Lillian and Being Different Presentation

It’s that time of year again … Lillian’s Birthday!! Happy Birthday Lillian!! Every year, except last since I homeschooled her last year, I give a “Lillian” presentation to her classmates. This 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 when I can try and help them understand.

The presentation went GREAT! The kids not only got a lesson in genes, DNA, chromosomes and being Different, they got a lesson in, “The Show Must Go On”. About halfway into my presentation my left contact popped right outta my eye! There I was kinda lopsided you could say. Whatcha gonna do? Keep on going!!!

I’m sharing my presentation here 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.

**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

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.

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 or not 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-.

(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.

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

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

Lillian uses an iPhone 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.

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 and friendship books), loves listening to music (classical, jazz, patriotic, zydeco), popsicles, french fries, donuts, cupcakes with no frosting she loves telling and listening to jokes.

She’s taking piano lessons from Steve, loves the stars, moon and sun (astronomy) and loves dancing and just being silly.

I want to share some ideas and thoughts with you on how you can be awesome helpful friends and classmates to Lillian!

Encourage her if she’s having a hard time

Help her a little if you see her struggling

Be patient with her if you don’t understand what she has just said ~ encourage her to use her iPhone to tell you what she’s trying to say.

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.

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

Now, I want to share a message with all of you. 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.

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.

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 chocate 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 14, 2012

Dear Parents:

My name is Camilla Downs.  I am Mom to Lillian Darnell, one of your child’s classmates in Brigitte Frost’s class … Stillwater Classroom.  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 Lillian.  I figure why have them wondering and drawing possibly erroneous conclusions about her 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 Chromosome 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 iPhone 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.

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 to the 18p-.  She’s also a bit slower 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.

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.

3 thoughts on “Lillian and Being Different Presentation

  1. Camilla, I loved your idea! my daughter is 4y4mo.old, she has partial C18q deletion and partial C18 duplication, she has conductive hearing loss and wears a hearing aid called BAHA ( bone anchored hearing aid) attached to a headband, she is doing well…as you know through Lillian, I have learned a lot with her… Next year 2015-2016, Ariel will start kindergarten…she started her ” school” life since she was 9 months old, now she is in pre-K and very proud, and every time I felt I needed to do something to acknowlodge parents about her, but when she went to preschool, things changed because she was going to a mixed class, typical kids, with special need kids, numbers are like 9 special kids with 6 typical ones… then, for them, for us, they all are the same….. but going to a larger class, the thought of it, scares me a little, not to say a lot…
    Your idea was great, and now I think I can start writing some drafts…
    Thank you !!!
    Patricia

  2. Hey Patricia!! So happy to “meet” you and glad this was so helpful to you! Go Ariel and Go Patricia!! I know it will be fabulous! Hugs to you and Ariel!

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