Tag Archives: chromosome abnormality

11 Ways to Help Team TLC With Attending the Chromosome 18 Conference

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C18 Trip July 2016 #17

We need your help! Last minute fund raising for Team TLC’s attendance at the 2017 Chromosome 18 Family Conference in Naperville, Illinois from July 12th – July 15th.

Fortunately, we have a sponsor who has loaned us money for our airfare, registration, and hotel stay. And we have a wee bit from Thomas and Lillian fundraising since last year’s conference.

We just need to make sure we have enough for incidentals while there … food, transportation to and from the airport, and the special events lined up for siblings and self advocates.

If you are moved to help, here’s a list of our creations …. Go here to read the full post ….

Help Team TLC With Attending the 2017 Chromosome 18 Family Conference

Blessings,

Camilla
See It. Share It. BE IT … Spread Love Everywhere You Go!

Wonderfully exciting news! My 15 year old daughter, Lillian Darnell’s book, Where Would You Fly and Other Magickal Stories will arrive soon. Be ready to enjoy the magick! Learn more and pre-order here.

I is for Improvise

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(Excerpt from my book, “D iz for Different – One Woman’s Journey to Acceptance”)

We all improvise on a daily basis. We just aren’t aware of it because it happens so naturally. When we have spontaneous conversations with people during our daily interactions we are improvising. Our dialogue is not “memorized” or practiced. Tapping into this natural improv skill has helped me in dealing with my kids and with not-so-great life situations.

People tell me it makes them tired just watching all the adventures my kids and I have. We really don’t do that much. It just seems that way to those on the outside of our little world. By nature, I am an introvert. I love staying home; but I also know I want my kids growing up learning that you can turn just about anything into an adventure. Be spontaneous. Making things up as we go along is the ultimate adventure. It may not be possible to do this all the time, but with practice you can incorporate it at every opportunity. Our kids will learn how to tap into their own improvisational skills the more they see us doing it. By our example, they will learn how to turn the everyday into an adventure and how to cope when things don’t go their way.

Recently we arrived at an event that my kids had been anticipating all day. As we got closer to the building we saw a line that snaked around the entire building. There was no way I was going to stand in that line. Fortunately, Thomas and Lillian agreed; but they were still disappointed. This was an opportunity to improvise and save the situation. On the way home we stopped at one of our favorite places in Reno, Audrey Harris Park. The earlier excitement in the car returned as we made our way. It’s not really much of a park. It’s very small, with only a couple of benches and it sits at the edge of a ridge. It’s a special place to us though. I am in love with the amazing view of Reno and the skyline which infuses me with peace and awe. I take joy in the drive there and the drive back home. Thomas and Lillian enjoy the view too. More than that, it has become a special place for the three of us as a family. What a great day!

Being a single parent to Thomas and Lillian has indeed been an adventure. In fact, my entire life is a great improvising adventure. Being that I am a procrastinator, with an added pinch of spontaneity, you could say that I am quite the adventure for my kids. Even though I make much of our escapades up as I go along, it is perfect, and I look forward with a happy, smiling heart to every single adventure yet to come for me and my little family.

Tip for the Journey:

Find some time during your day NOT to have a plan. No planned activity, no schedule to follow. Wait until that specific moment and ask yourself what you would like to do for the next hour or two. If you are with your kids, ask them what they would like to do, what kind of an adventure they would like to go on. Kids can come up with some pretty amazing ideas for adventures. Most likely you will not really be able to have the exact adventure they suggest, but this is where improvisation comes into play. As parents, we improvise all the time, and don’t even realize it; when a toy breaks, or the scissors are missing, or they want something to use as a ramp to play cars. You name it! Practice transferring this great skill to other areas to create peace in your life.

When we aren’t happy or not truly living in the present moment, it’s hard to improvise. Practice keeping yourself in the present moment. As often as possible repeat thoughts and activities that help you to pay attention to the present moment, experience joy, and be inspired. When you live in the present moment you are better equipped to tap into your improvising skills, be spontaneous, and go with it.

Heartfuly Inspired,
Camilla
See It. Share It. BE IT … Spread Love Everywhere You Go!

