LIVING IN THE ONE PERCENTILE

“Let me explain,” she said with her colorful charts spread out on the table. “Cognitively, your child is in the one percentile range. He might not ever speak. He will probably always need assistance, and you will want to start thinking about care for him as he ages.”

LIFE AT ONE PERCENT

When Caden was four years old, he was diagnosed with Autism and MR, now called LIF or ID. His IQ was almost non-existent, and through a battery of tests, he was placed near the one-percentile range on most developmental markers and even on the nonverbal spectrum. Following this heartbreaking news, our family experienced a deep sense of loss in what we thought would be for our son. This diagnosis was not the dream I had envisioned in being a parent.

When Caden was young, he would often talk in a high-pitched voice incessantly, flap his hands, hit himself, and in more severe tantrums, would bang his head against the wall. I remember a long season of following him around the house on my knees, attempting to keep him from walking on his tippy toes. He would also scream at restaurants because of the noise, the lights, and sensory overload. Unable to talk, he would cry and whine all day long. I felt utterly helpless and, as a result, would cry right along with him.

Caden couldn’t understand the basics of one-step directions because he didn’t understand language. If I said, “put the cup on the table,” he couldn’t process what “on” meant. He couldn’t comprehend those little details that so many kids quickly pick up in their younger years.

He also didn’t know how to play. We had a hard time finding toys that Caden would like because he didn’t play with them. Instead, he would often stare out the window and be lost somewhere in his mind.

As he got older, Caden would use echolalia and mimic people’s words instead of responding appropriately. He had many repetitive behaviors, such as not leaving the house without making sure doors were closed and placing his toys on his bed in a certain way. Caden didn’t like specific textures in clothing or food and would often scream if he had to wear a long-sleeved shirt or had to eat something like oatmeal. Heaven forbid! He couldn’t connect with those around him, and people were almost absent from his view.

His diagnosis catapulted us on a long journey filled with countless hours of intervention such as ABA, behavioral, speech, occupational, cognitive, energy and light therapy. We also placed Caden in neurological programs, hippotherapy, and neurofeedback. We integrated in dietary interventions, shots, pills, and supplements. We even filled our bookshelves with every book we could find on autism. Throughout different seasons, we moved him in and out of private, public, homeschool, and co-ops seeking only the best teachers that would believe in him.

You name it, and we’ve probably tried it.

BREAKING THROUGH ONE PERCENT

Caden also experienced some phenomenal breakthroughs, such as saying his first sentence to reading a word. Then those verbal sentences turned into conversations, and recognizing that sight word turned into reading novels. He eventually stopped hitting himself and walking on his tiptoes. He wore whatever clothing he wanted without sensory issues. As he got older, he learned to swim, ride a bike, run cross country, draw, and take care of our animals.

Every accomplishment happened because of the tremendous work and investment from many who have walked this journey with us.

Caden also accepted Jesus as his Savior when he was ten years old. That was the ultimate breakthrough. He has a love for Jesus, unlike anyone I know. It’s not uncommon to find him memorizing Scripture or praying on his knees in his room. He loves God. It was my prayer that Caden would seek God and feel his presence in his life amid all the pain and limitations. God heard that prayer.

When I flip through the MANY files on Caden’s life related to IEP’s and all the plethora of reports that fill an entire file cabinet, I see a common thread—one percent. Caden was typically in the one percentile range on nearly every assessment. That is, not average, not below average, but right there sitting next to zero percent.

That was Caden.

I most likely wanted to imagine that Caden was a genius hiding behind a diagnosis, but honestly, that was not our reality. Instead, every study indicated something quite the contrary—he was in the one percentile range. However, that doesn’t diminish the fact that Caden is a beautifully gifted and amazing boy. This kid surpassed every goal we ever dreamed for him. The truth is --- breaking one percent was never about just the outward appearances on whether or not he could speak or ride a bike. The startling reality that we learned along the way was that God doesn’t care about percentages because he sees the heart. He knows Caden and formed him in the womb. He is known, and he is loved by God. Caden broke past the one percentile range not because of who he was in his achievements but because of who God was through him.

After one of the IEP's many years ago, I remember crying over some of his results. Then, when leaving the building, one of the counselors walked out with me to the parking lot trying to console me as I grieved yet another loss. While I stood next to my car, she looked me straight in the eyes, and said, "Caden may not be able to do certain skills, but don't be disillusioned; he is one of the kindest and most compassionate individuals I have worked with, and that trumps everything else."

She knew that I needed to hear those words at that exact moment.

That's when I knew that whatever the assessments said, Caden's value and purpose was more significant than just a number on a paper. He was a child of God.

WE ARE ALL LIVING A VERSION OF ONE PERCENT

Most of us can relate to Caden in many ways. We, too, are often faced with living in the one percentile. We might feel that there is something in our story that doesn’t make the grade. Living in the one percentile is when you have given everything you had and still didn’t manage to measure up. It’s when your good wasn’t good enough.

But Scripture says,

“My grace is sufficient for you, for power is perfected in weakness.” Therefore, I will most gladly boast all the more about my weaknesses, so that Christ’s power may reside in me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong.” 2 Corinthians 12:9-10

We function at our best not because of who we are but because of who He is through us. Scripture often recounts characters who too lived in the "one-percentile." Yet, despite their age, their inabilities, or their dysfunctional family background, they ended up doing heroic tasks like saving the Israelite people from slavery, taking down a giant, to defeating an army of thousands. God consistently shows us that it was never about what they could do but what God would do through them to display His glory.

Ultimately who we are is not found in ourselves but in our dependence upon God.

What are you facing today? Do you have a one percent chance of your marriage surviving or a one percent chance of getting that job? Have you had a day that spiraled out of control and left you emotionally at one percent? Maybe the doctors have even said that you have a one percent chance of living.

Whatever your circumstance, when we operate out of a place of limitation but leverage ourselves to the one without limits, our weakness is made perfect.

When you have found yourself at one percent, know that it's not about simply altering your circumstance but about shifting your understanding of God in your circumstance. Although we have a God who loves and heals, He is not primarily concerned with changing your realities as much as He is involved with changing your heart. And interestingly, when you are changed inwardly, your perspective of your circumstance changes, too.

Lean into the strength of Jesus because He does not function out of a spirit of giving percentages. He is our all-powerful God who knows us by name. He is our refuge and hope and is more than enough to redeem every loss and strengthen every weakness. He will meet us in the shadows and the thin places where it feels as though we are stuck in our one percent circumstance.

Caden's story is not over yet. He still often functions out of the one-percentile range in different ways and yet, God.

God will meet him there, every step, every setback, every hurdle, every triumph.

When we are operating at one percent and when weakness has overwhelmed us, let's remember that He is Emmanuel, the God who is "with us." Let us walk confidently in weakness, resting assured in his strength, that He might display his glory through us.