Throwback Post: One Blood Test, One Phone Call, One Moment in Time

**THROWBACK POST**


(Team TLC – July 2014)

Written in 2014 and 2015

November 2020 Note – This writing does not flow. It appears I came back to this over several months in 2014 and 2015 adding my thoughts. I’ve left it in its original, raw state except for a bit of rearranging so writings about the same topic are grouped together.

One blood test, one phone call, one moment in time; drastically changed everything. I know more about genetics, chromosomes, DNA, motor skills, verbal skills, and now emotional and behavioral issues than I ever thought I would need or want to know. The main way that 18p- manifested for Lillian earlier in life was that she had delays with motor skills, articulation issues, and GI concerns. Now at 13 years old Lillian is very hard to understand when she speaks. She simply cannot articulate in the way most of us can. The shape of her mouth and the inability of the tongue, lips, and mouth to coordinate properly are what cause this. She is a smart young lady and has all the words and thoughts she wants to say in her mind, but simply can’t get them all out in an understandable way.

She has always had anxiety and fears concerning certain issues, had problems with unexpected changes, and an inflexibility with schedules. These issues had been mostly manageable. About the time puberty entered Lillian’s life she had an IEP for transitioning from elementary to middle school. She also came down with a bad cold turned into a sinus infection. All of these proved too much for her to handle and she imploded. So began a turn in this adventure that began so long ago.

I now find myself learning about emotional and behavioral issues and Lillian’s inability to cope with situations that cause her to panic or worry.

In December 2014, Lillian caught a pretty bad cold. At the same time we had just attended her transition IEP for moving to middle school next year. Internally, Lillian’s teenage hormones were making their appearance as she had just turned 13 in September. Illnesses take a harder toll on Lillian, even if it is just a cold. She missed some days of school, went back for one day and then seemed to get sick all over again. Her cold had turned into a sinus infection.

After the sinus infection cleared, Lillian refused to go back to school. This wasn’t just a case of Lillian being stubborn and defiant. I could sense a deep fear and high level of anxiety. I tried to help Lillian through this time by addressing and solving whatever it was that was causing the fear and anxiety. During this same time, Lillian’s ability to cope and remain calm seemed to be dissolving. Whenever her schedule was changed or didn’t work out or things didn’t go as she thought they should, she would go straight into a horrific meltdown with an explosion of screaming, hitting, pinching, and scratching. It was lightening fast with hardly any space between something going wrong (in her mind) and the explosion.

At this point, I decided that I needed professional help. In April 2015, I finally located an acceptable psychotherapist that took Lillian’s insurance to work with Lillian and I on mindfulness techniques, dialectical behavior therapy, and cognitive behavioral therapy. I know that there are medications to help with these difficulties but my inner compass is very strong in that I am supposed to try the non-medicated route first. I absolutely do NOT judge other parents for the routes they take on this complicated and complex journey. The part of me that would have judged no longer exists, thanks to Lillian and Thomas.

It was (and is) my intention to try to help Lillian be in tune with her body’s feelings and emotions so that she can recognize when anger or sadness are present. And to then have her use mindfulness techniques and emotional connection to connect with negative (and positive) emotions. First and foremost to get her past the point where she feels out of control leading to screaming and lashing out at others (myself and her brother, Thomas).

This is furthering my own mindfulness learning as I must be mindful when Lillian disconnects. I must also be patient, flexible, and learn how to not take words or actions personally. There are absolutely days and moments my thoughts go straight to, “It’s time to look into medication.” However, once the moment has passed so has the thought. As long as we are making progress we’ll continue this path. Although Lillian has not returned to school yet, we are making slow progress. I use the term we as this is definitely a team effort by all three of us.

She had one extremely huge meltdown turned into explosion this past July. We made a quick stop at the grocery store to get a few items. I was a bit overwhelmed as the store was super crowded. I was trying not to forget what we needed and to carry on small talk with Lillian. We took a few minutes to smell the essential oil perfumes and wonderful handmade soaps. Then we chose a gluten free cookie for all three of us. After this, I decided to return an item since we were close to the customer service counter. The wonderfully kind cashier offered to ring my other items since I only had a few. I accepted. Lillian had caught up with me at this point and once I was finished paying, I could sense her energy shift.

