Taking off the Training Wheels

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“Pedal faster! Keep the wheel straight. That’s it!”

“You won’t let go?” I asked her.

“No. I’ve got you.” She said, but something in her voice sounded peculiar to my young ear. I turned my head around, expecting to see her running lopsided behind me while holding the back of the flowered banana seat I was perched on, but she wan’t there. Instead of helping me balance on this contraption, she was on the other side of the vacant church parking lot laughing and clapping!

“Mama!” I cried out in anger and fear.

Her face reflected my fear and she yelled, “Watch where you’re going!”

I crashed in into the shrub-covered fence row before she finished her admonition. I lay there tear-stained and twisted in thorny bracken—my hands and knees bleeding from the painful prickles and pavement. It would be several months before I attempted to ride a bicycle again.

Remembering the difficulty I had in learning to ride a bike, (I finally did, thank you very much) has caused me to put the lesson off as long as possible for my own kids. However, for Christmas two years ago, they both got bikes. I, as the perpetually fearful mom, made certain they came with training wheels. They adored riding them, and I loved that the training wheels kept them upright and scab-free. They soon broke the training wheels and out-grew their bikes, and it became clear to me that they would need new outdoor play things this Christmas. To continue procrastinating the bicycle lesson, I searched for alternatives to the two-wheeled-thorn-crashing-machine. I finally settled on my items; getting one kid a knee board and the other a pair of skates. Based on their squeals and excited, “Yes!” exclamations, I nailed Christmas and congratulated myself for both appeasing them and steering clear of bikes for another year. Enter my awesome Uncle and Aunt from Knoxville.

We don’t visit with them enough throughout the year. Isn’t that what we all realize about our family during the Holidays? Each year, they drive down to celebrate with us, but have only recently started a new tradition of sorts with their great-nieces and nephews—a Christmas shopping spree. Essentially, they give each kid a wad of cash and set them loose in Wal-Mart. My kids are the youngest, so I accompany them on this much-anticipated outing every year. This year, I followed my talkative children to the toy section and watched their eyes light up as they surveyed aisle after aisle of potential playthings. Esther settled herself in the pink aisle full of dolls and teas sets, and Josiah wandered through all the Star Wars and Super hero figures. All was well. Then Josiah saw the bicycles.

“Mama! A bicycle! Look!”

Shit.

“Mama! It’s a blue bike! Look a blue one! You see?!”

“Yes, I see. It’s just, well, I don’t know if you have enough money for a bike, baby.” I lied. He had more than enough money for a new bike, but I was certain I could sell him on another toy of some kind.

Josiah was visibly heartbroken. “I don’t? Oh…are you sure?”

The mom guilt tasted like rotten potatoes and soured milk combined. “Let me check again for you.” I said optimistically. I pulled out his little zip-lock bag of cash and made quite the show of counting the bills. I gave him a toothy grin. “Wow, Josiah! You do have enough!”

“Can I get this blue one?” He was so full of happiness, he nearly yelled the question.

I couldn’t help but laugh from my own happiness as I looked at his smiling face, and checked the price of the blue bike. “It looks like the blue one is too much money, but look! You have enough to get this awesome red one here!” I pulled the cumbersome two-wheeler free from its hanging restraints and set it in front of him.

“WOW! That is so cool!”

Okay, Sharon Kay, suck it up, butter cup. He loves this thing.

I immediately went to the nearby aisle in a frantic search for training wheels which, we later discovered wouldn’t fit the back axle. To ride the bike, he is going to have to ride it for real. We are past the point of training wheels. This means that I will have to do what I’ve been dreading. I will have to teach him to ride a bike.

He will fall. He will get hurt. He will cry. He will be angry. He will be sad. He will hate it. He will want to quit.

I will encourage. I will cajole. I will console. I will doctor the scabs. I will help him balance. I will wipe away his tears. I will help him back on the bike.

I will let go.

I will let go, and he will balance without me.

I will let go, and he will shout, “Look, mama!”

I will let go, and he will laugh with pride.

I will let go, and he will ride his bike like a champ.

I will let go, and he will peddle away from me.

Maybe what I’m discovering—while writing this piece, actually, is that the training wheels were for me, after all. Maybe I’m still trying to find my balance—but not on a bike. This time it’s as a mom—the balance between keeping them safe and pushing them to learn to ride on their own, and I’m always afraid I’m screwing it up.

When we got Josiah’s Autism diagnosis, it knocked the wind out of us. We saw many of the dreams and ideas for our son blow away. I battled in the only way I knew how, I jumped right into research and advocacy. I’ve spent the years since his diagnosis trying to anticipate what may cause a massive meltdown with him so that I could help him side-step it. In doing so, I began to get a “feel” of how to parent him. To give you an example of what I mean, I’ll tell you another story. This one is about his birthday this year.

