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    Posted April 18, 2014 by
    Exton, Pennsylvania
    This iReport is part of an assignment:
    Communicating through autism

    To Hear My Name -- "Mama"

    All families face times of challenges and triumphs, but families of children with special needs understand the special significance when their children reach developmental milestones. For families of nonverbal children on the autism spectrum, reaching communicative milestones, particularly the ability to speak a name, a word or a phrase, is particularly meaningful. “To hear my daughter speak—to say my name—means so much more than just a word. It means that she can get my attention and communicate her feelings and her needs to me. It means that I have confidence that she understands what I am telling her,” says Amy Kelly, a mother of three children, including Annie, who was diagnosed with apraxia and autism spectrum disorder (ASD) a day before her second birthday.

    Amy explains that her family’s world changed instantly upon receiving Annie’s diagnosis. “Hearing three words, ‘she has autism,’ we suddenly faced a lifetime of uncertainty,” she says. “I had to mourn the dreams that I had for Annie—prom, graduation, a wedding—so I could redefine new dreams for her.” One of her dreams was to hear Annie’s voice. Breakthroughs eventually came, and continue with the help and support of her family, Devereux CARES (Childhood Autism Research and Education Services), and text-to-speech technology. Devereux CARES is a private school for children with ASD located in Downingtown, Pa., operated by Devereux, one of the largest nonprofit providers of behavioral healthcare in the nation.

    Before enrolling in CARES, Annie received a variety of in-home therapies each week, totaling about 38 hours. Therapists versed in Applied Behavior Analysis delivered speech, occupational, physical, and musical therapy. It was Amy’s use of music, she says, which facilitated the first real communicative breakthrough. “The very first communication between us began once I started singing to Annie, leaving pauses for her to fill in a lyric. Our song, ironically, was—and still is—Close to You by the Carpenters.” When Annie enrolled in CARES, she was introduced to PECS, or Picture Exchange System, designed to build children’s functional communications skills with an emphasis on spontaneous communication. There, Annie has continued to build her communication skills through the help of educational instruction and the use of technological tools.

    Amy notes how technology, particularly within the past ten years, is helping to improve individuals with special needs’ capacity for communication. Augmentative and alternative communication (AAC) devices have evolved rapidly within recent years, helping nonverbal individuals with autism to communicate with the world around them. An AAC device called DynaVox, allows an individual to select pictures, symbols, letters, or phrases in order to generate oral communication. Annie used the DynaVox for a time, later graduating to the iPad. “The DynaVox served as a great transition speech generator for Annie. Those devices tend to be used by individuals who have severe verbal communications challenges. I am proud to say that with hard work, and support from us and her educational community, Annie was able to move to the iPad,” says Amy.

    Touch screen tablets, like the iPad, provide easy, user-friendly touch screens; and mobile apps, such as the ProLoquo2Go are popular for individuals and families within autism community, helping individuals with autism to communicate with the world around them. “When Annie first got the iPad and learned how to spell words and phrases, it opened a whole new world to her, and to us. She has showed me things I didn’t know she was capable of,” says Amy. By the age of ten, Annie began to say “Mama,” and “one minute,” when she needed more time to complete a task. “It warms my heart to hear her voice,” says Amy. And, an added bonus, she says, is that the iPad’s popularity has helped boost Annie’s self-esteem. “Carrying the iPad along on outings makes it easy for her brothers and me to speak to her, and she feels good—just like any other kid—with her iPad.”

    Today, Amy treasures her “girl time” with Annie, especially when she hears Annie say “just us” and “Mama’s turn.” Annie uses the iPad in a number of ways, building her reading skills, and playing competitive games with her brothers, Danny and Ryan. Speech generation devices offer individuals more than speech, says Amy, enabling people like Annie to express their opinions, and exercise a level of independence. “I am so proud and inspired by how far Annie has come, and how far we have come as a family,” says Amy.

    While Amy’s life journey became very different than what she envisioned before Annie’s diagnosis, she has embraced her role as a mother of a child with autism, and as an autism champion. Over the course of the last 12 years, she explains that there were times when she felt the world closing in on her and her family. She prevailed through a divorce and a career change. Amy works for Devereux, serving individuals with autism, as well as developmental disabilities and behavioral disorders, and their families, in her role as the Devereux Pennsylvania Director of Family Supports and Services. She also serves as a family representative on several special needs boards within the community, and nationally.

    Amy was a LEND (Leadership Education in Neurodevelopmental and Related Disabilities) fellow from the Children’s Hospital of Philadelphia (CHOP) and is the co-chair for the local and national Family Advisory Committee for the CHOP Autism Treatment Network (ATN). “I am privileged to collaborate with some of the nation’s most brilliant scientists and physicians in the field of autism, and to work at Devereux, serving families like mine, who are in need of support and hope,” she said.

    Amy is thankful for the early diagnosis and intervention that continues to help Annie reach her goals, and build her life skills. With proper intervention, education and resources for families, she wants everyone to know that there is hope for those who feel overwhelmed by an autism diagnosis. “It is a process, but every year it becomes easier,” she said. “Successes can and will happen, with time and perseverance. I hear it every time I hear Annie say “Mama.”
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