Apparently, there was miscommunication between the two of us about Lillian looking at more gluten free desserts. This quickly led to a volcanic like explosion for Lillian with screaming and lashing out at me. Fortunately, I was close to the exit doors, so I made my way out and headed to the car with Lillian screaming and yelling 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 or other techniques we’ve been learning.

I decided to start making our way home even though she had not calmed down. Perhaps not the best choice in that moment. She was scratching, pinching, and pulling my hair from behind. As soon as it was possible, I pulled over, turned to Lillian and screamed some ridiculously outrageous comments, and decided I must get out of the car. We needed space between us as I was in a great deal of pain from the scratches and she was a big hot mess. Once out of the car, I closed my eyes, took a few deep breaths, and asked to see the situation differently. I opened my eyes and shining up at me from the rock and dirt filled ground was a beautiful red jewel heart. I knew that was in answer to asking to see it differently and a reminder to always respond with love.

At this point, Lillian was ready to do a calming technique and I requested that she do it on her own. She got out of the car and chose to pick up a couple of rocks and study them. After a few minutes we got back into the car and drove home. We’ve not had anything of that magnitude happen since then and I am hopeful this was simply “one step backward” before more steps forward. When this happens for Lillian, one of us has to be fully present and mindful or things can escalate.

When I pulled over there was anything BUT grace flowing from my mouth. After being scratched continuously, and having my hair pulled from behind from the time we left the parking lot; I lost it. So glad I listened to my intuition to pull over and get out. It was what we both needed. I know when this happens it is not the true Lillian and we are making great progress with helping her to notice, feel, and release emotions (centered around mindfulness).

My feelings are that we are all doing the best we can with where we are in our lives; child and adult. I judge no other parent for how they choose to handle this. That has not always been the case. Where there is Love, there is no judgment. Personally, I want to help Lillian learn NOW how to process emotions so that she has a happy and peaceful life as an adult. So that she knows how to handle things when they don’t go as expected and don’t go her way.

It’s so interesting that for at least 4 years I’ve been talking about connecting with emotions with Thomas and Lillian and Lillian does NOT want to feel sadness. Goes straight from sad, to anger, to deflecting the anger in a split second. We are teaching her how to “listen” to her body for the clues that let her know she’s about to get angry.

I have much to learn from Lillian and she has much to learn from me. I know because she verbalizes what she’s saying to herself. It boils down to this: She’s not in control and she cannot be successful. We are giving her new phrases to replace those: I am in control, I can let this dissolve, I am successful. Along with teaching mindfulness activities and I take both of them through a mindfulness exercise at least 4 times a week. Definitely not an easy path, yet, for me, this is the path of Love.

Two more positive moments from the 2015 Chromosome 18 conference … one night she was having anxiety and worries about going out to eat with her friends (without me as I was having dinner with the moms … ladies night). Worried there would be stairs, worried about going to the bathroom, worried about what to eat, worried about it being too crowded. She was expanding, to use her word. I explained to her that she was expanding and that we could not talk about it and come to a solution in her current state (it was bed time too). She agreed to wait until tomorrow to discuss it. The next day when I brought it up, she said, “There’s nothing to talk about it.”

This happened with one other issue too. And I have used this several times now as it seems she wants to discuss things as we are getting ready for bed. I have been successful at getting her to wait until the next day.

She had a huge meltdown in a restaurant on our last night there. First, it took us half a day to even get out of the room to go to the local library. She slept late and took forever doing her “schedule”. This seems to be interfering more and more with us even getting out of the house. Anyway, after we ordered she began to “expand” about not having gotten to everything she wanted to do while there, being VERY sad and angry about the situation.

