Tag Archives: Chromosome 18

The Shift and Miracles

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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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I is for Improvise

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(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

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(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

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(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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Your Intuition Knows What To Write

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“Your intuition knows what to write, so get out of the way.” – Ray Bradbury

I was given the wonderful opportunity to guest post on 2 Dream Productions’ blog about why I write and what led to the writing of my first book, “D iz for Different”.

Here’s an excerpt:

“How Purging the Garage Led to Writing a Book

Call it intuition. Call it my gut. Whatever it’s called, there is something inside of me compelling me to write. Sometimes gently, other times strongly, it nudges me saying, “You’ve just got to share that.” I fought this feeling for a long time, thinking I had nothing meaningful to contribute. At this point in my life, I know that the treasure lying within me, the one I am to share with humanity, is my view of everyday life. I most often share this through writing.

Sometimes I question myself with thoughts of, “What are you doing? Why are you wasting time on this? Who cares what you think? Who cares what happened with you today?” These thoughts can be very discouraging and cause me to doubt myself. However, time and time again, I magically and miraculously receive confirmation that what I’m doing and the path I have chosen is inspiring and helpful to others. These powerful, undeniable moments cause my fears and hesitation to disappear.

My writing journey started …. ” (Go here to read more.)

Head on over and check out 2 Dream Productions if you are an author or aspiring author!

2 Dream Productions, Inc. is a book publicist company that specializes in working with authors and publishers to get more publicity for their books, brands and products. 

Blessings,

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

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F is for Flexibility

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(Excerpt from my book, “D iz for Different – One Woman’s Journey to Acceptance” – published 2012)

Flexibility, fun and faith . . . that’s a trio I definitely want in my life!

There are times in our lives when fun does not fit in with what’s going on! It’s not possible to always have fun, or find the joy in every situation. However, it is possible to be at peace with the experiences life deals us. To be at peace is to be in a state of acceptance, and be present and attentive in the here and now. Once we have achieved the place of acceptance it is easier to see the joy, humor, and fun in the everyday happenings of life, and ultimately have faith.

With each passing day acceptance becomes easier. I am more attentive and present when Thomas and Lillian are talking to me. I am really listening to what they are saying. Sometimes, I must admit, it is just plain funny! One morning Thomas, Lillian and I had a conversation that each of them are actually aliens from Planet Mercury. They told me they are just here visiting and will have to go back home soon. We had a thirty minute conversation about their home planet. I told them I would miss them so very much when they go back home. They said they would miss me too. After breakfast they began packing for their return voyage back to Mercury. Not your typical Saturday morning breakfast, but we had tons of fun using our imaginations. I choose to stimulate their imaginations instead of discounting what they say. Being able to call upon their imagination is a skill I want them never to lose.

As often as possible, I attempt to create an adventure out of as many minutes, hours and days that I can. It may sound like a lot of work, but really, it doesn’t have to be. Adventure is what one makes it. If we remind ourselves to be flexible and think simplistically, it isn’t hard at all to create adventures. I find great fun in turning a simple task or event (something we are already doing), into an adventure.

Something as simple as going to the library can be made into an adventure by having a scavenger hunt for certain types of books. One day, I had Thomas and Lillian make a list of about five places or things they wanted to see, or find. We had a great time driving around all day to parks and stores finding the items on their lists. We didn’t buy anything, but I marked their success by taking a photo of them in front of the place, or with the item they found (you can see some in the photo gallery).

Being flexible decreases stress, and allows us opportunities to be creative. Flexibility also serves us in releasing our attachment to rigid expectations. When we choose to be flexible rather than rigid, it is much easier to accept change when situations do not turn out as we may have planned.

Flexibility is a characteristic that serves me well as a parent, definitely as a mom to a child with special needs, and in life in general. I am sorry to say that the old Camilla was not a very flexible person. Things had to be done my way, or someone was going to pay! I cringe when I think about how rigid, and inflexible I used to be.

The awakened Camilla has learned the wonderful quality of being flexible. To some, it may seem like indifference when I shrug my shoulders, or turn the other cheek, but through practice, I have learned to be okay with whatever happens.

F is for Fear

I could not let this chapter be complete without mentioning fear. Fear is something that every parent experiences. In fact, everyone has fears. Parents of children with special needs have an entirely different set of fears, and then some, compared to parents of kids who develop typically. Fear is one of the stages we move through when we first learn of our child’s diagnosis. These fears can get the better of us if we are not managing our thoughts in the present moment. For instance, we may take one little comment from a doctor, nurse, parent, or friend, and let our mind run away with it. We fabricate in our mind what the future would be like; what about the next time …next week…next year…from now to when our time here is over? I am not saying we shouldn’t make plans for our family’s future. Make those plans, get everything lined-up, and set in the best way for your child with special needs and their siblings. Just remember not to always play out future events (school, friends, sports, marriage etc.) in your mind.

