Handicap This! …. Guest Post

I am thrilled and honored to have been a guest over on the Handicap This! blog y’all!

Here’s a little snippet of what I shared over there:

“These two (Thomas and Lillian) are truly a gift to me and the World. Coupled with my life’s journey, they have helped to awaken my true self. The three of us make a GREAT family and team!

Why Do I Write?

I write because there is something inside of me that won’t let me not write. Something that gently nudges and says, “You’ve just got to share that.” My instinct, my gut, whatever you want to call it – that’s what I’m talking about. I fought this feeling for a while. I didn’t think I had anything meaningful to contribute and wondered why anyone would care what I thought or had to say. I know down to my core that I was chosen as Lillian’s Mom to in some way help those like her and parents/caregivers of those like her. I have a journey that I felt must be shared with others to inspire, give hope and motivate. Another reason I felt compelled to share my journey was to help people understand that the way they choose to view life matters more than they know ….. “ Head on over to read the entire post and check out the great guys over at Handicap This!

D iz for Different Video Journey

I poured through all of my pictures y’all and put a few together to mirror my journey as described in the book. Hope y’all enjoy it!

What I Would Have Said

What I would have said if I had been prepared Wednesday night, March 21, 2012, at the eWomenNetwork Women’s Success Summit ….

I was surprised with a beautiful, heartfelt recognition of my success by my dear friend Kymberlee Simantel. Hearing the last 5 years of my life retold by my amazing friend was extremely moving. I am hugely blessed with the friends I have made since moving to Reno in 2006, all who are eWomenNetwork Reno/Carson/Tahoe/Vegas/Sierra Nevadas Chapter members. My message to anyone who needs it – surround yourself with those who see your light, those who support you, those who will tell you things you need to hear at times and trust yourself, trust yourself, trust yourself. Never doubt your inner voice.

I hope with all my heart that I enrich my eWomenNetwork friends lives as much as they enrich mine.

Choosing to attend an eWomenNetwork Dinner Event in July 2007 was one of the most life improving, life inspiring choices I had made up to that point in my life. When it’s time for us to grow within our own unique box, sometimes we must face fears … fears of going into a room alone, not knowing anyone and creating a new life … Thank you Kymberlee Simantel for being managing director for the Reno/Tahoe chapter and thank you Sandra Yancey for your light tonight and for founding this amazing organization!!

With my eWomenNetwork friends’ help I have gifted to twelve recipients through Turning Views Foundation’s Gift a Voice Project. Our latest recipient is a Grandma, Karen, in Michigan whose vocal cords were removed in December due to cancer. We were able to give her a “voice” so she can “speak” to her grandkids. Karen is guardian to these two young children and has been struggling to communicate with them.

I have created friendships with women and men who have helped me to discover my unique gift and who have furthered my acceptance of myself. Friends who are always there when I need them, who say things I need to hear but may not want to hear … friends who support and encourage me, friends who know when to say “It’s time to put your big girl panties on” and friends who know just the right time to remind you of all that you have accomplished and all whose lives you inspire and enrich.

eWomenNetwork and Kymberlee Simantel provided me the opportunity to create these kinds of friendships:

A friend’s husband is there to pick up my son, Thomas, from kindergarten when I’m at a speaking engagement, a friend’s son is “Big Brother” to my son Thomas, friends who are on the Board of Directors for the nonprofit I founded, friends who have slipped me money just because, friends who came out in full force to support my Gift a Voice fundraiser in March 2011, a friend who has picked the kids and I up from the airport more than once, friends who are listed as local contacts on my kids’ emergency contact paperwork at school, a friend who brings me goody bags of homemade food, friends who donate their last generation iPhone to the Gift a Voice project, friends who care about my kids as much as they care about me, friends who look me in the eye and say, “Stop. Look what you have created. Look what you have done. Take that in.”, friends who have always seen me for the amazing person I am AND friends who let me do all of this for them too.

By choosing to be an eWomenNetwork member and SHOWING UP I’ve made friends who encourage me to let my light shine by shining their light on me. I’ve made friends who GET the value of encouraging others. Some people may go their entire lives without being encouraged by another soul.

Smile at others, encourage others … you just NEVER know the ripple effect that this will create and it will absolutely come back to you. It WILL ….

I LOVE YOU LADIES and a few GOOD MEN, I TRULY LOVE YOU!!!

Here’s the beautiful mosaic candle holder Kymberlee made for me:

It’s Beautiful … It’s Different … It’s full of LOVE!! Message on bottom: “Camilla, because Different is good, I made this different candle holder for you!” It’s just magical with the candle lit with all the glass pieces lit from the flame!! ♥ ♥ ♥ ♥ you so much Kymberlee – Thank you for sharing your light with me!!

