(I recently changed the hosting company for this website, along with all other websites I manage. In the aftermath, my draft posts got deleted. Oh no! Fortunately, they were in the back up and could be reinstalled. However, the original draft dates were deleted. I’m taking that as a sign that it’s time to do cleanup and housekeeping.)
(Thomas and Lillian – 2010 – Geiger Way Lookout)
**THROWBACK TO 2014**
After a huge Lillian meltdown this morning which caused him to be a wee bit late for school.
I am trying to help him notice when it’s not a good idea to push Lillian. He does try so hard, but just wants to not have to try sometimes. Lillian is making huge progress, yet, we still have those moments. Thomas’ teacher shares often with me how she enjoys his presence in the classroom as he’s so empathetic and compassionate.
I have recently pulled back from intervening when they decide to be unkind with one another. I’ve explained that I have taught them methods to use and I model those methods. It is up to them whether they use them or not.
This morning it escalated, I remained calm and not involved. It escalated and escalated and escalated. There was screaming and door slamming. I remained calm and not involved. I got scratched and pinched, I remained calm. I kept emphasizing that I’d be happy to help her get calm and to let me know when she was ready. And. Finally, Lillian asked for help in calming down. I walked her through a meditative breathing exercise and we moved on …. I don’t always remain calm. I did this morning and it makes such a huge, huge, huge difference when I do. Mindfulness is an amazing way to live …
Yes, this. I am blessed and grateful that we are a team. I am having the time of my life on this journey with them. The joy, suffering, happiness, peace, love, and all … xoxo
**June 2020 Update** – Six years later. I’d love to say that Thomas and Lillian get along fabulously now. They don’t. Lillian is 18 and Thomas is 14.
Thomas has much anger and unsettled feelings about being Lillian’s sibling. The years of horrific meltdowns. I mean we just had one at 1:30am this morning. I’ve told him as often as I could remember that it was okay to be angry, okay to have whatever feelings he has about the situation.
Much of my time being spent with Lillian. Not having a typical sibling, with a typical sibling relationship, doing typical activities as a family. These all became too much at some point, with him internalizing much. This is something we will be addressing at some point this year.
Lillian has much jealousy towards Thomas, for all the things he can do that she can’t do. Jealous of my time spent with him, jealous even when he and I speak to one another. Jealous may not be the word to use here, it’s quite possibly stems from something else. She may have internalized some trauma from her childhood. All issues to be addressed when she is ready to do so.
I do not share to receive comfort or sympathy. I share as that’s what I know I am to do. I share so other siblings and parents know they are not alone. As I know that in the past I have felt guilt and shame when observing a sibling with their special needs sibling getting along fabulously, with compassion and love. Wondering what I had done wrong. I now know I have done nothing wrong. People are just different.
Camilla See It. Share It. BE IT … Spread Love Everywhere You Go!
“Words of Alchemy”, published December 2019, is a free-verse poetry memoir covering the last 6 years of my life. The poetry of nature, the poetry of healing, the poetry of appreciation, the poetry of love, in one beautiful book.
Amazing news! My 18 year old daughter, Lillian Darnell’s debut book, “Where Would You Fly and Other Magical Stories” was published January 2018. Learn more and order here.
Wonderfully exciting news! My 14 year old son, Thomas Darnell‘s book, Biggest Little Photographer is published. Be inspired! Learn more and order here.
He lashes out
He says unkind words
He’s not sure how to handle it
The mom tells the son
that it is okay to
have these feelings.
Feeling angry, sad,
frustrated is okay.
These feelings are valid
simply because he has them.
He does not understand
why the sister behaves
the way she does.
Does not understand
Does not understand
the fears she harbors.
Does not understand
the massive and, at times,
violent melt downs.
Does not understand
the anxiety that
can lead to a melt down.
He becomes critical
and desires something
be done about the situation.
He feels the mom blames
the missing chromosomes
for the sisters behavior.
He feels that the mom blames
him for being angry and upset.
The mom lets him know
that it is okay for
him to be feeling this way
He is not wrong for
The mom only asks him
to think about this …
What if you were her?
What if …
You could not speak clearly so that others understood you?
You were in near constant pain almost every single day?