Josiah loves Rise of the Guardians, Star Wars, and Spiderman 3–”the black one, mama!”

I got him none of those things for his birthday. You see, I had suffered with him through too many, “I’ve lost/broken my very favorite toy” meltdowns to get him birthday gifts he would fall in love with. Typical children will throw a tantrum. Josiah will cry for hours, and obsessively grieve for months. (This afternoon, he began crying in his room over a toy lion he had broken beyond repair last year.) I decided that, to help him avoid being hurt, I’d keep him from falling in love. So, I concocted a mom-plan that became my mantra for awhile—get him things he’ll like, but not love. At his party, he opened all of his gifts from me with a general, “meh.” Exactly what you want from your kid when you give him a present. Apparently, my plan had worked like a charm.

After he was so crestfallen at his birthday party, I made the brave decision to get him all the things he would genuinely love for Christmas. Should meltdowns occur, I’d just deal with them. His squeals, laughter, and exclamations of happiness on Christmas morning were a balm to my worried soul. It felt, to use the word all families of children with special needs avoid, normal.

He’s growing up, and so am I. We’re both still figuring this thing out, and we’ll both learn how to keep the balance together. I can’t tell you that we won’t get hurt, or that we won’t feel brokenhearted, but I can tell you that I’m sure that now is the time. For Josiah and for me, it’s time. It’s time to shed the training wheels, give him a gentle push, and lift my hand off of the banana shaped seat—but not before checking the immediate area for menacing thorn bushes.

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Finding the Sibling Balance

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“Mama, what’s Autism?” she asked. “ ‘Cause Josiah has it.”

“How do you know that, baby?”

“He went up front at the balloon thing. They said if you have Autism, come up front, and you took Josiah.”

I smoothed the honey-blonde head on the pillow next to me, and smiled against tears welling up in my eyes. “Yes, baby. Josiah has been diagnosed with Autism.”

I knew I’d take part in a conversation like this someday, but never expected to have such heady and important dialogue with my six-year-old daughter. To my complete amazement, she took everything in and wholly digested it—asking questions like a professional researcher after I explained certain manifestations of Autism.

“Is that why he gets mad when things mess up?”

“Is that why he goes to the Reading Clinic?”

“Is that why he had seizures ‘long time ago?”

“Is that why he has so many teachers?”

“Is that why he doesn’t play toys with me?”

“Is that why he takes medicine?”

“Is that why he doesn’t listen good?”

Esther is two years younger than Josiah, but most everyone we meet mistakes her as the older sibling. This is understandable partly because of her height, (she will grow to be a drop-dead glamazon sooner than I’d like) but mainly for the way she has always looked out for Josiah. It’s not unusual for her to redirect him prior to a meltdown just like a seasoned behavioral therapist, keep a sharp eye out for him on the playground, make sure he has all his belongings and school materials before walking out of the door, or even give him “orders” like, “Josiah, you need to eat your supper first THEN you can have dessert.” To be honest, I find myself relying heavily on her. She’s such a mother hen.

There’s a certain mom-guilt that comes with having a typical child and a special needs child. At least, I’ve found that to be the case. I feel like I’m always playing “catch-up” with Esther to even out the mom-attention. I don’t mean for it to be that way, not at all, but Josiah takes up so much time. I drove Josiah to Nashville twice a week for an entire school year for tutoring. I spend tons of time researching effective methods of instruction. I spend hours compiling all his data for upcoming IEP meetings. I give him more one-on-one tutoring time than I give Esther–and this is all in addition to how Josiah’s needs sometime trump Esther’s.

Josiah is very particular about certain toys. He can share others just fine, but there are some that he refuses to share–Esther thinks this is unfair. Esther has had to settle for what movie Josiah wants to watch so many times that I feel badly for her. I even broke my “no TVs in the bedroom” rule just so Esther could watch her Princess movies. Josiah also doesn’t compromise well. If Esther wants to play tag, and Josiah wants to play hide and seek, they always end up doing what he wants to do. Explaining all of this to her is difficult. I’ve played with her numerous times to make up for the fact that she didn’t get to play with her brother. I know that I’m second best though—playing with your sibling is so much more fun than playing with your mom who gets winded too easily. Keeping a balance of my attention between them is really hard. Am I allowed to say that as a mom? Despite all that I do to keep it even, (hello, hours of cheerleader practice and Saturday morning football games) I’m terrified that in years to come Esther will emotionally vomit up all of her many woes and injustices on some therapists couch.

This is why I cried hopeful tears when the hot-as-hell-hubby showed me a video someone sent him. I was working on my research paper, which coincidentally enough is about using music therapy practices in the general music class to help children with autism, when he poked his head into the bedroom.

“Need some inspiration?”

“You gonna get naked?” I joked. (ok. Maybe I was serious.)