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G is for Gift

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(Excerpt from my book, “D iz for Different – One Woman’s Journey to Acceptance”)

Each and every person on this Earth is unique, and holds a gift to share with the World . . . our true selves. This includes those in our society who have a handicap, disabilities, and those with special needs. Many of us keep our true selves buried deep within, as I did, for fear that we will be considered different and unaccepted. Some of us just need a little extra help in the form of guidance to nurture and grow our special gifts. Okay, maybe a lot of extra help! Everyone benefits when we let our differences and gifts radiate and glow.

Our differently-abled children simply process the world, information, and life, differently than we do; but they are in good company. There have been many throughout history who also processed differently; like Albert Einstein; Michelangelo; Thomas Edison; Amelia Earhart; and Steve Jobs, to name a few. They had amazing, life changing, life improving gifts, and were successful in spite of their label as freaks and kooks. Today the labels may have changed, but the thoughts still remain.

Lillian is a young lady who shines like no other, and has a beautiful inspiring energy about her. She and children like her teach us lessons about acceptance and change. This is one of their gifts. As an integral spoke in the wheel they can turn around societal and stereotypical views that they don’t have anything to offer; are a drain on our country’s resources; or views that they, and their family are unhappy and should be pitied.

Another one of Lillian’s gifts is showing us the benefits of embracing technological innovation, and the shift in the way we communicate. Technology can be life changing and life improving for some amongst us, and should be approached with an open mind. We no longer solely communicate with our mouths and voices as a society. A great majority of us use technology and social networking sites to stay connected, communicate, and conduct business.

On a beautiful summer day in 2009, I visited Lillian at school. Her class was at recess. As I stood chatting with Lillian’s teacher, I was scanning for Lillian among the sea of kids. My eyes landed on a petite young lady pulling a cart behind her. Yes, that was my Lillian, pulling a cart loaded with her DynaVox unit. Tears welled in my eyes, a lump formed in my throat, and my knees got weak. I thought, “There has to be something better.” I made a firm commitment to myself and to Lillian in that moment that I would find something more mobile and compact for her to use to communicate, something that did not make her stand out. I began monitoring the use of keywords and phrases like speech impaired, nonverbal, and AAC on Twitter and Google Alerts. Almost immediately I came across Twitter mentions of an application for the iPhone and iPod touch by the name of Proloquo2Go that had just been released four months earlier. Proloquo2Go is a communication solution with natural sounding text-to-speech voices for people who have difficulty speaking. I researched a bit more, went to the Apple store, and bought Lillian an iPhone. With Proloquo2Go installed, I gave it to her that day when I picked her up at the bus stop. A meeting with the school followed that same week to inform them she would no longer be using the DynaVox and would be using the iPhone instead. Lillian figured out the iPhone and Proloquo2Go within a week. This was technological innovation at its absolute best! Turning Views Foundation’s Gift-a-Voice Project was birthed from this experience (Learn more at www.TurningViewsFoundation.org).

Today, our communication methods have shifted and are literally evolving to include more of our society than ever before. When a mother of a speech impaired, or nonverbal child “hears” “I Love You” or “Mom” for the first time, it touches their heart like nothing else can. According to the National Institute on Deafness and Other Communication Disorders, 7.5 million people in the United States have trouble using their voices for one reason or another. This includes people who are nonverbal, speech impaired, autistic, hearing impaired or who have dysarthria, apraxia, or aphasia due to chromosome abnormalities, Multiple Sclerosis, stroke, Cerebral Palsy, brain injury and many other conditions.

To fully grasp the impact technology has in your daily life, take note throughout your day just how often you communicate using technology via email, text or social networking sites. If you still conduct many of your conversations over the phone, or face to face, stop and think, “How would I be having this conversation if I did not have the use of my voice, or if I could not articulate what I’m trying to say?” There are options now that weren’t available years ago. One of Lillian’s gifts is using my voice to show how technological innovation is benefiting society.

Our children with special needs are not broken, and do not need to be fixed. When we use negative words like “problems”, “cannot”, and “deficits” to define disability it is difficult to see the positive gift our child possesses. Focusing on what our child cannot do, is a barrier to seeing their gifts. When we accept that it is their “normal” to have special needs; our eyes can be opened to see our child’s gift that probably has been right there all the time.

Some will continue to only view those differently-abled as having something wrong with them and being limited. These same people won’t take the time, nor would have the patience to connect with those who are differently-abled. Unfortunately, they miss the experience of being on the receiving end of a unique heartfelt gift, a gift that only those with patience and peace can receive.