You had balance issues and fell constantly?
You were much, much shorter than your peers?
You were much, much shorter than your YOUNGER sibling?
Your body did not cooperate with accomplishing tasks?
You could not easily use a spoon or butter knife?
You could not drink from a glass without a straw?
You could not easily brush or floss your teeth?
You were the one without lip closure?
You were the one with hand tremors?
You were the one with fine motor skill difficulties?
You were riddled with anxiety and irrational fears?
You were the one with an entire section of your 18th chromosome missing?
What if this were you
and not the other?
The mom was not telling him
that these difficulties
are excuses for being
unkind to others.
Simply to ponder
what one’s life would
be like if all that is
easy and simple vanished …
Ponder if it all became
difficult and a struggle …
Simply ponder …
The mom let him know he
could continue to feel
and believe what he chooses.
The mom will not force
her opinions of
the situation upon him.
The mom simply asks him to ponder.
And the mom will ponder
what it would be like
if she were the sibling
to the one …
Empathy has within it the seed to change the world. The more of us that plant and cultivate this seed, the more the world will shift towards peace. -Camilla Downs
I posted this on facebook first and the following are my responses to friends comments:
I can literally feel my heart breaking when Thomas and Lillian are arguing and being unkind to one another and that pours through into these writings.
I can be quite harsh with myself about my parenting skills; thinking I screw it up more than I have it heart aligned.
These are times that journal writing proves so helpful as I remind myself that I’m doing the best I can with where I’m at and give myself a good reminder to love myself. No matter what. Alongside that is when dear friends give me a good reminding too …
It was not my intent to cause anyone to feel less or unvalidated. We are all traveling a unique path; yet, with many, many similarities.
When I am in an unawakened state, I harbor deep worry that Thomas and Lillian will not choose to move towards a relationship of harmony and loving kindness. It breaks my heart to feel the current energies of dislike they have for one another.
Empathy has within it the seed to change the world. The more of us that plant and cultivate this seed, the more the world will shift towards peace.
Camilla See It. Share It. BE IT … Spread Love Everywhere You Go!
Amazing news! My 16 year old daughter, Lillian Darnell’s debut book, “Where Would You Fly and Other Magical Stories” is published. Learn more and order here.
Wonderfully exciting news! My 12 year old son, Thomas Darnell‘s book, Biggest Little Photographer is published. Be inspired! Learn more and order here.
Anger is like a storm rising up from the bottom of your consciousness. When you feel it coming, turn your focus to your breath. ~Thich Nhat Hanh
I recently received the honor of having one of my articles accepted for publication by Elephant Journal. I was inspired a couple of months ago by blog posts which are letters openly written to others. For example, Dear Person at the Grocery Store, Dear Lady in the Bookstore, Dear Stressed Out Mom, and the like.
Upon seeing these I knew I was to write something like this. At that same time, I also knew I wanted to share something meaningful about the meltdowns that Lillian is experiencing. The next thing I knew, I was writing a letter to her meltdown. I was pouring my heart out to that meltdown. This is the result and this is what Elephant Journal published …
Meltdown (per Merriam-Webster) – an accident in which the core of a nuclear reactor melts and releases radiation, a very fast collapse or failure, a very fast loss of emotional self-control. (emphasis mine)
Mindfulness – (per Merriam-Webster) – the quality or state of being mindful, the practice of maintaining a nonjudgmental state of heightened or complete awareness of one’s thoughts, emotions, or experiences on a moment-to-moment basis; also such a state of awareness.
Dear Meltdowns, Welcome and Meet My Friend Mindfulness
Sometimes I’m able to sense when you’re lurking in the shadows. Sometimes I’m not. And you sneak up like a cat stalking its prey.
You penetrate the peace of an otherwise tranquil day like an earthquake suddenly rocking and rolling in the middle of a quiet night’s sleep. You are the complete opposite of fun and joy.
You are loud, aggressive, physically harmful, and verbally malicious. You lack compassion, empathy, and kindness. You take all actions and words personally.
What I want you to know is that I welcome you. Not like I’d welcome my best friend coming over for coffee and chatting. I welcome you like one later appreciates a grumpy relative during the holidays knowing that being around this person can help us to learn more about our own triggers.
