Minecraft Camp and Music Camp and Chorale Auditions, oh my! These three things may not freak Dorothy out as much as lions and tigers and bears, while creeping through the forest en route to find the Wizard of Oz, but, this mom was mumbling a lot more than, "oh my" while anxiously walking among the buildings of college campuses this summer.
Regardless of my anxiety over what I might run into, when summer time rolls around, I have to find something for Ryan to do otherwise he would wind up with bed sores from lounging on his bead and he would be in search of a brain just like the Scarecrow when school rolled around again. And since I'm not a very good doctor mommy, a bloody nose makes me woozy, I'm sure my weak constitution wouldn't fair well with nursing bed sores, so I sign my boy up for camp after camp. And although there is nothing particularly scary about summer camp in general, that A Word can make a summer time walk in the park feel like a walk through a lion, tiger and bear filled forest alone, at night, wearing a tshirt that reads, "I taste good".
Yeah sure, when it comes to summer camps, there is the fear of the unknown, the fear of what is lying around the bend. There is the "I don't know what to expect" fear that worries Ryan more than a pack of hungry lions. There is also the "what will he eat for lunch and please God say a packed lunch is allowed" that worries me more than innocently getting between a mother bear and her cub. However, what causes me the most anxiety, what makes me feel like a lost, tasty treat alone in the forest, is to tell or not to tell.
Regardless of my anxiety over what I might run into, when summer time rolls around, I have to find something for Ryan to do otherwise he would wind up with bed sores from lounging on his bead and he would be in search of a brain just like the Scarecrow when school rolled around again. And since I'm not a very good doctor mommy, a bloody nose makes me woozy, I'm sure my weak constitution wouldn't fair well with nursing bed sores, so I sign my boy up for camp after camp. And although there is nothing particularly scary about summer camp in general, that A Word can make a summer time walk in the park feel like a walk through a lion, tiger and bear filled forest alone, at night, wearing a tshirt that reads, "I taste good".
Yeah sure, when it comes to summer camps, there is the fear of the unknown, the fear of what is lying around the bend. There is the "I don't know what to expect" fear that worries Ryan more than a pack of hungry lions. There is also the "what will he eat for lunch and please God say a packed lunch is allowed" that worries me more than innocently getting between a mother bear and her cub. However, what causes me the most anxiety, what makes me feel like a lost, tasty treat alone in the forest, is to tell or not to tell.
The camp packet comes in the mail in a very innocent looking brown envelope. Nothing scary at all about that. I open the envelope without so much as a drop of blood from a paper cut and I begin filling out the form.
Name:
Address:
Telephone:
Grade:
Emergenct Contact:
Easy breezy. Nothing to worry about. Then there it is. I swear the font is bigger and bolder and shoutier.
SPECIFY ANY OF YOUR CHILD'S HEALTH PROBLEMS:
It seems like this should be easy too, right? I mean, Ryan does not have any health problems. He has no food allergies, asthma or any type of medical condition. He does not take any medication, there is no need for an Epi Pen or an inhaler. There is nothing I need to tell the camp staff...or is there? The camp form does not ask, "Does your child have a neurodevelopmental disorder?". There are no questions like, "Does your child struggle with social interaction?" or "Does your child have communication difficulties?" or "Does your child have an abhorrent fear of bugs?". Nothing.
As I look at the questionnaire wondering why they don't include something that makes completing this section of the form as easy as "Emergency Contact" I feel my anxiety creep up on me as silently as a lion ready to pounce. I do NOT want autism to define Ryan, so I don't want to have to tell every single person he meets that he is autistic. However, if I don't tell, I know that can lead to other misperceptions, some worse than the misperception of what The A Word actually means.
Name:
Address:
Telephone:
Grade:
Emergenct Contact:
Easy breezy. Nothing to worry about. Then there it is. I swear the font is bigger and bolder and shoutier.
