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 . . .

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.”

 

What Is Special Needs Life Coaching?

 

Life coaching has been around for a long time. A Special Needs Life Coach has been specifically trained to support families who have a family member with special needs and the individual with special needs as well. A Special Needs Life Coach functions as an extension of the family as many families simply cannot do the work alone. The coach and the family decide what role the coach will play in the partnership. A Special Needs Life Coach is dedicated to improving life quality for persons with special needs and developmental disabilities and their families.

One thing to remember is that a Special Needs Life Coach is not a therapist, teacher or counselor. The involvement with a family is usually specific in nature and designed to meet a particular goal and action plan. A Special Needs Life Coach can assist with research, problem solving, connect the family with resources and create and facilitate a Circle of Support.

How You and Your Family Will Benefit From Working With A Certified Special Needs Life Coach

When we became parents, we didn’t receive a user manual with that beautiful little bundle of joy in our arms. We certainly didn’t receive a “How to Live Your Life and Raise Your Child with Special Needs” manual either when we received this news.

Many times this can be overwhelming. Most of us did not imagine becoming a parent and being directly responsible for our child for theirs and our entire life. Many of us like to think we can do this by ourselves and that people will think less of us if we ask for help. Asking for help is a sign of strength.

You may not be clear about why you want to have a Special Needs Life Coach, you just know you need help. Your Special Needs Life Coach will help you gain clarity about why you want help.

If you want to form a partnership with someone who is an extension of your family, someone who inspires you and enriches your life, someone who can do the “digging” for you; then working with a Special Needs Life Coach will be a positive experience for you.

Does Any Of This Sound Familiar?

Do you crave simplicity?
Do you feel overwhelmed with what step to take next?
Are you stressed out all the time?
Do you feel you, your family or your family member with special needs has untapped potential?
Do you feel inadequate when at doctor’s appointments or in IEP meetings?
Do you have an overflowing to do list of items to look into or research?
Is your greatest worry and fear what will happen to your child when you are no longer here?

If you answered yes to any or all of these questions, a Special Needs Life Coach can help. Find one that suits your personality and style. If that seems like me, you can learn more here or contact me here.

The Year of the Present Moment

My Theme for 2012 . . .

It’s the time of year when many people make resolutions for the New Year. I can’t remember that I’ve ever made resolutions. It’s never been appealing to me. What I have done for the past few years is to have a theme for the year. I then use this theme to help with decision making and to have as a vision for the year. I create a vision board to go along with my theme and vision for the year. This gets framed and hung on my wall where I can see it every day. Last year Thomas and Lillian joined me in doing this also and we had fun as a family putting our boards together. Each of their boards is hanging on their wall also. This method has worked miraculously for me so I thought I’d share it with you. Maybe it’s time for a change from the “old style” of resolutions . . . Maybe it’s time to do it different!

Each year my theme and board have gotten more simple. In fact, everything in my life has gotten more simple over this past year. I find that I like and crave simplicity and life is so much easier to enjoy when I have simplicity. Usually I choose two words for my yearly theme. The 2011 theme has been Clarity and Faith. I had a vision of Team TLC being the foundation of 2011. If you’ve been following me, you know that Team TLC was born this year and has blossomed into something wonderful. I sensed how important it was for me to turn my focus and attention on my little family and that all things good would flow from my attention to our Team. I then had four quadrants that stemmed from our Team TLC Foundation. Two quadrants were health and weight. I have lost twenty six pounds and am more aware of the foods I and we eat. Still working on the other two quadrants. So for now, I’ll keep those to my little ole self! ;-)

2012 is The Year of the Present Moment. The foundation will be to Focus on My Purpose in the Present Moment. To make more of an effort to be aware and really truly there for whoever I’m with, talking to, conducting business with or focusing completely on whatever I am doing or whatever event I am attending. I decided to choose three theme words for 2012 and they are Kindness, Knowing and Gratitude. Kindness as I enjoy spreading and sharing kindness and I believe it doesn’t stop with the person I share it with. I also believe we attract what we authentically put out there. Knowing as a reminder to listen to my intuition and gut. Even when I don’t know why I’m being pulled in a certain direction or how I am going to “do” whatever it is. Gratitude as life is less stressful and more joyful and peaceful when I am thankful for all that I have and thankful for all that I will have . . . grateful as if I already had it.

