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?  “ 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

24 responses to “Finding That Sticky, Messy Area Between Perfection and Despair

  1. This post really speaks to me. My life the last ten years has been a downward spiral of comparing – especially my daughter to other children. Marisa has two cousins her age, Haley and Julia. Seeing the three of them together is SO hard for me. I hate people who have normal daughters, I hate women who have great hair. It eats at me to the point I can’t think of anything else.

    My niece posted something on Facebook today, about how agonizing it can be to have things be wrong on the inside, while everything looks perfect from the outside. No one, no matter how beautiful they are, how big their house is, how “together” they might be, is without problems. Just because you can’t see them, doesn’t mean they aren’t there. It just so happens that my problems are right out there for the entire world to see, and pity me, for. 😦

    I love the lyrics to the song Grand Illusion by Styx. Google it and look them up, they are words we should all be living by!

    • Yup, here are the lyrics…

      “Welcome to the Grand illusion
      Come on in and see what’s happening
      Pay the price, get your tickets for the show
      The stage is set, the band starts playing
      Suddenly your heart is pounding
      Wishing secretly you were a star.

      But don’t be fooled by the radio
      The TV or the magazines
      They show you photographs of how your life should be
      But they’re just someone else’s fantasy
      So if you think your life is complete confusion
      Because you never win the game
      Just remember that it’s a Grand illusion
      And deep inside we’re all the same.
      We’re all the same…

      So if you think your life is complete confusion
      Because your neighbors got it made
      Just remember that it’s a Grand illusion
      And deep inside we’re all the same.
      We’re all the same…

      America spells competition, join us in our blind ambition
      Get yourself a brand new motor car
      Someday soon we’ll stop to ponder what on Earth’s this spell we’re under
      We made the grade and still we wonder who the hell we are”

      Songwriters: DE YOUNG, DENNIS
      Written by Dennis DeYoung
      Lead Vocals by Dennis DeYoung

      • This has always been one of my favorite songs. Someone pointed out the lyrics to me as a teenager, and I’ve loved it ever since.

        You know, Ariane, I’ve been pondering your post all morning while I’ve been cleaning the house, lol!

        Jealousy is indeed a bad trip, and it’s gotten me nowhere. Even coming here, and reading your blog – I am SO jealous….so VERY jealous of you and Emma. 😦

        I’m jealous of you because you’re everything I’m not – a beautiful, worldly, succsessful, classy lady whose devotion to her daughter is obvious and immeasureable. I’m jealous of Emma because she’s going to MAKE IT in this world. She is so far off the scales, developmentally, than Marisa is. I think to myself, if that’s where Risa was, I could HANDLE it. But who is to say I wouldn’t be a basket case anyways?

        I’m so glad you’ve shared with me your former struggles and inner demons, as well as your unrelenting former quest to “fix” your daughter. I feel like I am still stuck in this very same place, and maybe, just MAYBE, getting to know you and Emma might give Marisa and me some hope, regardless of what our futures hold.

        Peace out, and thank you (as always!) for giving me so much to think about!

        PS – I’m going to email you a picture of Risa, since you’ve never seen one! As soon as I get around to it, that is. You’ll have to tell me what you think of my beautiful girl!

        • I’d love to see a photo, but I can tell you without seeing one that I think Marisa is a beautiful, intelligent, passionate girl, just like her mom! I don’t know that I would have stuck around reading a blog like this one during those dark early years, Angie. Maybe I would have, but it certainly wasn’t a message I wanted to hear. I remember when Susan Senator’s first book came out “Making Peace With Autism” and I felt sorry for her! Seriously, I really did. I remember thinking how I would NEVER do that, because to do that was to give up. I bought into the whole idea there was a war, a battle and I was going to WIN! It was that thing I wrote about today, bouncing from “less than” to “better than” but never comfortably finding a home in that muddy area between. Now I see women like Susan and I think, wow! How amazing are they that they came to acceptance fairly quickly?

