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"He's Fine Mama"

6/18/2015

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Selfies. They are for the young at heart and the young at (wrinkle free) skin. In other words, not for me. I can't tell you how many times I have grabbed my phone to snap a pic and the camera, thanks to my darling wrinkle free faced, selfie taking children, is reversed to selfie mode so I look at the phone and BOOM there it is, my 46 year old reflection six inches from my face. I swear I have screamed and dropped my phone (twice). Who it THAT? What happend to that young at heart, wrinkle free, firm skin, crease-less browed girl I use to know? I think she can be found in old Polaroid Intamatic photos from the 1970's. Sigh.

Yes, the older you get, the less you recognize that reflection in your iPhone, iPad or mirror. Is that because how we see ourselves in our mind is not really what reflects on that high grade iPhone glass or are we just are worst self critics? Perhaps it's just our old friend Denial playing tricks on us by replacing that high grade iPhone glass with some distorted, age advancing glass? I'm going with Denial...as I so often do.

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I've always been a bit envious of my husband Dan and his reflection. Not only is he eight years older than me, but, he also happens to look eight years younger than me which makes me hate him...a little. You know the old, haggard looking woman versus the distinguished looking man phenomenom? Yeah, that. So unfair. Let these guys push out an 8 pound baby or two or three and see how "distinguished" they look then.

Although I think Dan is remarkably handsome (and I love/hate him for it), it's not so much his "distinguished" looks that I envy most about my husband's reflection, it's his ability to see a fragment of our 13 year old son in himself when he looks in the mirror (Dan doesn't do selfies or iPhones so he only sees his reflection in mirrors). A son who I would give anything to resemble me in the slightest. A son who I have spent 13 years trying to understand, trying to "get". A son who someday when the iPhone 15 comes out and is able to capture what a person looks like on the inside, will look remarkably like my husband and nothing at all like me. 

Ever since Ryan was little and I obsessed and Googled over does he or does he not have The A Word, Dan would shrug off my obsessive worry and tell me, "he's fine". The word "fine" started being almost as vulgar to me as those other two F words..."friends" and the one that rhymes with truck. How could Ryan be "fine"? He spent so much time alone, his sensory system was constantly on overdrive and even though he was completely verbal, he had very little to say. "Fine" was not what I saw, but, my husband did.

My huband saw "fine" because he saw Ryan each and every time he glanced in the mirror at his own reflection. Dan understands that an overloaded sensory system can make you edgy and crabby. He understands that a quiet night by his firepit with only the joyful singing of crickets buzzing in his ears is better than an overcrowded, loud party with multiple conversations buzzing in his ears. Dan also understands that just because you can speak, doesn't mean you have something to say. Mostly though, my husband understands Ryan, in a way I never will. When I realized this, when I understood that Dan would always have a connection with Ryan that I wouldn't, it kind of made me want to slap him in his distinguished looking 54 year old face.

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Dan does not have an autism diagnosis, but, his reflection resembles Ryan's more than mine ever will. They are cut from the same cloth and both of them would tell me that they did not come from cloth. Ryan would not understand the idiom, Dan would understand it, he would just think it's a ridiculous thing to say. Father, son, similiar reflections. And this is why, coming from that same cloth (so, what if I'm ridiculous) through every new challenge, through every new stage, through every new heartbreak Ryan has endured, Dan has assured me, "he's fine Mama".

On many occasions, the words, "he's fine Mama" would be followed by, "look at me, I'm fine" which made me want to slap that 8 years younger looking reflection again. I appreciated that Dan saw Ryan in his reflection, but, Ryan's reflection was still different, his struggles greater. Back when Denial and Clueless were still my best friends, I wanted to help Ryan "overcome" his autism. First step, a listening therapy program that cost about $6,000. Dan resisted for awhile because, "he's fine", but, eventually I wore Dan down. At the time it seemed like the therapy helped, and maybe it did, but, now years later, I can't help but wonder if Dan was right, that with or without the therapy, Ryan "is fine".

Just last week, when a painful friend experienced happened for Ryan, I found myself crying in Dan's arms and hearing those words again, "he's fine Mama". Dan assured me that Ryan is "finding his way" and although it has always taken him a bit longer than other kids his age, Ryan finds his way and he always seems to be "fine". Just like I hate that Dan doesn't look his age when I see his reflection in our shared bathroom mirror, I typically hate when he is right (because inevitably that means I am wrong), but, there is no hate, there is no cursing him under my breath, there is only a little bit of envy and a great deal of love and gratitude when it comes to seeing himself in his son.

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Selfies may be for the young at heart, those who are not terrified when they see their reflection up close and personal, but, sometimes it's still fun to jump on the younger generation's trend. And just like Ryan (who also despises selfies as is evident in this pic where he is shooting my iPhone), Dan could care less about what's trending what's in, or what EVERYONE is doing, but, for someone like me, someone whose reflection is so different than both of theirs, I like the occasional selfie....with a nice blurring, dimming filter. 

It's fun to drag my husband into one of my selfies every now and then while he grumbles and complains about it. For him it may be ridiculous, narcissistic and trendy, but, for me, having his eight year younger looking face next to mine (still hate him a little) is a reminder of how much harder this autism journey would be on my own, without his reflection in my iPhone.

