July 11 2021
The yearly conference has kicked off! Sad that we’re not in person again this year. Fingers crossed for next year! Thank you to those who have worked hard organizing this event.
July 12 2021
2021 Chromosome 18 Conference today and tomorrow. You would think with Lillian being 19, the conference material would not be useful for us any longer. Nope. I’m getting very useful information, and asking lots of questions. Incredibly helpful. Thank you C18 Registry & Research Society.
July 13 2021
We had such a wonderful session this morning for parents/caregivers of self-advocates with 18p-. We missed you Katharine Newman .. So sorry you were having technical difficulties. This is such a beautiful group of humans. So blessed to be a part of it.
During our session, the parent presentation to classrooms came up. So I thought it a good time to repost this for anyone who is not attending conference, or for friends who may be dealing with something other than a chromosome 18 difference.
Here’s one of the last presentations I gave on Lillian’s behalf –
(September 2014) – 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 & 😎 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 … Follow the link to read the full presentation and letter to the parents of classmates …
Latest News: Sixth Annual Lillian Presentation
2021 Chromosome 18 Conference – Thank you to the siblings who participated in the Sibling Panel. Beautiful, and honest, as always. I took this picture before everyone was connected. 💜💜💜 GREAT job Thomas!! xoxo
Whew! All done with the 2021 Chromosome 18 Conference, ending with the always fun Starfish Dance. I’m pooped. That was two full days! ❤️❤️❤️ Love you C18 family. ❤️❤️❤️