Poetry: The Dance of Lillian – Happy 16th Birthday

Team TLC Sunset Walk Damonte Ranch Trail 6.18.17 #15

I’m a month late posting this, yet I promised Lillian that I would write a post dedicated to her …. xoxo

The Dance of Lillian

She came into this world
with her own agenda.
She came missing the short
arm of chromosome number 18.

Never mind what they
thought about how
they would parent her.

They would quickly
learn no parenting
manual existed for
the lessons she was
to bring with her
through this incarnation.

She delivered the
gift of shattered
expectations early
in her Earth life
as Lillian.

She had chosen
as a mom someone
who had many uncomfortable
lessons to learn.

Patience was to
be another of the
lessons she brought
with the tiny little
body she inhabited.

She was not done yet.
The next gift delivered
flowed into their
lives as a pure
cold stream runs
through the land.

That message.
Acceptance.

Acceptance of what life
had delivered and would
deliver.

This little bundle
that grew into a bright
shining light had
many lessons bundled within.

The next was to be
release of judgments.
Oh. That one stung
worse than an unwanted
bee sting on a warm
sunny day. A sting
that lingered for
years, resurfacing
at just the right moment.

This little bundle
who could be anything
but a bundle of joy.
A bundle of anger,
anxiety, violence, and
all kinds of negativity.

With this bundle
came the lesson of
living in the present
moments of life.
Being mindful and
learning the art
of mindfulness.

Responding to this one
from the present moments
of life instead of hurts
from the past. Oh. This
was one of the hardest
lessons yet.

This had nothing to do
with this little bundle,
now a blossoming teen.
As she may have come
into this world in all
her nakedness.

Yet, she contained in
the fibers of her very
being, a Divinely pure
mirror that served to reflect
to the one called Mom
the lesson that it
was she who needed
to go within, to
confront her past,
to feel what she had
not wanted to feel,
And release it.

This would be the Mom’s
lesson of learning how to
live in the present moments
of life and to embrace the
art of mindfulness.

Four pounds and five
ounces of life changing,
life altering, life correcting
joy arrived on the evening
of September 14 2001.

Gratitude does not
even begin to describe
what the Mom feels about
the tiny bundle and she
deciding to have these
roles in this life.

The blossoming teen
was the catalyst
to teaching the mom that
she had it all wrong.
She and all children
are our awakeners.
They are not to
be pushed to the side,
put in the corner,
talked down to,
treated harshly,
abused, controlled,
barked at with commands
and “because I said so”
ridiculousness.

They are to be
respected and
treated as equals.
They may inhabit tiny
little bodies when they
first arrive.

Yet, the souls within
these tiny precious bodies
have much to teach us.
She came in missing
the short arm of her
chromosome number 18.

The lesson that encompasses
all of the other lessons
she brought forth.

Different.

She taught the mom
that she was going to be
the one who lives life
differently.

Mom learned how to live
life from the heart,
trusting the whisperings
of the heart.

She, who now enters
her sixteenth orbit
around the sun in this
Lillian body.

Happy, Happy Birthday
YOU beautiful being.
Thank you for blessing me
and being my awakener.

I Love You,
Camilla
Your Earth Mom

*******************************************

In addition to this, I thought it would be fun to link to her birthday posts over on the Team TLC blog and past birthday posts!

Happy 16th Birthday to Lillian Plus Camilla and Lillian September 2017 Date Day

She Spread Her Wings …. And Flew – Happy 15th Birthday Lillian

Happy 14th Birthday Lillian

Happy Birthday Lillian … Camilla

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 arriving November 2017. Learn more and order here

Wonderfully exciting news! My 11 year old son, Thomas Darnell‘s book, Biggest Little Photographer is published. Be inspired! Learn more and order here.

Latest Articles:

 

11 Ways to Help Team TLC With Attending the Chromosome 18 Conference

C18 Trip July 2016 #17

We need your help! Last minute fund raising for Team TLC’s attendance at the 2017 Chromosome 18 Family Conference in Naperville, Illinois from July 12th – July 15th.

Fortunately, we have a sponsor who has loaned us money for our airfare, registration, and hotel stay. And we have a wee bit from Thomas and Lillian fundraising since last year’s conference.

We just need to make sure we have enough for incidentals while there … food, transportation to and from the airport, and the special events lined up for siblings and self advocates.

