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!

18p- Description and Image from Chromosome18.org

I’m in love y’all!  In love with my daughter, Lillian, in love with Janine Cody, founder of the 20 year old Chromosome 18 Registry, in love with Rick Guidotti of Positive Exposure and in love with absolutely every one of my fellow Chromosome 18 Registry members.  I love the sense of family we share and the feeling of understanding and closeness that our common thread holds.

I attended the Chromosome 18 Conference last week in Tulsa; at which we also celebrated the Registry’s 20th birthday.  This was my 2nd conference to attend.  Attending the conference solidified for me that I am committed and will attend this conference EVERY year. More than that, I absolutely must bring Lillian and Thomas with me, too.  I want Lillian to experience the joy, love and fun that the other affected kids, teens, young adults and adults experience while at the conference.  I want Thomas to be around and experience the pure love and sheer dedication of the siblings to the affected individuals.  The absolute number one aspect that moved me the most was the Sibling Panel.  These beautiful kids, teens and young adults are the cream of the crop.  I must have Thomas begin to experience and be around these fabulous people.

I cannot thank Katie Bailey Schilly enough for inviting me to present at the conference this year.  Had she not invited me and stayed on me I would not have attended this year and would have missed this eye opening and good for the heart and soul experience.  My presentations were “Safe Social Networking and Online Communities” and “Enhancing Communication with Technology and Social Networking“.  I so thoroughly enjoyed sharing my knowledge and passion with my Chromosome 18 family.  It meant the world to me!

Show up y’all! One never knows what will happen when you show up at events and engage with those whom you share a common thread.  Actually, you can help steer what happens if you set your intentions BEFORE attending these events.  I’ll expand on this a bit more in an upcoming post about the 2010 eWomenNetwork Conference!  Rick  Guidotti, if this makes it’s way to you, thanks from the bottom of my heart and soul for your enthusiastic offers of help, support and Positive Exposure’s images in furthering the upcoming Turning Views Foundation and the Different iz Good movement! You are an AWESOME and BEAUTIFUL man and I look forward to collaborating with you!!

If you are a part of the Chromosome 18 family or, heck, a part of any organization that supports those with genetic differences, I would love to hear your thoughts!

Y’all are stuck with me, Lillian and Thomas now! See ya in Indianapolis next year ~ July 2011!

On Wednesday, I watched my daughter, Lillian, as she got off the school bus, struggling with her backpack and walking to her destination in the back of the school.  My heart sank as I stood watching all the other kids bouncing around running and walking normally with their backpacks with not a struggle in sight.  Tears welled in my eyes; it was just one of those days.  She absolutely refuses to wear a backpack on her back and thus ends up carrying it by the little loop on the top.  It’s almost as big as she is.

As I drove home, it seemed as if time stopped for about 15 seconds and I felt so completely and utterly alone.  I chose to feel sorry for myself for a minute and welcome a wave of defeat ~ sorry that I was not blessed with a “typical” little girl.  A little girl that a mother can share life’s little moments with, talk with, have an actual verbal conversation with, hug and snuggle with, watch grow and blossom like most other girls.

I and moms like me have a different life with our daughters.  We watch them struggle with something as simple as carrying a backpack to class, struggle to speak and talk in a way that can be understood with mounting frustration because their little mind is overflowing with all the right words and phrases; but, the mouth, tongue and lips do not work as they should so we can understand.  We watch them struggle to dress themselves, struggle to open things, cut things, play on the playground.  We must listen to their complaints of tummy aches, this and that aches and not know why and add that to our list to try and figure out.  We don’t have the typical “How’d your day go and what’dya do with your friends today honey” conversations?  Ours are “How was your day today?”  And we get a thumbs up or thumbs down. Conversation over.

Only a minute though . . . .

I have a beautiful daughter who shines like no other.  She has a warm loving heart.  AND she is one stubborn hard headed little lady.  I am blessed beyond blessing that she is stubborn and hard headed.  This means she keeps on trying and keeps on trying and doesn’t give up as quickly on whatever she is trying to accomplish.  I have had moments with her that made my heart feel as if it would burst with happiness and joy.  When a speech impaired child tells you for the first time “I Love You” and says “Momma” for the first time, it is a feeling like no other.

This beautiful little lady, who is a self proclaimed fairy, will and does touch the lives of whomever she encounters in such a beautiful way that cannot even be described.  I am her mother for a reason and she my daughter for a reason.  Lillian has a beautiful soul and had some lessons to teach me and will continue to teach me.  She does at times help me to stay grounded.  I find myself wanting and feeling I should be doing more for Lillian; but know that whatever I need to do will happen as it should and I should not force anything.

It is my belief that I need these 15 minutes of feeling sorry for myself and moments of defeat to enable me to come out on the other side stronger and more focused on the path I am on and headed towards.  What about you? Do you feel moments such as these (for whatever reason) are needed and helpful?