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If the Shoe Fits.....

6/19/2014

1 Comment

 
PictureThat 70's Show
I have been less than pleasant this week. My poor kids, especially Kyle who is a hardcore That 70's Show fan, and thanks to the magic of On Demand, Kyle, has repeatedly witnessed the way hormones wreaked havoc on poor Kitty as her heart desperately tried to cling to her youth while her body came crashing into menopause. Kyle knows what's coming, he just hopes my ovaries don't give out until he is in college. I'm not saying I am going through "The Change" just yet, but, with fewer and fewer pleasant days each month, change is frighteningly, just around the corner. And like Ryan, with some changes and some things that are new, I dig both feet in clinging to the comfort of the good old days.

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Just yesterday, Ryan and I were both fighting change. As I was helping him stuff his feet in his two sizes too small shoes, a battle ensued over new shoes and I could feel the hormones raging to the surface. That one vein in my neck started pulsating and there was a tightness in my chest that fortunately was not a sign of an impending heart attack (I did check for tingling in my left arm though), it was a sign of a hormonal volcano ready to blow. "YOU HAVE TO GET NEW SHOES THAT FIT! THIS IS RIDICULOUS!", I bellowed (in shouty capitals).  With an equally shouty voice, "You sure are mean and grouchy...all the time", Ryan said, to which I replied, "Yeah, well, if the shoe fits...". Ryan looked at me incredulously and said, "THE SHOE DOES FIT, THAT'S WHAT I'VE BEEN TRYING TO TELL YOU!". Oy vey.

Ryan has needed new shoes for months. Every time I help him tie his shoes, I check his toes and say, "You need new shoes dude." and he says, "No, I don't, this shoe fits." The shoe doesn't fit...at all, but, with all the progress Ryan has made, all the road blocks he has overcome, all the fears and anxieties that have been left in the past with my youth and properly functioning ovaries, new shoes are still very trying for him. Old shoes that "fit like a glove" and are scrunching up his toes are more comfortable than the unfamiliarity, the stiffness, the not yet broken in discomfort of new shoes. New shoes feel different, they wear different, they look different, they are not the same as old shoes. 

As a woman who literally trembles with excitement when the UPS man drops off a new Zappos box, Ryan's fear of new shoes is sad and unfathomable to me. I love new shoes and like most women, I sacrifice comfort for fashion and sometimes the shoe doesn't fit, but, I still wear it...with band aids, peds, inserts or whatever it takes to be like Ryan, and convince myself that the shoe does indeed fit, even if the shoe feels terrible. Whether it's new shoes, a new activity, or a new experience, new is difficult for Ryan, so sometimes it's easier to hang onto old.
Picture
When we experience something new, we all feel better relying on something that is comfortable, whether it's an old pair of Reeboks or an old habit. I've become glaringly aware of an old habit of mine, that pops up time and time and again when I meet new people, regardless if I'm wearing old comfortable shoes, or three inch heels that I assure myself look and feel good (three inch heels never feel good). As with any new introduction, the first thing people typically ask is, "Do you have any children?" which is then followed by "What do you do?", and that's when I break out the old Reeboks.

After sharing the names and ages of my kids, the "What do you do?" question leads to The AWEnesty of Autism Blog and Ryan's ASD diagnosis. "My son Ryan has an Autism Spectrum Disorder. It's very mild and he is very high functioning." I then proceed to tell this new person about Ryan's GPA, his phenomenal memory, his musical gift, and his AWEsome brain. I want people to see past the label, see past the stereotypes of autism, see past the things Ryan struggles with, and just see him, yet, I continually define him by one more label, "high functioning".
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By quickly relying on my old, comfortable "shoe" of "high functioning" does that somehow make Ryan's autism less? Less what? Less important...less defining...less pervasive... less of a worry? I don't want others to see Ryan as "less" so I constantly declare that he is "more"...more capable, more intelligent, more loving, more gifted...more than just autism. It happens every single time. As Ryan's mother it is my job to protect him, to love him, to make him feel safe and happy, it is not my job to define him, yet, I do...every....single....time. I don't want these new people I meet to make assumptions about Ryan, yet, I make assumptions about them. I assume they will hear The A Word and see Rainman. I assume they will hear The A Word and pity Ryan and me. I assume they will hear The A Word and think "less" so I always define him as "more". 

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What does that say about me? As much as I abhor labels, as much as my friends Denial and Clueless convinced me to wait out The A Word label, I continue to add an additional layer to that label, the label of "high functioning". Maybe it's not to convince others, maybe it's to convince myself. Maybe after years of accepting and understanding how far Ryan has come from yesterday, to where he is today, I still worry about where he will be tomorrow and by assuring others that Ryan is more than autism, I am assuring myself of that too. Maybe in addition to my label of "grouch" and "perimenopausal" another label we could tag onto my head is "hypocrite". Well, if the shoe fits...

My intentions are well intended, even if I screw up from time to time. That's called motherhood. Chances are good that until school rolls around again, I will probably continue to stuff Ryan's feet in shoes that are too small for him, but, I refuse to let others stuff the rest of him in an autism box. A box that is too small for his abilities, his hopes, his dreams. As much as I hate labels and the stereotypes that go along with them, when I meet new people, chances are I will continue with my old, comfortable habit of describing Ryan as "more"...more than autism. 

Does that make me a worried, overprotective mom or a hypocrite or both? "If the shoe fits, wear it" simply means, if it applies, take it to heart. As long as I am educating, advocating and protecting my son, I will continue to wear either one of those shoes regardless if the shoes pinch, rub, or feel uncomfortable. I will continue to describe Ryan as "more" so others never, ever think "less". 

As Ryan and I both anxiously await the next change that comes around, hopefully we will be wearing our comfortable old shoes in order to make the journey a little less blistery. Hopefully, for the sake of my children and my husband, some tread remains on my shoes before The Big Change comes to town so, I can quickly run to the nearest pharmacy for some estrogen in order to make life a little more comfortable for all of us.
Picture
The shoe doesn't fit, but, he still wears it.
1 Comment
Lori L link
6/26/2014 01:27:56 am

I loved your article completely as I too have a son on the Spectrum "high functioning". You cited all my frustrations with my son both personally and how others look at him with that judging eye do now and the future. It 's the most important and stressful position a caring mother could be endure!!

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