If you are moved to help, here’s a list of our creations …. Go here to read the full post ….

Help Team TLC With Attending the 2017 Chromosome 18 Family Conference

Blessings,

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

Wonderfully exciting news! My 15 year old daughter, Lillian Darnell’s book, Where Would You Fly and Other Magickal Stories will arrive soon. Be ready to enjoy the magick! Learn more and pre-order here.

10 Most Popular Posts for 2016

thomas-and-camilla-at-odabe-round-dance-9-25-16-5

Top 10 Blog Posts With the Most Views (Culled only from 2016 blog posts)

  1. Dear Meltdown, Meet My Friend Mindfulness
  2. Biggest Little Photographer Arrives – We Did It
  3. Living in a Tiny Home Adventures – Four Months
  4. Photo a Day for 365 Days – Thomas’ One Year Anniversary
  5. The Power and Magic of Connected Parenting
  6. 2016 Chromosome 18 Conference – San Antonio
  7. A Rapturous Dance With Life
  8. The Biggest Little Photographer by Thomas Darnell
  9. The Tao of Letting GoLetting Go Burning Ceremony, and There is More Than One Way (These 3 blog posts had the same amount of views)
  10. A State of Pure Awareness

**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

Top 10 Blog Posts With the Most Views for 2016 (Culled from all blog posts)

  1. Olive Oil as Facial Cleanser and Moisturizer – Oil Cleansing Method
  2. Recipe: No Powdered Sugar Cream Cheese Frosting
  3. Oil Cleansing Method – Update
  4. 17 Easy and Free Ideas on How to Rejuvenate Yourself
  5. Taste the Wind
  6. Dear Meltdown: Meet My Friend Mindfulness
  7. Recipe: Almond Flour Cookies
  8. Living in a Tiny Home Adventures
  9. Biggest Little Photographer Arrives – We Did It
  10. Recipe: Chia Seed Pudding

Top 10 Blog Posts of All Time With the Most Views

  1. Olive Oil as Facial Cleanser and Moisturizer – Oil Cleansing Method
  2. Recipe: Almond Flour Cookies
  3. Recipe: No Powdered Sugar Cream Cheese Frosting
  4. Help Team TLC With A Christmas Miracle
  5. 17 Easy and Free Ideas on How to Rejuvenate Yourself
  6. Oil Cleansing Method – Update
  7. I Wish I Wasn’t an 18p- Girl: Moment of Defeat – Take Two
  8. A Moment of Defeat
  9. Lillian and Being Different Presentation
  10. Creativity and Resourcefulness

Here’s to a 2017 in which we all go within to BE the change we wish to see in the world. BE Love, BE Peace, BE Compassion … We must BE this within in order to experience it without.

hearts-rock-sparks-2015

Blessings,

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

Wonderfully exciting news! My 10 year old son, Thomas Darnell‘s book, Biggest Little Photographer has arrived. Be inspired! Learn more and order here.

Latest Articles:

A Rapturous Dance With Life

Lake Mead July 2016 #15

I did it. I did it. I did it.

I drove Team TLC 3,400 miles. Thursday, July 7, 2016 through Saturday, July 16, 2016 I drove 3,400 miles roundtrip to attend the Chromosome 18 Conference – Reno, Nevada to San Antonio, Texas .. 1,700 miles each way. A conference Thomas and Lillian have their hearts set on attending every year. We began attending the C18 Conference in 2009 when it was in Las Vegas and have gone every year since then.

We arrived home at midnight on Saturday, July 16th. I was kind of it out of all day Sunday. Then Monday, I woke up ready to go! By Monday afternoon, every muscle in my body ached and I felt weighted down. I was completely out of it for 4 full days. It took about 7 days before I felt like myself again.

Yet, I DID IT!! … xoxoxo

The plan was to leave at 5:00 am on Thursday, the 7th, so that I could drive as far as possible before darkness fell upon us. I am completely out of my comfort zone driving in the dark in unfamiliar places. I could not get to sleep the night before. I was worried and having anxiety about this trip due to finances, honestly, not even having enough to cover the trip.

Yet, I know how deeply important this conference is to Thomas and Lillian. Each for their own reasons. Thomas is the sibling to a sister who has a chromosome deletion. He has, and is, developing deep friendships with the other siblings his age and being mentored by the older siblings.

