the wider world. That is of course unless some idiot ruins the silence with a self-agrandising ‘bravo’ before the final note has even ended.
So really when we talk about the power of music, perhaps we have in mind the eternal dance between music and silence, one framing the other to create meaning that is unique to each of us, spoken in a language that is universal.
Please click this link to view the video associated with this story: Man, 19, With Special Form Of Autism Finds New Way To Express Himself.
A nonverbal teen with autism has found his voice.
19-year-old Neal Katz has gone from not being able to speak to being able to translate his thoughts through an electronic device, as he demonstrates in the CBS video above. Katz is now able to perform tasks such as order in a restaurant and go to the grocery store.
“I work here in Malibu every Thursday,” Katz told CBS through his machine. “I plant trees, pick fruits… put down drip irrigation.”
Hall said that her son’s electronic device, as well as the workers at the Shalom Institute, have helped him express himself and learn through interaction with nature.
Katz has recently been offered a full-time job at an organic farm.
“He loves it. It’s given him so much pride. They pay him. He saves his money. He’s so proud of who he is and what he’s become as a result of the Shalom Institute,” Hall said.
Summer is coming. At the very least a summer attitude has been around for a while now: shorts, flip flops, and warm weather. By now many families on the Spectrum have had their annual CSE meetings to plan for the summer and next year. A funny thing happened; we had our meeting for Mike at our district’s Special Ed office. For the last few previous years when Mike was attending Nassau BOCES Rosemary Kennedy School, we went there and participated via phone conference at a table where his teachers and service providers sat. Those teachers and providers were all very much on the ball; having sent us copies of new goals and objectives to review before the meeting actually took place. Smooth as silk.
This year, not so much. Maybe it was the break in routines for both us and the district CSE, who hadn’t physically seen us in for at least 3 years. Everything was going really well as the teachers and service providers from Island Trees Memorial Middle School reviewed Mike’s progress this year, his first at the school. The district’s psychology chairman who was running our meeting suddenly realized that Mike was 14 this year, and started the discussion about pre-pre-planning his transition from middle school to high school and (presumably) beyond. He spoke glowingly about how much progress Mike had made both behaviorally and academically, and that maybe (!) Mike would make that transition back into district, since the district Special Ed programs and curricula had itself grown and expanded.
Blah, blah, blah…
As my wife and I looked at each other, we knew we had the same thought process simultaneously: no effing way in hell is Mike ever, ever, ever going back to district schools. Ever. He was what we termed their ‘guinea pig’ many years before as the district essentially began their fledgling, rudderless, eternally-incompetent start to their Special Education program; subjecting him to different, often divergent methodologies of teaching and addressing autistic behavior.
Ummm, no. Hell no.
Well, this started an avalanche of unforseen and unintended discussion, so much so that it wasn’t until we got back home that we realized that we were derailed, and did not go over any of next year’s goals and objectives. The good thing was that we never signed any documents at the end of the meeting indicating that we agreed with all that was discussed during the CSE. As we learned many years ago, never sign anything at a CSE other than an attendance sheet. As embarrassing as it was for 2 parents who consider themselves relatively ‘on top of things’ to forget to review our son’s goals, it was not an irrevocable faux pas.
My wife promptly called the district CSE, informed them of the oversight, and was able to have a copy of next year’s goals mailed to us for review. After the goals came in the mail, she went over each of the goals with the parent trainer who visits almost weekly, and was able to break down the goals, or tweak them. She scheduled a telephone conference with Island Trees’ teachers and providers and went through what changes we (she) wanted implemented in the goals. She then told them to make the changes or we would unfortunately need to schedule another CSE meeting before this school year ends.
Did I mention that my wife rocks? She is ‘Autism Warrior Mom’ personified.
Summer is coming. That means day camp, swimming, ice cream and all that good stuff. I hope all your kids’ goals and objectives have been addressed to your satisfaction, so that you can enjoy summer with them.
JAMES TOWNSHIP, MI — The gym at Shields Elementary School quieted as a crowd of children wearing bright orange shirts linked arms, encircling third-grader Ashlyn McGregor as she stepped to a microphone.
“The struggles I’m facing, the chances I’m taking, sometimes might knock me down, but no, I’m not breaking,” Ashlyn sang along to the voice of her favorite singer, Miley Cyrus, and her song “The Climb.”
The 9-year-old’s performance stands out in the school’s annual talent show because of the journey it required for it to happen. Eye contact and volume are just two of the struggles Ashlyn faces as a student with autism spectrum disorder.
According to the Autism Alliance of Michigan, at least 15,000 children and young adults in Michigan are receiving services for autism through their schools. Shields Elementary offers a peer support system of 69 students, or “Vikes,” who mentor autistic students and were there to help Ashlyn at the talent show.
Principal Shelley Ducharme called Ashlyn’s performance “awesome,” and cheered the impromptu hug between the student and her Vikes.
“Every day they are with her, when she needs it,” Ducharme said.