You are helping us to know what emotions and situations Lillian has resistance to fully experiencing. You are the red flag that goes up as a warning that THIS is where she feels vulnerable.
So, I welcome you. I meet you with love.
When I am in a peaceful, mindful state, going with the flow of life, I handle you just as easily as a leaf floating in the wind. I choose not to accept your meltdown hook.
When I’m resisting life, choosing grumpiness, and having an off day, I accept the hook you’ve thrown out and jump right in with both feet. These are the times I learn more about myself.
Either way, one thing I know for sure is that you are not the true Lillian. The true Lillian is there, and you are simply acting as a buffer so she doesn’t have to experience the rawness of life. It is my hope that as I meet you with kindness and compassion, you see that it’s okay to move aside.
Lillian can handle the unexpected, the discomfort of not getting her desires, and the “letting go” of learning to be flexible. It’s okay to release your grip.
I will continue to meet you with a calm voice and compassion as often as possible, until the day you realize it’s okay to become dormant, slip into an eternal sleep, and allow a miracle – the miracle of Lillian fully experiencing emotions and going with the flow of life.
Camilla (Mom to Lillian)
Lillian has a rare genetic condition called 18p-. This means that she is missing the short arm of chromosome number 18 and it affects about 1 in 50,000. The main way this manifests for her is that she is speech impaired, and has balance and motor skill issues. Also, for the past year and a half she has struggled with experiencing anxiety and difficult emotions.
**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 ….
In July 2015, Lillian had the worst explosive meltdown we’ve ever experienced. We made a quick stop at the grocery store to get a few items.
As I paid for our items, Lillian caught up with me, and once I was finished, I could sense her energy shift. Apparently, there was a miscommunication between us about looking at more gluten free desserts.
This quickly led to a volcanic explosion for Lillian. Fortunately, I was close to the exit doors, so I made my way out and headed to the car with Lillian melting down behind me. I quickly got into the car and invited Lillian to do the same if she was going with me. She was not open to doing any of the mindfulness techniques we’ve been learning.
I decided to start making our way home even though she had not calmed down – not the best choice in that moment. She was scratching, pinching, and pulling my hair from behind.
I pulled the car over, turned to Lillian and screamed some ridiculously outrageous comments. I quickly realized I must get out of the car. We needed space between us as I was bleeding and in a great deal of pain from the scratches and she was a big hot mess.
Once out, I closed my eyes, took a few deep breaths, and asked to see the situation differently. Upon opening my eyes, I saw, shining up at me from the rock and dirt filled ground, a beautiful red jewel heart. There was my answer, a reminder to always respond with love.
At this point, Lillian was ready to do a calming, mindful technique and I requested that she do it on her own. She got out of the car, chose to pick up a couple of rocks and studied them. After a few minutes we got back into the car and drove home.
We’ve not had anything of that magnitude happen since and I am hopeful this was simply “one step backward” before more steps forward. When this happens, one of us must be fully present and mindful or things can escalate.
Lillian has been seeing a psychotherapist since April 2015. We are working on cognitive behavioral therapy with mindfulness training. Additionally, I work with her on physically feeling the emotions within her body.
She has made great progress. It’s slow going, yet I feel we are closer to the ultimate goal.
The miracle of Lillian truly experiencing negative emotions and the rawness of life without the buffer of a meltdown.
At some time or another it’s possible we’ve all experienced our own version of a meltdown. Mindfulness is a miraculous practice to bring into one’s life. Once we become practitioners of mindfulness, more often than not, we are able to remain calm and peaceful when we or our children experience the rawness of life.
With mindfulness we are able to tune into our body and notice the beginning signs of a meltdown; clenched jaw, increased heart rate, tight shoulders or neck, stomach pain.
At this point we can say or think to ourselves, “There is anger inside of me.” This is the opposite of thinking or saying, “I am angry.” These two statements have completely different meanings and will take one down different paths.
Once we acknowledge there is anger (or any other uncomfortable emotion) within us, we can then put our focus on how this physically feels in the body. Is it tight, rolling, moving from place to place?
Let’s be real here. This is absolutely not fun and can be extremely uncomfortable. Yet, if we stick with this practice, it will become more of a habit and eventually the uncomfortable emotion will release.