2011 Most Popular Posts

We’re all busy, we’re all in a hurry and we all have too much to do. So, I’ve combed through the posts on this site for 2011, looking at the total number of facebook likes and comments, and created a “Most Popular” list for those that may have missed something and those that want to read again and share. Enjoy y’all!

Dares, Choices and Changing the World – April 5, 2011

Decisions from the Gut – May 27, 2011

The Shift That Happens – May 31, 2011

O is for Observe – August 7, 2011

Purging, Weight Loss and Writing a Book – September 11, 2011

O is for Observe

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?

{Wanna ask your Facebook friends what they think? Press here to share it with ‘em and/or if you liked this post press that little ole like button below! Thanks!}

Dares, Choices and Changing the World

(Based on a Toastmaster’s Speech I delivered today, April 5, 2011)

Three concepts for all of us to ponder . . .  The first concept is that of choices.

Do you live each day thinking, “Well, I’ve got to do this and I’ve got to do that”.  Or, “I’ve got no choice in the matter?”  Or, do you live each day thinking, “If I choose this one, then this will happen and if I choose this one, then that will happen.”  I CHOOSE this! Do you say “I HAVE to do this, that or the other” or do you say “I WANT to do this that or the other”?

A poem to share with you -

“Happiness”

Life is so happy, it makes me cry.
And I cannot, tell a lie on April Fools.
The point is that you will have a non stop lovable brain.
And it has our choices in it.

Now, I think this is an absolutely beautiful and powerful poem! I may be a bit prejudiced, though, as my 9 year old daughter, Lillian Darnell, wrote it this past Friday, April 1, 2011. I’d like to share why I think, partly anyway, that Lillian created this poem.

Lillian received an email from a family member with the following statement, “I often feel like I have no choice” .  I disagree with this attitude and felt the need to share that with Lillian.  I explained to her that each of us ALWAYS has a choice.  No matter what decision we are faced with making, no matter what situation or circumstance, we always get to choose. There are consequences to accompany whatever we decide; but we get to make that choice.

I believe it’s not even which choice you make that matters as much as what you do with your choice after you have made it.  Once we make a choice, we should then make it the right choice! She really took my point of view to heart and mind.

Choices – one concept to ponder . . .  Which leads me to the second concept of Changing the World.

What are you doing to contribute to our World – whether it’s changing it for the better or adding to it for the better? I’m not meaning or saying we all have to be an Einstein, Earhart, Branson or Buffet. What I mean is in your own way – what has meaning to YOU!

Do you wake up every morning and conform?  Are you doing the same thing day in and day out – doing something that means absolutely nothing to you?  Or are you waking up thinking, “Hot Darn! Another day to work towards my goal.  Another day to enjoy the heck out of while I’m working my way to that goal.  Another day to squeeze every ounce of joy, love and happiness out of!”

Two concepts to ponder – Choices and Changing the World.  Now to wrap those two concepts up and give them a nice foundation with three words – I Dare You!

I Dare you to retrain your mind and thought habits about thinking you have no choice in matters.  You have a CHOICE with every single decision that involves you. I Dare you to do what you want to do with your life. I dare you to not conform.  I dare you to stop doing it the way everybody else is doing it cause that’s the way its always been done.  I dare you to have FAITH in yourself and what your gut or your intuition is telling you should be doing in this World! I dare you to be Different!

The thing is if we look back at our history and even our present, and look at the people who are successful at doing what it is they know they were meant to do; there is ONE common thread amongst them.  I’m talking about the creators, the innovators and those that change the world.  Race does not matter and gender does not matter.  That common thread is that they were and are DIFFERENT.  In the beginning everyone around them whispers or even says aloud, “(S)he’s weird – (s)he’s different – what’s wrong with that person?”

It is my belief that each and every one of us is different in our own unique and special way.  I think way too many of us cram that different part of us back down saying “Get back in there, You’re making me look weird, You’re making me look different.”  It’s time to uncork that different aspect within us and share with those around us for the benefit of ourselves and the world.  Amazing events will and must occur when we do this!

Just some concepts for us to ponder . . . I Dare You to Make Choices and Then Make Them the Right Choices, I Dare You to Change the World, I Dare You to be Different!

Another Lillian poem to leave you with -

“Pretty Flowers”

A poem is a sweet brainer.
You listen to music.
And the point is that your creative brain is a bank.
And listen to it.
I love you a lot, of pretty flowers.