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Selfie stick would totally come in handy, especially after age 40.
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Things That Went Bump in the Night

6/11/2015

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As a kid, I routinely checked under my bed and in my closet before going to bed at night. I'm not sure what I was afraid I'd find or what I would do if I found "it", I just knew that checking in those places and not finding "it" decreased my chances of hearing something go bump in the night. This inevitably lead me to a much more peaceful night's sleep.

As an adult, I no longer check in my closet, peek under my bed or quickly fling open the shower door, baseball bat in hand, for things that go bump in the night. However, once I heard the word autism, The A Word seemed scarier than anything I ever worried about as a child. The funny thing is, the fear was the same. Whether it was the fear of what was lurking in my closet or what was lurking in my son's future, it was the fear of the unknown that kept me from closing my eyes as I lay alone in the dark. The A Word was not the scary "it" that I feared would jump out from under my bed as a child. No, The A Word was the fear of "different" rattling inside my head that kept me up at night.

It took years for my fear to subside, to stop looking for autism under the bed and in the closet and to just see my son. I wish nothing more than to get those years back. To reassure my scared self with the same comforting words my mother use to say when I was a child to ease my fears, "there is nothing to be afraid of" or "it will be ok", but, I think I had to live through those fears to overcome them. I had to worry to appreciate. Sure, every now and then, the "what if" monster creeps back inside my head, but, when he does, I know my best defense is to look at my son and remember what use to be scary was nothing more than my lack of understanding, my lack of awareness, and my worry that different meant less.

One bump in the night that use to make me pull the covers over my head was scripting. I would lay awake fearful that Ryan couldn't tell me about his day, couldn't tell me he felt sick, but, could recite a thirty minute Thomas the Tank Engine Video from beginning to end. I worried not only about my own fears of this particular "bump", I worried that the scripting would make others anxious too. What will people think when he talks like Austin Powers or The Grinch? Will they disregard him? Will they think he's "too different" and not try to understand him? Will they see autism and not him?

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Scripting no longer hides in the shadows waiting to jump out and scare me because now I know there is nothing to fear. Ryan scripts to communicate and to soothe himself when things go bump in the night for him. After a tough day, the scripting coming from the shower gives me a sense of peace that the storm has passed. Funny, how for a period of time when I didn't understand, when I was afraid, the scripting use to feel like the storm and now it's like a compass that guides him back to safe shores and puts my worried heart at ease.

Perseverating was another bump that use to freak me out. Why does he play with the same toy, press the same button, make the same noise over, and over, and over again? How can he watch the same episode of Gumball over, and over, and over again without wanting to scratch his eyes out? Peserverating may not make sense to me, but, it makes perfect sense to Ryan. I have learned not to fear it, but, to embrace the intensity of his focus that comes with perseveration. Such focus has made Ryan a wonderful pianist and vocalist and one day it may lead Ryan to solve problems or develop a solution that others can't see because they give up, are distracted, or just don't care enough. 

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When the perseverating and the scripting no longer kept me awake at night, the fear of new clothes did. The change of seasons use to freak me out almost as much as the Boogeyman. Ryan's sensory system was so, well....sensitive, that every new item of clothing was a form of torture for him. Putting on stiff, scratchy jeans after wearing silky, satin shorts all summer long was too much for his system to take. Then you add a stiff winter coat, and my poor boy walked around like Randy from A Christmas Story ("I can't put my arms down!"). Ryan now wears a collared shirt and a tie when performing with his chorale ensemble. There are moans and groans coming from behind his closet door as he pulls the dreaded clothes out, but, he puts them on and it's not the least bit scary anymore.

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Without a doubt, the scariest bump that I feared night after night was lack of eye contact. Why does he look away? Why doesn't he see me? Why do I only get a glimpse inside that beautiful soul? My fear that Ryan didn't "see me" that he wasn't listening was as unjustified as my stuffed animals coming alive at night (Thank God Toy Story wasn't created until after I grew up). I understand now that the eyes are too powerful and too confusing for Ryan, but, he sees and hears everything. He has told me, "If you want me to listen to you, then I can't look at you" and now I understand that is nothing to fear.

When I first heard The A Word, I was terrified. It made all the fears I had as a child seem ridiculous (except those toys coming to life, thanks Buzz and Woody for validating that one). The checking and double checking for "it" under the bed and in the closet may have helped prepare me for The A Word. I realize now that yes, the unknown is scary, the unknown can jump out at you when you are least expecting it, but, checking behind closed doors and under beds for what you can't see, really doesn't help eliminate that fear. What does help with the fear of the unknown, is focusing on what is known, what you can see, what is here and now because that my friends, is nothing to fear.

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The things that went bump in the night, even a shirt and tie, weren't so scary after all.
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Apples and Oranges

6/3/2015

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I grew up across the street from what I deemed my "second family". This family built a house right across the road when I was four years old. My family had five girls, their family had three girls. We were never at a loss for doll babies, Barbies and tea cups. I practically lived at their house, when they weren't living at mine.

