As published in the November 2012 issue of Exceptional Parent magazine [View pdf of print article here].
Like most parents of children with special needs, Suzanne and Michael Emmi of Massachusetts have always wanted their son Matthew to have as many typical “growing up” experiences as possible. For Suzanne, who is Jewish, finding a way to help 12-year-old Matthew experience a bar mitzvah, the traditional Jewish coming of age ceremony, was particularly important. But how could a child with severe autism – one who could not read, write, or speak in complete sentences – read from the Torah or recite a blessing?
In Matthew’s case, it took a “village” to make this dream a reality. Because he had a loving family, a supportive religious community, a team of dedicated educators, and access to the latest technology, Matthew was indeed able to celebrate his bar mitzvah.
“It’s such a milestone in a Jewish adolescent’s life because it really is a coming of age celebration,” says Suzanne. “The first step was believing that he could achieve this milestone. But Michael and I have always had a ‘whatever it takes’ attitude when it comes to Matthew. We realized that there would be many developmental milestones he would not be able to experience, but we always thought we would find a way to help him become a bar mitzvah.”
Matthew could not participate in the traditional methods of bar mitzvah preparation such as attending Hebrew school or taking special lessons. But the Emmis took him to weekly services at the Temple where he enjoyed listening to the Cantor and became familiar with traditional Jewish melodies and lyrics. “He had some sense that the songs were connected to the Jewish faith,” says Suzanne.
A very social young man, Matthew loves to reach out and interact with others as much as he loves music. People call him “the Mayor” at the Temple and at his school in Woburn, Mass. – the May Center for Child Development – because he likes to greet everyone he meets with a big “hi!”
Introducing the iPad
As Matthew approached his 13th birthday, Suzanne’s desire to help him celebrate his coming of age grew even stronger. She and Michael set up a meeting with the Rabbi, Cantor, and the Temple’s Hebrew schoolteacher, as well as a speech and language pathologist and staff from the May Center school. Their goal was to discuss how Matthew might be able to “have a voice” at his own bar mitzvah.
Staff at the May Center had the idea that Matthew could use an iPad for the ceremony, and brought one to the meeting to demonstrate how it might work. Matthew had been using a special communication device for some time, and was familiar with touching a picture icon to activate recorded words. But the iPad’s smaller size, larger memory, and greater flexibility made it a better choice for the event.
At the meeting, May Center staff took a photo of Matthew’s little sister Mia with the iPad. Then she programmed in her name, pressed the picture, and the iPad said, “Mia!” Matthew laughed in delight. Then he pressed Mia’s photo to hear his sister’s name again. He had never seen an iPad before, but he took to it right away.
Everyone around the table grew excited as they began to discuss different ways to use the iPad to give Matthew a voice at his bar mitzvah. Although the Rabbi usually calls people up to do the readings at the ceremony, the group decided that Matthew could do this via the iPad. His voice could be recorded saying the names of many of his family members – mama, dada, nana, papa – and then activated when he touched the appropriate picture. The Cantor could record songs, blessings, and Torah readings, and the school staff would download them to the iPad and connect to appropriate icons or buttons that Matthew could press at the right times.
Teaming up for Matthew
Creating the icons, recording Matthew’s voice, getting the photographs, and loading in the music kept the team busy for a number of weeks. The iComm application for the iPad made all of it possible.
In the meantime, Matthew gained experience using the iPad during his classes at the May Center. The school had obtained several iPads over the past year and teachers have found them extremely helpful tools to help appropriate students learn how to express their needs and wants [see related article]. Like most young people, he quickly became adept at using the touch tablet. It wasn’t long before the Emmis got him an iPad to use at home that he now uses to interact with his family.
To help Matthew prepare for his bar mitzvah, May Center staff created a picture schedule – a large, laminated board with pictures. Matthew understood picture schedules, and this one outlined the order of events for the ceremony.
“Using the board, Matthew could see that there was a clear beginning, middle, and end to the service, and he would know what to do each step of the way,” explains Suzanne.
The bar mitzvah
When the big day arrived, everyone was ready – and no one was more excited than Matthew, who knew it was his day to shine. The Emmi family arrived at the Temple early and Matthew was able to greet everyone at the door with his usual enthusiastic “hi!” and a big smile.
Special accommodations had been made to help him successfully navigate this day. During a typical bar mitzvah, the young man is up on the bima with just the Rabbi and the Cantor. For Matthew, an 8’ table had been set up in front of the congregation so Suzanne and Michael were able to sit on either side of him during the service to give him the support he needed.
“I started off doing hand-over-hand with him, pressing the icons on the iPad,” remembers Suzanne. “The Rabbi would signal to us when it was time to press the next button. What was really exciting was that, midway through the service, Matthew was pushing my hand away and he was pressing the iPad independently. That was thrilling beyond words.”
Matthew obviously took great delight in his special service. When he wasn’t orchestrating the ceremony, he was smiling and waving at his friends and family members in the audience, moving his hands in time to the music, and, at one point, kicking off his shoes.
At the reception after the ceremony, it is traditional for the boy who is the bar mitzvah to light candles and read a poem for family members and friends who have special meaning in his life. Suzanne and Michael wrote a short poem for each person. A local Cub Scout volunteered to record the poems, and they were then loaded into the iPad. As a result, Matthew was able to “read” these poems at the reception by pressing the appropriate photo on the iPad.
A brand new hope
There were many tears of joy shed that day – Matthew’s day. For the Emmi family, it was an unforgettable experience. “People were so emotional and enthusiastic and in awe that he was able to make this happen,” says Suzanne. “There are very few times in life that something not only meets, but exceeds your expectations, and that was one of those times for me.”
Soon, many others would hear about the event. “I got calls from people in Seattle, Atlanta, Texas – people we had never met who now have a brand new hope for something they did not think they could ever do for their child,” says Suzanne. “I think our Rabbi really said it best about a month after the bar mitzvah when he said, ‘Matthew has done more and touched more people in his 13 years than many people get to do in a lifetime.’”
“I feel really proud of our family and our community,” Suzanne continues. “I’m so thankful that people came together and worked together to fulfill what was really a dream of mine. It gives me hope that if Matthew was able to realize this accomplishment, what else might he be able to do?”