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!

Latest “Special Needs Parenting” Articles:

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

Dear Meltdown: Meet My Friend Mindfulness

Anger is like a storm rising up from the bottom of your consciousness. When you feel it coming, turn your focus to your breath. ~Thich Nhat Hanh

I recently received the honor of having one of my articles accepted for publication by Elephant Journal. I was inspired a couple of months ago by blog posts which are letters openly written to others. For example, Dear Person at the Grocery Store, Dear Lady in the Bookstore, Dear Stressed Out Mom, and the like.

Upon seeing these I knew I was to write something like this. At that same time, I also knew I wanted to share something meaningful about the meltdowns that Lillian is experiencing. The next thing I knew, I was writing a letter to her meltdown. I was pouring my heart out to that meltdown. This is the result and this is what Elephant Journal published …

Meltdown (per Merriam-Webster) – an accident in which the core of a nuclear reactor melts and releases radiation, a very fast collapse or failure, a very fast loss of emotional self-control. (emphasis mine)

Mindfulness – (per Merriam-Webster) – the quality or state of being mindful, the practice of maintaining a nonjudgmental state of heightened or complete awareness of one’s thoughts, emotions, or experiences on a moment-to-moment basis; also such a state of awareness.

Letter written to the meltdowns that my 14 year old special needs daughter experiences:

Dear Meltdowns, Welcome and Meet My Friend Mindfulness

Sometimes I’m able to sense when you’re lurking in the shadows. Sometimes I’m not. And you sneak up like a cat stalking its prey.

You penetrate the peace of an otherwise tranquil day like an earthquake suddenly rocking and rolling in the middle of a quiet night’s sleep. You are the complete opposite of fun and joy.

You are loud, aggressive, physically harmful, and verbally malicious. You lack compassion, empathy, and kindness. You take all actions and words personally.

What I want you to know is that I welcome you. Not like I’d welcome my best friend coming over for coffee and chatting. I welcome you like one later appreciates a grumpy relative during the holidays knowing that being around this person can help us to learn more about our own triggers.

You are helping us to know what emotions and situations Lillian has resistance to fully experiencing. You are the red flag that goes up as a warning that THIS is where she feels vulnerable.

So, I welcome you. I meet you with love.

When I am in a peaceful, mindful state, going with the flow of life, I handle you just as easily as a leaf floating in the wind. I choose not to accept your meltdown hook.

When I’m resisting life, choosing grumpiness, and having an off day, I accept the hook you’ve thrown out and jump right in with both feet. These are the times I learn more about myself.

Either way, one thing I know for sure is that you are not the true Lillian. The true Lillian is there, and you are simply acting as a buffer so she doesn’t have to experience the rawness of life. It is my hope that as I meet you with kindness and compassion, you see that it’s okay to move aside.

Lillian can handle the unexpected, the discomfort of not getting her desires, and the “letting go” of learning to be flexible. It’s okay to release your grip.

I will continue to meet you with a calm voice and compassion as often as possible, until the day you realize it’s okay to become dormant, slip into an eternal sleep, and allow a miracle – the miracle of Lillian fully experiencing emotions and going with the flow of life.

Love,
Camilla (Mom to Lillian)

Lillian has a rare genetic condition called 18p-. This means that she is missing the short arm of chromosome number 18 and it affects about 1 in 50,000. The main way this manifests for her is that she is speech impaired, and has balance and motor skill issues. Also, for the past year and a half she has struggled with experiencing anxiety and difficult emotions.

**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

Situations that can cause Lillian to meltdown:

  • Events not unfolding as anticipated
  • Schedules being adjusted
  • Communication difficulties
  • Being reprimanded
  • Teasing from her sibling

In July 2015, Lillian had the worst explosive meltdown we’ve ever experienced. We made a quick stop at the grocery store to get a few items.

As I paid for our items, Lillian caught up with me, and once I was finished, I could sense her energy shift. Apparently, there was a miscommunication between us about looking at more gluten free desserts.

