Recently, we have had more challenges than usual. I think that is just the way of this thing called Autism. Just when you believe you have developed all the coping mechanisms you might need to make it through, new obstacles arise leaving you without strategy. The onset of atypical migraines has been one of our newest hurdles. Presenting with stoke-like symptoms, these headaches required several hospital stays that left Noah critically behind on his schoolwork. This is one more way we suffer. It is one more cross to bear.
Already hindered by the learning disabilities that accompany autism and dyslexia, this new cross seems too heavy. Further and further behind in school, we worry that Noah will never be able to catch up. Realizing that his intelligence may never be recognized or valued is another cross we bear.
His teaching team at school is witness to Noah’s frustration and tension. In response to our new challenges, as well as the difficulties Noah already experiences with reading, his school offers extra reading tutorial several days a week. Somewhat encouraged by this gesture, I still know it takes an inhuman amount of effort for Noah to keep his head above water – effort we sometimes don’t have to spend. Always feeling behind and different is another cross we carry.
But Noah is doing what he always does. He just keeps on going. When asked to define “success” as part of a school project last year, Noah said, “Success is when you keep moving forward.” This Sunday, I saw just how far small steps forward actually take you.
Wanting to be useful at church, Noah has added several tasks to his Sunday church routine. He has been helping set up tables and chairs before the service since he was old enough to pick up a chair. It comes with being a minister’s kid I guess. I suppose he has grown up seeing church as a place where work needs to be done. Even at a small church, there are sets of tasks that need completing each week. Noah has tuned into these tasks.
For instance, our church shares a parking lot with a city park. Parking is often at a premium on Sunday mornings during baseball season due to tournaments. Noah reserves spots close to our building with folding chairs and serves as a “parking lot usher” on these days. He participates in taking up offering and distributing communion. These are things Noah has challenged himself to do so that he can participate in our church. And they are difficult for him because they require high levels of adaptive functioning. But nothing as difficult as the challenges he faces in the learning environment, which is why I was surprised when he expressed an interest in reading scripture during our worship service.
Noah avoids interactions with people primarily because of his speech. Slurred and difficult to understand at times, Noah’s speech hampers his communication. Additionally, the social pieces of communication (like eye contact) are often lost on Noah due to his autism. As a result, spoken words are rarely Noah first choice in the communicative process. People often think he has nothing to say, and therefore, no thoughts on many issues. This is another cross he carries.
Just as difficult is the reading process in general. He recently described the process of viewing a printed page as “seeing through a rainbow cloud.” Letters within words are not stationary and often vibrate or float as Noah’s brain tries to capture their meaning. Reading is, quite honestly, nearly impossible for Noah. If the world belongs to the readers, writers and speakers then the world is not Noah’s. Not having the ability to contribute in a way that is meaningful to the world around him is a heavy cross for him.
You can understand my awe and wonder when Noah expressed a desire to 1). Read scripture, 2). aloud in front of people, as a part of our worship service. But he asked for the opportunity, so I worked with him on a verse he could read to begin our service to introduce a new song we were singing. Noah practiced his verse to be ready to participate.
To engage our church in this new song, I asked them to think about the cross and how it offers us redemption. I said that living “cross-shaped lives” often means enduring pain in the hopes of seeing it redeemed one day. Everyone was provided a post-it note and asked to write a struggle that have either seen God redeem or are trusting God to redeem in their life.
I think I glimpsed heaven as Noah rose to his feet and took his place. Placing a printed copy of his passage on the podium, Noah read these words from Psalm 103:
I will praise the Lord.
Deep down inside me, I will praise him.
I will praise him, because his name is holy.
I will praise the Lord.
I won’t forget anything he does for me.
He forgives all my sins.
He heals all my sicknesses.
He saves my life from going down into the grave.
His faithful and tender love makes me feel like a king.
He satisfies me with the good things I long for.
Then I feel young and strong again, just like an eagle.
The Lord does what is right and fair
for all who are beaten down.
As he read, he modulated his voice and used expression to convey certain words like “sicknesses” and “king.” He gestured with his hands during phrases like “I won’t forget anything he does for me.” His small voice, complete with speech defects where letters like “r” make the “w” sound, flowed like beautiful music in our worship space. In that moment, Noah’s cross became a little lighter because by allowing him to bear his cross in our community of believers everyone bore it with him.
After Noah read his passage, he went to his seat and filled out two post-it notes. One of them said, “math”. This is a reference to how he feels more competent at this subject but still cannot achieve in the classroom due to the noise. The other read, “speech.” Noah has plenty of words to say, but difficulties in speech and language often render him mute. Placing those on the cross, he gave them to God to redeem.
Truthfully, Noah carries his cross more gracefully that I do. He has moments of such severe frustration he has developed migraine headaches, but generally he does not complain. I think this is because Noah does not view success as completion or achievement, but as picking up his cross and taking one more step forward.
On Good Friday, our church will carry a cross though the streets of downtown Cumming, Georgia as a commitment to bear the cross for our community. We do this through living cross-shaped lives that empty ourselves out and take on the nature of servants (Phil 2:5-11). Noah will lift that wooden cross and drag it a few paces through the center of town on that day. But for me, nothing is as beautiful as the way he simply moves forward despite his suffering every day of his life.