"Don't judge any man until you have walked two moons in his moccasins" is an old Native American Proverb. Maybe you have heard the White Man's revised version of "Never judge a man until you have walked a mile in his shoes." Not only did the White Man change the Native American wording, we changed time to distance (along with taking all the Native Americans' land, forcing them onto reservations and killing off their beloved buffalo...White Man kind of sucks). Two moons equals approximately two months where as a mile equals 1,760 yards (totally had to look that up, sorry to disappoint you). Regardless if it's time or distance, the proverb basically means until you have spent enough time or traveled far enough with a person, you can't fully understand their "shoes", so don't judge them. Although I agree with this wholeheartedly, I wonder what gives anyone the right to judge anyone else, regardless of the kind of shoes they are wearing?
I am not a moccasin kind of girl, I feel like they are basically slippers that you can wear outside, to the grocery store, or heaven forbid, to the mall with your teenager....without makeup....and singing....out loud. No, I may have never walked a mile or two moons in your moccasins, because AWEnestly, I'm really not a fan of outdoor slipper wear (even though I'm sure my feet would appreciate moccasins over heels or wedges any day). Regardless of the style of shoes we wear, if you have a child with an Autism Spectrum Disorder, chances are good we have worn our own separate shoes in our own unique size, but, I'm betting we have the same amount of blisters from traveling a similar path.
Regardless of what kind of shoes you prefer, after you hear the words, "Your child has autism", deciding where to turn next, how many miles you must travel or how many moons it takes you to get "there", wherever the he** "there" is, can be an incredibly lonely, mind numbing feeling. Once the numbness fades and the pain sets in, you just hope that there has been someone who has walked this journey before and you pray they will walk it with you, regardless if they are wearing moccasins, wedges or flip flops.
The day we heard, "Ryan has an Autism Spectrum Disorder....Pervasive Developmental Disorder Not Otherwised Specified (PDD-NOS)" or in other words, High Functioning Autism, I know I did not hear a SINGLE word that kind hearted psychologist said to me after those 12 words settled in my ears and in my heart. I didn't hear all the good things she said about Ryan. I didn't hear that he was sweet and kind, that he was incredibly smart and that he showed compassion and empathy, nope I had stopped listening. I realized in that moment, that all I had feared for Ryan, had come true. And even though Dan was right there beside me, holding my hand and eventually holding me up as I crumbled outside in the parking lot, I had never felt so alone. None of my friends' children had autism. No one in my family had autism. None of the other kids in kindergarten had autism (that I knew of....trust me, you'd be surprised). My other son didn't have autism. Besides Rainman, I didn't know anyone with autism. Where was I going to turn? Who was going to help me, help my son?
After the sobbing stopped and I tried to believe Dan's constant reminder that Ryan was the same little boy he was before we walked through that psychologist's door, I had to figure out, "Now What?" and I'm here to tell you, the "Now What" can be exhausting. The list of Now What's on a psych evaluation can be terribly overwhelming. Find an occupational therapist, get your son a great speech therapist, an experienced Therapeutic Staff Support worker would really help, and on, and on, and on. Don't get me wrong, many psychologists (like Ryan's) give you referrals and recommendations, they don't just shake your hand, take your money and send you on your way, but, according to other parents, some certainly do. I don't believe this is meant to be uncaring, it's just with ASD diagnoses occurring in 1 in 88 kids, not all of these docs have time to hold a mother's trembling hand. What we mother's need, is another mother, wearing moccasins or wedges to guide us on the path that they have already traveled.
I started this blog to tell a story...our story about the way autism has impacted our family....the good, the bad, the funny. The bad usually stems from my lack of understanding and my poor choice in friends, Denial and Clueless which I share with my readers, risking that you may in fact judge me and my wedges. The good comes when I stop listening to those loser "friends" and start listening to my son. This "listening" often does not come from what Ryan says, but in his actions, his struggles, and his joy. Over the years, I have AWEnestly had to become a bit of a detective, trying to decipher clues Ryan gives me without using words. I have enjoyed sharing my detective work with all of you as I have equally enjoyed you sharing your unique CSI skills with me. In a little over 7 months, the blog has gone beyond what I ever imagined, thanks to all of you. Some days telling our story is cathartic, other days it's a 2 glass of wine day to recover from my PTSD due to reliving some of the uglier moments, but I am enjoying every single second of it, so thank you.
In addition to my own therapeutic purging in this blog, I have also created a beautiful love story written for my son that he may one day enjoy when I'm gone (of course, with my neuroses, I think that will be any day now). Although my blog my have opened many readers eyes and hearts to understanding life with autism, through readers' emails, comments and FB posts, my eyes have been opened and what they have seen breaks my heart. Unfortunately, there are still a lot of parents and grandparents traveling alone on this journey over several moons and countless miles and many of them feel lost and alone. I'm hoping with my next turn on my journey (wearing cute shoes), I can guide these families with compassion, experience and knowledge so their journey feels less lonely and they end up with fewer blisters regardless of their choice of footwear.
My most recent path on this autism journey has lead me to start my own advocacy business, entitled AWEnest Advocacy (www.awenestadvocacy.com) in an attempt to reach more families loving a child with autism, but this time through action, not just words. I will wear moccasins, wedges, stillettos and even Crocs...ok, AWEnestly, I won't wear Crocs because, well, they may just be the ugliest shoes ever made regardless of how many cute jibbitz you stick in those ugly holes, because I believe I can advocate for any child with my mind and my heart not my feet. My hope is to help other parents or family members who either are too overwhelmed or too busy taking care of their AWEsome child and his or her day to day needs to find the best resources to enable their child's success. As I have traveled this journey, even in the times I have felt most alone, I was always fortunate enough to have wonderful people who are as passionate about helping these AWEsome kids as I am. I remember a time that I felt so alone and had no idea which way to turn and would have given anything to have someone who has walked in my wedges for two moons or one mile to guide me.
I promise that my blog will remain the same...this will be my one and only shameless plug for my new venture. The blog has rewarded me in ways I had never dreamed of, and that path will not change. I just hope this new path is as equally rewarding. So, as you slip into your moccasins, your wedges or your Crocs (please, please don't) and venture out into another day, remember if the moon is waning or the pedometer is beeping and both you and your moccasins are worn out from traveling so many miles alone, there is always someone out there to grab your hand and guide you. Someone who has traveled this path before. This hand that guides you will not judge your footwear or the turns you have made on your journey, and although the hand that reaches out may not have any fancy letters to support their navigational skills such as PhD, MSW, MD, or PsyD, sometimes the only letters of that outreached hand needed are MOM.
Keeping it real, raw, and AWEnest while laughing, loving and living in our world
touched by Autism.
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Definition of Awe: