|Publisher:||Nite Owl Books|
|Product dimensions:||5.50(w) x 8.50(h) x 0.40(d)|
About the Author
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DO YOU EVER PLAY the What If game with yourself? It may look like preparation, a way of solving problems or getting more out of life. However, it's actually an innocently created way of scaring ourselves with an imaginary crystal ball. It can appear and feel quite real.
It's filled with impossible-to-answer questions that often begin with What If or How. The voices in our heads can get rather loud and boisterous.
What if that happens? What if this doesn't happen? What if this never happens with my child? What if I can't do this? What if my child never does this or that? Or always does this or that? What if he gets stuck in this phase forever? What should I do about ______? What if I can't fix his autism? And finally, How am I going to figure this out, live with this, make it through this difficult, scary, rocky time?
I'm going to propose an antidote to this game. A spiritual salve. It's designed to be a catalyst to help you see that you don't need to even try to answer these kinds of questions. They may still pop up from time to time, but they don't require a lot of attention. This means straining and striving can take a back seat or even get out of the car.
What if you are connected to a universal energy that will guide you to wisdom every step of the way on this journey? This means you already have everything you need to figure things out, one step at a time. This guidance will help you know when to look to outside resources. It will also allow answers to spring from within, seemingly out of nowhere.
What if there is nothing to fix because innate resilience and wellbeing is the special elixir you and your child were born with? This means there is so much less to do. Stress and strain is optional.
What if you don't need a tool or technique to access well-being because it's always available beneath the surface of your busy mind? And when you settle, even for a nanosecond, you have the ability to dip into that space of peace, love, and clarity. This is because that space never goes away. It just gets obscured by busy, muddied thinking.
What if the stress and strain you feel is not coming from the condition of autism, your child's behavior or challenges, or the obstacles in your life? Your feelings are coming from your inside world rather than the outside world.
And finally, What if there's nothing to do about all of this because it's simply enough to know of it?
Ahh, this is all good news. The to-do list just got shorter. It may have even dropped to the floor for a moment.
If none of this is making sense right now, that's okay. Take a breath and read on.CHAPTER 2
My son Kyle was born in 1983. For the first few months, he seemed like a typical baby. However, looking back at video, early on there were subtle signs that he was different. Something was off. The interacting and responding that is evident with very young babies was not quite there.
I didn't realize anything was amiss until he began having seizures at 5½ months of age. It was then that he received his first diagnosis. Epilepsy. By 18 months, autism. I had known for a while. It had been a fear of mine that I never said out loud.
Someone told me the best way to proceed was to love him, autism and all. Accept, be happy with, be okay with. See beautiful, no matter how different he was. Know he was okay and doing the best he could. As was I.
Confession: I couldn't do or see most of that. Not at all. I loved my baby deeply. My heart and soul hurt. I certainly didn't feel okay most of the time. I was filled with an unarticulated worry about the future. I don't think I admitted this to anyone, not even me.
I wanted to be in that place of acceptance. On the one hand, I dreamed of less internal struggle. On the other hand, I believed it was par for the course. A given when you had a child with autism. Don't give up. Fight, fight, fight.
Never give up but be okay with, even relax with, at the same time? Was that possible? Of course I saw beautiful when I looked at my baby boy, but it came with a "but." A big one.
I wanted to be in that place someday. A place of acceptance while at the same time, doing everything I could to help my son be the best he could be. I wanted to not want to fix him. I dreamed to know he wasn't broken. Different, yes, but not broken.
How would I get to this place within myself? I didn't know. I picked up my flashlight and shined it out onto the road. It was a dim bulb, only able to illuminate the next few steps. Off I went.
All I had was a direction in which to head. An intention of being okay with what was. Of knowing I was okay and he was okay and my family was okay. I gazed out toward someday. Not being able to see the future, "someday" was simply a blur.
During a recent interview, I had an insight. It slipped into my awareness rather quietly, without fanfare. Something new became clear to me.
I had arrived.
How long had I been here? I had no idea. It was not a moment, but a series of them. Moments, hours, days and years. It was more a gradual waking up than an actual arrival. One that I could not have predicted in any imagined future.
How did this arrival occur? Was there a method or technique?
I have never tried to articulate this, but the answer seems simple now. I went about the business of living my life. I figured everything out as I went along.
Now I see–and this is a big thing to see–that that's all we can ever really do. Figure it out as we go. Put one foot in front of the other. Take one step and then the next. Live. Plan, but plan lightly. Because life takes place in real time. The rest of the stuff is in our heads or on pieces of paper.
I took many steps on many paths. Not linear, but zig-zagging all over the place, as life tends to do. At times the road was really rocky, the footing uncertain. At others, it was smooth and I could glide for a while. The full gamut of human emotions swirled in and out.