Until we have moved past the guilt stage and are well on our way to acceptance of ourselves and our children, it will be impossible to see the gift in situations, and the gift of our children, with and without special needs. No matter what, guilt gives power to the wrong thoughts and is a barrier to acceptance. Even in our most painful lessons there are hidden gifts whether we see them as such or not. The process requires patience with ourselves and not forcing the process to get over the guilt and “why” questions quickly. Guilt is a stage we simply must make our way through. Rest assured, when you arrive on the other side of guilt, you will realize the gift you hold, the gift your child holds and the gifts revealed through situations.

Tip for the Journey:

Identify and embrace your child’s strengths, needs, interests, fears and motivators. Focus on your child’s strengths and be open to providing opportunities for them to express themselves and their thoughts. Remember; don’t discount qualities that you or others find odd, irritating, or annoying. That just may be the wrapping paper around the gift they hold. Provide opportunities for them to paint, play an instrument, make crafts, dance, practice yoga, swim, play sports, write and use their hands to create.

Heartfuly Inspired,
Camilla
See It. Share It. BE IT … Spread Love Everywhere You Go!

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Z is for Zigzag

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(Excerpt from my book, “D iz for Different – One Woman’s Journey to Acceptance”)

Conventional wisdom says “do it this way, this is the way it’s always been done.” I am the type of person who questions conventional wisdom. I pause to think about whether the way it’s always been done is really the right way for me and my family.

Conventional wisdom says that the best path for Lillian is to attend traditional public school to benefit from what she’s entitled to according to federal laws and what’s established in her IEP. Well, that worked for us through fourth grade, but it doesn’t work now. You see, I simply believe with all my being that this little lady will not follow any conventional route in her life, or in her career. I believe she will be self-employed, and I don’t believe she will reach her full potential staying in a traditional public school. Of course, I will accept whatever career path she chooses, but for now, I choose us to zag instead of zig.

I’m not saying that we should always zag when others zig. But, that we pay attention when something inside us is saying, “not so fast there, find a different way,” or “don’t keep doing that.” We may hear these messages, but dismiss them due to doubt, fear, or laziness. As these messages bounce around in our mind, we find that we have invited another person’s voice telling us we are crazy for thinking that way.

Happy and successful people didn’t get where they are today by making the same choices as the masses. If you take time to study them, you will find there’s something different in the way they think, their attitude, and how they make choices.

One of my kids made a statement once that we are poor. I explained that I don’t agree and here’s why. We may be broke at the moment, but we are not poor. I consider us to be rich because of our relationships with one another, our adventures, and the joy we experience. I believe there’s a fundamental difference between being poor and being broke. Poor vs. rich is all in how you look at it. Being broke is temporarily having no money. Being rich depends on how our attitude and thoughts perceive our reality. How do we measure “rich”?

It is most important to me that I try to not take myself so darn seriously. I fully understand that we have some serious situations to deal with, especially as parents of children with special needs. I’m not advocating that we ignore serious medical conditions. I’m only suggesting that we become aware of our attitudes and thoughts concerning serious matters. Do your best not to dwell in the past, or get stuck in the “why” questions. Accept the present moment for what it is. Really and truly listen to your gut. Listen even if you don’t understand why it’s pushing you in a certain direction.

The bold overriding theme of this entire book is the ability to accept ourselves, listen to our intuition, and live in the present moment. That’s why it is repeated throughout this book. I know I need to be continually reminded of this. I forget. Acceptance, courage, flexibility, and our view of life all comes back to how we think. Our emotions are an expression of our thoughts. Take it slow and have patience with yourself.

Tip for the Journey:

Awake each morning and realize with awe that you have been given a very special, unique gift. You have been given a precious gift of another full twenty four hours to make your own. Twenty-four hours to do with as you choose, to experience joy and happiness, and to share with those around you. I truly believe the more we share joy and happiness, the more it will spread. Every day you get another twenty four hours to work toward your dreams and goals, and another day to enjoy the heck out of while you’re on your journey. I like to refer to this as a Sunrise Gift and no two Sunrise Gifts are the same. You choose the nature of the gift and what you will do with it. Make the most of your Sunrise Gifts.

Heartfuly Inspired,
Camilla
See It. Share It. BE IT … Spread Love Everywhere You Go!

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F is for Flexibility

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(Excerpt from my book, “D iz for Different – One Woman’s Journey to Acceptance” – published 2012)

Flexibility, fun and faith . . . that’s a trio I definitely want in my life!

