Throwback Post: The Gift of Communication

**THROWBACK POST**

December 2 2010:

WooHoo Y’all! The RN&R article about Turning Views Foundation and Different iz Good came out today! Kat did a great job of condensing the ton of information I spilled out to her!

https://www.newsreview.com/reno/something-to-talk-about/content?oid=1883366

By Kat Kerlin
[email protected]
This article was published on .

Lillian Darnell holds the iPhone that, though speech impaired, allows her to talk through a special app. Her mom, Camilla Downs, stands beside her.

PHOTO BY KAT KERLIN

Lillian Darnell was 3 years old in 2004 when her mother, Camilla Downs, received a phone call from her pediatrician.

“It was a phone call that landed me in a place I never thought I’d be,” says Downs.

Lillian had been born a month early, so Downs attributed the developmental delays she’d noticed to the fact that she was a preemie. But that day, she discovered Lillian had a chromosomal abnormality, so rare it didn’t really have a name: It’s just called 18p-, a deletion of the short arm of chromosome 18.

“The main way it manifests for her is communication,” says Downs. “Everything is in her mind, she just can’t articulate it.” Lillian is about 90 percent unintelligible.

Before this year, Lillian, now 9, had been carrying around a heavy, clunky “augmented communicator” called Dynavox. She actually had to pull it on a cart behind her at recess. Then Downs heard about Proloquo2Go, an iPhone app that could do the same thing, but on a smaller and, let’s face it, cooler device. She bought Lillian an iPhone and had the app installed. Lillian carries it in her purse, which has a speaker clipped to it to make her “voice” louder. There are programmable buttons on it for typical things she might say in class or to her friends, as well as a section for things she could say in emergencies. For other things she wants to say, she can type it into the keypad and press “speak.”

The whole thing cost less than $1,000. Compare that to the $5,000-$10,000 people pay for augmented communicators. However, health insurance and Medicaid will pay for those clunky, expensive devices, but not for iPhones, iPads or iPod Touches that could have apps like Proloquo2Go installed on them.

“There’s no reason these kids should have to wait to have a modern way to communicate,” says Downs.

The school district will provide an iPod Touch or an iPad to the speech impaired, but not an iPhone, which Downs wanted Lillian to have for emergencies. So she decided to start a nonprofit, Turning Views, which encompasses the Different Iz Good movement to help kids like Lillian. Key to that is “Lillian’s Voice,” the recycling program that takes used iPodTouches, iPhones and iPads and gives them to children who are speech impaired or nonverbal. She accepts “last generation” devices, meaning more recent models, as some older ones may not be able to have the app installed on it. Look for “Lillian’s Voice” drop-off boxes at New2U Computers and Mac-O-Rama. (See column note for details.) People can also donate money or gift cards from iTunes or Apple on the nonprofit’s website, www.differentizgood.org.

“People still haven’t caught on that these are more than just phone and music devices,” says Downs. “It’s not just the app itself, but the shift that has occurred in society. It’s a communication revolution, in a way, that includes the nonverbal and speech impaired in a way they never have been before.”

What does Lillian have to say about it? She punches some keys on her phone, looks up, nods her head and presses “speak”: “I like the iPhone.”

Different iz Good . . . Spread the Word

It’s time to begin unveiling The Turning Views Foundation and the Different iz Good™ movement.  Those of you who know me know that I’m Mom to Lillian Darnell, 9 yrs old, and Thomas Darnell, 4 yrs old.  Lillian has a Chromosome 18 abnormality called 18p-.  The  main way in which this manifests is that Lillian is speech impaired (she’s about 90% unintelligible). Lillian uses an iPhone with an AAC Application called Proloquo2Go to speak.

Turning Views Mission is To Empower Those With Genetic Differences by giving them a voice, helping them to be a part of the conversation like NEVER before! Turning Views Slogan is Different iz Good . . . Spread the Word!

Our main goal is to provide nonverbal or speech impaired children with an iPod Touch or iPad with the Proloquo2Go AAC Application (or similar) installed and all needed accessories.  In addition, to train caregiver and/or the child how to use the device.  Another goal is to hold workshops in conjunction with schools and speech therapist to educate regarding this technology.

This device and application are life changing in an unbelievably good way for the nonverbal and speech impaired.  Insurance companies and Medicaid do not cover these.  The alternative up to this point have been heavy, bulky devices that cost anywhere from $7,000 – $10,000.  One can have an iPhone or iPod Touch with the Proloquo2Go application installed and all needed accessories for around $600 – $1,000.

One additional major aspect of the Turning Views Foundation is to educate how technology combined with Social Networking sites improves quality of life for special needs children ~ especially nonverbal and speech impaired children. The way in which we communicate and conduct business has fundamentally shifted and changed forever.  It is my opinion that the World has shifted in such a way to include the speech impaired like they have NEVER been included before.  We are no longer solely communicating with our mouths and voices.  A large portion of the population is communicating using technology and social networking sites.  The speech impaired are now able to be a part of the conversation like NEVER before.  Their community and those they can engage with, socialize with and conduct business with has grown exponentially.  A second phase to our mission is to facilitate the making of entrepreneurs of those special needs children, teens and young adults who choose to pursue this exciting venture.

Different iz Good . . .  Spread the Word ~ we will be rolling out tons of DIFFERENT and fun ways for y’all to help spread the word.  I invite anyone who knows a special needs child, teenager or young adult (and even they themselves) to post a video reply on the Different iz Good YouTube channel telling us why Different iz Good, Different is Beautiful and Different is OKAY or what it means to you.

I believe Lillian is different for many reasons.  She is a special young lady who shines like no other and has a beautiful inspiring energy about her.  She is here to teach me and the rest of us some lessons.  One of which is to embrace technology and the shift in the way we communicate or at least approach with an open mind to how life changing this is for some of those amongst us.

Spread the Word Y’all ~ Different iz Good!

I want to steal a  bit of space here and thank a ton of special wonderful motivating and inspiring people for encouraging me and being a part of the creation and birthing of the Turning Views Foundation and the Different iz Good movement.  First, and foremost, Susan, a fellow 18p- Mom.  When I came across the phrase “different is good” in something she had written about a year and half ago, I asked her at the time if I could use that phrase on t shirts.  {Thanks Susan ~ you are a beautiful, smart and amazing Mom to IM.} It has since grown into the slogan for this 501(c)3, Turning Views Foundation.  My wonderful and supportive family who at times, I’m sure, wonder if I’ve lost my mind!! My Chromosome 18 Family ~ having y’all there means more than could ever be expressed in writing.  My eWomenNetwork Family ~ Love y’all to pieces – many times y’all are my glue and facilitate my Glow!  My friends from Oaklawn Junior High (Houma, LA – way down in da bayou) ~ I’m blessed to have y’all in my life!  Friends from my past and my newest friends and supporters.  Thanks a million to all of you!