This quickly led to a volcanic explosion for Lillian. Fortunately, I was close to the exit doors, so I made my way out and headed to the car with Lillian melting down behind me. I quickly got into the car and invited Lillian to do the same if she was going with me. She was not open to doing any of the mindfulness techniques we’ve been learning.

I decided to start making our way home even though she had not calmed down – not the best choice in that moment. She was scratching, pinching, and pulling my hair from behind.

I pulled the car over, turned to Lillian and screamed some ridiculously outrageous comments. I quickly realized I must get out of the car. We needed space between us as I was bleeding and in a great deal of pain from the scratches and she was a big hot mess.

Once out, I closed my eyes, took a few deep breaths, and asked to see the situation differently. Upon opening my eyes, I saw, shining up at me from the rock and dirt filled ground, a beautiful red jewel heart. There was my answer, a reminder to always respond with love.

At this point, Lillian was ready to do a calming, mindful technique and I requested that she do it on her own. She got out of the car, chose to pick up a couple of rocks and studied them. After a few minutes we got back into the car and drove home.

We’ve not had anything of that magnitude happen since and I am hopeful this was simply “one step backward” before more steps forward. When this happens, one of us must be fully present and mindful or things can escalate.

Lillian has been seeing a psychotherapist since April 2015. We are working on cognitive behavioral therapy with mindfulness training. Additionally, I work with her on physically feeling the emotions within her body.

She has made great progress. It’s slow going, yet I feel we are closer to the ultimate goal.
The miracle of Lillian truly experiencing negative emotions and the rawness of life without the buffer of a meltdown.

At some time or another it’s possible we’ve all experienced our own version of a meltdown. Mindfulness is a miraculous practice to bring into one’s life. Once we become practitioners of mindfulness, more often than not, we are able to remain calm and peaceful when we or our children experience the rawness of life.

With mindfulness we are able to tune into our body and notice the beginning signs of a meltdown; clenched jaw, increased heart rate, tight shoulders or neck, stomach pain.

At this point we can say or think to ourselves, “There is anger inside of me.” This is the opposite of thinking or saying, “I am angry.” These two statements have completely different meanings and will take one down different paths.

Once we acknowledge there is anger (or any other uncomfortable emotion) within us, we can then put our focus on how this physically feels in the body. Is it tight, rolling, moving from place to place?

Let’s be real here. This is absolutely not fun and can be extremely uncomfortable. Yet, if we stick with this practice, it will become more of a habit and eventually the uncomfortable emotion will release.

If we wish to help our children, special needs or not, in this area, we must first practice this for ourselves and model this to them. Why would they meet a meltdown in this way if they never see us do this?

Examples of mindfulness techniques used with Lillian and her sibling, Thomas:

  • Focusing attention on a favorite rock, gemstone, or crystal. Concentrating on how it feels, looks, smells, and sounds.
  • Breathe work. At times with no phrase and at times with different variations of phrases.
  • Focus on in and out breath.
  • Breathing in, I am calm. Breathing out, I am peaceful.
  • I am in control. I can handle this situation.
  • Guided 5 minute mindful exercises.
  • Relaxing each area of the body.
  • Focusing on different areas of the body.
  • Walks in nature to include focus on flowers, trees, birds, ducks, etc.
  • Thinking or saying a peace mantra, Om Shanti Om.
  • Taking turns describing in detail another family member (remembering to use non-judgmental words) and similar family exercises.

These techniques were learned by me during the past 18 years of reading, studying, and practicing the teachings of Thich Nhat Hahn, Louise Hay, Wayne Dyer, Eckhart Tolle, Marianne Williamson, Deepak Chopra, Lao Tzu, Pema Chodron, Raphael Cushnir, and The Dalai Lama.

In between monitoring the debut of the article yesterday, there was a meltdown. Lately they are brought on by disagreements with her sibling .. Thomas. So, as I sat sharing, responding, and getting the word out; my hands were stinging with fresh scratches.