Lillian’s friends are her peers that she has connected with through this conference. She communicates with some of them all throughout the year. When one texts, blogs, post on Facebook and Instagram, emails, chats on Facebook, or uses skype; the spoken word is not needed.

In our world of verbal communication difficulties, social media has helped create a world that would not exist for Lillian and one where she has true friends. She has no local friends, yet she has friends all over the United States and the world … As far away as Tasmania, Australia.

C18 Trip July 2016 #17

After having about 3 hours sleep, I could not seem to get ready as I was overwhelmed with the enormity of this trip. I had an adult meltdown which delayed our departure. We were finally on our way at 7:00 am; two hours later than I had planned.

There was much excitement as we began the road trip. Lots of talking, observing the landscape, and silliness. About two hours into the morning, we lost cell phone service due to the rural area we traveled. We were without cell service for the next five or six hours until we reached Las Vegas. During this time, Thomas and Lillian became absorbed in reading books, magazines, or using their computers or phones.

Which left my mind much time to mess with me. I had stepped way out of my comfort zone with this trip. I had never driven this far, much less driven this far being the only one in charge of packing, driving, and navigating. Plus, we had never driven this far as a family. Our max road trip travel time was to the 2015 conference in Salt Lake City; which was about an 8 hour drive from Reno.

Thoughts of us being stranded due to car problems kept entering my mind like a dark storm cloud encroaching on the brightest of days. Thoughts of the lack of finances for this trip took their turn in the dance also. Not to be left out of the dance, thoughts of my insanity at attempting this cut into the dance too. All of this dance to be completed with the veil of anxiety and worry weaving in and out like a breeze blowing through the trees.

Thankfully, I am a student of mindfulness and emotional connection. And, since there was nothing else to do but sit and drive, I took this opportunity to put these practices to work. It was a rapturous dance between being mindful, connecting with emotions, and embracing the fear wanting to dance with me.

This trip proved to be challenging. I had not anticipated this dance with life in all of its flavors and colors in such a way to cause the suffering brought on by my thoughts. It was my goal to have this trip be a learning experience for me of not knowing, not planning, and just going. That’s certainly not for everyone.

Yet, I felt this was important for me. It’s a huge step out of my comfort zone. One step closer to trusting myself, trusting internal messages, and letting go of how it’s supposed to be done. As mentioned earlier, I’ve never driven this far alone … Much less alone with Thomas and Lillian. In addition to driving this far in Rosey, our 15 year old car, with dancing through this trip on less than a shoe string budget and letting go of worry that the string will hold tight.

I had moments where I was so extremely hot and exhausted I had visions of taking an ice bath and moments when I was so tired I was shaking and wondering what in the heck I was doing ….. Yet, I know. I may not know on the surface right now; but deep down, I know why I do what I do.

This was also a dance full of wonderful, bright moments. We shared inspiring comments and tons of love that furthered each one of us. Definitely some amazing growth for all of us happened! WOW!

**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

We had a ball and laughed tons and enjoyed the beautiful landscape as we drove by it. Lillian was being so helpful and encouraging Thursday morning before we left.

Thomas was awesome and inspiring with his comments as we drove the two lane highways in the middle of nowhere in Nevada and Arizona. We saw a huge sign that read, “Nothing” and had a great laugh about that! Just after driving through Boulder City and Hoover dam, Thomas said, “I love it here.” He was so impressed with Lake Mead and said he wanted to live there.

Thomas went on to say that he always has deja vu and he has lived this life before. He said it all seems so familiar. He was incredibly inspired by the beauty that passed before our eyes. He also commented that he wants to buy land and simply let kids play on the land.

On the first day of driving, Lillian got sick to her stomach. We ended up spending about 30 minutes at a gas station bathroom and Thomas was extremely helpful. When we were looking for a place to stay and it kept getting darker and darker, I apologized to them as I had planned on stopping sooner. He said, “When you get a rock in your shoe, just shake it out.”

Rosey did a pretty good job. She had a wee bit of problems getting overheated but that was resolved with turning the air conditioner off while traveling up and down the mountainous areas. I had to give her some oil and coolant on the way there and some oil on the way back home. It’s scorching hot checking oil and fluids in over 100 degree weather!

With an hour and a half to go before we arrived in San Antonio, the epoxy glue I use for the driver side mirror had enough of the heat and was simply melting away! A couple of years ago I bumped the mirror backing out of a covered parking spot. So, for about 20 minutes I was holding the mirror until I could pull over. Bungee cord to the rescue!! Before we headed back home, the hotel gave me duct tape and that worked great for the ride back home.

