July 15 2021
Thomas has been going to Sibshops since he was 8 years old. Today, at 15 years old, he begins the transition to a leadership/mentor role. (As he tires of my picture taking …)
Category Archives: News and Events
The 2021 Chromosome 18 Closer Than Ever Family Conference
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 …
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. ❤️❤️❤️
The Time Before Now
July 3 2021
My cousin, Stephanie, shared some old photos that she found …
Throwback Post: Labor Day Weekend – 2009
**THROWBACK POST**
September 7 2009:
Stayed in Reno & took it easy this Labor Day Weekend.
Took Thomas & Lillian to the library on Saturday. They love the library!
Posing with her early Bday Present from my Mom & Frank!
Date Day with Lillian – Out to eat at one of her favorite places – The Olive Garden! (July 2021 Update – Ummmm …. Not anymore!! Once we began eating at locally owned places, we’ve become french fry experts, for local spots!)
Ignorance is Bliss – Well, Not Always
June 27 2021
When I find that I’m ignorant about a topic, or life hands me that topic into my own life, I educate myself. It has been a journey of deep diving and learning since I stepped onto that airplane in December 2006, and left my marriage. It was not merely a flight from Seattle to Reno, it was the flight to myself.
Ignorance is bliss … Well, not always. Ignorance can be selfish, ignorance can be hurtful to those you love, to yourself, and to your fellow humans.
The more we learn, the more we explore, the more we experience, it can certainly shift our perspective, our lifestyle. Especially when we have been brought up to believe that certain ways of living and believing are wrong. It’s only when we educate ourselves, and open our heart and mind to others that we come to know the absurdity of many of the “wrongs” we were taught as children.
At my 19 year old daughter’s urging, I’m stepping out of my comfort zone, being vulnerable, with worries that I may get this wrong in some way. Staying in my comfort zone keeps me “safe”, allowing me not to commit to anything, or anyone.
She feels that I should share what I’ve come to know about myself. I’m the one who taught her to always be herself, and not to worry about what others think.
Three years ago I realized I needed to educate myself about the LGBTQ+ community. I mistakenly believed it didn’t involve me. That changed when someone very close to me shared that they are a part of this community.
Lillian has the guts and courage for being herself, and for letting others know who she is, no matter what. Up until I had reached my mid 40’s, I hadn’t the courage to speak my mind. Lillian inspires me. If she can do it, so can I … Follow the link to read further …
Chess and Volleyball with a Movie
June 22 2021
Thomas and I played a game of chess, then sand volleyball. Now time for a movie.
Hallelujah – Camilla Gets Respite
June 22 2021
It has been 1 year and 8 months (October 2019) since I’ve had respite. I didn’t realize just how much I needed this until right this minute, typing this. I am in tears.
Hallelujah times infinity! Sweet, blessed relief. She is going to try and stay a full 7 days, as she needs respite, too!! 🤣😂
Hot dam*, let’s party! And by party I mean, do nothing. Absolutely nothing. Perhaps extra movie nights. Enjoy the quiet. Extra reading. Extra relaxing. MINUS being needed every 5 minutes. Ahhhhhh ….
And time for some kitchen dancing …
June 29 2021
Lillian came home today, arriving about 1:30 this afternoon. She hasn’t stopped talking since. 🤪 Did she not talk the entire time she was gone? 🤣😂🤣 We were outside taking in the wild sky. Earlier we had a freaky, huge dust cloud blow through and then purple, pink, yellow, and orange colors. Photos to follow.
A couple of “I’m too old for this shit!” messages from my mom, yet, they all made it the full 7 days! Wahooo!!
Nevada Humane Society – Volunteering with the Cats
June 22 2021
We volunteered at The Humane Society yesterday. First time in nearly two years. This volunteer gig is driven solely by Thomas Darnell. I’m just his assistant as he’s not of the required age to be there on his own.
He was 12 when we went through the training (for cats). He’s 15 now, and has wanted a cat since about 10 years old. He’s very fond of the older cats, not caring much for the kittens.
Throwback Post: Blue Ukelele With Garden Fresh Vegetables
**THROWBACK POST**
September 7 2012:
Ukelele lessons adventures for Team member L!!! Don’t know if you can see it in the picture but she’s got her blue ukelele with her this morning! So cool that she will get private lessons during the school day!! YAY!!
