Day 11: Acceptance is Presuming Competence

Ben will never forget the day that he toppled off his bicycle, and neither will I!

The school year is winding down.

Ben’s IEP review meeting is drawing near.

Time to dig out Ben's IEP and assessment reports to familiarize myself with them once again.

As I read through the evaluator’s comments from his initial assessment, I’m struck with the same chills that I always have reading these reports.  

I always get the strong sense that this one report has completely failed to capture the rich complexity that is my son.  

It is a snapshot in time of his abilities and struggles.  

And, while the snapshot is an accurate depiction of that moment, it is incomplete.

The report states that “Ben was heard to communicate in sentences but is not engaging in a give and take conversation.  He had difficulty responding to questions that were asked of him, often repeating what was asked.  Scripting was observed.  Most of his speech was understandable, but Ben did not look at the evaluator when speaking…”

Sometimes days our conversations happen just as this evaluator has described.  On those days, our conversations seem to go in circles.

And while it would be tempting to assume that these repetitive conversations reveal low cognitive abilities, I know better.

Because then there are times when we talk about concepts that are far beyond his years.

And that is why I believe in presuming competence.

Presuming competence is an act of faith.

It is belief that a person understands even if they don't appear to comprehend, or even to be listening and paying attention to what is happening.

Presuming competence doesn’t mean that the person understands it all right now.

Presuming competence means allowing a person to process information at his own speed.  It is trusting that, one day, all the dots will connect and the pieces will come together in the person’s mind.

Presuming competence requires incredible patience, but it is worth the wait.

Ben may not show that he has processed a situation until days, weeks, or even months later. 

He returns to pivotal events in his life again and again.  He asks question after question, clearly rolling the concepts around in his mind.  Each time he brings the conversation back, he probes a little deeper, uncovering a new layer of complexity.

Like the time he fell off his bicycle.

I’ll never forget the day.  

I was walking behind him and I watched his bike speeding faster and faster as it raced down the hilly sidewalk.

At first it was fun for him.  We don’t have hills like that in Florida.

I yelled for him to slow down.  At first I don’t think he wanted to because he was enjoying the sensation.  And then he couldn't.  And then he lost control as he barreled into the street.  I watched the whole thing happening, but I was much too far away to do anything about it.

By then, he had left me far behind.  I raced to him.  He was crumpled in a ball under his bike.  He looked so small and blood was everywhere.  I still remember pressing the wound in my bare hand as blood dripped onto the sidewalk.  I remember carrying him up that hill as I yelled for my dad, who was mowing the lawn- hoping he would see me and come help.  I yelled louder and louder in desperation until finally he heard me and came running to help.

Days later Ben wanted to walk down that sidewalk again and see the blood.  He wanted to retrace his steps on the route to the accident.  It was as if he was memorizing the scene in his mind.  And then, we turned around and walked back to my parent's house.

A year later, as we sat at a restaurant waiting for dinner, Ben looked at me and asked, “Why did you yell?”

By now I’m used to conversations that start in the middle.

“Yell about what, Buddy?” I asked.

“Why did you yell when I fell off my bicycle?” he asked.

“I yelled because I needed your Papa’s help,” I explained.

“What’s blood made out of?” he asked next and we talked about blood and then the conversation became a circle of questions about what different parts of our body were made out of.  

A few months later, he would bring the bike accident up again in the car on the way to school.

“When I fell off my bike, I bleed.  But I did not die.” he explained.

"No, buddy, you did not die," I repeated.  "You were fine."

“I want to be with you forever,” he added.

"You'll be with me a long time," I assured him and secretly hoped it would be true.

“Will I live to be 100 years?” he wanted to know. 

Another recurring conversation we have is about death and heaven. 

Ben has been fortunate that he has not had to deal with much loss in his six years on this planet.  Last year Ben won a free goldfish during an Easter egg hunt.  Despite our best attempts to keep the darn fish alive (which included purchasing a rather expensive tank, filtration system, and specialized water and food), the fish eventually died a few weeks later. 

One morning when we woke up and looked into the tank, the little fish was resting at the bottom.  I knew the creature had finally passed away.  When Ben looked into the tank, I explained to Ben that his fish’s body was now like an empty shell.  His fish wasn’t alive anymore.  I then quickly ushered him out of the room so that Dad could take care of the disposal.  We did not replace the fish, and Ben really didn’t ask many more questions about the fish at the time.

Weeks and weeks later, Ben brought up the goldfish again. 

“What’s dead mean, Mommy?”  he asked.

“When someone dies, they are no longer alive on this Earth.  Their body gets buried in the ground.”

“Will the fish go to heaven with Michael Jackson?” he asked. 

Now that question would most likely seem odd to an outsider, but I knew exactly why he asked this.

Ben went through a Michael Jackson phase where he loved hearing his music on the radio.  We didn’t encourage this fascination, but it persisted for a few months anyway. 

In one casual conversation over a year ago I had mentioned that Michael Jackson had died, because Ben wanted to see him in concert.  On several occasions since then, Ben has talked about Michael Jackson in heaven. 

“What’s heaven look like?” he asked next. 

“No one knows for sure,” I answered.  “But the great thing is that one day we will all be together in heaven forever.”

He paused and I could tell that his mathematical brain was trying to calculate eternity.

Just because Ben often speaks in simple sentences with speech errors that sound “cute," it belies his age and the deep thoughts that are well beyond his years. 

Yesterday a hailstorm hit my parent’s house and the house of my brother and sister and law. 

My mother sent pictures of the balls of hail. 

Ben studied the picture and asked a variation of a familiar script.

“What’s hail made out of?” he asked.  He always wants to know what things are made out of.

“Hail is made out of ice that falls from the sky.”  I patiently explained. 

“Why?”  he asks. 

“Hail is one kind of storm, like a tornado or a hurricane.”  “

What’s a tornado made out of?”  he asked next. 

At first glance, it would appear that our conversation was stuck, as if revolving in circles back to the same ideas over and over.  I imagine that this is probably similar to what the evaluator must have heard when she had a conversation with him.  But on that day our conversation went on.

After we discussed tornadoes a bit more, he wanted to watch a video of a tornado, and so we did.  The video showed the funnel cloud moving towards the camera and then the destruction after the storm.  The clip ended with a man standing in rubble where his house had once been. 

“Is Nana and Papa’s house gone?”  he asked. 

“No, their house is fine,” I answered. 

“Did the hail destroy the house?”  he pressed again. 

“No, buddy, it’s little hail, and their house is strong.  It is fine.” 

“Is our house strong too?”  he wanted to know. 

“Yes, buddy, our house is strong.  And if a storm is coming, we’ll know it and will go where it is safe.” I reassured him.

"God keeps you safe," he replied and headed up the stairs to bed.

It’s tempting to look at the surface and assume that a child on the spectrum is capable of literal thinking only. 

It’s tempting to believe what we often hear- that those on the spectrum aren't capable of thinking deep thoughts, empathizing with others, or making inferences. 

I believe that our children know and see a lot more than we think they do. 

I have learned to trust in son’s capability to understand concepts on a much deeper level than I can even imagine.

I have learned to presume competence.