“It means you need to be strong and brave:” Telling my son about his learning disabilities

“MOOOOMMM!” He yelled. “STOP!”

“I’m sorry! Sound it out. h-h-h–“

“MooOOOM!” His voice took on an even angrier edge, his eyes flashing irritation.

“Benji, just read it. Sound it out. Start at the beginning.”

“This! THIS!”

“It’s not “this.” There’s no ‘th.’ Sound it out, Honey. “h-iiii–“

“GAHH! MOM!!! I don’t WANT YOUR HELP!” He dropped to the floor and flung his arms around his knees, making himself into a ball, a position that is all too familiar to me.

I was losing my temper and trying not to. We had been at this for twenty minutes.

One Bible Verse: Twenty minutes.

“Stand up! Get off the floor! Let me help you–“

“I don’t want your help!!!!”

“BENJI!!!!”

“No! NO NO NO!”

And we were fighting…again.

I knew I needed to calm down. We have deep ruts down this path, the path of fighting, struggling, pressing forward and falling down…deep down into relational brokenness, all over reading.

But it’s more than reading troubles. We just learned some new names for it: Language Processing Learning Disability and Auditory Processing Disorder.

It affects so much of my son’s daily life: listening; processing sounds, words, and their meanings; understanding requests and direction; remembering instructions; basic, daily communication; and the ever-dreaded reading.

And here we were again, in the same deep, frustrated, angry, miserable-mom-miserable-son, RUT.

“Let’s breathe,” I said. And we did.

He pretended he was a balloon, squeezing out all of his angry air.

I decided to take a step into unknown territory, to forge a new path.

“Look at me, buddy. I want to be a team. Can we be a team?”

“I’m only teams with super heroes!”

“Well, can we be a super hero reading team?”

Then I held him on my lap, my little-big bony boy and spoke quietly into his ears, so sensitive to noise that listening to music in church causes weekly meltdowns.

“Benji, you know how you have trouble listening, and understanding words sometimes? How it’s hard to follow directions and read? Well, it’s because you have something called Auditory Processing Disorder.”

He turned to face me, curious.

“You know how you have pathways from your ears to your brain? Well, sometimes those pathways go…um…” I made a noise that sounded like a cross between static and clearing your throat, because he likes noises. “CHXXXTCH! and the message doesn’t meet your brain in the way it came through your ear.”

He stared at me, his head cocked to one side and said, “CHXXTCH!”

“That’s right! So when the CHXXTCH! happens, it’s hard to listen and follow directions. And it makes reading hard.”

“I do not like to read.”

“I know, baby, I know. How about I read it to you, and you just listen?” So I read his memory verse again. “How ’bout I read it one more time?”

“No, mom! I’ll read it.” He said enthusiastically. And he tried again, he tried so hard.

We stumbled to the last word. “Faithfulness.” I prompted.

“Thankfulness.”

“No, faith-ful-ness.”

“Thankfulness”

“Th-th-th.”

“F-f-f-f”

“FAITHFULNESS.”

“THANKFULNESS.”

And then I saw it, a rare glimpses into my son’s world.

“Benji–do “faithfulness” and “thankfulness” sound like the same word?”

“Yeah.” Duh.

“Ok, I see.” I nodded, reveling in the clarity of this moment. “They really are different. Here, put your teeth on your lips: f-f-f.”

He tried: “f-th-th-f. ffffffaaaiiinkfulness. faaaiiinthnnkkfullness.”

He tried. He tried over and over: “Fainkfulness. Thaithfulness. Faithfulness! MOM! I DID IT!”

“You did it!

“Faithfulness! Fainkfulness!”

It didn’t matter. He was smiling, his brow free from his debilitating frustration. We did a special fist-bump-high-five combo.

He read the verse one more time, halting, stopping-starting, mis-reading, mis-interpreting, pushing through the overwhelming CHXXXTCH in his brain. We finished together.

“One more time?” I asked.

“No.”

I smiled. “Good job, B.” I prompted him to look in my eyes, another task he struggles with.

“Listen, honey. I know this is hard.” I hesitated. Should I go on? “You know, people learn in all different ways. And because your pathways get messed up sometimes, it can be hard for you. It’s because…because of your learning–“

My brain said disabilities but my psyche recoiled. After a year of struggle, worry, testing, research, specialists, fighting, pushing, and so many, many tears, we finally got a name. We have a name for his struggles. But I just couldn’t choke out the word.

“…because of your…uh learning challenges. But that’s ok! Learning challenges just mean you need to be strong and brave.”

“I’m super-strong and brave!” He showed me his muscles.

“I know you are, B. I know you are.”

And I’m learning to be strong and brave too. 

Because this is just the beginning of our journey.  

_________________________________________________________ 

If you were wondering what this post was about, my story today is my first time writing about this topic.

8 Comments

  1. As a therapist who works with young people with developmental disabilities and their families, I jumped for joy when I read this. This is a great picture of how you as a parent accepted his challenges and you're diving in it with him. A parent's emotional reaction to the child's struggles will dictate how the child will respond. If the parent is angry and frustrated, the child will assume he is to blame and build up walls of defense. When the parent works with him in a spirit of learning, fun, and encouragement, the “fight or flight” response doesn't trigger and the parts of his brain that can be used to compensate for the deficits will engage. I love the dialogue here! I hope other parents read this and use it as a model for any challenging situation regardless if they have a developmental challenge or not.

  2. […] welcome. I share our story for you.   I’ve written the beginning of our story here: It means you need to be Strong and Brave: How I told my son about his Learning Disabilities If you think Something is Wrong, Trust your Gut When the Learning Gates are Closed: Searching for […]

  3. […] were very different from their mother. They did not like reading. They did not enjoy sitting still. Listening was hard for many, many reasons. They were not interested in words. They were only mildly entertained by pictures that did not […]

  4. […] The peace grew deeper when we learned that Benji has a language processing learning disability. Then my hindsight sharpened to 20/20 when Benji was diagnosed with high-functiong Autism and Micah with ADHD, just very recently, as they are both now in 2nd grade. […]

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