She was crying and getting louder. I tried to have her wait until we were done eating to discuss, but she was not in a place to agree. She screamed and pinched my arm. I could not get her to do a distraction exercise so had to resort to helping her resolve the issue so we didn’t have to leave the restaurant with me dragging her out. She finally calmed down. Thomas was having great anxiety during this as he saw all the people staring at us.

Lillian has always had anxiety and worries related to certain situations, venues, and schedules. Some of these are stairs, escalators, people with stern voices, automatic flush toilets and hand dryers, small enclosed areas and big open areas. In addition to a fear of all animals and stuffed animals. Some of this stems from difficulties with Lillian’s proprioceptive system and some from sensory processing issues.

I am still on this journey of attempting to learn Lillian’s nature. I’ve come a long way. What I do know, what my internal compass is rock solid about, is that Lillian’s contributions to humanity will not come forth in the typical way of going to school, graduating, going to college, and getting a job (or some adapted version of this).

And something else I know is that it’s okay if there’s a shift within her and she does go the typical route. I feel she is an artist and her contributions are manifesting and will continue to manifest in this way. As I write this, I realize, she’s got something figured out that many of us strive to figure out our whole lives. How to express oneself. And how to express oneself in a way that benefits humanity and spreads loving-kindness.

Lillian loves and enjoys life. In fact, she is confused when, at her prompting, I or those around her don’t stop what they are doing and BE in the present moment, enjoying life and being happy.

November 2020 Note: This writing turned into a 4,000 word article contributed to a multidisciplinary journal for the Australian Institute On Intellectual Disability, published in 2015. To read the polished and final article, go here …

My Journey With Intellectual Disability and Relationships – A Short Memoir

November 2020 Update – Six years later … We have come such a long way from this time. Thankfully, the severity and occurrences of meltdowns has drastically decreased. Lillian began using botanical oil two or three years ago. That and maturity were huge factors in helping. 

I also wrote a letter to her meltdowns in 2016 that was published by Elephant Journal. If you’re interested in reading that, go here …

Dear Meltdown: Meet My Friend Mindfulness

Blessings,
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 19 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 15 year old son, Thomas Darnell‘s book, Biggest Little Photographer is published. Be inspired! Learn more and order here.

Throwback Post: Being a Sibling to One With Special Needs

(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.

Blessings,
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.

Photography and Poetry: What if it Were You

The Vintage Lake with Empty Bench February 2016

He’s frustrated
He’s not sure how to handle it.

He lashes out
He says unkind words
He insults
He teases.

He’s not sure how to handle it
He’s frustrated.

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
the inflexibility.
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
feeling frustrated
and angry.

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 …

The mom simply asks him to ponder.

And they shall ponder.

-©2017, Camilla Downs

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.

Blessings,
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.

Latest Articles:
[catlist name=blog]

10 Most Popular Posts for 2016

thomas-and-camilla-at-odabe-round-dance-9-25-16-5

Top 10 Blog Posts With the Most Views (Culled only from 2016 blog posts)

  1. Dear Meltdown, Meet My Friend Mindfulness
  2. Biggest Little Photographer Arrives – We Did It
  3. Living in a Tiny Home Adventures – Four Months
  4. Photo a Day for 365 Days – Thomas’ One Year Anniversary
  5. The Power and Magic of Connected Parenting
  6. 2016 Chromosome 18 Conference – San Antonio
  7. A Rapturous Dance With Life
  8. The Biggest Little Photographer by Thomas Darnell
  9. The Tao of Letting GoLetting Go Burning Ceremony, and There is More Than One Way (These 3 blog posts had the same amount of views)
  10. A State of Pure Awareness

**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 ….

love-cards-in-a-basket-october-2016

Top 10 Blog Posts With the Most Views for 2016 (Culled from all blog posts)