          That’s the thing about all of this, it’s all subjective, it’s all a judgment call, all of it. Our ideas about beauty, acceptance, what it means to be a “good” mom, all of it are things we’re conditioned to believe are real but, are all things we’ve been taught.

          You keep reaching out. You keep reading. You aren’t stuck, Angie. I hear it in your words each time you write. You’ll continue to change. You’re reading this blog and reading all those links I keep sending you because you so love, love, love your daughter. Talk about immeasurable love, THAT is immeasurable love Angie. You’re a fighter and you want things to be easier for you and your daughter. You ask questions and you feel angry and sad and depressed and then you cycle back, but you keep reaching toward this other thing, this thing that’s compassion and love and acceptance and it’s all there pushing you too. 💜

  2. I have not cried the peace-releasing tears of sweet understanding since we finished writing the book, but this sharing of yours pierces my entire senior being with blissful expansions of deep affirmations that happiness is of our own doing, and certainly possible! Looking forward to sharing this with Peyton. Thank you Ariane. Dianne Goddard

  3. That first sentence up top? That might have been me. Or not.

    “Compare and despair” has been like a mantra for a long time. Every time I see a little kid who only reaches up to Emma’s knees, but is talking in full, complex sentences, I go to the mantra. My acceptance of Emma as who she is has been fairly solid for a long time, but it gets shaken from time to time from incidences like this, maybe even worse when other kids her age look at her judgmentally, because she’s prancing, or twirling her string, stimming, scripting, echoing. I see how much she wants friends and I know how much little girls her age compare, and form their alpha hierarchy. It’s very frightening. I also support a lot of anti-bullying efforts including the Kind Campaign which focuses on girl-on-girl bullying. When I watched that documentary and saw how these girls were being tormented by other girls, I completely abandoned my desire to see Emma mainstreamed. On the other hand, when she went to summer camp with Joe, a nice group of girls took Emma under their collective wing and she had such a wonderful time with them. I guess the bottom line for me is that fear and defensiveness will always take me to more of the same. Love and acceptance is always the answer. But when I see anyone making fun of Emma, it’s hammer time!

    • You know, I’ve often wondered when it comes to Marisa – maybe she is better off in that she *doesn’t* care? She has no desire to make friends with anyone, girl or boy. Heck, she barely acknowledges her own brother. I look at her sometimes, and think that just maybe, her little soul is too good for the average, sucky world we live in. Maybe she’s lucky she doesn’t have to deal with everyday, petty problems. She is who she is and SHE doesn’t care what anyone thinks….now if I can just come around to that way of thinking myself, it’ll be progress!

    • Richard – “…fear and defensiveness will always take me to more of the same. Love and acceptance is always the answer.”

      What an amazing man you are. What a wonderful husband, Dad, and partner!

  4. As far as compare and despair goes hmm not sure who to put this since Emma is of course your daughter so if you think you will despair if you compare then okay but when I read about her and see her I see a lot of areas where she actually seems ahead of most of us.

    Also I think it is impossible to not compare however hard we try not too. I know I will feel bad if I compare myself to the typical 44 year old woman. Even if I focus on the ways I am “better” than average overall I don’t have anything close to the life I still expected to have as I entered adulthood.

    On a good day it doesn’t bother me. Because this entire year has been so stressful my functioning has been pretty close to rock bottom for some time. Since in theory I am “high functioning” due to things that have nothing at all to do with my autism the people they send to help me are entirely clueless. Today’s “help” commented she didn’t understand why I couldn’t remember to eat etc… because I was so smart after I had tried to explain. I told her to just go. Those kind of things that reflect a total lack of understanding of my actual situation just make me feel worse. It’s not really me making a comparison there though. In an ideal world I would be helped by people with a clue about autism but that’s not likely to happen.

    It’s always best of course if you have to compare a child to compare them to themselves as the developmentally disabled might always be behind in the things society values compared to the kid next door so any progress made might fail to seem significant or important. It’s still impossible not to though. Most of my classmates have children and good jobs, Homes. I was in a gifted program so many are doing high power very impressive work and then there is me.