I feel strongly guided to be establishing a new relationship with myself and the world and to model this for my kids, have them actively participate, and to help them know that there’s more to life and living than traditionally meets the eye.

I want them to never lose touch with their true self and to grow into adults knowing their given talents and having a solid and clear courage and conviction in sharing that talent with the world!

I continue to learn so much daily … About me, Thomas and Lillian, others and simply just living and dancing with life! xoxo

C18 Trip July 8 2016 #1

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

Wonderfully exciting news! We’ve completed the first book trailer for my 10 year old son’s, Thomas Darnell, upcoming book, Biggest Little Photographer. You can learn more and pre-order here.

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Leaf at Sunset and Nature Box by Thomas

Thomas has been at it again creating items to contribute to getting us to the Chromosome 18 conference this July in San Antonio.

(Thomas’ older sister, Lillian, has 18p-. We plan on driving from Reno as this seems to be the least expensive option. If need be, we will take a tent and camp at campgrounds on the way down. Should take about three or four days. Thanks a million for taking a look at Thomas’ creations!)

I’m selling a painting of a leaf I made with a sunset in the background. (Added by my mom: It is made using recycled materials, acrylic paint, sealant, and made ready to hang.) Here’s a picture of it:

Thomas' Painting may 2016

I am asking for at least $20 (plus $5 for shipping if you are not local to Reno). I’ll leave the final price open to you. Please use this PayPal link and enter your amount.

I’m also selling a nature adventures set. Here’s a picture of it, along with ideas of what to do with it. (Mom added this: The possibilities of how to use this set is only limited by your imagination. You can also add your own pieces to it. Hand painted and decorated storage container made using recycled materials.)

nature set adventures idea 2

The above picture is of insects enjoying a campfire.

nature set ideas one

The above picture is of a game of bowling.

nature set ideas three

The above picture is of a soccer game.

nature set ideas four

The above is a photo of what’s included in the set.

photo 5 (78)

The above picture is the hand painted storage container made by recycling materials.

(Added by Mom: Please note this set is not intended for infants or toddlers or those who will place the items in their mouth.)

I am asking for at least $20 (plus $5 for shipping if you are not local to Reno). I’ll leave the final price open to you. Please use this PayPal link and enter your amount.

And last but not least, I’m selling prints of the mini-figure 365 Photo A Day series.

(Added by my mom: You will receive an 8 X 10 print on high quality paper. The photo series is currently being made into a book! These are being sold as part of pre-ordering the book. Tentatively titled Grand Adventures of the Biggest Little Photographer. Visit this link to learn more.)

If you have any questions, please comment here or email my mom at CamillaDowns @ gmail . com …

Blessings,

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

Did you know I wrote a book? It’s titled “D iz for Different – One Woman’s Journey to Acceptance” and you can read more about it here.

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Egyptian Eye by Lillian Darnell

Egyptian Eye 4.29.15

My 14 year-old daughter, Lillian Darnell, is selling prints of her artwork, The Egyptian Eye, to help raise money for us to attend The Chromosome 18 Conference this July in San Antonio, Texas.

Please enjoy this poem she created to accompany the drawing.

Triangular prisms sprout rainbows
From the tip of a triangle, triangles peak everywhere
Amazing colorful teeth pointing toward a catchy circle
It is an Egyptian Beauty!

To learn more about Lillian, the Chromosome 18 Conference, or to support her, go here.

Blessings,

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

Did you know I wrote a book? It’s titled “D iz for Different – One Woman’s Journey to Acceptance” and you can read more about it here.

Latest Articles:

Go here to subscribe to my blog to ensure you receive new posts delivered straight to your inbox! Right here!

 

The Shift and Miracles

Lillian at Wilbur May Arboretum May 2016 Date Day

I feel that any time we experience a shift of perspective, it is a miracle. Also, the things most of us simply do automatically just as we’ve done a million times before ….. I feel those are miracles ….

Recently, Lillian and I decided to reduce her twice per month craniosacral appointments to once per month visits. April marks one year since we began. She started out with once a week, then in August 2015 went down to every other week. She’s making GREAT progress.

Plus, she had a great day at physical therapy on that same day. She said, “Yes” to getting on the ladder and went up one step … FOUR times! YAY!! She has quite the fear of stairs (among other things) and this was a HUGE movement forward for her.