“Naw, for real. You need to see this.” he said and handed me his phone.

I then watched the viral video about the two brothers, one with autism and one without.

I cried. I cried and thought about my Esther and Josiah. I thought about how Esther will most likely always love and look out for her brother, even though it will be frustrating and oftentimes feel unfair. I thought about how Josiah will love her his entire life, and know that she has his back. I thought about how the two of them together have a story that is completely separate from the one that I have with them. I thought about how I can’t wait to read it.

Esther and Josiah compliment each other so beautifully. They’re like two sides of a coin. I have come to realize that I don’t need to worry and stress about keeping any type of balance—they already do.

Return of the Jedi

Well hello there, all of you!

I certainly have been amazed, blown away, speechless, taken aback, and any other synonym for jaw-dropped-in-shock that’s in the Thesaurus, by the response from the last blog. What I intended as a thank you letter to a gentleman who went out of his way to help me has become a living entity on the interwebs–taking on a life of its own and reaching thousands with a “message” of tolerance, grace, and gratitude. I didn’t intend for it to become a rallying point for Autism Awareness, but somehow it has. I would like to state for the public record here and now that I am, by no means, an expert or authority on Autism. I am however an expert on our son, Josiah. That being said, I will now field all the Autism questions to advocacy and awareness groups.

I admit it, I have been dreading this act; sitting and staring at the white blog post square and blinking cursor. Ever since the site views began to climb higher than my record number (a whopping 172), I have wondered, “How do I follow that?” 

If you have read any of my other blogs, you’ve seen that I’m oftentimes irreverent, foul-mouthed, snarky, and sassy. The blog post that went viral was not an accurate representation of what I typically write, although I should probably take a hint from all the “likes” and “shares” that the thank you letter got and begin writing sweet Chicken Soup for the Soul type of things.

Nah.

I couldn’t if I tried. It was just a fluke, I suppose.

I told the now-famous Jedi, David Piggott, of my anxiety about my next blog.

“I have an idea.” he wrote. “You should post my reply, since hardly anyone saw it.”

“YES! That’s fantastic!” I quipped back.

So, I’ll continue to procrastinate penning my next blog, and let the master himself take care of this’un.

 

Hi Sharon, this is your friend the Jedi master. I just wanted to let you know that I got your beautiful thank you message. I’ve read it quite a few times and I am so moved by who you are and how you have shared this with the world.

I vividly remember you and Josiah and your daughter, and on behalf of everyone at the Jedi training academy, thank you for your sincere and heart-felt appreciation.

This story has literally gone viral like you wouldn’t believe, even to the Jedi order on the west coast and around the world!

You need to see what people have written, it’s beautiful, full of love and warms my heart. Add me on Facebook, it will surprise you!

I am most moved by who you are. A loving mother who will do anything to make sure her son experiences everything that life has to offer. Your commitment and sacrifice every single day is what makes the real difference.

You have opened people’s eyes to what it is like to have a child with autism and that even the smallest gesture can completely alter somone’s experience of life.

The ripple effect of love and compassion that you have caused is unmeasurable and just sharing this has altered people’s days, made them smile, made them cry and reminded them what it’s like to be a loving human being.

Thank you Sharon, inspired, moved and humbled…

David Piggott

P.s. If Josiah wants a rematch with Darth Vader, we would be more than glad to accommodate that! Please let me know.

  

 

The Most Beautiful Ruined Moment

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Dear Master Jedi,
       
       This is an open letter of deep appreciation to you. I hope that somehow it finds its way to your computer screen.

     You are an actor, and a damn funny one to boot. You’re really skilled at working with the unpredictably of kids and turning it into entertainment. I really hope that when you auditioned for and won this gig, that you’ve been as pleased with your job as your audiences have been with your performance. I also hope that this leads to bigger and better things, if that’s what you choose. You’re a supremely decent man and I’m ever in your debt for how you helped me out Tuesday, June 4th at the end of the last show of the day.

You see, during the months of planning for our Disneyworld trip, I found out about the Jedi Training Academy in Hollywood Studios and knew that my little boy would LOVE participating in it. He has been diagnosed with autism, and is typically oblivious to what goes on around him–except for Star Wars. I found an online clip of the Jedi Academy that some parent uploaded and showed him. He was so excited!

“I want to do that! I want to fight Darth Vader!”

He so very seldom really communicates with us that when he does, I move heaven and earth to keep that connection going. He wanted to fight Darth Vader, huh? Then by God, he would.

When we arrived at Hollywood Studios at the ribbon drop, I high-tailed it to sign up for the Jedi Training. There was already a huge line, and I was a little worried that all the spots would fill up before we reached the front of it. I was also concerned because the workers at the front were asking the KIDS questions to ascertain if they can follow instructions. I squatted down and had a little pep talk with my boy.

