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Thoughts from a parent – Jon’s story

Thoughts from a parent…

When I think back over having Jon almost 35 years, it’s been an adventure, but not what I would have expected – even working in the field.

Jon did so well early on that at his three-month appointment, the doctor wrote “perfect!” on his checkup form. Things were perfect, although we started to notice changes early on. Both my wife and I worked in the field, and we were the first to suspect autism when Jon started to miss his milestones. For us, the most difficult part was that at one time, Jon said many words, but he lost them one by one, over the course of about two years. For some words, I can tell you the very day he said it for the last time.

The typical thing when someone asks you to describe what it’s like to have a child with a disability is to tell all of the horror stories; the times when you didn’t know what to do or the times you shook your fist at heaven. We had those moments. I suppose everyone does. I’m going to talk about the other side, the things I’m so thankful we have because of Jon. I’m not a silver lining kind of guy. If someone had a cure so that Jon could lead a happy and fulfilled independent life, I would jump at the chance. But what I want you to know is that having a child with a disability is also a gift. If you embrace it, your life will forever change.

Any parent will tell you that having children changes your life. Jon changed the way I look at life. When you live with a person who can’t tell you how they feel, you develop an empathy that is difficult to describe. My pillow is exactly eight feet across the hall from his. I can tell you how he feels from his laughter, his yips and yells, even how he holds his hands. I know those things that worry him, and although we continually try to broaden his world with new experiences, he knows that we understand his concerns and that we’ll make sure he’s safe.

I’ve often said that having a person in your family with a disability is either a glue or a solvent. I’ve seen the pressures of disabilities tear families apart. In our case, it drew us closer together. My children never argue who is our favorite – they know that although we love them all beyond measure, Jon needs all of us.

Jon lives his life in details that we ignore. Once, when Mary had taken our other children to church camp, Jon and I had a week to ourselves. He loved the mall at the time, and so we went there every night that week after work. After the first night, I saw everything I needed, so the rest of the week was for Jon. He took me to a department store, and when we walked through the front door, he giggled. Since we didn’t have anything else to do, I wanted to figure out what was so funny. We must have walked through the doorway 15 times before I figured it out. The mall entrance to the store had a brick wall, the company sign, and a small row of lights in between. If you walked into the store looking up at the sign and you squinted your eyes, and you walked at just the right speed, the lights would flash, looking like a burst of fireworks. When I finally figured it out, I giggled a little too.

Jon’s greatest love is computers. He started using them when he was about eight years old, and it has been his saving grace. I describe it this way; imagine that you went through your entire life never being fluent in anything. For a lot of the people we serve, that is a good description of their life. For Jon, having a computer allows him to explore his favorite applications, studying every nuance, every pixel of every screen. When Jon plays a program, it’s like he’s doing it for the first time. It never gets old, and he never gets bored with them. It’s a world that responds to his commands exactly the way he wants, every time.

He once got a new computer and the only way I can describe it is like being newly in love. He would drag people down to his room to see the computer and how beautiful it was and then shove you out of the door and slam it behind you. That night when I gave him his bath, he couldn’t stop laughing – he was just totally full of joy.

Jon has an innate ability to affect others. When we first started going to our church, Jon decided to sit directly behind Bertha Lamb. Bertha must have been 120 and wore an ill-fitting wig that we all thought she might have on backward. After our first service, no less than three kindly congregants told us that Bertha couldn’t help being mean and that the rest of the church wasn’t like that.

Jon didn’t know who he should or shouldn’t like, and he immediately connected with Bertha. Bertha liked Jon too, and over the next few months, Bertha changed from an old curmudgeon to the candy lady. She would bring candy for all the kids that sat in our row, but she always brought something special just for Jon.

One time Bertha had fallen asleep during an especially long sermon. Jon reached forward, gently playing with Bertha’s wig. From behind, I could see her startle, and then when she realized it was Jon who woke her, she started to laugh uncontrollably. Shortly before Bertha’s passing, we learned the rest of the story. Bertha once had a brother named George who had a disability. He died quite young at just eight years old, but Jon reminded her of George, and without words, Jon and Bertha developed a beautiful relationship.

I can’t wait for the first time Jon and I meet in heaven, every disability discarded, with a full understanding of what God hoped we would learn here on earth. Even then, I think a wordless hug will be all I need.

Love. Learn. Worship.

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