She also told me that she is going to use the stairs at least one time at the Chromosome 18 conference in San Antonio. We’ve been to this hotel before and she already knows what it’s like. There are stairs from the lobby to the 2nd floor meeting rooms and 4 years ago we had to take the elevator every time.

On Sunday she told me that in May or June she will start crossing the foot bridge (on the trail around the lake) without holding onto my arm so that she can practice for doing it along the riverwalk in San Antonio.

Also, she wants to walk the entire Damonte Ranch Loop (about 4 or 5 miles) a few more times before going to San Antonio so that she can be prepared to walk as much as we’d like while there.

Purple Flower at Wilbur May Arboretum May 2016 date Day with Lillian

And there’s more!! She is finally in a place where is ready to think about ways to confront her fear of animals – ALL animals. We have such a hard time on our walks as it doesn’t matter if dogs are leashed or not, she still panics .. and sometimes people just don’t understand that it doesn’t matter how friendly the dog is; she has an overwhelming fear. I always pet and talk to the dog so she can observe; yet she still panics and has anxiety.

One reason she is ready to face these fears is the impact it has on where and how and when we go places and do things.

Just BEing here is a miracle …. As I am on my daily walk, I say, “I am walking on the path that goes around the lake, and this is a miracle.” … Perhaps you may want to find a way to notice the miracles abundant in every single day … xoxo

Trail at Wilbur May Arboretum May 2016 Date Day with Lillian

Blessings,

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

Did you know I wrote a book? It’s titled “D iz for Different – One Woman’s Journey to Acceptance” and you can read more about it here.

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Go here to subscribe to my blog to ensure you receive new posts delivered straight to your inbox! Right here!

I is for Improvise

(Excerpt from my book, “D iz for Different – One Woman’s Journey to Acceptance”)

We all improvise on a daily basis. We just aren’t aware of it because it happens so naturally. When we have spontaneous conversations with people during our daily interactions we are improvising. Our dialogue is not “memorized” or practiced. Tapping into this natural improv skill has helped me in dealing with my kids and with not-so-great life situations.

People tell me it makes them tired just watching all the adventures my kids and I have. We really don’t do that much. It just seems that way to those on the outside of our little world. By nature, I am an introvert. I love staying home; but I also know I want my kids growing up learning that you can turn just about anything into an adventure. Be spontaneous. Making things up as we go along is the ultimate adventure. It may not be possible to do this all the time, but with practice you can incorporate it at every opportunity. Our kids will learn how to tap into their own improvisational skills the more they see us doing it. By our example, they will learn how to turn the everyday into an adventure and how to cope when things don’t go their way.

Recently we arrived at an event that my kids had been anticipating all day. As we got closer to the building we saw a line that snaked around the entire building. There was no way I was going to stand in that line. Fortunately, Thomas and Lillian agreed; but they were still disappointed. This was an opportunity to improvise and save the situation. On the way home we stopped at one of our favorite places in Reno, Audrey Harris Park. The earlier excitement in the car returned as we made our way. It’s not really much of a park. It’s very small, with only a couple of benches and it sits at the edge of a ridge. It’s a special place to us though. I am in love with the amazing view of Reno and the skyline which infuses me with peace and awe. I take joy in the drive there and the drive back home. Thomas and Lillian enjoy the view too. More than that, it has become a special place for the three of us as a family. What a great day!

Being a single parent to Thomas and Lillian has indeed been an adventure. In fact, my entire life is a great improvising adventure. Being that I am a procrastinator, with an added pinch of spontaneity, you could say that I am quite the adventure for my kids. Even though I make much of our escapades up as I go along, it is perfect, and I look forward with a happy, smiling heart to every single adventure yet to come for me and my little family.

Tip for the Journey:

Find some time during your day NOT to have a plan. No planned activity, no schedule to follow. Wait until that specific moment and ask yourself what you would like to do for the next hour or two. If you are with your kids, ask them what they would like to do, what kind of an adventure they would like to go on. Kids can come up with some pretty amazing ideas for adventures. Most likely you will not really be able to have the exact adventure they suggest, but this is where improvisation comes into play. As parents, we improvise all the time, and don’t even realize it; when a toy breaks, or the scissors are missing, or they want something to use as a ramp to play cars. You name it! Practice transferring this great skill to other areas to create peace in your life.

