I Wanna Hold Your Hand . . .

Last Sunday, after Sacrament meeting ended, Ethan and I left the stand and walked towards where his teacher was standing (His teacher is a giant of a man, large and strong enough for Arnold Friberg to have used as a model in his paintings). Ethan greeted him in familiar fashion, "Hi, Brother N," then gave him a hug. Brother N replied, "Hey, Buddy, you ready for class." Ethan replied, "Can I walk with you?" and the two turned and began walking down the aisle out of the chapel.

As they walked, Ethan reached for Brother N's hand, to hold it. At the slightest indication that flesh had touched flesh, Brother N's hand shot back, twisting and recoiling, maneuvering this way and that, like a jettisoning water hose free of the fireman's control, all to avoid the unnatural contact. His arm raised with equal jerked awkwardness as he sought to find a comfortable, acceptable, location to put his hand. His hand drifted downward towards Ethan's shoulder, but the feelings of tension, like opposing poles of magnets, would not let it rest, and eventually his arm dropped back to his side. They walked on, and I could not help but smile.

Holding hands with a nearly-fifteen-year-old young man is not normal. And to some is quite unnatural. Believe me, I get it. No harm no foul.

But occasionally, there are those days, those rough days, those days when you are out and you see the looks as he and I walk hand in hand down the aisles of Home Depot, or Kohl's, or as we push our grocery cart together. Those days where I need to repent for taking offense. It's on those days that I wish Autism was more distinguishable, more noticeable to the average human eye; not disguised with only subtle and time-involved observations making it apparent.

For instance, had the gentleman in Home Depot with the conspicuous stare allowed his eyes to take in the whole picture, he might have seen things differently. He might have noticed the childlike bewilderment in his eyes, as they wildly examined his surroundings through thick framed glasses which rested peculiarly on the tip of his nose. He might have noticed that it was nearly 90 degrees outside, and yet this young man was wearing a sweatshirt. The sweatshirt itself was tucked in, and not just in the waistband of his jeans, but in his underwear. He might have noticed his pants didn't fit right, his belt pulled tight, the waistband of pants too large for his beyond-slim waist, causing them to buckle in an unwieldy bunch around his waist, and though the waist band, which rested below his underwear waistband--making them clearly visible--made his pants look overly large for such a young man, the pant legs barely touched the tops of his shoes for his 5'5" frame. He might have noticed his shoes were tied with no less then five knots, creating a tumorous clump of shoelace, leaving nothing to chance that they might come untied; shoes that on their toes held two shiny silver metal plates, engraved for all to see with the international medical alert symbol and chiseled permanently with the word: AUTISM!

Most of what we do we do, having "learned by sad experience." After that we do it because it is routine, and routine for us, is calming.

The medical alert tags came after Ethan's visit inside the neighbors house via the doggy door.

Holding hands came by another route altogether:

Evie was shopping with Ethan, age four, at WalMart. They were in the diaper section, and as Evie turned to grab a package of diapers from the shelf, Ethan shot off, running through the aisle, under a clothes rack and out of sight. She ran after him, but he was gone. She frantically looked for an Associate, and told her Ethan had run from her. "CODE-ADAM" echoed from the stores intercom within seconds of the news, and like a well oiled machine, every Associate stopped what they were doing and the search was on. Within an eternity of seconds (about thirty) the initial Code-Adam was answered with the signal that they had found Ethan, in the jewelry section, about 50 yards away!

From that day on, if he could fit in a shopping cart seat, he was in the shopping cart seat. When he was too big for the shopping cart seat, we pushed a second cart and he road in the cart itself. Eventually he outgrew that and we made other plans.

Flash forward to third grade. Ethan got on the bus at school, having had a bad day. Normally he rode with the driver and an aide. Today, because it was such a bad day, he rode with an additional aide, his own aide. As the bus made its way up the freeway towards our home, Ethan sat quietly in his seat holding a paper rainbow on his lap. He had been focused on drawing rainbows for quite some time and this one he had worked on for several hours. As the bus neared the exit to our house, a wind gust blew through the opened windows and grabbed his rainbow, lifting it out through the window and into the oblivion known as the Black Canyon Highway.

A melt down commenced immediately. As the bus slowed to a stop out front of the house, Evie and Michael were both standing on the sidewalk waiting for him. Ethan gathered his things, as the aide explained the trauma. Ethan exited the bus and darted off at full speed, intent on retrieving his rainbow. With more tunnel vision and fixed determination than a laser beam, Ethan ran full speed, focused only on finding his rainbow. Michael ran off in pursuit. Ethan, blind to anything other then his rainbow, shot off the sidewalk and into the street. Michael, desperately trying to make up distance, sprinted as hard as he could. At 100 yards the race was over, Ethan had been captured. Evie drove up in the van and she and Michael wrestled Ethan into his seat.

To stop the madness, Evie, Ethan and Michael drove up and down the freeway scanning the road for any signs of the rainbow. After 30 minutes, it was determined the rainbow was gone.

After that day, whenever we went anywhere with Ethan, somebody was assigned to hold his hand. As he got bigger, and with that I mean stronger, and faster, it was decided Dad would take the hand holding assignment permanently.  Though the assignment can change based on his mood, for the most part, it is he and I, holding hands whenever we walk together.

Over the years I've learned that it is therapeutic when we hold hands. The touching allows an escape route for frustrations, excessive energy, and some of his anxieties. The touching also brings a calming peaceful influence to each of us. As Ethan and I have held hands I have come to learn a deeper meaning to the phrase “willing to bear one another’s burdens, that they may be light."


Comments

  1. Some of the greatest blessings in my life have come out of some of the biggest struggles. I admire your family for recognizing the blessings that the burden of autism have brought into your lives. Thanks for sharing and giving us insight and greater understanding!

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  2. WOW! We sure love you and your family. Ethan has always had a special place in my heart (actually so do each of your kids!) and I really am glad that you do this blog and let us see what life is like for Ethan and your family. I always feel so grateful that Heavenly Father's plan was for you all to be a family. I know that this journey, while often trying for you, not only blesses your lives but those of us that you allow to see in. Thank you for sharing your journey with us!

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  3. We miss seeing your family! Beautiful touching words. Love to read them!

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  4. Marolyn and Milan here. This was so well written and heart warming. I know you didn't write this for accolades and admiration but you and Evie have certainly earned it.

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  5. What a pleasure to read this post about my former student Ethan. He will always have a place in my heart and what I have learned from him I have used to benefit many other students. What a lucky young man to have a family like you all! Thank you for telling me about your blog!

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