I have faith that with the mindfulness exercises we practice, discussions of recognizing emotions, and time spent in nature; eventually Lillian will succeed in going with the flow and simply letting things go ..

I must share with you that when I received the email from elephant journal Sunday night, I panicked. A wave of anxiety and fear swept over me and I felt as if I was drowning in sadness. Thoughts of what others would think of these words straight from my heart weighed heavy on me.

I went to bed Sunday night connecting with these feelings, focusing on how they physically felt in my body. The feeling had subsided some by the time I got up the next morning. After an hour of meditation and a solo walk in the fresh snow, it had completely lifted and I was free to allow and receive joy. I felt it was important to share this with you.

Would you like to help spread the word? Here are ways you can help:

  • Have me speak to your group about mindfulness and emotional connection
  • View the article on Elephant Journal’s website
  • Leave a comment on their website by scrolling to the bottom of the article
  • Share the article using the share buttons near the bottom of the article (feel free to tag me if you share on facebook)
  • Blog about the article on your own blog (like Tania Marie did on her blog)
  • Leave a comment here
  • Share this article using the share buttons
  • email the article to others
  • Share with parenting groups, including special needs parenting groups

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!

Renown Children’s Hospital Scribbles …. Journey to Special Needs Parenting

Gallery

This gallery contains 1 photo.

I recently got the privilege of guest posting on our local children’s hospital blog. Head on over to the  Renown Children’s Hospital Scribbles blog to read the full posts y’all! Part 1 – It began one December evening in 2004 while … Continue reading

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


I’m pretty sure Lillian has said something like this at least once in the past. I’m not sure exactly why, but this time it felt like a punch to the gut.

Lillian falls frequently due to depth perception and balance issues. She fell pretty hard on the tile floor tonight, and this is what prompted her to make the, “I wish I wasn’t an 18p- girl” statement. She’s okay. Got one heck of a bruise on her elbow. I told her it was okay to feel like that and to wish she didn’t have 18p-. I also told her that 18p- is not who she is. I told her she is Lillian, and 18p- is just a special quality she has. She smiled and said, “I know.” Twenty minutes later she was fine and had forgotten all about her comment.

I didn’t though . . . Guess you could say this is my Moment of Defeat – Take Two.

The moment after she was in bed, I had that “time standing still” feeling and the tears began flowing. I began to question everything I’m doing, my belief system, my thought processes. I had the “Who do you think you are?” and “What are you doing?” thoughts in the mix too. The last time something like this hit so hard was in May 2010. I wrote about it here: A Moment of Defeat.

Why? Why did this statement, on this particular night, this particular week have this impact on me? Maybe partly due to the book I’m about to release in which I share about myself, my past, my thought processes and my belief system. I’m on the edge, facing some fears and taking hold of that vein of courage within me. Then, I’m sucker punched by one little statement from the little girl who inspired me to “be” where I’m at and to write this book.

Maybe partly due to needing a break from this beautiful young lady. Maybe partly due to feeling a bit guilty as I’ve not shown patience lately in understanding what Lillian is trying to say to me. Guilty because there are times when I cringe when I hear her begin to speak to me. I know I will not understand half of the words she speaks and I will have to focus 100% on what she’s trying to say and it will take double or triple the amount of time to understand one little sentence . . .

**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

Yep, this one hit hard. Only for a moment though (well, okay, maybe a few hours!). I remind myself that I DO exhibit patience more times than not, I DO choose to have a sense of humor and laugh about it with Lillian. I remind myself I KNOW why I wrote this book. I KNOW that my belief system and thought processes are right for me as this is what brought me to the acceptance and happiness that has always been right here within me. I remind myself that I am sharing it with others in the hopes that something I’ve written will give someone hope, encouragement and inspiration. I remind myself that just a few hours earlier a little girl with wisdom filled eyes looked in mine and said “I know.”