When we aren’t happy or not truly living in the present moment, it’s hard to improvise. Practice keeping yourself in the present moment. As often as possible repeat thoughts and activities that help you to pay attention to the present moment, experience joy, and be inspired. When you live in the present moment you are better equipped to tap into your improvising skills, be spontaneous, and go with it.

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

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G is for Gift

(Excerpt from my book, “D iz for Different – One Woman’s Journey to Acceptance”)

Each and every person on this Earth is unique, and holds a gift to share with the World . . . our true selves. This includes those in our society who have a handicap, disabilities, and those with special needs. Many of us keep our true selves buried deep within, as I did, for fear that we will be considered different and unaccepted. Some of us just need a little extra help in the form of guidance to nurture and grow our special gifts. Okay, maybe a lot of extra help! Everyone benefits when we let our differences and gifts radiate and glow.

Our differently-abled children simply process the world, information, and life, differently than we do; but they are in good company. There have been many throughout history who also processed differently; like Albert Einstein; Michelangelo; Thomas Edison; Amelia Earhart; and Steve Jobs, to name a few. They had amazing, life changing, life improving gifts, and were successful in spite of their label as freaks and kooks. Today the labels may have changed, but the thoughts still remain.

Lillian is a young lady who shines like no other, and has a beautiful inspiring energy about her. She and children like her teach us lessons about acceptance and change. This is one of their gifts. As an integral spoke in the wheel they can turn around societal and stereotypical views that they don’t have anything to offer; are a drain on our country’s resources; or views that they, and their family are unhappy and should be pitied.

Another one of Lillian’s gifts is showing us the benefits of embracing technological innovation, and the shift in the way we communicate. Technology can be life changing and life improving for some amongst us, and should be approached with an open mind. We no longer solely communicate with our mouths and voices as a society. A great majority of us use technology and social networking sites to stay connected, communicate, and conduct business.

On a beautiful summer day in 2009, I visited Lillian at school. Her class was at recess. As I stood chatting with Lillian’s teacher, I was scanning for Lillian among the sea of kids. My eyes landed on a petite young lady pulling a cart behind her. Yes, that was my Lillian, pulling a cart loaded with her DynaVox unit. Tears welled in my eyes, a lump formed in my throat, and my knees got weak. I thought, “There has to be something better.” I made a firm commitment to myself and to Lillian in that moment that I would find something more mobile and compact for her to use to communicate, something that did not make her stand out. I began monitoring the use of keywords and phrases like speech impaired, nonverbal, and AAC on Twitter and Google Alerts. Almost immediately I came across Twitter mentions of an application for the iPhone and iPod touch by the name of Proloquo2Go that had just been released four months earlier. Proloquo2Go is a communication solution with natural sounding text-to-speech voices for people who have difficulty speaking. I researched a bit more, went to the Apple store, and bought Lillian an iPhone. With Proloquo2Go installed, I gave it to her that day when I picked her up at the bus stop. A meeting with the school followed that same week to inform them she would no longer be using the DynaVox and would be using the iPhone instead. Lillian figured out the iPhone and Proloquo2Go within a week. This was technological innovation at its absolute best! Turning Views Foundation’s Gift-a-Voice Project was birthed from this experience (Learn more at www.TurningViewsFoundation.org).

Today, our communication methods have shifted and are literally evolving to include more of our society than ever before. When a mother of a speech impaired, or nonverbal child “hears” “I Love You” or “Mom” for the first time, it touches their heart like nothing else can. According to the National Institute on Deafness and Other Communication Disorders, 7.5 million people in the United States have trouble using their voices for one reason or another. This includes people who are nonverbal, speech impaired, autistic, hearing impaired or who have dysarthria, apraxia, or aphasia due to chromosome abnormalities, Multiple Sclerosis, stroke, Cerebral Palsy, brain injury and many other conditions.

To fully grasp the impact technology has in your daily life, take note throughout your day just how often you communicate using technology via email, text 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. One of Lillian’s gifts is using my voice to show how technological innovation is benefiting society.

Our children with special needs are not broken, and do not need to be fixed. When we use negative words like “problems”, “cannot”, and “deficits” to define disability it is difficult to see the positive gift our child possesses. Focusing on what our child cannot do, is a barrier to seeing their gifts. When we accept that it is their “normal” to have special needs; our eyes can be opened to see our child’s gift that probably has been right there all the time.

