Children like Lillian are why the Turning Views Foundation and the Gift a Voice Project were created. The Foundation’s intent is to make a DIFFERENCE for those that are DIFFERENT. First, by providing to nonverbal and/or speech impaired children an iPhone or iPod touch so they can FINALLY have a voice and be able to communicate in a more fluid and modern way. – Camilla Downs
Want to help us? Make a cash donation, donate your last generation iPhone, iPod touch or iPad, or host a Gift a Voice Cell Phone Recycling Drive. Visit our Get Involved page to learn more ideas. We are a 501(3) non-profit and will provide you with a donation receipt.
(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.
(If you would like to share this with your Facebook Friends you can do that here! Thanks everyone!!)
(Guest post by Mary Clare Tarpley – Mary blogs at Mommy Square)
When you see my son, Luke, you will first notice his beautiful blue green eyes that sparkle and his amazing dimples. He is simply adorable. A real cutie patootie! He looks like other children that are 2. You can’t tell by looking at Luke, but he struggles to communicate.
Upon closer observation of Luke, you will note that he is often silent and makes very few sounds, some utterances and has about fifteen approximations. Luke has Childhood Apraxia of Speech.
If Luke could tell you about himself, it would look something like this…
Hi! My name is Luke.
I live with my mommy, my daddy and my sister Maggie.
I call her “Gee-Gee”.
She is my best friend.
I like trains, balls and puppy dogs.
I love lollipops, popsicles, doughnuts and candy.
I call them “pops” and “yum-yums”.
I like to go to the mall and to Publix.
I love to play outside, go to the park and jump on the trampoline.
I really like to help out around the house.
I don’t like tags on anything.
I am very good at telling you what I want or need without saying a word.
When I can’t get you to understand me, I sometimes get frustrated.
I have lots of visitors and visits during the week for therapy.
Therapy is another word for work.
I get excited about going to “school” and gymnastics.
My favorite family trips have been to Disney.
I try to show my family that I love them.
I cannot wait to be able to tell my mommy, my daddy and my sister…
I love you!
I have been trying to assist the Different Iz Good Foundation with their Gift A Voice project. (http://differentizgood.org/gift-a-voice/) This project helps give children who have speech impairments a means in which to communicate.
It is very dear to my heart because my Luke has Childhood Apraxia of Speech. CAS is a neurological condition that impairs speech. Although he may know the word or words he wants to say, the motor planning doesn’t work correctly. We are working to retrain his brain to form these connections for movement with LOTS of therapy and have been given a good prognosis for the future.(http://www.unlockinglukesvoice.com) If you can help in any way with this project, please do.
I try to think of CAS much like a padlock that is keeping Luke’s words contained in a vault (the brain) and that we are the detectives who are trying to figure out the code that will break open the lock on his voice~by helping DIG with the GAV project~you are providing part of the code~almost like being a key. 😉
(Please share this post with your Facebook Friends if you’d like to let them know what we are up to here at DIG! Thanks -Camilla)
(Guest post by Loni Scovill Smith – Loni blogs at His Apraxia Journey)
I knew pretty early on that there was something wrong with Ian’s speech. His first “words” were really just a series of grunts. He had a grunt for everything and while it was endearing in the beginning, as new sounds began to emerge, communication with him quickly became a frazzled real life version of the Mattel game Mad Gab. Ian is our third child and although I’d heard all of the excuses from others (“boys are late talkers” “he has older siblings to speak for him”), I felt certain that there was more to his speech difficulties. I talked about Ian’s speech a lot in the beginning. I think I was trying to reach out, looking for some information to grasp onto and I was met with a lot of shoulder shrug responses. To save Ian from having to endure confused looks or being waved off by others, I felt that it was my duty to explain to everyone that he couldn’t talk very well and that he just needed some patience to get his point across. My need to explain paid off one day when a woman said to me, “Ian reminds me of my grandson.” She then proceeded to tell me about her grandson’s diagnosis of Childhood Apraxia of Speech and told me to call the school district to get him some help. Being the avid, obsessive researcher that I am, I spent the next few days on the internet digging around for any information I could find on the condition. I’m sure that by the end of it I looked like one of those red-eyed, unkempt cartoon characters that haven’t had their morning coffee yet. The school district got Ian in immediately for an evaluation. They concluded that he was behind verbally and developmentally and said that he wasn’t even on the charts for his age group. At this point, you’d think I would have cried, but what they told me was something I’d already known in my heart for a long time. Instead of tears, I felt at peace. Finally, there was confirmation that he needed help and he was going to be getting that help. They enrolled him in the developmental preschool for the following Monday and started him in speech therapy. Ian’s diagnosis for Childhood Apraxia of Speech didn’t come for another