SPECIFY ANY OF YOUR CHILD'S HEALTH PROBLEMS:
It seems like this should be easy too, right? I mean, Ryan does not have any health problems. He has no food allergies, asthma or any type of medical condition. He does not take any medication, there is no need for an Epi Pen or an inhaler. There is nothing I need to tell the camp staff...or is there? The camp form does not ask, "Does your child have a neurodevelopmental disorder?". There are no questions like, "Does your child struggle with social interaction?" or "Does your child have communication difficulties?" or "Does your child have an abhorrent fear of bugs?". Nothing.
As I look at the questionnaire wondering why they don't include something that makes completing this section of the form as easy as "Emergency Contact" I feel my anxiety creep up on me as silently as a lion ready to pounce. I do NOT want autism to define Ryan, so I don't want to have to tell every single person he meets that he is autistic. However, if I don't tell, I know that can lead to other misperceptions, some worse than the misperception of what The A Word actually means.
If I don't tell, when he doesn't make eye contact, will they think he is not interested and that he does not care to be there? If I don't tell, and it takes him longer to respond to a question will they believe he is ignoring them or that he is rude and disprespectful? When he eats lunch alone will they believe he thinks he is better than everyone else and perceive him as standoffish? If I DO tell, will they put him in a box, a box filled with preconceived notions, misperceptions and ignorance and close the lid on him. AWEnestly, I think I would take a pack of lions and tigers and bears. Oh my.
You know when you are walking alone in the woods and you hear the underbrush crunching and imagine the worst, like a 250 pound hungry black bear heading straight for you, your adrenaline starts pumping and you prepare yourself for some terrifying encounter. As your palms get sweaty and you can feel your heart pounding through your sweat soaked tshirt, you begin forumulating a plan of what you should do first when the bear attacks with it's snarling growl bearing his razor sharp teeth. Then, in an instant, your plans are foiled and you realized you worried for nothing when a 3 pound squirrel leaps onto the path in front of you and scurries away believing you are the scary bear. Yeah, that. My fear of to tell or not to tell was as scary as a 3 pound squirrel and the fear was taken out of my hands by the only person who could.
You know when you are walking alone in the woods and you hear the underbrush crunching and imagine the worst, like a 250 pound hungry black bear heading straight for you, your adrenaline starts pumping and you prepare yourself for some terrifying encounter. As your palms get sweaty and you can feel your heart pounding through your sweat soaked tshirt, you begin forumulating a plan of what you should do first when the bear attacks with it's snarling growl bearing his razor sharp teeth. Then, in an instant, your plans are foiled and you realized you worried for nothing when a 3 pound squirrel leaps onto the path in front of you and scurries away believing you are the scary bear. Yeah, that. My fear of to tell or not to tell was as scary as a 3 pound squirrel and the fear was taken out of my hands by the only person who could.
As Ryan walked away to audition for his place in the choir at music camp, I felt the eyes of the teacher on me. I swear, I could feel his breath on the back of my neck, he was that close. All I had to do was pull this teacher aside and quickly tell him, "Oh, by the way...", but, I didn't, because Ryan quickly hugged me and blended in with the swarm of teenagers buzzing down the hallway leaving me alone in the woods with nothing, but, my own anxiety and my own preconceived notions about how Ryan's autism may impact his week at camp.
The moment to tell had passed and all I could do was sit and wait...and text my best friend who talked me out of the woods. I texted, "He just walked down the hall with a bunch of kids...without me. I didn't tell the faculty staff member who is conducting the auditions about The A Word. I hope I didn't need to." (Insert worried faced emoticon here). My friend texted back three words, "Maybe you won't". And guess what, she was right.
