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