I lived my life. Because that's what was on the plate in front of me. No matter what thoughts were swirling around in my head, no matter what feelings were taking up residence in my body, there were things to do.
I celebrated victories, large and small. I laughed. I loved my children deeply. I made time for my husband.
I cried, too. I worried, making up stories in my imagination that never turned out to be true.
As humans, we have a propensity to make up futures, scaring ourselves with our predictions because we believe them. But the truth is, we are lousy predictors because people and situations are dynamic, not static. The future is unknown. And real life takes place in the moment, not in our heads.
My children grew into teens and now, adults. Life kept rolling along. I kept putting one foot in front of the other. Sometimes stumbling, even falling. Always getting up again, ever resilient. And I watched my children, including my son, do the same.
In the beginning, if someone would have told me I just needed to keep walking, one step and then the next, I would have dismissed it as too simple.
I never really needed a strategy for acceptance. My fearful thinking passed through without my help. Although sometimes I didn't feel okay, I always was okay. My circumstances could not take away my well-being. My outer world might be topsyturvy and my thoughts stormy, but deep down below, there was a calm resolve, and resilience keeping my core solid: my default setting as a human.
With these insights, I came upon the sign I had been looking for.
You have arrived.
But keep walking, anyway. There's much more up ahead. It's called life.
When found, wisdom enhances the channels of the mind and acts like a penicillin for the soul.
— Sydney Banks, The Enlightened Gardner RevistedCHAPTER 3
AUTISM IS OFTEN symbolized by a puzzle piece. There's a search for missing elements that will yield a fix. Solutions.
I'm going to propose that the missing piece of the puzzle is something to notice and understand rather than something to fix.
Resistance. It's a common feeling and experience.
There is resistance against autism, an operating system that uses a different processor. There is resistance against the smaller picture, day-to-day things. My child is obsessed with _______. There is resistance against the bigger picture, overall quality-of-life things. My child is never going to have friends or be able to do _______. And there is a global, pervasive resistance to the entire autism package that colors our world at every moment.
It's resistance that actually creates our stress, unhappiness, and misery. Not our child. Not autism and what autism comes to mean for our child and our family.
I recently had a very powerful experience of the transient and thought- created nature my own resistance.
Kyle was sick. Shivering, under-the-covers sick. Flu and bronchitis knocked him out for a full week. It took him a while to bounce back to his energetic self and slip into the groove of his norm.
After the illness, he struggled with getting into the shower. It didn't look to me like he was afraid of the water or didn't want to be washed. There was something about positioning his body to step in, over the side of the tub. His reaction was one of sheer panic.
While trying to assist him, I felt tension within myself. Resistance. A resistance to his resistance. My thinking: "Oh, no, this can't be happening. He usually gets into the shower without issue. What if he never gets into the shower again? We need to get this done so he can be ready on time for his morning pickup. Not another obstacle!"
A swirling brew beneath my consciousness, the thoughts rolled on and on, fast and furious like a hailstorm. The more mental resistance I got into, the more stressed and tense I felt. I found myself trying to physically and verbally cajole him into the shower. Pushing.
Oh yeah. Pushing against his panic DOES NOT WORK.
There was a moment where I had the sensation of watching myself in a movie. I paused and took a step back. It was obvious we were not getting anywhere.
I found myself settling down. Just like that. Without effort. The thoughts blew through and I was left with a question. Now what?
How about Plan B?
I'm good at Plan B-ing. Plan B is obvious. I've done it before. Wash him out of the shower. Layer the floor with towels, get the soap and do the job in an alternate location. He was fine with that. And after a moment, I was fine with it, as well.
When I settled down, I was able to hear what I knew. There is always another way. And in this case, the other way was a no brainer. Been there, done that. When I can listen beneath the static of my thinking, my inner GPS knows how to guide me. At first it's faint, and then the volume gradually increases to tell me what I know.
With my resistance out of the picture, I put Plan B into action. Everything flowed from there. Peace settled over both of us. We were able to get the job done with grace and ease and the results were good enough. Hair washing would wait for another day.
Later on, an insight popped to the surface of my awareness. Resistance is the source of my stress, our stress as humans.
That's right, resistance. Not my child. Not his behavior or abilities. Not the label of autism.
I kind of knew this already. But it was as if I rode the elevator up a few more floors and saw it in a new way, on a deeper level.
Resistance, arguing with what is, shows up as a feeling. And not typically one that feels good. Stress, anxiety, worry. And much more. We feel it in our body. It can adversely affect our health. It paints our reality.
But here's the thing. And it's a really, really big thing. Resistance is made of the energy of thought. Resistance = Thought.
