comfort

All posts tagged comfort

Comfort – Dark Matter and the Light of Stars

Published October 5, 2017 by Jen Rosado from MyAlternateUniv

Albert Einstein theorized that the dark, empty space of the universe is not “nothing”, that empty space may, in fact, possess its own energy. Scientists have called the “something” of empty space “dark matter” and called its energy “dark energy”. And although they still question and explore the nature of space as it relates to the expansion of the universe since the Big Bang, they’ve used observations and calculations to arrive at an approximate and theoretical model of composition of the universe:  68% dark energy, 27% dark matter, and 5% normal visible matter (stars, planets, us, and everything we can see).

This fits with what I see in my skies at night. The skies I see are mostly dark space flecked with occasional stars and planets. The stars are brilliant and beautiful, yes, but separated by oh, so much darkness, with only a small amount of what one might consider the light of “normal matter”.

When my son was born, I dreamed what our life would be like, what his future would hold.

I never thought my husband and I would be taking a PMT class to learn the proper ways to restrain my son so he won’t hurt himself or others during a meltdown.

I never thought we’d be shopping on-line for a helmet to protect his head from self-injurious behaviors.

I never thought I’d wear long sleeves no matter the weather to cover scratches, bruises, and bite marks.

I never thought we’d talk in hushed voices over dinner about the possibility of a residential home if he got too big for us to handle.

Our life has drifted so far from what would be considered “normal matter” that for months I’ve been too distracted by dark matter, too overwhelmed with dark energy, too consumed by the blackness of an endless void of fear and anger and guilt, of helplessness and hopelessness, to bother to look for the light of stars.

“I can’t believe this is my life,” I find myself saying. “I can’t believe this is our life.”

I can’t believe this is his life.

Yet my son, the one who is suffering the most – from sensory integration problems we don’t understand, from painful, crippling anxiety, from overwhelming frustration at his inability to communicate – he is still searching for and finding stars every day.

Over the past few months, my husband and I have introduced our son to YouTube videos of different kinds of music and dance – from classical to contemporary. Many videos he is not interested in. Others he watches over and over and over again – silently, intently, occasionally bouncing or rocking during a favorite part.

It never ceases to amaze me, his choices of videos. He is unaware and uninfluenced by what typical 8-year-olds are supposed to like, and although many of his choices are simple children’s songs, sometimes his choices are timeless and profound, showing a wisdom and sophistication beyond his years.

He finds what speaks to him, what comforts him. He finds his own stars.

And like stars, sometimes they stand alone, but other times they appear to form a pattern, a constellation through which stories or messages can be conveyed.

For several weeks recently, my son watched these four videos again and again, and they do, indeed, seem to create a constellation. (I encourage you to watch each one all the way through. I’ve seen them what seems like a hundred times by now, yet I’m still inspired and moved, getting all teary-eyed like the sensitive sap I am.)

“Ode to Joy/Ode an die Freude”, “Jesu, Joy of Man’s Desiring/Joy to the World”, “Happy”…

Yes, it’s a constellation of happiness, but it’s really more than that. These songs are jubilant, triumphant, victorious celebrations…defiant declarations of joy.

Keeping in mind the fact that my son is nonverbal and has limited understanding of the English language (no less a foreign language), clearly it’s not the words but something about the music and the instruments, the singing and the dancing, something that breaks through the confused messages of his disorganized neurons to bring him calming comfort.

To bring him happiness.

For him, music is like those powerful, burning spheres of hydrogen and helium, the light from which travels light years through darkness to shine as stars in our night sky.

I’ll admit I haven’t looked for stars lately because, quite frankly, I don’t want to.

I’m angry.

I don’t want to be comforted. I want things to be different.  For now I’m content to stand in the maelstrom of our personal Pandora’s box, screaming expletives into the wind.

My boy is the keeper of the little light in the bottom of that box.

His behavior during intense meltdowns is not who he is.

He is an intelligent, complex, and deeply sensitive child.

He is a hero who defies the darkness.

He is a seeker of stars.

He finds comfort in their light and shares it with me.

“Dark Energy, Dark Matter”, NASA, https://science.nasa.gov/astrophysics/focus-areas/what-is-dark-energy, Sept. 15, 2017.

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Empathy – The Birth of a Blogger

Published July 24, 2014 by Jen Rosado from MyAlternateUniv

When I arrived in my alternate universe, my first thought was not to start writing a blog. Early on in my adventures, all my thoughts and energy went into SURVIVAL. Yes, I know this sounds a bit exaggerated and overly dramatic, but it’s true.

I think every parent of a child with special needs has read the beautiful essay by Emily Perl Kingsley called, “Welcome to Holland”. I get all teary-eyed when I read it, and I’ve shared it several times on Facebook over the years. In the essay, Emily describes her experience of finding out her child has a disability by comparing becoming a parent to a trip to Italy. You’re excited and prepared for Italy, read the guidebooks, learned some Italian phrases, and planned out which sites to visit. As the plane comes in for a landing, the stewardess announces that you’ve arrived…in Holland. Her description of the shock, the confusion, the disappointment, and finally the acceptance – that’s pretty much what it feels like.