There are times in our lives when fun does not fit in with what’s going on! It’s not possible to always have fun, or find the joy in every situation. However, it is possible to be at peace with the experiences life deals us. To be at peace is to be in a state of acceptance, and be present and attentive in the here and now. Once we have achieved the place of acceptance it is easier to see the joy, humor, and fun in the everyday happenings of life, and ultimately have faith.

With each passing day acceptance becomes easier. I am more attentive and present when Thomas and Lillian are talking to me. I am really listening to what they are saying. Sometimes, I must admit, it is just plain funny! One morning Thomas, Lillian and I had a conversation that each of them are actually aliens from Planet Mercury. They told me they are just here visiting and will have to go back home soon. We had a thirty minute conversation about their home planet. I told them I would miss them so very much when they go back home. They said they would miss me too. After breakfast they began packing for their return voyage back to Mercury. Not your typical Saturday morning breakfast, but we had tons of fun using our imaginations. I choose to stimulate their imaginations instead of discounting what they say. Being able to call upon their imagination is a skill I want them never to lose.

As often as possible, I attempt to create an adventure out of as many minutes, hours and days that I can. It may sound like a lot of work, but really, it doesn’t have to be. Adventure is what one makes it. If we remind ourselves to be flexible and think simplistically, it isn’t hard at all to create adventures. I find great fun in turning a simple task or event (something we are already doing), into an adventure.

Something as simple as going to the library can be made into an adventure by having a scavenger hunt for certain types of books. One day, I had Thomas and Lillian make a list of about five places or things they wanted to see, or find. We had a great time driving around all day to parks and stores finding the items on their lists. We didn’t buy anything, but I marked their success by taking a photo of them in front of the place, or with the item they found (you can see some in the photo gallery).

Being flexible decreases stress, and allows us opportunities to be creative. Flexibility also serves us in releasing our attachment to rigid expectations. When we choose to be flexible rather than rigid, it is much easier to accept change when situations do not turn out as we may have planned.

Flexibility is a characteristic that serves me well as a parent, definitely as a mom to a child with special needs, and in life in general. I am sorry to say that the old Camilla was not a very flexible person. Things had to be done my way, or someone was going to pay! I cringe when I think about how rigid, and inflexible I used to be.

The awakened Camilla has learned the wonderful quality of being flexible. To some, it may seem like indifference when I shrug my shoulders, or turn the other cheek, but through practice, I have learned to be okay with whatever happens.

F is for Fear

I could not let this chapter be complete without mentioning fear. Fear is something that every parent experiences. In fact, everyone has fears. Parents of children with special needs have an entirely different set of fears, and then some, compared to parents of kids who develop typically. Fear is one of the stages we move through when we first learn of our child’s diagnosis. These fears can get the better of us if we are not managing our thoughts in the present moment. For instance, we may take one little comment from a doctor, nurse, parent, or friend, and let our mind run away with it. We fabricate in our mind what the future would be like; what about the next time …next week…next year…from now to when our time here is over? I am not saying we shouldn’t make plans for our family’s future. Make those plans, get everything lined-up, and set in the best way for your child with special needs and their siblings. Just remember not to always play out future events (school, friends, sports, marriage etc.) in your mind.

Learning to have faith in myself, and the decisions I make has absolutely helped me along this journey. Even though I still experience moments, days, and even weeks, when my faith in myself gets weak, I never ever fully lose sight of it. Having a rock solid faith in ourselves, is the foundation for the journey we are traveling.

Tip for the Journey:

Learning to be flexible comes with patience and practice. Choose one situation a week to be flexible about. Then take it to one situation per day. Each morning when you wake up, say to yourself with love and joy, “I choose to be flexible today.”

Developing the habit of having consistent, strong faith in yourself and your choices will only come with time and practice. To battle being your own worst critic, put sticky notes on your mirror, in your purse, in your car, and wherever else you need them, with reminders that you are amazing, you are perfect the way you are, to have faith in yourself, trust your path and trust your intuition. Choose whatever phrases or quotes are meaningful to you and put those on the sticky notes also. It can be hard to keep faith in ourselves; but the more we practice being kind, the quicker we will pull ourselves out of those times when we lose the faith.

Heartfuly Inspired,
Camilla
See It. Share It. BE IT … Spread Love Everywhere You Go!

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