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!

The Story Behind the Book Cover Artwork

I’ve been asked about the reason behind the choice of artwork for the book cover …. So, here’s the story behind the book cover artwork …

I’m a member of The Chromosome 18 Registry & Research Society based in San Antonio, Texas because my daughter, Lillian, has 18p- (meaning she’s missing a piece of her short arm of chromosome #18). The C18 Registry is for all who have a change in their chromosome #18. Through the C18 Registry I met Mark Sogard, who is uncle to Liz Cody, who is daughter to Jannine Cody, who founded the Registry about 22 years ago.

Mark and I are connected online via Facebook. Mark lives in North Carolina and attends Hope Church. Through attending his church he met and knows Daniel (D.J.) Svoboda. D.J. is a very talented young man, who also happens to have autism. D.J. was 29 yrs old when he and I met online … through facebook. Mark sent me a message one day, maybe a year or so ago, that I should connect with D.J. as he felt we just needed to know each other.

Excerpt from D.J.’s biography in the beginning of ‘D iz for Different’: “Growing up, D.J. was teased and bullied. These negative experiences inspired D.J. to create the land of Imagiville; a safe place in his imagination where everyone is treated kindly and accepted just the way they are. Through his art and public speaking he brings Imagiville and the Imagifriends to life and uses them as a vehicle to spread a message of hope, inspiration and awareness that those with autism and special needs are special just the way they are.”

This is why D.J. and I were drawn into one another’s world. His mission and message are so similar to mine. When I began writing the book, I had a spark of inspiration to ask D.J. if he would like his artwork on the cover of the book. The rest is history!!!

If you and I are connected on facebook you will see D.J. commenting frequently on many of my posts …. especially posts having to do with the book. D.J. is one of the kindest, most positive people I have ever “met”. I’m grateful that Mark followed his instincts in connecting us and grateful that D.J. is getting to experience having his artwork on the cover of a published book!!!

There you have it … The story behind the Book Cover Artwork!

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?

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Do What You Really Want to Do

“The minute you begin to do what you really want to do, it’s really a different kind of life.” -Buckminster Fuller

Even if what you want to do seems like the silliest thing ever . . . I’m not talking about deep stuff here like what do I want to do with my life . . . Just simply going with your gut/intuition when being pulled towards an activity. Accept that there’s a reason . . . the reason will become clear if you simply trust yourself.

Last weekend I got the feeling, the urge that I wanted to go through boxes in my garage.  I kept thinking “I don’t have time for this right now, I’ve got to do this, that and the other before the two conferences I’ve got upcoming in July.” I could not get this thought to go away.  It’s as if there was something in those boxes pulling me out there and it was not gonna give up.  I decided I’d go out there and just go through a few.  Many of these boxes have been packed since moving to Reno in 2006 and my divorce in 2007.  Some not as long as that, just since we made our last move about 2 or 3 years ago.

This is exactly what I need to be doing right now. I’m still going through them . . . in fact, I’m headed out there after I get this written. I’m definitely getting rid of a ton of stuff – boxes and boxes . . . some in the garbage, some to Goodwill and some to a friend who just had a baby.

The simply amazing aspect of this is that I’m also finding little treasures and messages that are perfectly timed. If I had ignored my gut telling me to “Do this NOW”, I would not be discovering these treasures and messages.  I would not be processing and getting rid of some thorny little thoughts that still sneak their way back into my life.

Camilla’s Purge Palooza 2011 has shown me the path for something I’ve been stuck with for almost a year now.  All I’m saying is that the quote above, “Do what you really want to do . . . ” doesn’t have to be about figuring out the meaning of your life or something deep. Just simply going with your gut/intuition when you get the urge that you should be doing this, that or the other.  The reason will become crystal clear as you are doing it or shortly thereafter.

Here’s to trusting ourselves and going with our gut!

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This article is now part of my inventory in Inspired Living.  

I enjoy taking the time to share information with y’all that I think is helpful and give you ideas to live an Inspired Life. So, if you feel this helped you in any way, toss a tip into the tip bowl on the way out of Inspired Living.

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If you can’t afford to donate, please feel free to pass this article along to others who might get some help from it. Thank y’all to everyone who has donated and shared in the past. I don’t always get a chance to respond, and the donations, shares and comments are my indicators that what I share is helpful. Thank YOU!


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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This article is now part of my inventory in Inspired Living.  

I enjoy taking the time to share information with y’all that I think is helpful and give you ideas to live an Inspired Life. So, if you feel this helped you in any way, toss a tip into the tip bowl on the way out of Inspired Living.

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If you can’t afford to donate, please feel free to pass this article along to others who might get some help from it. Thank y’all to everyone who has donated and shared in the past. I don’t always get a chance to respond, and the donations, shares and comments are my indicators that what I share is helpful. Thank YOU!


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”.

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).

A Moment of Defeat

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.

**LOVE OFFERING** If you find this content helpful, I invite you to toss a tip in the love offering bowl. With oceans of gratitude … Camilla ….

love-cards-in-a-basket-october-2016

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?

Go here to read “A Moment of Defeat – Take Two”

I Wish I Wasn’t An 18p- Girl: Moment of Defeat – Take Two

Blessings,
Camilla
See It. Share It. BE IT … Spread Love Everywhere You Go!

Amazing news! My 16 year old daughter, Lillian Darnell’s debut book, “Where Would You Fly and Other Magical Stories” is published. Learn more and order here

Wonderfully exciting news! My 12 year old son, Thomas Darnell‘s book, Biggest Little Photographer is published. Be inspired! Learn more and order here.

And my book published in 2012, D iz for Different – One Woman’s Journey to Acceptance; which reached #2 in the Self-Help Category and #1 in Special Needs Parenting on Amazon.

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