If we wish to help our children, special needs or not, in this area, we must first practice this for ourselves and model this to them. Why would they meet a meltdown in this way if they never see us do this?
Examples of mindfulness techniques used with Lillian and her sibling, Thomas:
Focusing attention on a favorite rock, gemstone, or crystal. Concentrating on how it feels, looks, smells, and sounds.
Breathe work. At times with no phrase and at times with different variations of phrases.
Focus on in and out breath.
Breathing in, I am calm. Breathing out, I am peaceful.
I am in control. I can handle this situation.
Guided 5 minute mindful exercises.
Relaxing each area of the body.
Focusing on different areas of the body.
Walks in nature to include focus on flowers, trees, birds, ducks, etc.
Thinking or saying a peace mantra, Om Shanti Om.
Taking turns describing in detail another family member (remembering to use non-judgmental words) and similar family exercises.
These techniques were learned by me during the past 18 years of reading, studying, and practicing the teachings of Thich Nhat Hahn, Louise Hay, Wayne Dyer, Eckhart Tolle, Marianne Williamson, Deepak Chopra, Lao Tzu, Pema Chodron, Raphael Cushnir, and The Dalai Lama.
In between monitoring the debut of the article yesterday, there was a meltdown. Lately they are brought on by disagreements with her sibling .. Thomas. So, as I sat sharing, responding, and getting the word out; my hands were stinging with fresh scratches.
I have faith that with the mindfulness exercises we practice, discussions of recognizing emotions, and time spent in nature; eventually Lillian will succeed in going with the flow and simply letting things go ..
I must share with you that when I received the email from elephant journal Sunday night, I panicked. A wave of anxiety and fear swept over me and I felt as if I was drowning in sadness. Thoughts of what others would think of these words straight from my heart weighed heavy on me.
I went to bed Sunday night connecting with these feelings, focusing on how they physically felt in my body. The feeling had subsided some by the time I got up the next morning. After an hour of meditation and a solo walk in the fresh snow, it had completely lifted and I was free to allow and receive joy. I felt it was important to share this with you.
Would you like to help spread the word? Here are ways you can help:
Call it intuition. Call it my gut. Whatever it’s called, there is something inside of me compelling me to write. Sometimes gently, other times strongly, it nudges me saying, “You’ve just got to share that.” I fought this feeling for a long time, thinking I had nothing meaningful to contribute. At this point in my life, I know that the treasure lying within me, the one I am to share with humanity, is my view of everyday life. I most often share this through writing.
Sometimes I question myself with thoughts of, “What are you doing? Why are you wasting time on this? Who cares what you think? Who cares what happened with you today?” These thoughts can be very discouraging and cause me to doubt myself. However, time and time again, I magically and miraculously receive confirmation that what I’m doing and the path I have chosen is inspiring and helpful to others. These powerful, undeniable moments cause my fears and hesitation to disappear.
My writing journey started …. ” (Go here to read more.)
Head on over and check out 2 Dream Productions if you are an author or aspiring author!
2 Dream Productions, Inc. is a book publicist company that specializes in working with authors and publishers to get more publicity for their books, brands and products.
Camilla See It. Share It. BE IT … Spread Love Everywhere You Go!
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.
Camilla See It. Share It. BE IT … Spread Love Everywhere You Go!
The article I contributed to Interaction, which is a multidisciplinary journal for the Australian Institute On Intellectual Disability, has just been published. Here’s a brief description of what and why I was asked to contribute: “looking at creativity in how we work and interact with people with intellectual disability. The other theme I am interested in exploring is empathy and how this “works” within our relationship building within intellectual disability”
Excerpt from the article:
“One blood test, one phone call, one moment in time, drastically changed the direction of my life forever. I know more about genetics, chromosomes, DNA, motor skills, verbal skills, and now emotional and behavioural issues than I ever thought I would need or want to know. ……. I thought I had life pretty much planned at that point and for a while this brief phone call seemed to have caused my life to break apart like a melting iceberg with pieces scattering here and there. Looking back now, all that was brought into my life, all that occurred, all that began, and all that ended were meant to happen for my own growth and enlightenment. An enlightenment I feel spreads far beyond myself and my family as I believe we are all connected.”
