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.
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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
Why does this matter so much?
I’ve been carrying on a great deal about the upcoming Chromosome 18 Conference this July in Savannah, Georgia, thought I’d take a minute to touch on why this is so important to us.
A sense of belonging, of being amongst our own tribe, is one of the reasons this matters. The conference is packed with back to back educational and informational sessions covering areas concerning infants, toddlers, kids, transition age and adults. Sessions about sensory processing, physical and occupational therapy, speech therapy, growth hormone, special needs trusts, IEP meetings, transition, updates regarding research, feeding issues, and much, much more. There is a separate track for the Self-Advocates, as well as a separate track for Siblings. There is also more bonding time after daily sessions are over with a Mom’s night out, Dad’s night out and an outing for all families together.
Lillian’s only friends are her chromosome 18 friends. She texts, emails and writes letters to and with them. They get to see each other face to face at the conference. The bonds they have established grow and deepen. They get to swim together, eat together, be silly together and perhaps even talk about their parents and siblings together with someone who GETS IT! They understand each other. They feel comfortable with one another. She has friends all over the World due to a difference in one little ole chromosome.
I’m excited about the opportunity for Thomas to meet other siblings, share with them, form new friendships and know that he is not alone in the path that he travels as sibling to Lillian.
We learn, we grow, we bond, we are inspired, we laugh, we cry, we come home with information we can use. We each go home knowing that we all belong, knowing we are not alone, knowing that we have a special something in common through an uncommon chromosome.
I wrote an article upon returning from the 2012 Chromosome 18 Conference which details even more of the reasons why this matters to Team TLC. Go here to read about our Journey to Magical Moments.
Thomas and Lillian have decided they want to help get Team TLC to Savannah this July. They stumbled across something in our garage that they decided to get creative with … You can read about it here.
For anyone who does not know us, here’s a little more information. Lillian, my 11 year old daughter, has a genetic difference referred to as 18p-. She is missing a piece of her short arm of chromosome number 18. This affects 1 in 50,000 people. The Chromosome 18 Registry & Research Society provides an online venue, private and public, for us to connect. They perform genetic research and are there to guide us and answer our questions. The Registry is located in San Antonio, Texas. It exists because a Mom, Jannine Cody, was told about 20 years ago that her daughter had 18q-. Her advocacy, strength and courage led to what we have available to us today. You can find even more information by going here.
My 7 year old son, Thomas, and 11 year old daughter, Lillian discovered my stash of beads in the garage. I went through a short lived period in 2007 making stretchy bracelets as a creative outlet. They have decided they will make bracelets to earn money to attend the 2013 Chromosome 18 Conference this July in Savannah, Georgia!
Each bracelet is custom made when you order. Team TLC bracelets are made with different combinations of Swarovski crystals, fresh water pearls in beautiful, traditional, cool and funky colors, nut beads, lava beads, hematite beads, and much more. Not all beads previously listed will be used in each bracelet. We decide how and which beads to use for creating your bracelet according to your favorite colors. You can also choose to have an acrylic or Czech Pressed Glass Bead number 18 included on the bracelet.
Visit The Team TLC website to learn more about the bracelets and visit the article titled “Why It Matters” to learn more about why this is so important to us …..
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Another summer and another Chromosome 18 Conference has come to an end. Another journey of adventures with crazy luggage, stairs, peaceful strolls along the Riverwalk, laughter, tears and …. magical moments. A journey to a place where not everyone knows … Continue reading
I’m pretty sure Lillian has said something like this at least once in the past. I’m not sure exactly why, but this time it felt like a punch to the gut.
Lillian falls frequently due to depth perception and balance issues. She fell pretty hard on the tile floor tonight, and this is what prompted her to make the, “I wish I wasn’t an 18p- girl” statement. She’s okay. Got one heck of a bruise on her elbow. I told her it was okay to feel like that and to wish she didn’t have 18p-. I also told her that 18p- is not who she is. I told her she is Lillian, and 18p- is just a special quality she has. She smiled and said, “I know.” Twenty minutes later she was fine and had forgotten all about her comment.
I didn’t though . . . Guess you could say this is my Moment of Defeat – Take Two.
The moment after she was in bed, I had that “time standing still” feeling and the tears began flowing. I began to question everything I’m doing, my belief system, my thought processes. I had the “Who do you think you are?” and “What are you doing?” thoughts in the mix too. The last time something like this hit so hard was in May 2010. I wrote about it here: A Moment of Defeat.
