April 21, 2011

Point of View

Posted in Life's Little Moments, My Take on Autism tagged , at 8:38 am by autismmommytherapist


I’m out in the community a great deal with Justin these days, more often now that he is usually compliant in public, or if not, can be “redirected” in his distaste for whatever choice I’ve made that’s irritated him that day. Sometimes I strike up conversations with people about him, usually with individuals who’ve tried to engage him in conversation and been confused by the rebuff of silence, which of course leads me to explain that he can’t talk. If Justin is not vocally “stimming”, making his sounds of excitement or comfort, it would be easy to mistake him for just another kid, because except for (in his mother’s opinion) his devastatingly handsome face, he looks “normal”. I’d hate for people to think he’s  being rude, thus I chat with them.

I will never forget wheeling him through the mall one day a few years ago and getting accosted by one of those ridiculous mall wenches, so “faux-enthralled” by his cuteness, and having to explain to her that while letting him earn his keep in commercials sounded fabulous, we instead were going to focus on trying to teach him to talk first. I actually thought she was going to cry when I told her he had autism, and her response of “but he’s so adorable!” was so beside the point I actually found it humorous. How he looks is the least of his issues, and I’ll be so bold as to say it’s probably helped him at times to be attractive, and he’s certainly not alone. Hell, from what I’ve seen over the last seven years that I’ve been on “autism alert”, I’ve noticed that so many of our kids are as well.

It was through one of these conversations years ago that I came to realize how much my perspective had changed on Justin, his type of autism, and the ramifications of his disorder on our family. I was chatting it up with the butcher at my favorite little Italian store (yes, on occasion, when forced, I do actually cook), and he was asking me how Justin was doing, both in school and at home. We’d formed one of those financial friendships that crop up when you shop somewhere frequently, and as such I’d come to know a little about his daughter and his grandkids, and he’d become familiar with my family as well. One day, after telling him we’d figured out Justin could read and sharing how the world just opened up for him and us with that discovery, he placed his hand on my son’s head, grew tearful and said, “He’s beautiful. This is a tragedy. I don’t know how you and your husband get through the day.”

I remember taking a deep breath and just smiling, telling him Justin was a good boy and a gift, making my carnivorous purchase, and leaving the store. As I shifted boy, diaper bag and groceries into my car I knew I’d have time to process what had happened as we drove, and I was grateful for the opportunity to do so. Eventually I clambered up behind the driver’s wheel, inserted Justin’s CD selection into the proper slot, and settled into both my seat and a search for how I felt about the conversation that had just transpired.

I realized this. That a few years ago I would have agreed with that sweet man unequivocally, but would also have bristled at the use of the word “tragedy” by a mere acquaintance. I would have thought to myself that Jeff and I were really just barely surviving sunrise to sunset, that we were unable to see the triumphs for a time, just the difficulties that autism imposed on our lives. I would perhaps have agreed that the use of the word “tragedy”, and the implication from it that our family was irrevocably ruined, was apt. I believe I would have fully supported him in his sympathy, and his sadness.

Instead, I accepted this sliver of truth from his sentence. Yes, my child is good-looking. Yes, there are aspects of autism that are tragic, like watching his frustration as he tries to communicate a need, or the reality that he will spend half of his lifetime outside the confines of my protection, completely vulnerable to his caretakers. These issues are real, and they are daunting, to say the least.

But if I could go back in time and respond today, I’d tell our compassionate butcher this. That Justin is not only fair of face, but lovely in soul as well. That most of the time he is a happy boy, one who takes great delight in the people who matter to him and the world around him. I’d tell him that he is loved, and loves us back with an unlimited fierceness.

And as for Jeff and me getting through the day, I’d share with him the anecdotes of our life together that so thoroughly soothe the pain. I’d tell him how last summer my son took his future aunt’s hand, gazed into her eyes, and lightly kissed her palm in a grand gesture of affection. I’d talk to him about the relationship that is developing between he and his brother, how Justin not only tolerates Zachary’s advances, but continually initiates his own toward him as well. I’d explain to this gentle man that my husband and I survive because our son’s laughter, though rare, literally lights up the world around us.

I’d reassure him that while I’ll never be at complete peace with this, that I do accept it. I’d share with him that we’ve worked autism as successfully as anyone can into the framework of our particular family. I’d comfort him with the thought that as with most families, things are not perfect.

And I’d remind him of one incontrovertible, universal truth- that nothing ever is.

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13 Comments »

  1. misifusa said,

    Well said…

  2. mkyannon said,

    That was so beautiful!

    • Thanks hon, hope you’re well!

      • mkyannon said,

        Hi Kiim, I saw that there is an event for autism at D’Jais in Belmar on May 6th. I don’t know if you heard about it, but I was wondering if you were going. It is right down the street from us, so I might stop by if you are going to be there. Keep me posted 🙂

  3. Mom said,

    Loved it!

  4. Shivon said,

    Another beautifully written blog and I happen to think that he is devastatingly handsome as well 🙂

  5. Beautiful, beautiful post! And a gorgeous son (inside and out!) that you have there!!
    I’m a new follower, come say hi & check out my giveaways for Autistic parents (one up now and another coming soon) @ ModernMomRedefined.blogspot.com

  6. Martha said,

    My emotions after reading this post are mixed. I am a mother of three, my oldest nine, the youngest 6. My middle son is severly autistic. I chuckled when I read about peoples reactions to your sons beauty.. We too have heard similar statements throughout the years. I’ve chalked it up to people don’t know what to say. My husband and I also do the best we can. Some days are easier most are difficult. I wish my level of peace was as strong as yours. I feel such a sense of loss for my son. I do not believe autism in any way has made our lives better. I no longer believe in “cures” and have accepted the idea of how severe his autism really is. Most individuals will never understand what it’s like living with a child with autism. I accept that. However, I try hard to remain positive but at the same time sharing (when appropriate) just how hard life is for every member of our family. I feel it is tragic and sad.

    • Thank you for sharing, and for taking the time to write such a thoughtful response. To be honest, the only thing I’m at peace with is the fact that I’ll never completely be at peace with Justin’s form of autism, and that this is an okay place to dwell. It took me years to understand that I could live in that gray area, and still be happy. I’ve gotten to a place where I feel that if my son is happy, or as happy as it’s possible for him to be, then I need to let go of the plans I had for him, and try to be grateful he takes such joy in the world. I know I’ll never fully be at ease with a disorder that makes him vulnerable for the last half of his life, since I won’t always be around to protect him. Most days, I’m just like you- trying to remain as positive as I can, while attempting to make as many people as possible understand the difficulties of having two children on the spectrum.

      Thank you for reading this, and for contributing your thoughts!


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