Even though I was young, I remember the first time I met what would become my "second family" on their grandparents' farm, which was "up the lane" from my house. As I have aged and my memory has been inundated with Spongebob's cackle, Dora's Spanish lessons, and teeny bopper show laugh tracks, I don't remember too many details of that first meeting all those years ago. Long forgotten are such specifics as what the girls were wearing, if they had lost any baby teeth yet, if they were nice, shy, or funny, but, one memory that is still engrained in my aging brain, is the image of their father. Yes, even after years of Spongebob, Thomas the Tank Engine, Dora, and the Teletubbies, my brain can still see him on the wooden porch smiling and sitting...in his wheelchair and I'm sure like any child, I stared. 

Although I had been raised properly and told not to stare at people's differences, I'm sure I did. It was the first time I had ever seen anyone missing limbs and in a wheelchair and like most children, I did not do everything I was told. Sadly, even though adults know better, sometimes they don't do as they are told either. And sometimes their words, their actions hurt.

My neighbor was a war hero who lost both legs in a trench in Vietnam. Prosthetics have come a long way in the past 40 years. Back in the 70's there were no fancy, high tech, bionic looking legs that could be covered with a pair of pants and a matching shoe, so, many disabled vets returned home from Vietnam in wheelchairs. Their differences, their "disabilities" visible for all to see.

Even as a child, it didn't take me long to realize that there was so much more to my neighbor than his wheelchair. His disabilty paled in comparison to his abilities. After awhile, I no longer saw the wheelchair, I only saw him.

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Perhaps that experience at such an early age taught me to look past my son's autism, past his "disability" and see him. Trust me, I'm perfectly aware that an autism diagnosis, a pervasive developmental disorder, is not the same as a physical disability. That's like comparing apples to oranges, but, believe it or not, some folks like to compare. They can't tell the difference between an apple and an orange, or at least they don't care enough to look past the labels and see anything other than two round fruits. So, before you start blasting me about comparing my neighbor's struggles to my son's struggles and telling me "that's like comparing apples to oranges", well, you are preaching to the choir. Unfortunately, not everyone is sitting in the choir with me.

Not long ago, when I was discussing Ryan's autism and a particularly bad day he recently experienced, someone (who happens to be familiar with the physical difficulties a person in a wheelchair endures, but, takes little time to understand autism), said to me, "I don't really feel sorry for Ryan. At least he's not in a wheelchair." Wow. 

I was initially dumbfounded and mumbled something like, "you can't even compare the two". Looking back, I wish I would have had an apple or an orange (wouldn't have mattered at all) to shove in their mouth and said all of this....

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First and foremost, Ryan does not want anyone's sympathy or pity. Most days he is happy in his own skin. Second, just because Ryan's disability isn't visible, just because you don't see it, doesn't mean it doesn't exist. This invisible disability doesn't make Ryan's difficult times any easier or his heartache any less just because you can't see it or because "he isn't in a wheelchair". Apples to oranges.

Yes, Ryan can easily jump up and sprint down our stairs (he actually sort of crashes down the stairs) when it's time for a few Vanilla Oreos without any special accomodations in our home. However, Ryan does need accomodations when it comes to learning at school because although he "looks fine" his brain processes information differently.

Ryan has two perfect working legs that can walk, run, and jump. He is strong and more than capable of running away from the bully in the school yard. Yet, when Ryan was being bullied for two years, due to his language deficits, he was unable to find the words to tell me.

Although Ryan could physically run up to a group of friends on the playground and say, "Hey guys, want to play some basketball?", he doesn't and chances are pretty high that he won't. Communicating with friends and initiating a conversation is very difficult due to the way autism impacts his social skills and his social awareness.

Even though Ryan is big enough and strong enough to knock over several defensive lineman and could physically become an outstanding football star, he won't. The pads, the equipment, the shouting and even the grass are too much for his overloaded sensory system to handle.

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Yes, autism does make some things more difficult for Ryan, but, there are so many more things that come quite easily to him. I know that, Ryan knows that and we are both incredibly grateful. We both recognize that there are others who have struggles far greater than Ryan. We do not compare apples to oranges.

An autism diagnosis may be a disability that you can't see, but, for Ryan, that's ok because just like anyone with any type of disability, be it an apple or an orange, Ryan wants you to accept him, to see him and to see his abilities and not his disability.

Yes, sadly, sometimes even adults "don't know better" and they say ignorant and hurtful things. I'm sure just like Ryan, my neighbor had heard his fair share over the years. 

And although my neighbor may have spent the past 45 years with a disability which required a wheelchair to get through life, that did not keep him from living. He may have gone through most of his adult life unable to stand on his own, but, his abilities, his successes and his happines stand for themselves. The proof lies in the faces of his beautiful children, grandchildren and great grandchild. I bet none of them see the wheelchair either.

When it comes to disabilities, comparing one disability to another is truly comparing apples to oranges. An apple is an apple. An orange is an orange. If all you ever concern yourself with is what those fruits are labeled and how they look on the outside without bothering to take the time to see what's on the inside, then you will miss the incomparable essence of them both.

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No apple, no orange...just Ryan.
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