Why? Why did this statement, on this particular night, this particular week have this impact on me? Maybe partly due to the book I’m about to release in which I share about myself, my past, my thought processes and my belief system. I’m on the edge, facing some fears and taking hold of that vein of courage within me. Then, I’m sucker punched by one little statement from the little girl who inspired me to “be” where I’m at and to write this book.
Maybe partly due to needing a break from this beautiful young lady. Maybe partly due to feeling a bit guilty as I’ve not shown patience lately in understanding what Lillian is trying to say to me. Guilty because there are times when I cringe when I hear her begin to speak to me. I know I will not understand half of the words she speaks and I will have to focus 100% on what she’s trying to say and it will take double or triple the amount of time to understand one little sentence . . .
**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 ….
Yep, this one hit hard. Only for a moment though (well, okay, maybe a few hours!). I remind myself that I DO exhibit patience more times than not, I DO choose to have a sense of humor and laugh about it with Lillian. I remind myself I KNOW why I wrote this book. I KNOW that my belief system and thought processes are right for me as this is what brought me to the acceptance and happiness that has always been right here within me. I remind myself that I am sharing it with others in the hopes that something I’ve written will give someone hope, encouragement and inspiration. I remind myself that just a few hours earlier a little girl with wisdom filled eyes looked in mine and said “I know.”
Camilla and Lillian
“Most people see what is, and never see what can be.” -Albert Einstein
Observing, paying attention, being aware of the present moment. What’s happening, who you are with, are you having a conversation? Are you really being present for the conversation or are you thinking about all those bills that are due or what you’re making for dinner or what happened on the last episode of your favorite show.
Observing and paying attention are keys to our own happiness and success. In addition, they are crucial in our function as special needs parents. Have you noticed that many with intellectual disabilities are more intuitive than us typical folks. They can sense insincerity, they know when someone is not being present, not listening to them, “faking” kindness. {Just had someone point out that they think we ALL sense insincerity. I’m thinking I didn’t use the proper words to describe what was going on in my head! From my perspective, as Mom to Lillian, I have noticed that Lillian is super sensitive to adults in her charge who are insincere – even when I sometimes don’t initially sense it. I’m also not saying that those with intellectual disabilities are “more” than those of us who have all of our genes. I believe some who are missing genes have a heightened or increased awareness in some “areas”.}
How will we guide our kids with special needs into a fruitful, happy and successful future if we are not present for them? Observe their likes, dislikes, what are they good at doing, favorite hobbies and maybe they have topics or interests they seem obsessed with . . . the weather, the time, making lists, making a plan and sticking to it. Observe these and then use these qualities to their advantage in life. They like these things for a reason. It’s not up to us to figure out why they like or don’t like something or why they are obsessed with a topic. Let’s observe, be present and give them every single opportunity we can to blossom and use the special and unique gifts they have.
I recently returned from the Chromosome 18 Conference and I was humbled by the young adults. {The photo above is Lillian and I at Reno/Tahoe airport headed to the conference in Indy.} One of the last conversations I had with my Chromosome 18 family was in the hotel restaurant having lunch with 20 year old Kati. Kati’s mom, Deb, and I began talking about movies and I mentioned the Lion King. Kati said that was the first movie she had ever seen. Then she proceeded to tell me the second movie, the third movie, the fourth movie and on and on up to the Last Harry Potter movie she had seen. She remembers this about books she’s read also. I don’t know about you; but I find that pretty darn amazing. I was in awe of this young lady. How many of you remember every single movie you have seen beginning with the very first one. Kati loves to plan events and trips. She is planning a trip to Vegas for her 21st birthday which is a little less than a year from now. She loves horses and wants to travel to New Zealand and Florida. This young lady is amazing and look at the unique and special qualities she has been gifted.
I was also intrigued by how many of the young adults have as a dream working with animals and/or children. It seemed to be a very common thread. I asked my friend, Catherine Burzio, if she thought it was that each was simply picking up or borrowing what the previous young adult had said. She said “No, that’s not it at all”. It’s the unconditional love that animals and young children give. I fully understand that for one reason or another there are reasons that some of these young adults cannot work as a vet or even a vet assistant or in a child care facility. But, do you think if we observed them more and were present more we and possibly a coach and our community could find or create just the right fit for them. A fit that gives them the opportunity to do what they love and enjoy and are good at and earn money for themselves.
I don’t know and I’m not at all saying this is the right technique for everyone . . . I’m just thinkin “out loud”. What do you think?
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