But I’ve always imagined that our plane did not land in Italy or Holland. After all, Holland is peaceful and serene, with tulips and windmills – a nice, relaxing, slow-paced destination. I’m guessing that our pilot came over the intercom with an irritatingly jovial voice to announce, “Well folks, we know you love mystery and adventure! So we’re letting you jump out of the plane and parachute into this jungle here! Heh! Heh! It’s pretty crazy at night, so we recommend sleeping in shifts or not sleeping at all. Your mission is to find some friendly natives who live in the jungle. The quicker you find them the better off you’ll be in the long run, so pay attention! They will direct you to the nearest civilization – a busy and confusing city, crowded with honking cars and people who don’t speak your language. THAT is where you’ll find the next clues in your adventure. Aaaaaannnnd if you’re lucky, you might eventually find your way to HOLLAND!”

Ah, yes. That’s more like it. Now you see why I was focused on survival and self-preservation for those first few years. Our lives had become “Survivor”, “The Amazing Race”, and “Nanny 911”, all rolled into one.

After four and a half years in this place, the inspiration to write a blog hit me. WHY I wanted to write about my experiences is pretty selfish, really. I was looking for empathy. I wanted people to understand. I wanted to feel less alone.

Because this universe is terribly lonely at times. The nature of autism is a “separate-ness”, an “alone-ness”, not just for the child but also the parents. It doesn’t happen right away necessarily – it’s a distance that grows over time. Even after making new friends in the special-needs community, I still felt isolated. I missed my old friends, my old life. I found myself becoming ever more envious of the friends who ended up in “Italy”.

It was nobody’s fault really. My friends and I still tried to get-together and hang out. But I felt weird right after my son’s diagnosis – like an exposed nerve, electricity buzzing all around my head. I’m surprised people couldn’t hear all those excited electrons zipping and banging into each other, because all that racket was making it very difficult for me to put coherent thoughts together. And my anxiety was such that my head felt detached, as though it was floating a little above my body like a helium balloon.

Electrically charged particles, floating head, thoughts lost in a static haze…hmmm… sounds a little dangerous. Indeed, I should have had some kind of warning sign on me, mainly for my newly acquired case of “blurting”. I often found myself interrupting a pleasant conversation with friends to blurt out, “My son has autism…”. Of course, my poor friends would have no idea what to say or even what look to put on their face.

Later I’d be driving home, thoughts bouncing around in my electrified balloon head: Why weren’t my friends making me feel better? Didn’t they understand? Didn’t they know how difficult and painful this was for me?

The truth is, no, they didn’t understand. They COULDN’T understand, not really, unless they had been through it themselves.

This was my first “empathy epiphany”. I realized that when you empathize with someone, you try to put yourself in his/her shoes and understand their feelings from their perspective. This is a little more difficult to do when that person is going through something that you have absolutely no personal experience with. You end up pulling things from your memory that are closest to what they are going through, hoping those words of advice or reassurance will provide some comfort. I know, because I’ve done this before myself, when I really care about that person and their struggles, and I’m desperately trying to find a way to make them feel better.

But that’s not always easy…or even possible.

This was my second epiphany: It was not the job of my friends to make me feel better about my son’s autism. Because really, there was nothing anyone could say at that point to make me feel better. It was an unfair expectation.

So how does all this stuff about empathy lead to my decision to write a blog?

Well, the idea to write a blog came from my last “empathy epiphany.” It started with a fundraiser:

A month or two after the diagnosis, my sister-in-law called to tell me about a fundraising walk for an autism charity. “We should form a team!” she suggested. It sounded fun, so I agreed. It was only two weeks until the walk, but we managed to register our small team and raise $400. The event was such a wonderful, positive experience. Everyone there was celebrating someone with autism, just like us. With all the stress and anxiety that is autism, this was like a deep cleansing breath, and the positive energy grounded me. The buzzing electricity began to fade, and my head slowly returned to my shoulders.

Posting our team photo on Facebook was kind of like our autism “Big Reveal” to anyone who didn’t know about it yet. Empowered, I shared pictures and articles related to autism and posted occasional updates about my son’s progress in the months and years that followed. Autism wasn’t a secret to be hidden or discussed in hushed voices, nor was it something shocking that I needed to blurt out at dinner parties. It was simply a matter of fact: Our son had autism, and it was part of our reality now.

With this approach, friends wanted to know more about my son and his progress. They asked questions and took an interest in learning about autism. Some asked to join our team for future walks. It was as if people no longer had to worry about looking for the right words or the correct expression to put on their face when I talked about my son’s autism. Being open and honest, I felt more connected to people, sharing my experiences without placing unfair expectations on them to comfort me.

And here’s the strange thing – although there was no expectation of comfort, I WAS comforted. My comfort was the feeling that I was no longer ALONE in autism.

That was my final “empathy epiphany”, the reason I chose to start writing this blog. My friends didn’t have to understand everything that I was experiencing in order to give me love and support. They did that by just sharing in the journey.

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