Giving Sam a Voice

(Guest post by Monica McDivitt – Monica blogs at Like a Butterfly)

The Internet, Facebook and computers have been quite a gift to me. Some might criticize and complain that people share too much information or spend too much time “playing” on the Internet but the ability to form new friendships, network with other groups and families of children with and without disabilities, find resources and research from the comfort of my own home have all become invaluable to me. After all, this is how I met Camilla Downs, founder of The Turning Views Foundation and the Different Iz Good™ (DIG) movement and how I was given the privilege to be a contributor for her incredible mission.

Over the past few months, I have been exploring alternative ways to help my 10 year-old daughter, Samantha, to communicate. Sam was born with a chromosome 18q- deletion. As a result she has intellectual and developmental disabilities. Sam is also Deaf, nonverbal and her delayed fine motor skills do not allow her to hold a crayon without assistance.

Sam understands some American Sign Language but has not learned to sign consistently. If she does sign, her sign language is very subtle and if you blink, you will probably miss it. My husband, John, and I have tried several tools and devices over the years to help Sam communicate and participate in her daily and extracurricular activities – the Picture Exchange Communication System (PECS), object schedules and my own pictures with ASL signs are just a few.

In my first DIG contribution I wrote, “Do I wish Sam could speak? Would I love to hear her beautiful voice? You bet! For now, I get giggles, babbles, cries and gestures and if this is all I ever receive as far as communication, I can be happy.” I am true to Sam and still believe everything I wrote but I also know that Sam is an extremely bright child and she really makes me think…a lot! One day, recently, I was playing with Sam, speaking directly into her ear. In a sing-songy voice I kept repeating, “I love you.” Sam sat and listened attentively. She was incredibly engaged and when I least expected it and with a big smile on her face, I heard her vocalize “Ah la la.” I heard Sam say, “I love you” and I suddenly began to want more!

Success stories of the iPad being used with children who have disabilities have been popping up all over the local and world news: A recent New York Times article described the story of 7-year-old Owen Cain who has had a debilitating motor-neuron disease since infancy: “He does not have the strength to use a computer mouse but when a nurse propped her boyfriend’s iPad within reach in June, he did something his mother had never seen before. [Owen] aimed his left pointer finger at an icon on the screen, touched it — just barely — and opened the application Gravitarium, which plays music as users create landscapes of stars on the screen. Over the years, Owen’s parents had tried several computerized communications contraptions to give him an escape from his disability, but the iPad was the first that worked on the first try.”

When I read about and saw this story, I cried, thought about Sam and began to believe that she could be just as successful as Owen. Clearly, Sam’s disabilities are much different than Owen’s but, still, I immediately researched for more stories and articles and then purchased and downloaded the popular communication applications recommended by Camilla onto John’s iPad so we could present this information to Sam’s IEP (Individualized Education Plan) team. I felt so happy.

At our meeting John and I brought the iPad to demonstrate its greatness and how we wanted to help Sam to communicate. The team was impressed, but the reasons against the use of the iPad for Sam at school were: The district won’t allow it. Assistive Technology does not provide support for iPads. What if it breaks? What if it gets stolen? Is it going to be used as a toy or a tool? Would it be loud enough for Sam to hear? Does Sam have the key skills to use the device? I thought, “Seriously? Nooks and Kindles are allowed in our general education classes. What about our children in special education?” Frustrated, I stood up and voiced my opinion of unfairness and told them how the “rule makers” do not truly know or understand the needs of our children with disabilities. They do not live with our children everyday and they do not teach our children during a 7-hour school day. When all was said and done, I remained calm and level-headed but felt extremely disappointed!

Sam is using the Dynavox M3 for now. In order for AT to recommend and provide support for any device like the iPad, John and I were informed that the district needs data to support the decision. If they would give Sam a chance they would see Sam’s face light up when she works with the iPad and they would already have their data and I wouldn’t be writing this story. Sam is enthusiastic, curious and engaged with the iPad. She loves computers. She does wonderfully with cause and effect activities, she can use her fingers to draw on the iPad and I know with time, patience and practice she can learn so much more.

I am still working on this issue with the district. Anyone who knows me also knows that I do not give up and I am quite persistent. After a very recent inquiry, I learned today that the iPad will “probably” become more prevalent with students in our district, however, it will be based on an assessment to determine the need and appropriateness of the technology. I don’t think this is a “no” to the iPad for Sam but it’s not a “yes” either so I have much more work to do.

I don’t expect a “miracle” when Sam uses the iPad. I just believe in her and I know she can learn to use it. WHAT IF she could recognize that she is “Sam” or that I am “Mommy” or is able to recognize “Daddy” on an iPad? Camilla made me think about this after she read my first guest contribution and sent me a private, heartfelt message. How cool would that be? Aren’t we all deserving of such a gift?

I know I probably wear out the school administrators and they might want to run in another direction when they see me coming because I am always creating new ideas or asking for something. If I do wear them out it is only because I love and care about Sam – HEAPS!

Deep in my heart I am an optimist so I know this WILL happen for Sam. One day, very soon, she WILL have her own voice with an iPad and I will let you all know when this happens.

If you haven’t seen the video “Becoming Han Solo” or read Owen’s story it is definitely worth your time to click on this link: http://www.nytimes.com/2010/10/31/nyregion/31owen.html
WARNING: Grab a tissue. :)

XO Monica

(If you would like to share this with your Facebook Friends you can do that here! Thanks everyone!!)

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4 thoughts on “Giving Sam a Voice

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