The below is a brief glimpse of a moment in time was inspired by Eckert Tolle’s book, Stillness Speaks(amazon affiliate link) and the author’s participation in an experential outdoor workshop centered on connecting with one self.
The day had finally arrived. Her day of respite; a day to herself to do with as she pleased. She looked forward to these days with the anticipation of a child as her birthday approaches.
On Saturday morning as they said their goodbyes and the van drove out of sight, she felt an emptiness engulf her like a dark stormy cloud darkens the brightest of days. With heavy legs and heart she slowly walked inside feeling lonely and sad.
Why was this? A day to herself was supposed to be a day to rejoice, enjoy freedom from responsibilities, and take pleasure in time alone. Could these feelings be arising because she is purging and packing? During this time of “purge and pack” she is re-discovering treasures of cards, drawings, and creations from her beloved children. And in the process she is reminded of the meaningful lessons and simple adventures she has enjoyed with them.
Perhaps she is mourning the death of each of those experiences and feeling the emptiness that envelops one when any life experience comes to an end. Perhaps she is also mourning the end of another chapter with her kids as they pack and prepare to move.
In moments of reflection and little messages received throughout the day, she realized that she had never let herself grieve over the cooling of friendships a couple of years ago. She had been reminded of those friendships the day before and the reminder scratched a wound that had never healed. Perhaps this was the exact moment to grieve for those friendships and that’s what she let herself do. For her, the lesson is to be with and accept the emptiness that feels so heavy.
For her, the way through the darkness is to feel it; really feel what it feels like in the body and breath it into her heart so that the darkness can be transformed into light, spaciousness, gratitude and joy for the experience having happened in the first place.
Now she understands. When feelings like this arise, she is to BE still, BE quiet, and experience it so that she can gift herself deep peace for she knows her true self is peace and love. Instead of resisting the feeling, she now chooses to welcome that dark stormy cloud for she knows that within the core of the stormy cloud is pure love and beauty.
BE still, BE quiet … and Let GO to LOVE … xoxo
Author’s Note: I was inspired to share this from a third person point of view. I don’t think I’ve ever done that before, so hope you like it.
I decided to spend this day of respite at home watching movies as it would be a while before I would have “home” all to myself. I watched Miss Potter, Mrs. Palfrey at the Claremont, and Magic of Belle Isle(amazon affiliate links) and ate hot buttered popcorn with raspberry lime sparkling water. It was heavenly!
During the triple feature a theme kept repeating of sharing information with others, writing, grieving, and friendship. The next morning, I still had the lonely, empty feeling. I picked up “Stillness Speaks” and said a little prayer that I turn to the exact page I needed at this moment. I opened to page 107; which states, “If you can learn to accept and even welcome the endings in your life, you may find that the feeling of emptiness that initially felt uncomfortable turns into a sense of inner spaciousness that is deeply peaceful.”
After reading the above passage, I realized that all 3 movies I had watched were about authors. Then on Sunday I attended a ConneXion workshop at which we did a writing exercise.
I began with these words – “Let go. Know that you don’t need to know the how before beginning. When self-confidence is lacking or you give in to fear, the consequences will be un-lovely. It is time to write more, share more, reveal more, reveal the real you, it matters not if what you write is fiction or non-fiction. And then I wrote the above.
I sat in a shaded area with a view of the mountain, closed my eyes, centered in my heart, and asked what to write ….
★★★★ Amazing book! Insightful, humorous, kind, open-hearted, and worth reading more than once! As a parent of a special needs child, this book gave me some alternative methods in detailing with my child on a daily basis, as well as encouraged me to add more laughter into my life. I know we all need that:-) I would highly recommend this book! –Maria Kendzierski, January 26, 2013
★★★★★ Get ready to change your mind! D iz for Different not only addresses how to accept the things you cannot change, but how to become aware of and embrace the joy and beauty every day and in everyone. Oh…if you can’t find it…Camilla will show you how to create it!
Camilla continues to take each day as it comes and make the most of it and everyone she meets. Read her journey and tips…her life was not always this way. Everyone can benefit. I recommend this book highly. – Diana Michelotti, May 25, 2013