Learning to have faith in myself, and the decisions I make has absolutely helped me along this journey. Even though I still experience moments, days, and even weeks, when my faith in myself gets weak, I never ever fully lose sight of it. Having a rock solid faith in ourselves, is the foundation for the journey we are traveling.

Tip for the Journey:

Learning to be flexible comes with patience and practice. Choose one situation a week to be flexible about. Then take it to one situation per day. Each morning when you wake up, say to yourself with love and joy, “I choose to be flexible today.”

Developing the habit of having consistent, strong faith in yourself and your choices will only come with time and practice. To battle being your own worst critic, put sticky notes on your mirror, in your purse, in your car, and wherever else you need them, with reminders that you are amazing, you are perfect the way you are, to have faith in yourself, trust your path and trust your intuition. Choose whatever phrases or quotes are meaningful to you and put those on the sticky notes also. It can be hard to keep faith in ourselves; but the more we practice being kind, the quicker we will pull ourselves out of those times when we lose the faith.

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

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Latest News: Sixth Annual Lillian Presentation

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Lillian’s birthday and the dawn of a new school year are upon us. This was the sixth annual “Lillian” presentation to her classmates. It began in the first grade because her classmates kept asking me “why” questions about Lillian. I figured why have them wondering and drawing erroneous conclusions and choosing to judge her when I can try and help them understand.

The presentation went GREAT! I got lots of questions and one sweet young man bought a copy of my book, D iz for Different, for his aunt. He has a cousin with 22q-. So sweet!

I like to share my presentation publicly because so many other parents are curious about this and some want to take the plunge and do their own presentation. Please use it as you need. I only ask that you let people know where you got the idea or information.

These are my raw notes for the presentation. I add to or skip information as I feel needed.

Lillian and Being Different

“If a man does not keep pace with his companions, perhaps it is because he hears a different drummer. Let him step to the music which he hears, however measured or far away.” – Henry David Thoreau

(Slide 1) Chocolate Candy Recipe ~ Each chocolate has a recipe – all use cocoa, and dark or milk chocolate

What ingredients make chocolates so different?

Fruit – Cherries, Coconut

Nuts – Almonds, Cashews, Peanut, Hazlenuts

Flavorings – Vanilla, Orange, Strawberry

We are like chocolates – we each have our own special recipe with special ingredients that make us DIFFERENT, UNIQUE, BEAUTIFUL AND AMAZING.

Chocolate recipes are usually in a book or written on paper or even in someones head. Our recipes for our bodies are in our genes.

Genes are our recipe for our bodies and they decide:

(Show book … “You’re Full of Genes” by Claudia Zylberberg Ph.D.)

Brown or Blue Eyes
Short or Tall
Straight or Curly Hair
Need Glasses or Not
Have Freckles or Dimples
Have small feet or big feet

Genes decide EVERYTHING about you and your body and how the parts should work. If some genes are missing or duplicated this decides whether something with our body doesn’t work.

Another way to explain is that genes are all of the instructions the human body needs to function.  All of our bodies genes are organized into structures called chromosomes.

(Slide 2) Let’s look at this like a Chocolate Candy Cookbook.  If the recipes are genes, then each chapter (Chocolate with Nuts Chapter, Chocolate with Fruit Chapter) is like a chromosome.  The chapters, or chromosomes, make up the book – in our case, the book of life.

(Slide 3) Chromosome, DNA, Gene Slide

(Slide 4)  There are 22 numbered pairs of chromosomes, plus two sex chromosomes (male or female).  Each chromosome is numbered and each chromosome has a waistband.  The waistband separates the short arm (p) and long arm (q) of the chromosome.  (slide 4)

(slide 5) Lillian has a very unique recipe (genes) unlike any of you.  A section of her recipe is missing – deleted (called a chromosome abnormality).  A piece of her #18 chromosome is missing – the short arm of her #18 is deleted, so it’s called 18p-.

What happens if you leave out an ingredient for a recipe?

(slide 6) Lillian has to work harder at doing many of the things that are easy for you. She’s had to do this since being a baby.  Things like turning over, holding her head up, crawling, walking, making sounds, cutting with scissors, eating, writing, talking.

Lillian’s mouth has to work so much harder to chew and swallow and speak.

Her hands have to work harder to do things like writing, cutting, make crafts, opening packages.