My four quadrants for 2012 are ME, Team TLC, Thomas and Lillian. In keeping with my simplistic theme, I have two words for each one of these. My quadrant is about creativity and patience. Team TLC is about a beach vacation. The Thomas quadrant is about coping and respect. The Lillian quadrant is about math and communication.

I have made many shifts this year. I wrote a book, D iz for Different – One Woman’s Journey to Acceptance, lost twenty six pounds, made a complete change in my career and purged and decluttered my house, garage and life. The book is in the final stages of being edited and cover design. I have three modules left in obtaining my certification as a Special Needs Life Coach. Here’s a little tidbit I learned about purging household/kitchen items . . . Be ready to explain when your Mom visits for Christmas and you got rid of some of the things she gave you!! Oops! No worries y’all, I didn’t get rid of anything of sentimental value . . . just a few odds and ends. I figure if I only use it once a year, I don’t want it taking up space in my life!

Here’s what my vision board will look like when I’ve got it completed. It’ll definitely be much prettier though! Now, what about it? Will you do it different in 2012?

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

Happiness is . . .

Happiness for me is snuggling beside Thomas and talking with him or reading a book with him. Happiness is when he asks to give me a hug and tells me “thank you” for making it better. Happiness is experiencing his excitement and his sense of wonder and awe. Happiness is holding his hand in mine. Happiness is dancing with him. Happiness is over hearing him repeat my shared “words of wisdom” when I least expect it.

Happiness for me is Lillian’s beautiful warm sparkly smile. Happiness is when she exudes pride in her accomplishments. Happiness is touching her beautiful hair. Happiness is sitting next to her and reading. Happiness is her excitement when I pull myself away from the computer and focus on an activity with her. Happiness is her love of books and the library. Happiness is her concern and empathy for others.

Happiness for me is our traditional Team TLC Saturday movie night. Happiness is when Thomas and Lillian show their love for one another. Happiness is seeing Thomas helping Lillian. Happiness is watching the two of them play together. Happiness is a quiet moment with my kids. Happiness is the Team TLC adventures we experience. Happiness is taking pictures of my kids. Happiness is spending time with my Mama and step-father, Frank. Happiness is a warm, hardy, loving hug from a friend. Happiness is spending time with my friends.

Happiness for me is quiet alone time. Happiness is reading my favorite book. Happiness is feeling the sun drench my body in warmth. Happiness is gazing at the moon and stars. Happiness is feeling a light breeze brush across my cheeks. Happiness is nature, the landscape and the peaceful sense of awe I receive from it. Happiness is my comfy slippers. Happiness is making an anonymous kind gesture. Happiness is smiling at others. Happiness is taking pictures of nature. Happiness is the smell of bacon frying in the morning. Happiness is dark chocolate. Happiness is indulging in my favorite foods. Happiness is a good homemade Bloody Mary. Happiness is a taste bud pleasing dark lager. Happiness is a warm, crackling, cozy fire. Happiness is a balmy sandy beach. Happiness is the memory of both my Mammaws, Elnor Downs and Estelle Mann. Happiness is writing. Happiness is sharing my life with others. Happiness is inspiring others.

What is happiness for you? Why not make your own Happiness List . . . it’s good for the soul . . .

Imagination

“I’m having so much fun I wish I could stay 5 years old forever!”Thomas Darnell

We only get each day ONE time – no do overs allowed! Might as well enjoy the heck out of em! Hope each of y’all takes an opportunity today to have the imagination of a 5 year old!!