nine months (in December 2009). His therapist pulled me aside after a session of therapy and mentioned that he might benefit from a communication device. The device – a Dynavox computer – was $8,000.00 and would partially be covered by insurance, but only if we had an official diagnosis. Willing to do whatever it took to help Ian, I agreed to it and his therapist formally gave him the test for Apraxia. This time, I cried, but it was out of pure relief. The diagnosis that I’d been pushing her for was finally becoming a reality. With a diagnosis comes a plan of action – a series of steps to follow to tailor his therapy specific to his condition. The therapist got the paperwork ready while I stressed over the cost of the device. I spent a lot of time praying, talking it over with my husband and confirming with the therapist that this was the best option for Ian. This is where the story gives me goosebumps because I know that God had listened to and answered my prayers. I was playing around on my iPod touch and the idea hit me that I might be able to find some apps with fun games that would help Ian with his coordination. Searching for games turned into searching for flashcards with pictures which turned into searching for educational apps until finally, I stumbled on Proloquo2Go. My fingers started to shake with excitement as I viewed the screenshots – it looked very similar to the software that the Dynavox rep had shown me. I read the reviews, went to the website and called up the therapist. She was just putting our application into the fax machine to send to Dynavox when I told her to hold it right there and then proceeded to talk for ten minutes straight without stopping to take a breath. In short, the therapist (having no knowledge of Proloquo2Go) got excited, talked to her collegues and decided that we should give it a shot. That very night, my husband and I went to Best Buy, purchased an iPod Touch for Ian and downloaded Proloquo2Go. Over the last year, Ian’s speech has improved dramatically. While he is still unclear to most, he has the basic building blocks for speech in his arsenal. A large factor in his improvement was his iPod and Proloquo2Go. “Apraxia is a presumably neurological speech disorder that affects a child’s ability to plan, execute, and sequence the precise movements of the tongue, jaw, lips and palate that are necessary for intelligible speech. Children with (verbal) apraxia are able to hear and understand words; but they have trouble with the motor skill necessary for formulating consonants and vowels into spoken words. While they may have a few words or phrases they can speak clearly – what’s referred to as “pop-outs” – they are unable to imitate what is asked of them. While researchers have several theories, the cause of apraxia is not yet known.” (The Parent’s Guide to Speech and Language Problems by Debbie Feit, pg. 66.) Different iz Good’s Gift a Voice Project is about giving kids more than words. When you donate to Different is Good, you are also giving these kids a better chance at socializing, fitting in and expressing their deepest thoughts. You’re giving them a chance at just being a kid. Did you enjoy this article? We invite you to share it with your Facebook friends! Thank you!
(Guest post by Monica McDivitt – Monica blogs at Like a Butterfly)
Sam grabs my hand and walks me to the door that leads to our garage. This means she wants to go for a ride in the car. She usually grabs my purse, slings it over her shoulder, or cross body, and walks over to me. Today she communicated differently but I got the message.
After the hustle and bustle of Christmas shopping, visiting family, having family visit and being totally out of her structure, element and routine I believe Sam deserved to have some normalcy. She didn’t feel well on Christmas night and she is feeling the same today. She is congested and has what John and I usually call a “smoker’s cough” so I placed her in her car seat and we went for a drive… to nowhere. Actually we drove around the quieter streets of our Katy community, where it is calm and the trees are big and pretty. Sam didn’t mind.
As I drove, I had the car stereo on and it was probably louder than it needed to be but I love listening to music and Sam could feel the vibration of the bass from the speakers. I take a glimpse in the rearview mirror and see her beauty instantly. She is wearing a pink, holiday shirt with a peace sign on it, which she received as a gift for Christmas. Her hair is all pulled back into a ponytail with a big, pink bow and a curly lock of hair hangs on the right side of her forehead. She has an enormous grin on her face and she is kicking her right foot with much delight. I thought to myself, “She sure is pretty in pink and very happy.” I couldn’t help but smile.
Sam has never called my name or said Mommy and I am not always sure she understands what I say or do but I keep holding her and talking, reading, signing and singing to her and I encourage others to do the same. That’s all that matters. Sam smiles, giggles and cries. She thinks and observes and is a pretty amazing problem solver. When she takes my hand and walks me to the door that leads to garage, or walks me to the kitchen, bathroom, or even hands me a book or a toy, I know what she is saying. This month she has been giving big hugs and making more eye contact. Sam is communicating without speech.
Do I wish she 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. It is more than many doctors ever expected. This is Sam’s language and I am always listening with my eyes and ears.