Thoughts create the argument with what is. They push back. They kick and scream. "He CANNOT be having trouble getting in the shower. He always gets in the shower. Why do simple things have to be so hard? Still!" When I am in resistance, it's like someone has put a sack over my head. Old, stale thoughts repeat themselves like a broken record. I don't see or hear anything new. It feels like I'm stuck.
Thoughts appear solid. They paint a picture of reality. Just like a movie, I'm drawn into the story 100 percent.
I can't force myself to stop being resistant. That looks like even more resistance. However, eventually I wake up. The storm passes. The lights go on in the theater. The thoughts fade, making room for a new batch. Wisdom and intuition blow in.
And there, right there, is the fresh energy of Plan B. Shiny and bright like an "a-ha." Or perhaps a "duh." Possibly something I've done before but looking brand new to me in the moment. Suddenly, reality looks completely different. A new movie.
At some point, I see resistance for what it is. Without effort on my part, it eventually melts in the sunshine of my understanding. In its place is direct access to my innate well-being, the space where wisdom flourishes. I remember my ability to figure out how to make things work. Good-enough solutions suddenly appear like a washcloth and a bar of soap in the middle of the bathroom.
Suddenly, my desire to control dissolves and gives way to a fresh understanding. Kyle and I get on with our day. And our lives. Not the one in the "how it should be" box. But the one that takes place in real time.
Autism, to me, is not a mental illness. It describes a person with a brain (computer) with a somewhat different processor than the majority of people. The mind, however, is connected to the same spiritual source. Each person, regardless of their processor, knows the experience of Love and Joy and the innocently created experience of stress and turmoil.
— Dr. Bill PetitCHAPTER 4
A child with Autism When you tell people, they seem sad a momentary gaze of pity crosses their face Beyond compassion, sympathy perhaps
Life gave you a lemon, say their eyes "He's so handsome though"
A lemon Something to deal with An obstacle to happiness and a good life
Something to reframe Put a new lens on the glasses from which you gaze out into your world
Make the best of it if you can Squeeze that lemon, add sugar Make lemonade The only way to make it okay But what if ...
the lemon-ness of autism is not real but made of thought?
And our experience does not come from our child, his behavior, his autism but from lemony thoughts.
They create our lemony experience.
What if we have the ability to allow the energy of thought to float through, knowing there is something new that will come along?
Something sweeter at any moment in time
Nothing to do but wait live notice and love.
The transient nature of thought creates the transient nature of our experience
We can see something new without effort or fixing or doing or changing our child
No squeezing of lemons because lemons don't exist
They are not solid like the ones on my tree They are made of the formless energy of thought
A relief to know I don't have to fix my son, so handsome or my experience, so fluid Or make a single glass of lemonadeCHAPTER 5
Life is full of decisions. Have you noticed decisions can appear magnified when you have a child with autism? No matter the age of the child, the decisions can feel as if they are living, breathing and rushing toward you at record speed. There are so many!
You seek solutions, and thoughts rev up, moving faster than the speed of life. Pretty soon there's a feeling that your head might just explode if you have to decide on one more thing. A perfect definition of overwhelm. Mix in a few spoonfuls of fear, and we have innocently created that uncomfortable feeling of stress. It's not particularly shiny, pretty or inspiring. It feels complicated rather than simple.
The decisions often wear the facade of really big mountains to climb. Huge. They come in many flavors and often have the fragrance of urgency.
How do I connect with my child when he doesn't respond in the typical ways? How do I teach my child when he doesn't appear to learn in the typical ways? Medication, doctors, therapy, schools? Interventions, strategies, solutions, answers?
Personally, I often entertain the mother of all questions/decisions. Where will Kyle live when he doesn't live at home?!? Who will be his main support when I am no longer here?
There are so many pieces to the quality-of-life puzzle for my child and family. Big questions can seem as if they have to be answered right now or even yesterday. And once answered, there are usually many more piled up in the wings waiting for solutions.
Kyle is not verbal. So I go by keen observation and intuition. There are so many unknowns with him.
A basic one is when it seems as if he might be sick. Or perhaps he is just out of sorts and tired. Should he stay home? Should he go to the doctor? Should he take some medicine? Yes or no. Yes or no. And then after the yes or the no is answered, more questions.(Continues…)
Excerpted from "Space of Love"
Copyright © 2018 Nite Owl Books.
Excerpted by permission of Nite Owl Books.
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Table of Contents
Space of Love,
Grit and Grace,
I Don't Know,
What If It's Not a Choice,
Control: It's An Illusion,
The Tea Shop,
Back to Normal,
Will It Happen to Me?,
About the Author,