“Josiah, look at me, please. Look at me. Good. Listen to me. Are your ears on? Good. That lady is going to ask you how old you are. Do you know how old you are? Eight! That’s right! Now, you HAVE  talk to her, OK? I mean it, sweetie. When she talks to you, you talk back, or she won’t let you fight Darth Vader.” He never gave any sign of recognition, but I hoped that he understood. We’ve been working on appropriate conversation skills for months now, and I was counting on that therapy to kick in high gear for him in this moment.

It’s our turn! Here we go.

“Hello and good morning!” Said a bright and cheery Disney cast member to Josiah. (They are ALL bright and cheery.) “Are you ready to battle the Dark Side?”

“Yes.” Josiah mumbled.

Oh my God! He talked to her!

“Good! We need brave Jedis like you. How old are you?”

Josiah hesitated. She asked him again. I was about to answer for him when he said, “I eight.”

Yes!

“Eight. That’s great! Now, can you follow directions?”

Josiah blinked at her.

“If I told you to raise your hands, what would you…Good!”

Josiah had risen his hands up high before she finished her question.

Because of this miracle of a “conversation” we were able to secure two spots for both of our kids in the 8:00 show. (our daughter decided she wanted to be a Jedi too) Perfect! This is going to be something they’ll remember their entire life!

After signing up, we went about our sight-seeing of the park–riding Star Tours 3 times in the process. Before and after each ride or attraction, my son asked, “Am I going to fight Darth Vader now?”
“No.” I’d reply. “After supper. Have you eaten supper yet?”
“Oh. That’s right.” He’d sigh. Then we’d have the same conversation again in about twenty minutes.

The day went on, and a storm blew through. I was glad that our Jedi training was after the big storm. Yay for us, right?

Accordingly, after we ate supper at Hollywood and Vine, I took both of my Padawans by the hand, and led them to the Jedi training to suit up in their robes.

“Now? Is it time to fight Darth Vader now?” He anxiously asked.

“Almost, sweetie. Almost.”

They led the kids to the stage and there we saw you, Mr. Jedi-man. You were funny, entertaining, and great with the kids.

Then, Darth Vader made a wonderfully dramatic entrance!

Omg. Here we go!

I looked at Josiah’s face which was plastered with the biggest grin I’d ever seen.

My face was too.

The assisting Jedi sent kid after kid to center stage to battle the Sith Lord. My daughter, Esther was so cute! She stood so far away from him to “fight.” I laughed and enjoyed watching her.

This is so cute!

Five left…Now four. It began to sprinkle rain.

Three left. Now two. Now….

“We’re sorry ladies and gentlemen. Due to the rain, the Jedi academy is closed.”

Josiah stood there onstage; lightsaber at the ready. He turned and locked his eyes on mine. Then he screwed his face up and cried.

“No! Nooooo! I didn’t get to!”

He ran to me and I held him while he cried.

I’m sure most people would, on observing this, assume he is spoiled. I assure you he isn’t.

This is Autism. He was fixated on something, then didn’t get to do it. The vacation would be ruined for him–and we were only in day two of it. Nothing we do can ever get him back on track once he derails. I began to cry despite myself. This would be all he would remember of his Disney trip.

I locked eyes with you. Do you remember? I was crying like a blubbering dummy.

I motioned for you to come to me. You stood there and looked around for a second. I motioned again. You took a hesitant step my way…then another. We stood face to face in the pouring rain.

“He’s autistic.” I choked out. “This is all he’s talked about all day. Is there anything you can do?”

“Meet me around the side there.” You nobly said. Kudos to staying in character the entire time, by the way.

We made our way around to the side of the stage, amid a sea of parents, kids, and cheery cast members.

There you were, waiting all Jedi-like in an alcove. Waiting for Josiah.

You then made a “Grand presentation” to him and gave him Darth Vader’s lightsaber–autographed by the Dark Lord himself!

Say what!?

Josiah was in awe. You gave him the moon, Mr. Jedi Master. You fixed his day…his entire vacation! You got him back on track.

I couldn’t help but cry, and I’m crying now remembering your generosity of spirit for my little boy. You easily could have thrown your hands up when I motioned for you. You could have pointed to your character handler and shrugged a fake “I’m sorry.” You could have simply ignored me and turned your back.

But you didn’t.

You may not even remember this moment, it was so small for you. I would be remiss, though, if I didn’t fully explain how you…YOU, Jedi Master made a ruined moment beautiful. Thank you from the very bottom of my heart.

We spent the rest of the night jumping in puddles, riding rides, enjoying the nearly empty streets of Hollywood Studios, and watching Fantasmic.

Thank you, again. You will never know how you helped us out. To say that you made our vacation is not an exaggeration.

Most Sincerely and Appreciatively,
Sharon Kay Edwards