Tag Archives: d iz for different

O is for Observe

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Camilla and Lillian

“Most people see what is, and never see what can be.” -Albert Einstein

Observing, paying attention, being aware of the present moment.  What’s happening, who you are with, are you having a conversation? Are you really being present for the conversation or are you thinking about all those bills that are due or what you’re making for dinner or what happened on the last episode of your favorite show.

Observing and paying attention are keys to our own happiness and success.  In addition, they are crucial in our function as special needs parents.  Have you noticed that many with intellectual disabilities are more intuitive than us typical folks.  They can sense insincerity, they know when someone is not being present, not listening to them, “faking” kindness. {Just had someone point out that they think we ALL sense insincerity.  I’m thinking I didn’t use the proper words to describe what was going on in my head! From my perspective, as Mom to Lillian, I have noticed that Lillian is super sensitive to adults in her charge who are insincere – even when I sometimes don’t initially sense it.  I’m also not saying that those with intellectual disabilities are “more” than those of us who have all of our genes.  I believe some who are missing genes have a heightened or increased awareness in some “areas”.}

How will we guide our kids with special needs into a fruitful, happy and successful future if we are not present for them?  Observe their likes, dislikes, what are they good at doing, favorite hobbies and maybe they have topics or interests they seem obsessed with . . . the weather, the time, making lists, making a plan and sticking to it.  Observe these and then use these qualities to their advantage in life.  They like these things for a reason.  It’s not up to us to figure out why they like or don’t like something or why they are obsessed with a topic.  Let’s observe, be present and give them every single opportunity we can to blossom and use the special and unique gifts they have.

I recently returned from the Chromosome 18 Conference and I was humbled by the young adults.  {The photo above is Lillian and I at Reno/Tahoe airport headed to the conference in Indy.} One of the last conversations I had with my Chromosome 18 family was in the hotel restaurant having lunch with 20 year old Kati. Kati’s mom, Deb, and I began talking about movies and I mentioned the Lion King. Kati said that was the first movie she had ever seen.  Then she proceeded to tell me the second movie, the third movie, the fourth movie and on and on up to the Last Harry Potter movie she had seen.  She remembers this about books she’s read also.  I don’t know about you; but I find that pretty darn amazing.  I was in awe of this young lady.  How many of you remember every single movie you have seen beginning with the very first one.  Kati loves to plan events and trips.  She is planning a trip to Vegas for her 21st birthday which is a little less than a year from now.  She loves horses and wants to travel to New Zealand and Florida.  This young lady is amazing and look at the unique and special qualities she has been gifted.

I was also intrigued by how many of the young adults have as a dream working with animals and/or children.  It seemed to be a very common thread.  I asked my friend, Catherine Burzio, if she thought it was that each was simply picking up or borrowing what the previous young adult had said.  She said “No, that’s not it at all”.  It’s the unconditional love that animals and young children give.  I fully understand that for one reason or another there are reasons that some of these young adults cannot work as a vet or even a vet assistant or in a child care facility.  But, do you think if we observed them more and were present more we and possibly a coach and our community could find or create just the right fit for them.  A fit that gives them the opportunity to do what they love and enjoy and are good at and earn money for themselves.

I don’t know and I’m not at all saying this is the right technique for everyone . . . I’m just thinkin “out loud”.  What do you think?

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More About Camilla

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I’m Mom to Lillian and Thomas Darnell and I speak, train and consult with small businesses and nonprofits regarding Social Media Marketing.  I’m also the founder of the Turning Views Foundation, Different iz Good . . . Spread the Word movement™ and the Gift a Voice Project.

My five year old son, Thomas, cracks me up with his fantastic imagination and adds to my joy and happiness in an indescribable way!  My nine year old daughter, Lillian, is a self proclaimed fairy angel and I happen to agree with her 100%.  Lillian is the spark that ignited the creation of the Turning Views Foundation, the Different iz Good movement and the Gift a Voice Project.

In mid December 2004 I received a phone call that changed the direction of my life and landed me in a Different place than I had planned and a Different place than I had ever dreamed.  Lillian’s pediatrician phoned one evening during dinner to let us know that she had gotten the results of Lillian’s Karotype testing.  This is a test where blood is drawn and examined on a cellular level to check for chromosome abnormalities.  Lillian was born on September 14, 2001 about a month before her natural due date.  She was a bit different from the first day of her life and a bit behind with many milestones.  Being a new Mom I just kept associating her delays to being born a month early and being a preemie baby.