(This post and speech were inspired in part by Earl Nightingale’s, “The Strangest Secret“{amazon affiliate link}, and William Danforth’s book titled “I Dare You“{amazon affiliate link})

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More About Camilla

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”.

The Evolution of Communication

Have you noticed it?  Have you noticed the way in which we communicate and conduct business has fundamentally shifted?  We are no longer solely communicating with our mouths and voices as a society.  A GREAT majority of us are using technology and social networking sites to communicate, work, conduct business and stay connected.  We, as a society, have shifted our communication style.  It is my belief that this shift has occurred in such a way to literally wrap it’s arms around the segment of our population who communicate with sign language or who cannot articulate in such a way to be understood.  Our communication methods are literally evolving to include more of our society than EVER before.  There are 8 of every 1,000 people in the United States who have some sort of communication disorder.

To fully grasp this just notice throughout your day how often you are communicating using technology via email, texting or social networking sites.  If you still conduct many of your conversations over the phone or face to face, stop and think, “How would I be having this conversation if I did not have the use of my voice or if I could not articulate what I’m trying to say?”  There are options now that weren’t available years ago! I, for one, believe there’s more to what is occurring in our communciation style than meets the eye.  I can’t begin to imagine where this is headed.  What I do know is that this is a GOOD thing for my daughter, Lillian, and those like her.

This is the VERY reason I was driven to create the Turning Views Foundation, the Different iz Good movement and the Gift a Voice Project.  We began a recycling program through which we collect last generation iPhones, iPod Touches and (soon) iPads to be donated to those who communicate with sign language or who cannot articulate.  **Update** We now take ANY used/inactive cell/mobile/smart phones. We also have it set up so that schools, companies, churches, etc can hold a Gift a Voice cell phone recycling drive and pay NO shipping for mailing the phones!

We also just got our first media coverage about the iPhone, iPod and iPad recycling program.  You can read the article at Reno News & Review’s website and The Gift of a Voice in Sparks News Tribune.  Please visit the Different iz Good website if you would like to learn more, see how you can Get Involved, take a look at our Wish List or even browse our Different iz Good store!

Would love to hear your thoughts in the Comments section! Thanks y’all!

Different . . . The New Normal

I wrote a guest post over at “The Beauty Message Challenge” site.  Thought y’all might enjoy it!

It’s OKAY to be different. I’m not talking about being different to stand out, being different to fit in or even being different just to gain attention.  It’s okay to be YOU, the real YOU.

I’m talking about the different that lives within YOU.  It is OKAY to let that shine and to share your uniqueness and your differences with the world.  Let those differences radiate and glow from you.  You and others WILL benefit from it!

It’s taken me nearly 40 years to take this to heart . . . my heart.  I’ve been saying and thinking this since my special angel of a daughter came into my life.  But, it just now hit me that this message needs to be said and felt and lived by the little girl in me who was ALWAYS different and felt like she NEVER fit in.  My 9 year old daughter, Lillian, was born with a chromosome abnormality called 18p-.  This means a piece of the short arm of her chromosome number 18 is deleted.  This has rendered Lillian “different” in many ways from the typical child.  And, the main way this manifests is that she has speech impediments.

One of Lillian’s purposes as my daughter is to use my voice to spread the message to the world that Different is Okay, Different is Beautiful and Different iz Good. In addition, to help me learn this for myself and to accept and be okay with this for myself.  I can look back at all the scenes and times running through my mind and say “It’s Okay.  You were different, you didn’t fit in with the typical crowd, you looked different, your family was different, you were awkward, you weren’t stylish, It’s Okay.” And, it’s OKAY to let that go now.

Lillian is also my daughter to help heal parts of me that I didn’t even realize needed to be healed until this VERY moment.  When I came across the phrase “different is good” from a fellow 18p- Mom about a year and half ago, I asked her at the time if I could use that phrase on t shirts.  {Thanks SM ~ you are a beautiful, smart and amazing Mom to IM.} It has since grown into the slogan for my 501(c)3, Turning Views Foundation.  I had no idea at the time that the reason was also that I needed to heal and tend to some very old wounds for myself.

And, for you reading this, it’s OKAY.  It’s okay to be different.  Let us please never use our differences as an excuse for failure; but instead use our differences as a reason to succeed and for success! Whether those differences are genetic, whether those differences are from disabilities or whether we are just plain different!

Different is Beautiful . . .  Different iz Good . . . Spread the Word Y’all!

Head on over, and check it out!  {I met the co-creator of this Message and this fabulous iPhone Application at the eWomenNetwork Annual Conference which I attended last July 2010 ~ Isabel Rasmussen).