Latest News: Sixth Annual Lillian Presentation

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.

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