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WoooHoooooo! I’m HAPPY …. I’m GRATEFUL … I’m BLESSED … Did I just win the lottery? No, not a cash lottery; but I just came from “Coffee with Tammie” (High Dessert Montessori Principal) and a pre-IEP meeting with the special education teacher …. I totally won the Perfect-School-for-My-Kids Lottery!! Oh my goodness … these people are amazing, this school is amazing and I’m grateful that a brave and courageous woman, Dr. Maria Montessori, made the choices she made during her lifetime … Born in Chiaravalle in the Province of Ancona in 1870 (August 31, 1870 – May 6, 1952) …. Thank you for being YOU!!
“Every child is a unique individual that needs to be understood, respected, admired and unconditionally accepted as a precious gift of life.” -Dr. Maria Montessori
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I am so spoiled by my sweet friends … Thank you Donna for the beautiful maters and squash straight from your garden …. Thank you for the memories that flooded my mind just from the smell of the tomatoes with the vine still attached … Nothing like it … Reminds me of my mammaw and her garden …
_______________________
September 7 2011:
Lunch adventures for Team TLC!!!
Worst Hour of My Life – Petrilla Fire in Reno Nevada
June 16 2021
Just spent one of the worst hours of my life. I was getting a massage (thank goodness I was nice and relaxed), and when done I had texts from Thomas and Lillian. A fire right across Mt Rose Hwy, from our place. Couldn’t tell if the mandatory evacuation applied to our address.
Took me an hour to get home due to road closures, usually takes 15 minutes. I was near hysterical at the Mt Rose Hwy roadblock, letting them know my kids were home alone. We’re all okay now. Ready to evacuate if it looks like it’s gonna jump the highway, and they order an evacuation. 😱🔥😱
Good thing Thomas has experience with Lillian having a meltdown. Because, let me tell you. She had one. Lots of screaming in the background, as he and I stayed on the phone the entire time. Whew!
I was on the verge of parking my car and walking/running home. Momma bears don’t play! Everyone is calm now. Whew!
I didn’t even get to enjoy the immediate effects of it! I was about to pay my massage therapist and saw all the texts from Thomas and Lillian. I texted her when I got home, and she said, “Now you need another massage.” Gurl! You got that right! I’m trying to relax into it now. Whew!
Helicopter dropping water.
So grateful that Thomas remained calm. The fire is contained now. Two helicopters continue to drop water. All of Team TLC are calm now. Momma Bear may have been on the verge of hysterics, but I was ready to park my car, and walk/run the rest of the way home to my kids. Whew!!
June 17 2021
We are just fine. All is calm. The fire was 40% contained as of 3 hours ago. We don’t have tornadoes, hurricanes, extreme weather (often), and usually only mild earthquakes. What we get starting about this time every year, are fires. We are used to having them. However, this is the first time one has been this close.
As a family, we learned a few things we still need to work on. I think Lillian may always have a meltdown during these times. This is a girl who had to be forewarned about fire alarms/drills when she was in school. Hopefully, we can shorten the duration, and/or have them be less intense. She was calm by the time I finally made it home! That was good on her part! She was texting with friends, and I think that helped.
I’ve just added to my “to do” list to create an evacuation checklist to hang on the cork board, should this ever happen again. We already have an emergency backpack loaded with supplies.
An interesting thing that happened for me, perhaps highlighting the cords between a mother and her children. Before we began the massage, I asked my massage therapist to get my phone out of purse and put it next to it so we could hear it if it vibrated, in case my kids need me. She did that. Neither one of us heard it vibrating for some reason.
During the session, near the end, I began to have something like a panic attack. My anxiety levels were high, and I felt like I couldn’t breathe. I nearly screamed, but kept myself calm thinking perhaps I was releasing some crud lodged in my muscles. That would have been the exact time that Thomas and Lillian were texting me. Interesting. And next time, that phone is going to be on the table with me!
Thank you to everyone for your kind comments and concerns, and to those who have reached out (that live close) so that I will have backup helpers should we need it in the future. 😍 (Photo of Team TLC from November 2018)
