Tag Archives: Compare and Despair

The Joy of Being Wrong

When my daughter was eight I was so envious of my friends who had daughters the same age, because they were going out together, having mother/daughter outings, getting pedicures, doing girlie things and I despaired that I would never have these kinds of outings with my child.  I know how selfish this sounds.  I know this statement is all about me and has nothing to do with my child or her interests or her feelings.  I always dislike hearing parents talk about their children as though they were some sort of glorified extension of themselves, like a conduit for all the parent’s failings, as though this child was a metaphoric phoenix rising from the parent’s DNA, destined to be all that the parent hopes for, but has failed to do and be themselves.  But at the time I did feel envy and also, was aware enough to also feel badly for having those feelings.

Flash forward to this summer.

A friend of ours returned home one Saturday afternoon with Emma, who ecstatically showed off her newly painted RED toenails.  I was astonished. “You guys went and had a pedicure?” I asked.  “Red toenails!” Emma exclaimed with glee, while positioning her foot next to our friend’s, who had the same color red on her toenails.  “They match!”  Since then Emma and I have gone every other weekend for our “pedicure spa” where we sit side by side and have our toenails painted.  Emma picks out the color, which she insists we both have so that we “match.”  Both of us look forward to these outings.

There are other examples of times I’ve despaired, thinking that whatever our current situation is, it will remain so forever.  This is not specific to my daughter, but is something I am aware that I have a tendency to do in life and always have.  The idea that things are fluid and constantly change, is a tough concept for me.  I tend towards extreme thinking.  When things seem bleak, I am convinced they will always be.  When things are good I am suspicious and await the inevitable.

It is as though I believe I will have to pay for those good times, like an invisible law that shows no mercy.  The good times are tempered with the “knowing” that they will be fleeting and won’t last.  Over the decades I’ve gotten better at this, I am aware this is my tendency.  I catch my thoughts quicker and am able to remind myself that I do not know what will happen next.  But still I find myself easily sliding back into that old way of thinking.  It’s not the reality of someone else’s life, it is the idea of someone else’s life that I compare myself to and that idea is never true.

These days I try to head off comparing the minute I become aware of it.  It does not serve me.  It does nothing to help me.  I am not a better person because of it.  It makes me sad and miserable and has nothing to do with either of my children or my life.  In fact that thinking hurts my children.  Both are highly sensitive to other people’s moods, they easily pick up on emotions and take them on.

At the moment, Emma and I are sporting pink toenails and every time I see our toes, I smile. They remind me of all those years when everything seemed grim and hopeless.  When despair surrounded my every breath, when desperation hung in the air I breathed, when I believed I knew what we were up against, when I believed this was going to be our life, when I thought I knew and no one could convince me otherwise.  That toenail polish, that gorgeous pink toenail polish that Emma insisted we both wear is proof of just how wrong I was.  About everything.  About everything.

Finding That Sticky, Messy Area Between Perfection and Despair

“Compare Emma to Emma.  Don’t ever compare her to another child.”  This was said to me years ago by someone whose name and face elude me.  I was reminded of their suggestion this morning as I rode the subway to my studio and read the chapter by Lucy Blackman from Douglas Biklen’s terrific, must-read book, Autism and the Myth of the Person Alone  – “That is  best illustrated by asking each reader to describe the cultural or emotional characteristics of their own sex, whether man or woman, without any reference to the opposite, not even by implication, as if you were completely unaware that there is another set of options available.”

As the subway careened along beneath the streets of Manhattan, I reflected on this idea of not comparing Emma to anyone else or even to an abstract idea of anyone else.  What if I didn’t compare her at all?   “…without any reference to the opposite, not even by implication…”  What if I saw Emma purely as Emma?  “..as if you were completely unaware that there is another set of options available.”  What if I pushed out of my mind all those evaluations, the reams of “reports” the specialist’s conclusions, the pages and pages of “information” gathered over the last eight years?  What if all of it, every last word was meaningless?  What if I emptied our file cabinet of all that and started anew?