The group includes Noah Furlo, 8, and Lauren Hildebrandt, 9, who have been mentoring Ashlyn from the beginning and said their friend did “really good” at the talent show. They said they will keep supporting Ashlyn; Furlo is especially outspoken and alerts new or substitute teachers to Ashlyn’s autism.
“I will keep helping her out, ’cause maybe the other teachers don’t know,” Furlo said.
Ashlyn attended kindergarten elsewhere, and teachers did not know how to handle her disorder, her father Jason McGregor said. Her mother, Christina McGregor, said she was told her daughter “could not be taught.” They moved their daughter to Shields Elementary in the first grade.
“After the first year here, we sold our house and moved here. They have worked with her tirelessly,” Jason McGregor said.
Kathy York is one of the teachers who has been following Ashlyn’s education since first grade.
“She just took to learning,” even placing in the top students for the Accelerated Reading program, York said.
“It just shows how far she has come and how comfortable she feels,” York said.
Ashlyn’s younger sister, Morgan, is in kindergarten at Shields, and her younger brother, Jason attended the performance with their parents.
“I wish all the schools were like this. She’s not hidden away in a classroom. She’s in the general education setting,” said her mother, Christina McGregor.
Twirling a bouquet of purple flowers her parents brought for her, Ashlyn said she was not nervous about singing because of how long she practiced. She is planning a repeat performance next year, once again featuring the work of her favorite singer, Miley Cyrus.
“It is the best day of my life. Next talent show, I’m going to sing ‘Best of Both Worlds,’” Ashlyn said.
A group of 15 will travel to Spain to help The AutistiX on their first tour
A group of north London musicians who have overcome extraordinary obstacles are about to embark on their first international tour.
The members of The AutistiX, as the name suggests, all have autism, but they have not let any of their disabilities get in the way of a tour in Spain and recording their first album.
Luke Steels, 17, electric guitar and bass, Jack Beavan-Duggan, 18, electric guitar, and Saul Zur-Szpiro, 20, on the drums, practice at least once a week and have played gigs including the Beatles Day in Hastings, but this will be the first time they have gone on tour.
Saul’s mum, and band manager, Susan Zur-Szpiro, said: “They started producing their own music and creating these very beautiful, quite biographical songs.
“It’s not about getting the sympathy reaction, they just happen to have their disabilities which makes them interesting and quirky as an act.”
Jack, the lyricist, penned songs including The Good and Bad in All of Us and Hard to Reach and says music is about “writing songs and showing who I am”.
Carol Povey, the director of the Centre for Autism, said: “Autism is a social and communication difficulty and affects the way people interact with other people and the world around them.
“Some people will have very high support needs, no language or communicative ability and challenging behaviour, right the way through to people who have very high IQs but may struggle to relate to other people.
“You wouldn’t normally think of people working together [like The AutistiX] and I think it’s fabulous and it really blows apart most people’s expectations.”
The Camden-based group who are joined on stage by Jack’s father John, Saul’s dad Michael and musician Jim Connelly, will play three gigs with Spanish group Motxila 21 who all have Down’s syndrome between 24 and 30 May.
But The AutistiX have come a long way to get there.
Mrs Zur-Szpiro said: “My son could really do nothing, he was blind, he couldn’t move, he was really very low-functioning so we just took it a step at a time and he’s way beyond anyone’s expectations.
“He can’t dress himself, he can’t feed himself and can’t look after his own basic needs but he’s the drummer and it’s mostly learning through his auditory skills, he hears something and he knows it.”
Before The AutistiX set off on tour there were a lot of things to consider including the fact that they would be relocating each day.
“Change is an issue because they like the familiar and they can be thrown by anything changing”, Mrs Zur-Szpiro said.
“I’m very aware of the sensitivities and so we’re doing all the major transitions during the day so they adjust and see it [each town], each of them have a parent or carer with them so they have that continuity and we’ve looked at YouTube so they know what Motxila 21 look like.
“We are embarking a little bit into the unknown and it’s going to be hard work but it should be amazing.”
As well as musical experiences there are other benefits for The AutistiX too.
The manager said: “They lack a normal peer group and this band has been amazing in providing a social network for them, they’re the centre of each others lives.
“And there’s no drinking and drugs going on, that just doesn’t happen.”
Butterflies and DemonsThe AutistiX also have a natural ability on stage which many performers might be envious of – they do not get stage fright.
Mrs Zur-Szpiro said: “Sometimes they’ve performed in front of several hundred people, but they don’t have any concept of being judged. He [Saul] loves being up on the stage and has music in every cell of his body.”
The band will play their gigs in Pamplona, Durango and Getaria and once they return to London they will be looking forward to releasing their first EP, Butterflies and Demons, which they recorded at EMI Roundhouse in February.
And although they might be a “quirky” rock band Mrs Povey, added: “The important thing is the audience is not looking at the disabilities and not looking at what they can’t do, but looking at what they can do.”
Program gives children career skills in multimedia, print.
