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Alone is Alone. Period.

5/25/2016

9 Comments

 
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I am so naive. I pride myself in educating others about autism as a parent of a child with autism yet I myself have so much to learn.

I am neurotypical. I am not autistic. I may have an understanding of what it means to accept and love a different view of the world but I am not, nor will I ever be, a real part of that world. I will always be an outsider looking in. Just like my son will never quite fully be a natural born citizen of the neurotypical world.

But that doesn't mean we will ever give up trying to understand each other's unique view of the world we both were born into.

For hours leading up to Ryan heading out the door to attend his 8th grade graduation dance, I was an anxious hot mess. He was going by himself, not with a date, not with a group. He was walking into a gymnasium full of pubescent turmoil alone. He is braver than any 14 year old boy (or girl) I know.

My mind and my heart raced all day. Would he spend all night alone? Would kids talk to him? Would he feel lonely? My husband told me I needed to "let out Ryan's leash" and I knew he was right. After I watched my teenage boy walk into his 8th grade graduation dance alone, high fiving kids and smiling as he was greeted by classmates, I was relieved that my anxiety was all for nothing. He was fine.

Until hours later when he was not fine and I wanted to hang myself with that leash I let out.

Just minutes after Ryan exited the car for the dance, I sent the above picture of my handsome boy to a girlfriend who knew I was a hot mess all day. Along with the photo, I actually texted these words to her, "My alone is not his alone".

I could not have ever texted more ignorant, careless words.

Autism does not make lonely suck any less. Lonely still hurts. Dancing with yourself is still terribly painful. Wanting to fit in and not having the tools to do that is catastrophic for a teenager, autism or no autism.

As much as I love sharing the details of our journey with you, some things I must keep private out of respect for my boy. Suffice it to say, after he returned home from the dance I was proven wrong with my ignorant words, "My alone is not his alone."

Alone is alone. Lonely is lonely. Heartache is heartache. Period.

And when you want a friend, when you need a friend and you find yourself alone on the dance floor, it hurts like hell. Autism is not a buffer for that pain or any pain.

So, to my beautiful boy, I am terribly sorry for my ignorance. I am sorry that I was so wrong. And like I promised you, as I held all 125 pounds of you in my arms, I will do everything in my power to help others see who they are missing. To help them understand your world all while trying to help you understand theirs.

I hope some day there will be enough acceptance and understanding, enough education and kindness that in time our worlds will be one and we can celebrate all the beautiful differences that make this one world so absolutely perfect.

9 Comments

Fly Baby, Fly

5/17/2016

1 Comment

 
Almost every year, we get a bird's nest either in our hanging ferns on our back porch or on a small bush right next to the porch. As much as I get annoyed at the mother bird always squawking at me for sitting on MY freaking porch, it is fun to peak in at the baby birds and watch how quickly they change. Yeah, I know, my peaking is precisely why mama bird is squawking at my nosy a**.

Those tiny little helpless birds peck through their eggs into a world that is new to them. A world where they are completely dependent on their mama to keep them alive. And those baby birds get louder and louder when they need something to help them survive or thrive like food, water or a swift quick out of the nest when they have stayed too long. 

For such a short while, those little birds count on mama bird for EVERYTHING. The babies are too weak, too little and not quite savvy enough to leave the nest and make it on their own. Over a very short period of time, those birds start to stretch their wings, testing them to see if they are ready to fly and just how far they can make it alone. Then one day, there is silence and as I peak in the nest (keeping an eye out for angry mama) the birds are gone. They have figured it out, so they go it alone and leave mama bird sitting alone on my pool fence. I actually feel kind of sorry for her, until her next nest of birds arrive along with her angry squawk.

As I watched my "baby bird" take the stage last week at his last middle school chorale performance, I couldn't help but think back to those early days, when like all babies, he needed me to survive. To feed him, love him, protect him and nurture him. Just like those baby birds, Ryan's cries were necessary to let me know he needed something, but, I couldn't always decipher what that something was and I felt as helpless as mama bird on my fence not knowing what to do next.

The difference between my baby bird and all the other birds his age, was that my baby held onto mama much longer than all the other birds flying around the neighborhood. For Ryan, the world outside the nest was scary and confusing, so it was much safer to stay than it was to go. So, I had no problem holding him tight and keeping his wings clipped.

Just like that annoying mama bird squawking, hovering and being a wee bit overprotective of her almost ready to take flight youngins, I may be guilty of trying to keep Ryan in the nest longer than necessary. I justify my hovering by wanting to protect him from all the predators and inherent dangers in the world. A world that is somewhat harder for him to navigate and land safely. I'd be lying though if I didn't confess that part of my reason for such protective hovering and squawking is I fear the day I too am alone on the pool fence with an empty nest mocking me. 