I did not need to tell and not because autism disappeared that day and not because Ryan decided to tell the teacher, "I have autism", but, because the teacher could tell...on his own. After the auditions, I saw the teacher coming at me like that bear in the underbrush, I heard the crunching of sticks and I wanted to run, afraid of what he might say. The teacher apporoached with a smile and looked harmless enough when he said, "Are you Ryan's mom?" "Yes", I smiled proudly while holding bear spray behind my back...just in case. The teacher then showed me his clipboard and next to Ryan's name he had written "aut?". I smiled and nodded yes. At first, I admit, my heart fell, that "aut" was so obvious. Then, when this no longer scary looking teacher said to me, "He has a beautiful voice. What a gift to have such a beautiful tenor voice at such a young age." I dropped the bear spray.
As always, Ryan taught me that day. Although I am the one who advocates, who blogs, who preaches from the roof tops, "different, not less" sometimes I worry so much about different, I get lost in the woods, scared and alone waiting for the worst. Until this beautiful boy with his beautiful mind finds me and reminds me that I have nothing to fear. To tell or not to tell will still worry me, and leave me second guessing what I should do, but, last week proved to me that sometimes I don't have to say a word.
Ryan is comfortable with who he is and if people can "tell" that he has autism that's ok. People can also tell when he sings that he has a beautiful voice. People can tell he is kind by the way he smiles. People can tell that he is smart by the work he does at school. As Ryan quickly approaches 14, it is not my job to tell all the time, he is learning to advocate and speak for himself. And he will be the first to tell, that autism does not, and will not, define who he is and where he is going.
And just like Dorothy, on her quest to find the great Wizard of Oz, I believe Ryan will use his courage, his heart and his brain to make his own path to get wherever he chooses to go. He will not let lions and tigers and bears and autism get in his way, no matter where he is heading. However, since old habits die hard, I will pack Ryan some ruby slippers and bear spray....just in case. Oh my.
The moment to tell had passed and all I could do was sit and wait...and text my best friend who talked me out of the woods. I texted, "He just walked down the hall with a bunch of kids...without me. I didn't tell the faculty staff member who is conducting the auditions about The A Word. I hope I didn't need to." (Insert worried faced emoticon here). My friend texted back three words, "Maybe you won't". And guess what, she was right.
I did not need to tell and not because autism disappeared that day and not because Ryan decided to tell the teacher, "I have autism", but, because the teacher could tell...on his own. After the auditions, I saw the teacher coming at me like that bear in the underbrush, I heard the crunching of sticks and I wanted to run, afraid of what he might say. The teacher apporoached with a smile and looked harmless enough when he said, "Are you Ryan's mom?" "Yes", I smiled proudly while holding bear spray behind my back...just in case. The teacher then showed me his clipboard and next to Ryan's name he had written "aut?". I smiled and nodded yes. At first, I admit, my heart fell, that "aut" was so obvious. Then, when this no longer scary looking teacher said to me, "He has a beautiful voice. What a gift to have such a beautiful tenor voice at such a young age." I dropped the bear spray.
As always, Ryan taught me that day. Although I am the one who advocates, who blogs, who preaches from the roof tops, "different, not less" sometimes I worry so much about different, I get lost in the woods, scared and alone waiting for the worst. Until this beautiful boy with his beautiful mind finds me and reminds me that I have nothing to fear. To tell or not to tell will still worry me, and leave me second guessing what I should do, but, last week proved to me that sometimes I don't have to say a word.
Ryan is comfortable with who he is and if people can "tell" that he has autism that's ok. People can also tell when he sings that he has a beautiful voice. People can tell he is kind by the way he smiles. People can tell that he is smart by the work he does at school. As Ryan quickly approaches 14, it is not my job to tell all the time, he is learning to advocate and speak for himself. And he will be the first to tell, that autism does not, and will not, define who he is and where he is going.
And just like Dorothy, on her quest to find the great Wizard of Oz, I believe Ryan will use his courage, his heart and his brain to make his own path to get wherever he chooses to go. He will not let lions and tigers and bears and autism get in his way, no matter where he is heading. However, since old habits die hard, I will pack Ryan some ruby slippers and bear spray....just in case. Oh my.
Can you tell?
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