Her body has to work harder at walking, running, and staying balanced.

She’s very nervous, startled and scared about loud sudden noises (thunderstorms, fire alarms for drills, helicopters)

Lillian uses an iPod Touch with an application installed that allows her to type in what she needs or wants to say and press a speak button. Talk about Proloquo2Go. She can also simply type what she wants to say in the notes section or texting section of the iPod. She doesn’t really use P2G as much as she did when she was younger.

Lillian has all the words and things she needs and wants to say in her mind. She has problems articulating it (saying it) clearly.

She is just the same as the rest of you in many ways. She likes to read (mysteries, non-fiction books and friendship books), loves listening to a variety of music, she likes french fries, hot dogs, meatloaf, donuts, and she loves going for walks, taking pictures, and telling and listening to jokes.

Lillian loves the stars, moon and sun (astronomy) and loves dancing and just being silly. She’s passionate about the weather. She tracks the weather every day!

I want to share some ideas and thoughts with you on how you can be awesome, supportive, and helpful friends and classmates to one another and to Lillian! I want to make sure you understand I’m not solely talking about Lillian with how to be supportive. This is for all of you.

Encourage one another if you see any of your classmates or Lillian having a hard time.

Lend a helping hand if you see one of your classmates struggling.

Be patient with Lillian if you don’t understand what she has just said ~ encourage her to use her iTouch to tell you what she’s trying to say or write it down or verbally spell the word for you.

Be patient with one another too.

Take that first step and ask Lillian what she did over the weekend or about her likes, dislikes ~ questions you would ask your fellow classmates and friends.  You will have to wait longer for an answer; but the good feelings you get from showing kindness and friendship to someone who is a little different will outweigh the amount of time it takes Lillian to respond.

This goes for any of your classmates. If you see a classmate all alone, take that first step. Go over and start a conversation with him or her. Also remember to respect if that person chooses to be left alone. Some times we just need alone time.

(Slide 7 & 8) Team TLC and Different iz Good

Now, let’s switch gears a bit and talk about being different. It’s okay to be different. It’s okay to be YOU.  We all, at some point, feel like we don’t fit in and feel like we are different. That’s because we are. We are uniquely us, we are just as we were meant to be.

Most times we chase after trying to fit in. Fit in with the cool kids, the loud kids, the fun kids, the popular kids, the crazy kids. You may not understand this now, but chasing after trying to fit in comes back to haunt us later in life. It becomes a habit and then we chase after friendships, relationships, careers. The easiest and most fun route to take in life is to just be YOU and be grateful for whatever it is that makes you YOU!

Before we can accept and be kind to others and to those with differences, we must first accept and love ourselves. We must be kinds to ourselves and know that we are awesome and special … each and every one of us has something that is special and unique about us. Some of us are just shy about sharing it with others.

When I was your age I was uncomfortable with my name because no one could pronounce it right when they first met me or when trying to pronounce it for the first time. It made me stand out and I was not comfortable with that. I was also always the tallest kid in my class and I had these ginormous lips! Don’t get me wrong I love my name, my height and my lips as an adult; but when I was your age I was uncomfortable with my name and I got teased about my lips. That didn’t feel good at all. I sure would have handled it better if I’d had someone sharing this message with me when I was your age.

Different is okay. Different is Beautiful. Different iz Good. The more we let our differences and our uniqueness shine and share it with others, the more we encourage others to be themselves. We create a ripple effect that spreads further than we even know.

Let me give you an example of how to accept and love yourself …. Look in the mirror and say out loud .. Camilla, I love you. I love your crooked front tooth. That tooth allows and helps me eat all kinds of delicious and nutritious food. I love your kind heart. It helps to brighten the day of other people. I love your vericous vein covered legs. Those fabulous spider vein legs help you get where you need to go, take you on beautiful nature walks, allow you to drive your car, and most especially they help you to dance!

If this doesn’t feel comfortable you can always write a letter to yourself saying the same things. Gratitude for our own self and body allows us to spread kindness and non-judgment to our classmates and friends.

I believe in a world where we all empower each other, a world where we are each other’s biggest supporters and our greatest cheerleader, a world where we are taught to celebrate one another’s gifts and differences, not to be threatened by them. I believe in a world in which we use our energy to solve the world’s problems and inspire others to do the same, where we recognize one another’s limitless potential.

How boring would our World be if we were all the same? It’d be like living in a World full of only Milk Chocolate …. No chocolate with nuts, no dark chocolate, no chocolate caramel, no chocolate with fruit …. Boring!

(Slide 9) Different iz Good . . . . . Spread the Word!