As I watched Ryan cross the stage last week and find his place, he quickly scanned the audience for his mama bird. When our eyes met, he beamed. Ryan no longer needs me like he once did, the nest continues to get quieter and quieter (unless of course he is singing his head off to some Coldplay song in his bedroom), but, it's nice to know I am still sitting on the fence not far away if the world gets too big or scary. Ryan knows that no matter how far he flies, if his wings get tired and he needs to rest, he knows where he can safely land.

Watching Ryan approach the microphone for his brief solo, he no longer resembled that scared baby bird who was afraid to fly without me. He was confident, strong and his song was beautiful, and in that moment I knew that no matter where he goes, I will always hear him, even when perched alone on the pool fence.

High school will bring new adventures, new rewards, and new struggles, but, I have been watching Ryan stretch his wings for years and I know that when he is ready to fly, this little bird will soar beyond his mama bird's wildest dreams. I just hope he throws me a worm from time to time as I happily sit on the pool fence watching and protecting from afar.
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Waiting to sing his song and spread his wings.
1 Comment

Good With Words

5/4/2016

1 Comment

 
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He is trying. He is trying so hard. I swear I can almost see him searching through the files in his brain. "Nope, not the animal file. Nah, don't need the people file. Certainly not talking to Mom about anything in the Minecraft file. Uggh, I'm just trying to find the school file! I know it's in here somewhere!"

These files of his seem to be scattered in no particular order which makes retrieving the information found within the files an arduous task. More often than not, he gives up, but, on this day, he kept searching. As the words scrambled and cluttered on his tongue, I reminded him to take his time and that I wasn't going anywhere. Ryan finally found the school file and shared what happened in school with me. Then, exasperated by his efforts, he looked out the window and sighed, "I'm not very good with words". 

I very quickly assured him that I think he is AWEsome with words. I reminded him how amazing his brain is and how quickly his amazing brain can find just the right words from just the right movie, television show, or Youtube video and make those words fit just the right conversation. I told Ryan that although my brain files seem to be more orderly and "words" seem to come more easily for me, my brain can barely remember what I ate for breakfast that morning let alone a just right, perfect script for a conversation.

We each our good with words, in our own unique way.

Ryan didn't look convinced. I wanted him to understand that even though he may have heard those words somewhere else, they are still HIS words and part of HIS communication and that he is indeed "good with words". So, I gave him some perfectly AWEsome examples.

Hey buddy, remember when.... 

We were driving around Grammy and Pappy's town looking at all the old Victorian Era mansions and I was "oohing and ahhhing" over the size and in your best Shrek voice you said, "Sure it's big enough, but, look at the location" and we all laughed until we cried (you included). Your words were so good that Mommy almost wrecked the car into one of those Victorian mansion's fences which wouldn't have decreased the value of the mansion since according to you (and Shrek) it's all about location, location, location. 

He smiled. A little.

How about the time we were eating dinner and I asked you if you liked the cake I made for dessert and in your near perfect Cousin Eddie (Christmas Vacation) impersonation, you shouted, "This is goooo-oood", again finding just the right words at just the right time.

He smiled again. Bigger.

What about the time at the beach we couldn't decide where to eat dinner and we wondered what you were hungry for and suddenly Jim Carrey's Fire Marshall Bill appeared in the car with a "He's cooking fishsticks" and we knew just what you wanted to eat. Those were good words that made us all giggle. 

He laughed. Quietly.

My favorite was when we saw a rainbow and Emma said, "water plus sun equals a rainbow" and you piped in "Rainbows are a result of refraction of moisture and light in the air" and you sounded just like your favorite cartoon character at the time, Gumball. Those words were so good Emma and I had no words (that never happens).

He laughed. Louder.

And I know you were too little to remember this, but, once when we were snuggling in your bed, you wrapped your arms around me, and your words were so good that they went straight from my ears to my heart, "I wish you were a human that could live a thousand years." They were your words and they were beautiful. You are good with words Ryan.

He grew silent. Again.

Worried, that I had not proved my point, I continued with more and more examples of times that he was good with words and how those words, those scripts, were his way of communicating and that my words are no better, no more effective, than his.

Ryan perked up. He sat up higher in his seat. Then suddenly it seemed as though his brain files had order. Ryan gave me this script and that script. He used this voice and that voice. He smiled. He laughed. He believed.

As we approached the house, knowing the ride and this conversation were quickly coming to an end, Ryan never said, "Thanks Mom, you are right, in my own way, I am good with words", but, he didn't need to because his smile and his Fire Marshall Bill voice as he opened the door and yelled, "let me tell you something" said it all. 

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He often remains silent, but, when he breaks that silence, his words are so good.
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    Definition of Awe:
    "a mixed emotion of
    reverence, respect, dread and wonder inspired by authority, genius, great
    beauty, sublimity or might." Yep, someone should have consulted a mom 
    before
    spelling AWEtism.

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