 

Purging, Weight Loss, and Writing a Book

Ever have a hunch, a gut feeling, something telling you to do something right this very minute?  Around July 1, 2011, I had an urge and a little voice telling me I needed to purge boxes in my garage.  I wrote about it here.  Some of these boxes had been packed since my separation in 2006.  I was feeling {an extremely strong feeling and longing] the need to simplify . . . get rid of stuff.  I fought it though and kept making excuses as to why I could not do it right this minute.  Too busy with other stuff, ya know.  The feeling got stronger and stronger and the voice got louder and louder until I finally listened.

In the first few boxes I unpacked, I came across a book that I had completely forgotten about and had never read.  That book is titled “E is for Entrepreneur” and it’s author is Barbara Hranivolich.  I opened the book and inscribed on the first page was a message to me from Barb. It reads, “This never would have happened without you.”  I had completely forgotten that in 2007 I connected with Barb online and asked her if she would like to be a contributor on a blog I had at the time for women entrepreneurs.  She began an alphabet series to tie in with being an entrepreneur.  I read the book that night and discovered that Barb mentioned me in the C is for Collaboration chapter of the book also.  She wrote, “There’s the woman I’ve never met in person, but who asked me to write these essays for her blog. What a gift!”  Lastly, Barb included my name on her Gratitude List in the book.  WOW!!  What a powerful gift for me to receive!

For the past year and a half I have had the intention of writing a book and it had not materialized.  I sat down and read Barb’s book and a few seconds after finishing the book, I had another urge, a spark of inspiration . . . yes, that gut feeling.  THIS is how my first book was to be structured.  I began to write this book the next morning.  I started to arise earlier than I had been and wrote a section every morning.  I delivered the first draft to my editor and a few “reviewer” friends on Friday, September 9, 2011.

“D iz for Different” is the title with a subtitle of “One Mom’s Journey from Acceptance to Zigzag”.  It’s a memoir of how I came to accept myself and processed and accepted my function as parent to a child with special needs.  Intertwined with how I have to come to think the way in which I do and live my life the way in which I do.  The book will be available in November 2011 at the latest; although I’m shooting for October 2011.  I’ve received an endorsement for my book from Jim Stovall, author of “The Ultimate Gift” which was also a movie.  I am grateful beyond words to Mr. Stovall and my heart and soul are warm and joyful for his kind words.

“As a blind person myself, I understand the challenge and blessing of doing things differently. In this book, Camilla shares her journey with Lillian which will help us all do more, give more, and be more.” Jim Stovall, Emmy-award Winner, Best-selling author, The Ultimate Gift

Not only that, I continued to purge in my garage, in my house and in my body.  I have lost 23 pounds while writing this book and purging and simplifying.  Disgust . . . that’s what did it.  I was just plain disgusted with myself for having gained that weight over the last two years.  I’d had enough, gosh darn it.  So I just quit eating so darn much! I didn’t realize how much food I was eating.  I still eat all my favorite {junk} foods.  I did not deprive myself of anything I enjoy drinking or eating.  I simply ate and do eat less of it.  Instead of eating half a bag of chips, I eat one serving.  I still indulge in Dorinda’s chocolate when I have access to it and still have one or two Dove dark chocolates every day.  I still drink dark lager beers like Guinness and Buckbean’s Black Noddy, still drink wine and still have a Bloody Mary and Dirty Martini when the occasion calls for it!  I still eat ice cream, hot dogs, pizza and pasta . . . I just eat less of it.

I also made one more major shift and change during this Purge Palooza.  I think I’m gonna save that for another blog post.  My gut’s saying to wait just a little longer on sharing that one!!

It is an indescribable feeling and my hope and the reason I share this with you is for each and every one of you to experience listening to your gut and hunches.  You just never know what will come of it . . . Although, I bet you’ll find it’s exactly what you wanted . . . .

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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