What a Roller Coaster Ride with my Autistic Son Taught Me about My Heavenly Father

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“Connor understands more than he lets on.” If I’ve heard that once I’ve heard it 1000 times. I believe it’s true. Autism might have left my son’s world silent but his mind is very active. People who spend any time interacting with him soon come to realize that there’s a lot going on upstairs.

But how much does he really understand? How much can he comprehend of this world around him? That’s always a big concern for us and it was in the forefront of our minds when we took Connor and Grace to Holiday World a few weeks ago. Continue reading

My Imperfect Prayers

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I suppose I would have to call it a routine. It was predictable. You could set your watch by it. It happened every afternoon this summer. I would come home from the office, drop my bags and Connor would put his shoes on and take my hand. There was no time for me to rest or take care of anything else. It was time for us to go to our local convenience store for a snack. He would even tell me with his iPad, “The Junction. The Junction. The Junction.”

imperfect_prayersWhen you find out you’re going to have a son there are all sorts of things you imagine doing—fishing, camping, watching action movies together. When you find out your child has autism—the kind of autism Connor has—those are stolen from you. Interaction is limited, activities that require concentration are gone and deep conversation is completely lost. And so, instead of fishing or watching movies we would take our daily walks to our local convenience store (The Junction), have a glass of tea and a snack and maybe stop at the park for a quick teeter-totter.

I discovered that it didn’t matter that we couldn’t do the things I wanted to do. All that mattered was I got to spend time with my son doing what he was capable of doing. He was happy to build a routine around me and include me as an important part of his life.

Sometimes I wonder about how God hears my prayers. Do they sound routine as I say the same words over and over again? Does he get tired of the predictability of the time I spend with him? Does he regret that I’m not capable of more interaction or attention?

Or is God’s love for me anything like my love for Connor? Does he so love who I am that any moment we spend together is precious to him—no matter how clumsy the words or how repetitive it seems?

Connor and I would sit for a half hour or so at The Junction, slowly nursing our iced tea and quickly eating our cookies. We would hold hands, hug and tickle each other. We would laugh, smile and occasionally he would just cry. All that really mattered was we did it together.

Jesus said to his disciples in Mark 6:31, “Come with me by yourselves to a quiet place and get some rest.” That’s all, just rest with me. He doesn’t call me to eloquence or to know all the right words, just to know the right place to find my rest.

What’s he saying to you?

You Can’t Earn God’s Grace . . . Or Can You?

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We use the word “grace” a lot and we do our best to define it. I think our definitions always come up short, though.

We say things like “God’s unmerited favor” and we all “oooh” and “aaah” at such a notion. It sounds good, but it’s still confusing.

We say that grace is a gift, which is accurate. We tell people, “you can’t earn a gift.” But deep down we know we can. In fact, we know we have earned gifts.

When we were little our parents would leave us with a sitter and tell us, “Now, you be good and I’ll bring you a present.” A present is a gift, right? We did our best. We may not have been all that good, but we were close. When they got home we asked where our present was and we received a gift. It was a reward for being good.

Let’s just admit it, that’s how gifts work. That’s how birthdays work, it’s how Christmas works. Just ask any kid who has been threatened with a stocking full of coal. It was in the words of our Christmas anthem. “He sees you when you’re sleeping. He knows when you’re awake. He knows if you’ve been bad or good. So be good, for goodness sake!”

And so we grow up with this understanding that if we’re good we will get a gift. Then we come to church and we’re told that we are saved by grace “through faith. And this is not your own doing; it is the gift of God, not a result of works, so that no one may boast. (Ephesians 2:8, 9 ESV)” We sing the songs that tells us we were a wretch and were lost but we know that somehow we caught God’s attention and he gave us a gift. If years of gift-receiving has taught us anything it’s that we must have been good.

Maybe our problem isn’t with the definition of grace, though. Maybe the problem is with our identification with the receiver of a gift.

My wife and I named our youngest daughter “Grace” because we realized we had been the recipients of God’s grace. However, I think it’s my son Connor who has taught me more about what it means to receive grace from God. As I’ve written before, Connor is profoundly autistic. He is non-verbal (but noisy) and he is very much controlled by his own desire for sensory input and stimulus. If he weren’t so cute you would think he was a self-centered little jerk.

Connor’s birthday is October 3rd and the truth is he doesn’t care. To him it’s just another day. Connor doesn’t have a calendar where he marks off the days until his birthday. He doesn’t start dropping hints about what he wants around the middle of September. There are no sleepless nights in anticipation of what he will receive the next day.

Every year my wife asks me, “what are we getting Connor for his birthday?” And there are times when I have answered, “Does it matter?” We could get him a cardboard box and he would be happy. He doesn’t know it’s his birthday. He doesn’t understand the fuss (though he likes the cake). And most importantly, Connor doesn’t know how to be good so he will get a present. So does he still get a present?

You bet he does!

Connor gets a present because we love him. He gets a present because we consider him worth celebrating. We give him presents because his weakness, his lack of understanding, does not change the fact that I am his daddy and he is my son.

One of Connor’s favorite gifts is a green stuffed animal named “Scout.” In fact, Connor has received three of them over the years and will probably receive a fourth this October (Scouts tends to get loved so much the Velveteen Rabbit would be green with envy). Connor cherishes Scout, but he doesn’t boast about his gift. He doesn’t tell other people about what a good boy he was to receive such a gift–he just enjoys it. He hugs Scout, plays with it and falls asleep next to it. And on his birthday when Scout suddenly becomes stain-free and re-fluffed he will simply go on loving his gift.

Now, how do you receive the grace of God?

Giving Connor Back His Voice

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One of the realizations we had to come to as parents was that we didn’t lose our son to autism. Autism muzzled him, muffled his voice, clouded his head and put a barrier between him and our world. As devastating as that was, I’m constantly reminded that there is a little boy still in there. He laughs, he cries, he eats like a horse. He loves his daddy and interacts with me as best as he can. We have a pretty good time together.

AutismWhen we determined that something was wrong with Connor’s development we immediately went looking for help. One of the best resources we found has been Eastern Illinois University’s Speech, Language and Hearing Clinic. The instructors are incredible and the student clinicians are receiving great training with excellent oversight. Connor gets wonderful care there and many opportunities for growth.

With growth comes success. As we began therapy I quickly found myself looking for any glimmer of hope we could build on. As opportunities to communicate were given to Connor I started looking for more intentionality in the things he was already doing. Continue reading

Words Connor Has Said: Night Night

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When Connor was born no one wearing a labcoat and carrying a clipboard came into our hospital room and said, “I’m sorry to inform you, your son has autism.” That’s not how autism works. Autism is subtle at first. We left the hospital with a healthy and happy baby boy. Our hopes and dreams were intact and life progressed normally.

I sang with all three of my kids when they were little. Mostly “Old McDonald.” I would start the song and they would join in with the “EIEIO” part. I remember teaching the song to ConnoAutismr and his eyes lighting up as I sang, “Old McDonald had a farm.” He looked me in the eye, completely engaged and said, “OH! EIEIO!” We proceeded with cows and pigs and other farm animals, each time he would join in, “EIEIO!”

It was at about fifteen months when we first noticed something was wrong. He stopped making eye contact. Interest gave way to obsession. He would simply sit and rock or wave his arms for what seemed like hours. And he was losing his language.

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