Slides:

Parent letter provided to teacher to email or send home with kids:

September 10, 2014

Dear Parents:

My name is Camilla Downs.  I am Mom to Lillian Darnell, one of your child’s classmates in Jane Doe’s class. Today I gave a presentation to the class about Lillian and her differences. I began giving this presentation in 1st grade as Lillian’s classmates were asking me questions about her.

I figure why have them wondering and drawing possibly erroneous conclusions about Lillian when it can be somewhat explained. I have changed it a bit every year to keep pace with the increased knowledge and understanding of the students.

I talked with them about how different ingredients are used to make chocolate candy taste unique, and how each of us is made up of different “ingredients” that make us unique. We discussed how each of us has “ingredients” or qualities that make us different and how, specifically, Lillian is unique and different.

Lillian has a rare genetic disorder called 18p-. She is missing a portion of the short arm of her chromosome #18. The main way this manifests is that Lillian is speech impaired – her speech is hard to understand. She uses an iTouch with an application installed that allows her to input what she wants to say (AAC Application called Proloquo2Go – Yes, they make an app for everything!).  She presses the “speak” button when she’s done inputting her sentence/thoughts and the iPhone speaks it. **Update** Lillian used to use this very often. She now prefers to try to be understood verbally by spelling out each word if it is not understood by the listener. She can, however, use the iTouch notes feature or any other feature that allows her to type the message and then show it to the listener.

I also wanted to let you know a bit about Lillian so you can possibly help your child understand in case he/she asks you questions about Lillian’s differences.  Lillian is a very bright young lady; although, she does have problems grasping math due to18p-. She’s also a bit slower and awkward doing just about everything.  Her body just doesn’t move as fast as the typical child.

I ended the presentation with a message for all of the kids that in order to accept others and their differences we must first accept ourselves and what is unique and different about ourselves. I shared my personal experience as a young child and shared the message that Different is Okay and that Different iz Good. I shared my view that we are all perfectly flawed and that is what makes each one of us the unique person that we are.

I also take this opportunity to share about non-judgment and compassion for one another. I give the students ideas about how to support one another.

If you are interested and would like to see the presentation, it is posted on my blog at the website listed below.

Please feel free to email or call me if you have any questions.  If you and your child want to learn even more you can visit www.Chromosome18.org.

Thank you!!

Camilla Downs

The recipe idea for the presentation was adapted from another Chromosome 18 Mom, Melanie Gorrell. She uses cookies in her presentation … I LOVE chocolate, so I use chocolate. The parent letter is also adapted from Melanie’s parent letter.

Inspired Living: Believe in You

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In June of 2012 my daughter, Lillian, recorded herself singing a song of her own making titled “You Can Believe in Yourself.”

Today seemed like the perfect time to share it with all of YOU! I think you can understand it enough to get the message! May it bring sunshine to your day … xoxo

*Lillian has a chromosome abnormality simply called 18p-; which means she is missing a piece of her short arm of chromosome #18. The main way it manifests for her is that she is speech impaired. 

She Flew Into the World on September 14 2001

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……. And she Blew out all 12 birthday candles on September 14 2013 …

Lillian literally came flying into this world on September 14 2001. She wasn’t supposed to arrive here until sometime in October 2001, but I was induced a month early as “they” were worried that she had stopped growing and assumed my placenta had quit nourishing her. If we had known then what we discovered three years later (that she has a chromosome difference called 18p- or 18p deletion), we would have known why she was so small and not growing much.

I had planned on having a natural birth in the gigantic jacuzzi style tub at the Birthing Center attached to my Ob-Gyn’s office. I had my room all picked out and had attended all of the birthing classes leading up to the big event. I was the type that when I decided I was going to do something I put my all into it. I studied everything I could find and get my hands on about natural birthing. I practiced meditating and visualizing what would be happening in my body as the birthing process began and progressed. I read about and studied Natural Childbirth the Bradley Way: Revised Edition (amazon affiliate link) and was on my way to having this baby girl the exact way in which I wanted.

Then, one month before her due date at my regular check up, they were worried that she had not grown. I was sent to a specialist who put me on bed rest for two weeks to see if that helped her grow. I used to be a full blown Type A personality and this was devastating to me. I had planned on working right up until she was born so I would have more time off. I had planned on birthing her in the birthing center. My plans were getting all screwed up and I didn’t like it! (I DID get to have Thomas at the awesome birthing center and DID get to experience a water birth for him!! I arrived at about 9:00 pm on November 13, 2005 and went home a few hours later around midnight!)