    I mostly value myself as a person. I think I am far more honest, ethical, logical and (sorry Simon double barrel Cohen) even compassionate than average but it is hard not to want what a neuro-typical person with my intelligence and education has seemingly without effort. I have to forgive myself for making the comparison though and I suppose that must be even more so if you are a parent who might feel guilty about even having done so.

    It’s natural I think. Even on matters that completely don’t matter. Someone has a nicer motorbike, or coat or has an electronic device you covet. Those are non-painful examples but both varieties happen through any day you don’t just seal yourself inside your room and hide under the duvet.

    Every developmentally delayed child I have ever known including myself I suppose in childhood had some doctor or multiple doctors make pronouncements on all the nevers of their life. There’s a pretty limited focus of the things a doctor is likely to say you will never do. They never add any sort of on the other hand like your child will likely never speak but on the other hand they may be capable of finding amazing beauty in the way the sun interacts with a dust mote when they under a bed. I suppose few parents would find comfort in that as an “other hand” but only the most compassionate professionals ever seem to look at any strengths. Even the “lowest functioning” person has some strengths. Granted unfortunately with autism that strength is sometimes tenacity (from the raising one point of view) but it’s still a strength even if at times seems like a stubborn refusal to comply, shape up, etc…

    I’ve watched my less intelligent, less educated family members make lives that any would envy. Now I watch myself being lapped by the younger generation as well. It’s a tough time right now so not comparing and despairing is kind of impossible right now but one day – soon I hope- I will be able to see the ways that if one must compare I am ahead and to value those ways.

    It’s just a bit impossible when you live in a tiny apartment carved out of a garage on a disability pension that when your allowable savings runs out likely won’t permit the luxury of food every day once the rent and bills are paid. I know I won’t actually starve when that happens since every Friday I walk off with a the bulk of the left overs from oneg (refreshments after the service – literally delight) and when things are worse all the good people in my life will step that up but it’s hard not to worry and be stress and wish you were that pot-head, smart alec from high school who now travels the world for the UN for example.

    I don’t know if it is any comfort at all to those who have “lower functioning” children but many of the “high functioning” people I know often look back with longing on the time when escape from pain and expectation and life in general was instant and blissful. With “progress” we seem to lose that and wind up being expected to do the impossible for us and being judged by people with no understanding at all of why we can’t do those easy things. I would love less awareness right about now.

  5. Aw, Gareeth. I’m sorry. Having to depend on idiot people who have little or no understanding must be unbearable. I am sorry.

  6. Comparing, measuring, despairing . . . All ego related. I live simple perhaps, as I simply care.

  7. Coyotetooth, your words are profound. You have the answer.
    Ann G

  8. Well they are not really idiots. The likely understand the issues they are more typically used to dealing with quite well just have not even a a lay understanding of how autism impacts life.

    You don’t need to be sorry. Sounds like you deal with a fair share of knowledge challenged people yourself.

  9. You never cease to amaze me Ariane! Beautifully written!

  10. Pingback: Finding That Sticky, Messy Area Between Perfection and Despair « Raising kids with diagnosed/undiagnosed autism

  11. Fabulous! Just that! Yes!

  12. When I was very young comparisons did not really hurt me. What hurt was the disappointment I felt coming from my parents. They did not say anything directly to me, but I could feel. I didn’t mind the comparison because I did not think I was “wrong”. Until the talk about fixing me became constant. Then I became sad and frustrated

    • Amy – this is why I want everyone to hear you! Parents (like me) talk about fixing or curing their child (like Emma), their child senses their desire, internalizes it and becomes sad and frustrated. No parent would say this is what they intended, no parent would say they want their child to feel badly about themselves, and yet, this is exactly what happens. But without your voice reminding, without you continuously telling people, they won’t think about it. They won’t stop.
      Thank you for patiently continuing to speak out. Thank you Amy for insisting that others pay attention and listen.

  13. New here and just wanted to say hello. You have a beautiful daughter and I look forward to reading many more posts.

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