Some will continue to only view those differently-abled as having something wrong with them and being limited. These same people won’t take the time, nor would have the patience to connect with those who are differently-abled. Unfortunately, they miss the experience of being on the receiving end of a unique heartfelt gift, a gift that only those with patience and peace can receive.

Until we have moved past the guilt stage and are well on our way to acceptance of ourselves and our children, it will be impossible to see the gift in situations, and the gift of our children, with and without special needs. No matter what, guilt gives power to the wrong thoughts and is a barrier to acceptance. Even in our most painful lessons there are hidden gifts whether we see them as such or not. The process requires patience with ourselves and not forcing the process to get over the guilt and “why” questions quickly. Guilt is a stage we simply must make our way through. Rest assured, when you arrive on the other side of guilt, you will realize the gift you hold, the gift your child holds and the gifts revealed through situations.

Tip for the Journey:

Identify and embrace your child’s strengths, needs, interests, fears and motivators. Focus on your child’s strengths and be open to providing opportunities for them to express themselves and their thoughts. Remember; don’t discount qualities that you or others find odd, irritating, or annoying. That just may be the wrapping paper around the gift they hold. Provide opportunities for them to paint, play an instrument, make crafts, dance, practice yoga, swim, play sports, write and use their hands to create.

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

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Z is for Zigzag

(Excerpt from my book, “D iz for Different – One Woman’s Journey to Acceptance”)

Conventional wisdom says “do it this way, this is the way it’s always been done.” I am the type of person who questions conventional wisdom. I pause to think about whether the way it’s always been done is really the right way for me and my family.

Conventional wisdom says that the best path for Lillian is to attend traditional public school to benefit from what she’s entitled to according to federal laws and what’s established in her IEP. Well, that worked for us through fourth grade, but it doesn’t work now. You see, I simply believe with all my being that this little lady will not follow any conventional route in her life, or in her career. I believe she will be self-employed, and I don’t believe she will reach her full potential staying in a traditional public school. Of course, I will accept whatever career path she chooses, but for now, I choose us to zag instead of zig.

I’m not saying that we should always zag when others zig. But, that we pay attention when something inside us is saying, “not so fast there, find a different way,” or “don’t keep doing that.” We may hear these messages, but dismiss them due to doubt, fear, or laziness. As these messages bounce around in our mind, we find that we have invited another person’s voice telling us we are crazy for thinking that way.

Happy and successful people didn’t get where they are today by making the same choices as the masses. If you take time to study them, you will find there’s something different in the way they think, their attitude, and how they make choices.

One of my kids made a statement once that we are poor. I explained that I don’t agree and here’s why. We may be broke at the moment, but we are not poor. I consider us to be rich because of our relationships with one another, our adventures, and the joy we experience. I believe there’s a fundamental difference between being poor and being broke. Poor vs. rich is all in how you look at it. Being broke is temporarily having no money. Being rich depends on how our attitude and thoughts perceive our reality. How do we measure “rich”?

It is most important to me that I try to not take myself so darn seriously. I fully understand that we have some serious situations to deal with, especially as parents of children with special needs. I’m not advocating that we ignore serious medical conditions. I’m only suggesting that we become aware of our attitudes and thoughts concerning serious matters. Do your best not to dwell in the past, or get stuck in the “why” questions. Accept the present moment for what it is. Really and truly listen to your gut. Listen even if you don’t understand why it’s pushing you in a certain direction.

The bold overriding theme of this entire book is the ability to accept ourselves, listen to our intuition, and live in the present moment. That’s why it is repeated throughout this book. I know I need to be continually reminded of this. I forget. Acceptance, courage, flexibility, and our view of life all comes back to how we think. Our emotions are an expression of our thoughts. Take it slow and have patience with yourself.

Tip for the Journey:

Awake each morning and realize with awe that you have been given a very special, unique gift. You have been given a precious gift of another full twenty four hours to make your own. Twenty-four hours to do with as you choose, to experience joy and happiness, and to share with those around you. I truly believe the more we share joy and happiness, the more it will spread. Every day you get another twenty four hours to work toward your dreams and goals, and another day to enjoy the heck out of while you’re on your journey. I like to refer to this as a Sunrise Gift and no two Sunrise Gifts are the same. You choose the nature of the gift and what you will do with it. Make the most of your Sunrise Gifts.

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

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