Lillian’s pediatrician delivered the news that she had a chromosome abnormality.  Specifically, a deletion of the short arm of Chromosome 18, referred to as 18p-.  I cannot remember a great deal of the rest of the conversation as my mind sort of stopped and I started thinking, “Wait a minute.  What are you talking about?  No, this can’t be right.  No, No, No.”  I remember mention of it being very rare and that visits to specialists must begin immediately – heart doctor, eye doctor, geneticist, etc.

I immediately got online and began researching Chromosome 18, 18p- and chromosome abnormalities.  I learned a GREAT deal online and even knew more than the geneticist when we met with him.  That is also how I discovered The Chromosome 18 Registry and Research Society. The people of this fabulous organization, the Founder, Board Members and Family Members have become my second family and I am grateful and blessed to have each and every one of them in my life.  The Registry exists because a Mom was told 20 years ago that her daughter had 18q- (deletion of the long arm).  We as a society are all blessed that Jannine Cody chose the path she did as the genetic research they perform benefits ALL with genetic disorders.

So began my journey to a different place.  You can read more about the beginnings of this journey here.  The time and space between then and now I’ll cover in blog posts here, over at the Different iz Good website and my upcoming book.

Fast forward to about one year ago when I discovered Proloquo2Go on Twitter as I had created columns in Hootsuite tracking keywords for speech impaired.  I immediately bought Lillian an iPhone and installed Proloquo2Go.  That became the driving force behind learning more about this technology and then also combining that technology with the web and social networking.  These forces combined have opened a world of communication for the nonverbal and speech impaired that have NEVER been there before. We are experiencing a communication evolution.  The way in which we communicate and conduct business has shifted forever and is evolving.

In my online research I kept encountering people asking where they could get assistance purchasing an iPhone, iPod (and now an iPad) as private insurance and Medicaid do not cover these devices.  There were also many who mentioned they were on waiting lists to receive one.  This led to thoughts of “Something has got to be done about this.” It’s completely ridiculous that nonverbal and speech impaired children CANNOT have an inexpensive modern way to communicate. Inexpensive compared to traditional augmentative communication devices; which typically cost between $5,000 – $10,000.  One can get an iPhone, iPod or iPad with an AAC Application and needed accessories for approximately $1,000; could be a bit less or bit more depending on version purchased.

At the same time I was discussing with other Chromosome 18 Moms about how our beautiful special needs kiddos do not like change and changes in their schedule or routine that cause things to seem different. Susan Moran commented that they really stress in their house that different is good and show it by changing furniture around often and other methods. My eyes, heart and soul wrapped around those words and with Susan’s permission I tucked it away to “incubate” until the timing was right! You are a beautiful rockin Mom Susan!

These two paths bordered with what I had chosen as my career (teaching, training and speaking to others about Social Networking) led to the creation of the Turning Views Foundation, Different iz Good . . . Spread the Word movement and the Gift a Voice Project.

The Formal Version

Camilla Downs is an influential guide in teaching the keys to Social Media Marketing. She is a social media marketing and community-building strategist, working with businesses and individuals to maximize the internet to enhance their brands, connect with customers, build communities and network for success. As Chief Community Builder at Turning Views, Inc., keynote speaker and trainer, Camilla has inspired hundreds of people to confidently use Facebook, Twitter, blogging and other online social networking tools through conferences, specialized workshops and consulting.

Camilla has consulted with businesses and nonprofits in Nevada, California and Texas, teaching them to establish, maintain and grow a commanding social media and online presence. She advises organizations on increasing their visibility on search engines and strengthening their brand identities online. She also offers video tutorials and online resources for many people seeking efficient assistance with the proper usage of these new tools of marketing.

Raised in Mississippi and Louisiana, Camilla relocated to Nevada after working for 10 years as a paralegal in Washington State. She has combined her research skills with a passion for collecting and testing the constant torrent of new information regarding social networking. “I am passionate about supporting nonprofits, fellow entrepreneurs and small business owners by teaching them to strategically use online and social networking tools”. “Small business owners are among the bravest and gutsiest among us, and they are starved for assistance in understanding the why and how of effective and proper use of these tools”.

Camilla is mother to two children, Thomas, five years old, and Lillian, nine. Lillian was born with a chromosome abnormality called 18p- which primarily manifests in communications deficits. Lillian has inspired Camilla to be a proponent for speech-impaired individuals, their families and caregivers in using technology and social media to communicate and improve quality of life. “Opportunities exist as never before for speech-impaired individuals to be business owners and entrepreneurs because of social media and technology”.