  1. Olive Oil as Facial Cleanser and Moisturizer – Oil Cleansing Method
  2. Recipe: No Powdered Sugar Cream Cheese Frosting
  3. Oil Cleansing Method – Update
  4. 17 Easy and Free Ideas on How to Rejuvenate Yourself
  5. Taste the Wind
  6. Dear Meltdown: Meet My Friend Mindfulness
  7. Recipe: Almond Flour Cookies
  8. Living in a Tiny Home Adventures
  9. Biggest Little Photographer Arrives – We Did It
  10. Recipe: Chia Seed Pudding

Top 10 Blog Posts of All Time With the Most Views

  1. Olive Oil as Facial Cleanser and Moisturizer – Oil Cleansing Method
  2. Recipe: Almond Flour Cookies
  3. Recipe: No Powdered Sugar Cream Cheese Frosting
  4. Help Team TLC With A Christmas Miracle
  5. 17 Easy and Free Ideas on How to Rejuvenate Yourself
  6. Oil Cleansing Method – Update
  7. I Wish I Wasn’t an 18p- Girl: Moment of Defeat – Take Two
  8. A Moment of Defeat
  9. Lillian and Being Different Presentation
  10. Creativity and Resourcefulness

Here’s to a 2017 in which we all go within to BE the change we wish to see in the world. BE Love, BE Peace, BE Compassion … We must BE this within in order to experience it without.

hearts-rock-sparks-2015

Blessings,

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

Wonderfully exciting news! My 10 year old son, Thomas Darnell‘s book, Biggest Little Photographer has arrived. Be inspired! Learn more and order here.

Latest Articles:
[catlist name=blog]

Dear Meltdown: Meet My Friend Mindfulness

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.

Letter written to the meltdowns that my 14 year old special needs daughter experiences:

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.

Love,
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 ….

love-cards-in-a-basket-october-2016

Situations that can cause Lillian to meltdown:

  • Events not unfolding as anticipated
  • Schedules being adjusted
  • Communication difficulties
  • Being reprimanded
  • Teasing from her sibling

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:

  • Have me speak to your group about mindfulness and emotional connection
  • View the article on Elephant Journal’s website
  • Leave a comment on their website by scrolling to the bottom of the article
  • Share the article using the share buttons near the bottom of the article (feel free to tag me if you share on facebook)
  • Blog about the article on your own blog (like Tania Marie did on her blog)
  • Leave a comment here
  • Share this article using the share buttons
  • email the article to others
  • Share with parenting groups, including special needs parenting groups

Blessings,

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

Did you know I wrote a book? It’s titled “D iz for Different – One Woman’s Journey to Acceptance” and you can read more about it here.

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Your Intuition Knows What To Write

“Your intuition knows what to write, so get out of the way.” – Ray Bradbury

I was given the wonderful opportunity to guest post on 2 Dream Productions’ blog about why I write and what led to the writing of my first book, “D iz for Different”.

Here’s an excerpt:

How Purging the Garage Led to Writing a Book

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. 

Blessings,

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

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F is for Flexibility

(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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My Journey With Intellectual Disability and Relationships – A Short Memoir

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.”

Click here to read the digital version of the journal. The access code is: K9HqOa

My article is on page 30. However, the entire journal is excellent! You’ll need a chunk of time to read it as it’s short story length at around 4,000 words.

I encourage anyone who is moved to subscribe to this wonderful publication to do so! Enjoy and please feel free to share and/or forward to anyone you think would benefit! With oceans of love … xoxo

PDF version: Interaction Volume 28 Issue 4

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

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Emotions: Embrace the Emptiness

View During the Writing Exercise

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.

She is a single mom, raising two kids. One creative, artistic, writer child who is a 13 year old girl with a genetic abnormality and a wise old soul masquerading as a 9 year old boy who has a difficult time BEing still and whose intellectual abilities are at the level of a 13 or 14 year old. On this day of respite the kids were to have a sleepover with their grandparents.

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 ….

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

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Pictures from the workshop:

 

Beautifully Written: D iz for Different Amazon Review

★★★★ 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

If you would like to write an Amazon review of D iz for Different go here (amazon affiliate link). It’s not necessary to have purchased the book through Amazon. If you have an Amazon account, you can write a review.