Enter C.J Jackson’s world and you’ll find a lot of Mario Kart. The 10-year-old has been fixated on the go-kart style racing video game for years.
For Gabe Hailer, 10, it’s elevators. Sometimes when he worked on his graphic illustration of elevator levels at Discovery World this spring, he took breaks from class to go ride one for a while, up and down, up and down.
C.J. and Gabe are part of an increasing number of children diagnosed with autism spectrum disorders, a group of neural development disorders characterized by repetitive behaviors and difficulty communicating and interacting socially.
Some parents struggle to imagine a future where their child with autism disorders will be able to function independently and pursue a career. And at present, there’s a dearth of programming that caters specifically to their children’s needs.
With intelligences in splinter areas, children on the spectrum can feel out-of-place in programs for kids with significant physical or cognitive disabilities. But their social challenges make it equally difficult to thrive in programs for traditionally developing youth.
The experimental Sunday morning academy for children with autism spectrum disorders such as Asperger’s syndrome fosters creativity through technology while teaching basic skills in programs such as Illustrator or Photoshop. Each child with autism is paired with a professional mentor from Milwaukee’s creative community, who volunteer their time for a few hours on five Sundays to help work with the child on a project.
A key feature of the program: having each child’s illustration, design, comic or animation focus on one of his interest areas.
“This is teaching skills that are marketable,” said Mandy Chasteen, Gabe Hailer’s mom. “Gabe struggles in art class in school because there are so many variables. Here he knows exactly what to do, and he can control it better.”
The Sunday lab academy was conceived by Mark Fairbanks, the co-founder and chief aesthetic officer of Translator, a brand design agency in the Third Ward that hosts open-house style idea-share labs on Tuesday and Thursday mornings. Fairbanks and the Translator team partnered with Discovery World for lab space. They developed a curriculum for two tracks for participants to explore: multimedia or print.
Fairbanks’ wife, Margaret Fairbanks, is a special education teacher who helped design the curriculum. They engaged volunteer paraprofessional educators to help the student-mentor teams. Professional mentors came from their connections in the design industry.
“The way the creative community gives back is that they do pro bono ads to win awards,” Mark Fairbanks said. “We see this as a much better way to be creatively involved in a cause that actually connects with children, regardless of whether they go on to be a designer or developer. They get to engage with not only like peers, but also a mentor who might be able to unlock an area of potential.”
Islands started small with a handful of students and mentors in the first class in fall 2012. The spring’s session that just finished included 11 students between the ages of 9 and 14, paired with 11 mentors.
At the end of the five weeks, the students and their mentors present their work during a share session.
The program is free so far. The Translator team and Discovery World would like to see it grow, but they’re intent on keeping it highly personalized for each child and mentor.
Few models exist for how to design meaningful programming for children on the spectrum. Given their social difficulties, it can be hard to engage the children in an activity adults prefer them to work on, rather than on one the child prefers.
Tim Kabara, center director for the Maplegrove Treatment Center, a West Allis company that creates year-round and summer programming for kids and adults with autism spectrum disorders,said independent programming has not kept pace with the number of new diagnoses.
“We started nine years ago and we found the benefits of the groups being homogenous,” Kabara said. “They feel more comfortable, and they’re more likely to have similar interests. We found that’s a huge step toward getting them to let their hair down and be willing to engage in an activity.”
Islands of Brilliance has personal roots. The Fairbankses have a 14-year-old son, Harry, who was diagnosed with autism spectrum disorder at age 3.
One day, Harry peered over his father’s shoulder while Mark was working in Illustrator.
Mark showed him a few basic concepts, then left Harry to play around in the program. Thirty minutes later, he said, his son had drawn Thomas the Tank Engine — a cartoon the boy loved — using the program’s more sophisticated features.
“He had figured out how to use the pen tool and apply colors and gradients, things I had not shown him,” Mark Fairbanks said during a presentation about Islands of Brilliance. “In a digital age, he can contribute content and make connections for the rest of his life.”
During the most recent Islands session, Harry worked with Justin Hutter, a web designer, to develop a comic series and website.
The spring Islands session wrapped up May 19, and the nature and range of the children’s disabilities makes for a nontraditional share session.
One student presented his poster by holding the illustration directly in front of his face as he spoke, muffling his voice and obscuring his head.
Another jumped up from the audience and started pointing things out on the other child’s work.
When it was C.J. Jackson’s turn, he was so excited to show off the Mario Kart storyboard he created with mentor Simmi Urbanek that he read each and every word on the board, tracing his pointer finger over the letters as he went.
Instead of applause, which unsettles some children on the spectrum, audience members slapped their thighs in encouragement.
Kimlon Jackson, said her son was still nonverbal six months ago. When he was 3 1/2, she said, he only knew five words.
“The program combines CJ’s passion for design in an environment that understands his social challenges, and in a way that could lead to gainful employment in the future,” Kimlon Jackson said. “It’s like a breath of fresh air.”