After two weeks of bed rest, she was checked again for growth. There had been no growth so it was advised that I be induced right away. We agreed and I gave instructions that I did not want any medications as I still wanted to experience natural child birth, even if I wasn’t getting to experience it in the way I originally wanted.

I kept reading my books and studying right up until we checked into the hospital on the morning of September 14, 2001. I even took some of them with me! After we got settled, the pill was inserted that would induce contractions. Later that afternoon I began having contractions. The contractions didn’t have a pattern really .. coming and going with no consistency at all.

I was doing pretty good at not giving in to the pain, instead focusing on what was happening in my body and with that precious little body  and soul inside of me about to make it’s way out into this World. At times when I began to lose focus, Lillian’s dad did a really good job at bringing my focus back to what was physically happening instead of my mind focusing on the pain.

Of all things, I worked through each contraction by chanting the vowels. I know. Crazy! I had read about the chanting and just skipped over it as I knew that was just something I would not be doing! I went with it. It was working in keeping me relaxed and letting the contraction happen instead of tensing up. I also visualized what was actually happening inside of me. That helped a great deal also.

My Ob-Gyn visited one more time before leaving and told me I would most likely be there through the night and would birth in the morning. When she left, I looked at Lillian’s dad and told him there was no way in heck I was doing this for that long. I was going to relax and have that baby NOW!

The hospital did not allow water births. However, they did allow you to sit in the tub during contractions and up to the birthing moment. I got into the tub and it felt sooooooo good. The contractions sped up rapidly as I was able to relax more and relax into the contractions. We could see Lilian moving down the birth canal headed towards the exit! I had already decided that for me and my baby and our birthing experience, a water birth was the right thing for us. I am a rule follower too, mostly. So I stayed in the tub until I knew she was about to make her exit.

When I felt her head very close to emerging, we notified the nurse that Lillian was about to be joining us. They said they’d be right down and I will never forget the look on that nurse’s face when she entered the bathroom! She said, “Oh my goodness. You’ve got to get out of the bathtub!” My immediate response was “No” as I was about to have a contraction. She reminded me that I couldn’t birth in the water and I said I’d get out after the next contraction.

I didn’t even get a chance to get my gown back on before lying down, having one or two more contractions and that little girl flew out! Literally! My Ob-Gyn didn’t make it back in time and the attending doctor had just come into the room. He said, “Don’t push yet” and I said, “Are you freaking crazy? My body says to push!” So I did and out she flew still in the safety and warmth of her amniotic sac. He had to catch her. Nature did not care if they were not ready!

I felt absolutely amazing after that .. euphoric! I kept thinking, “Oh my good golly! I just had a baby. And I did it naturally!” I felt so strong and full of energy … Like I could do anything! It’s a feeling like no other and one I have not felt since then. I have come close but nothing can match that feeling.

I was ready to go home shortly after that and they would have released me after 24 hours but Lillian needed to get her temperature and blood sugar regulated. We still didn’t know at the time that she had 18p-. I was walking down the hall a few hours after delivery and one of the nurses said, “Who are you? You are something else!”

We stayed in the hospital for 4 days waiting for Lillian’s temperature and blood sugar to normalize. We were finally released and headed home with a beautiful little 4 pound 5 ounce fairy angel!

Now as I watch her dance around the room, singing words that only she understands, talking with her imaginary friends, I think back to the night that she flew into the World.

Lilian is 12 years old now and for the first time ever at her birthday party she blew out her candles on the first try .. ALL 12 candles! This may not seem like much, but because of the shape of her mouth and lips she has not been able to blow like you and I can … Until NOW!

Lillian’s brother, Thomas, was so excited for her! You can see him about to jump with excitement in this picture. He gave her a big hug afterwards. He couldn’t help himself! Lillian does not like hugs but I think she understood and was a little embarrassed with all the fuss that he and I were making in front of her friends! I kind of like that it’s blurry because I thought for sure I’d be taking more than one and didn’t steady my hand before taking this one. I didn’t get a chance to take another … She blew them candles out!!

Here’s a video of her trying to blow out a candle from January 2011. You can see how far she’s come with this skill!

A fairy angel FLEW into the World at 11:27 pm on September 14, 2001 and twelve years later she BLEW out 12 birthday candles. On. The. FIRST. Attempt! You Go Lillian Paige Darnell, You Go!! I love you unconditionally, forever and ever, to eternity, and to the moon and back!

Inspired Living: Be Inspired

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Sunset adventures. Team TLC went somewhere different tonight! Lillian did NOT want to get out of the car or climb up the gigantic rock with stone steps and no rail. I talked her into it with Thomas holding her other … Continue reading →