Fear. It creeps up on me, seemingly without warning. Sometimes I get hit with it while brushing my teeth or waiting with my autistic daughter, Emma, for her school bus or when I am walking to my studio. Like a person suddenly and without warning appearing in front of me, it startles me every time.
There are phrases using fear as an acronym, such as: F*ck Everything And Run, or False Evidence Appearing Real, or Failure Expected And Received. I like some of those, but over the years I have developed a FEAR strategy kit designed to help me live... well, if not fearlessly, at least without the constant threat of fear fogging my vision. These are the things I've found help the most.
Admit I'm feeling fearful. I must "out" it. Say it out loud. I cannot allow it to sit, twisting and churning in my gut, while pretending it isn't there. Pretending it isn't there doesn't help and never makes it go away. On the other hand, allowing myself to describe it in intricate detail often makes it worse, like feeding a dragon, or adding fuel to a fire (pick a cliché), so it seems there's a balance needed. It's about feeling the fear, acknowledging it, and then trying to trudge along anyway. One of the sayings regarding fear advises, "Feel the fear and do it anyway." The "it" is often a moving target, particularly as this morning's fear was all around future thinking involving Emma.
Which leads me to the two most detrimental things that propel me into fear and despair faster than anything else when it comes to my daughter: future thinking and comparing her to others. "Compare and despair," they say. It is deadly, and it doesn't matter whether I am comparing her to another autistic child or to a neuro-typical child. It is deadly.
Recently, I came upon a blog written by a mother of two autistic boys whom she described as being "on the severe end of the spectrum." As I continued reading, I found myself saying silently, "But Emma cannot do that. Emma doesn't read at that level, Emma doesn't... Emma can't...."
I finally had to stop reading. I felt a surge of anger, and then after my anger had abated, I felt tremendous sadness. What did this mean for Emma? If these two boys were severe, Emma was barely maintaining a foothold on the severe end of the spectrum.
Compare and despair. The insidiousness of comparing is that it feels so right, so reasonable, and yet is based on very little actual fact. We cannot know what anyone else's life is really like. We get snippets and snapshots, but that is all. It's not a complete picture. It's one small part of something. Yet when comparing I am basing my assumptions on that one tiny piece while convinced I'm seeing the whole person.
On the heels of comparing comes future thinking. If Emma isn't able to tell time by X age, isn't able to understand the concept of money by X, isn't able to shower and wash her own hair by X, then A, B, and C will happen. The future, far from holding the promise of subject matter that will transport and engage her, deepening friendships and career opportunities, instead becomes a wasteland of frightening scenarios, one more horrific than the next.
Fear has a way of sliding in through the back door, oozing between my thoughts, thrusting itself into any and all thinking if I allow it to. So I've learned I have to cut it off at the pass. If I see it coming I try to turn my back. "Don't go there," I tell myself. Sometimes I have to sit and hope the fear will wash over me and leave. I hope I'll be able to stay upright. I hope I'll be strong enough not to cave under the weight.
That's the thing about fear: It can be so all-encompassing, so random, so... sprawling.
Make a list. This is the step I take when I feel as though I can't breathe. Make a list. Prioritize. What needs to be done? This past month I have not been as diligent with Emma's reading and writing, and as a result, she has not been progressing as rapidly as she had been. I'll need to figure out how to manage my time better to get back to that. Emma's literacy program is one that continues to fill me with hope and gives me energy. Seeing her progress has been the single most helpful thing in keeping the fear at bay.
I make a list of the things she's done showing tremendous forward movement. I print out her drawings, samples of her writing. These are the things I cling to like so many scraps of wood in the middle of an ocean of fear. Just keep my head above the water, just hold on, keep treading, keep breathing, it will be okay. It will be okay.
Make a list. Check.
Don't pretend I'm not feeling the fear. Out it. Check.
Feel it. Check.
Keep moving forward. Check.
I know these things won't completely eradicate the fear, but they are the things I know to do that will help, if not in this next moment, then in the next few hours, the next few days. The fear will dissipate. It always does.
Take a deep breath.
FEAR = Feel Everything And Remain.
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