We live in a culture of comparing.  We look to our neighbor and envy their garden or, as happens in Manhattan, how many square feet their apartment is. We salivate over other’s imagined life, we covet that which we do not have and may never have, we pore over the lugubrious details of fallen celebrities and the train wreck of their lives, we gawk at the photos of dimpled hips, bellies, thighs occupying pages upon pages in magazines we may never purchase while in line at the supermarket, relieved that we are not the only ones whose bodies are not the chiseled, polished, perfection obtained through that impossible combination of genetics and a willingness to give over hours of our lives to a gym.  Yet we still feel embarrassment and shame when we go to the beach and uncover ourselves.

I spent a great many years perfecting just this sort of thinking.  I spent far too many years feeling alternately “less than” and “better than”.  Oddly there was equal measure of shame in both and yet I couldn’t figure out how to extricate myself.  It was one or the other, that sticky, messy area between those two points was much harder to occupy.  But it is that area I long to find my place in.  It is exactly that middle ground I now find myself reaching for.  “…as if you were completely unaware that there is another set of options available.”  That is what I strive for, when I think about and interact with Emma, but also in every area of my life.

“Compare and despair” is something I have heard people say.  I can illustrate this saying with countless examples from my life and yet, even now, knowing what I know, the temptation to compare is seductive.  How does it serve me?  This is the question I know to ask.  And I have the answer to this.  It doesn’t, but it is a habit.  Thankfully I am learning to stop myself when I catch myself comparing.  What I am coming to realize is, comparing is my knee jerk response to stress.  It is where I go when I’m tired.  It’s my default setting for when I’m overwhelmed, hungry, sad or just confused.  Repetition is how we acquire skill.  Repetition is how we undo learned behavior.  When I compare Emma to Emma I see tremendous progress, I see possibilities, I see limitlessness, I see the beauty in the small steps taken, I see a kind of poetry in her growth.  Challenge becomes subjective, goals are no longer solid lines but instead shimmery bands of light, something one moves in and out of, no longer a mountain to climb, but rather a place to visit and then move on.

How do I stop comparing my child?  By seeing her through a lens of wonder and curiosity.  When I am able to accomplish this, I have found true bliss.  A blissfulness Emma innately occupies and patiently awaits me.

Emma running through sprinklers outside the Museum of Natural History

Fear = Feel Everything And Remain

Fear.  It creeps up on me, seemingly without warning.  Sometimes I get hit with it while brushing my teeth or waiting with my son, Nic, for his school bus or when I am walking to my studio.  Like a person suddenly 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, or Frantic Effort to Appear Real.  I like some of those, but the thing that I’ve found helps the most is to admit I’m feeling fearful out loud.  To “out” it.  To not allow it to sit, twisting and turning in my gut, while pretending it isn’t there.  Pretending it isn’t there rarely helps.  On the other hand, allowing myself to go into intricate detail about it often makes it worse, like feeding a dragon, or adding fuel to a fire, (pick a cliche) so it seems there’s a balance needed.  Feeling the fear, acknowledging it, and then trying to trudge along anyway, or do as my favorite saying regarding fear – feel the fear and do it anyway.  The “it” is often a moving target, particularly as this morning’s fear is all around future thinking involving Emma.

Which leads me to the two most detrimental things that lead me to despair faster than anything else when it comes to my daughter – future thinking and comparing her to others.  Compare and despair, they say.  Deadly.  It is deadly and it doesn’t matter whether I am comparing her to another autistic child or a neuro-typical, it is deadly.  I try to cut that one off at the pass.  If I see it coming I try to turn my back.  “Don’t go there,” I tell myself.  Sometimes it’s impossible, large gatherings with other children are the worst and sometimes it’s impossible  to avoid.  Sometimes I have to sit and hope it just washes over me and leaves.  I hope there will only be a few waves of it.  I hope I’ll be able to stay upright.  I hope that 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 an action 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 “study room” and she has not been progressing as rapidly as she had been, so 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 with her reading and writing has been the single most helpful thing in keeping the fear at bay.  When Emma was stalled out, not moving forward, those were the darkest times.  As long as she continues to progress, her self-portrait, her letter, her writing about going to the zoo, are examples and 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 remove the fear, I know they won’t completely eradicate it, but they are the things I know to do that will help, even if not in this next moment, but 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

To read my most recent Huffington Post, click ‘here.’

To read my guest post on Special Needs.com, click ‘here