When the Learning Gates are Closed: Searching for Answers

This is our story of discovering how to parent and educate our son in the best way possible. It is scary to write about this topic because it is intensely personal and it concerns my child, whom I always want to treat with respect. However, my goal in writing down our story is to give other families hope and direction. If you need hope and direction in your parenting journey, welcome. I share our story for you. 

You can read Part 1 of Benji's Story here.  

After I talked to the teacher at the Back to School night, I wavered between feeling unsettled and proud of myself for "doing the right thing." I DID do the right thing--I said something to the teacher. The ball was in her court. She would observe and make recommendations as the educational professional. I looked forward to hearing her thoughts at the Nine Week parent-teacher conference.

Nine weeks passed.
I left the conference feeling confused and irritated.
I had talked, shared my concerns, again....but I didn't feel heard.
I had asked questions...but didn't get clear answers.
I had requested her opinions about my son...but she never "got around" to sharing them.
She wanted to "wait and see."

I had thrown the ball. She was supposed to throw it back, right? But I realized after the meeting that she had not caught my concern. The ball was still in my hands.

I didn't want to wait. I needed to search for answers myself.

First I wanted to rule out any physical problems. We took Benji for an eye exam. He had a slight astigmatism but he didn't need glasses. I checked that off my to-list.

But what was the next step? I literally felt paralyzed. I needed answers but I didn't even know what questions to ask. Finally, on October 4, 2014, I wrote a facebook post in a private moms group I belonged to.

"Moms, my husband and I have been concerned about our son (now in 1st grade) for over a year that he may have a learning disability, such as dyslexia. I have spoken to teachers, etc. and we are monitoring but I am leaning toward trying to get him officially tested. Someone recommended Hutcherson Early Learning Center as a testing location but this resource seems like it is just for pre-school children. Can anyone offer some direction for me? I can't ignore the signs or my intuition on this." 

Information came pouring in. Some recommend this testing center or that service. Others shared their stories of how they went through special education testing. One mom gave me a link to the Virginia Special Education Guide. I clicked through but was so overwhelmed that the only thing I grasped from the handbook was that I needed write a formal letter to the school if I wanted them to conduct testing. 

I felt like the school was ignoring my son (this actually wasn't true, but it was how I felt last school year) since the teacher wasn't seeing what we were seeing. I needed another way to get answers before I wrote any formal letters. 

One mom said she had her son tested by a woman in town who was a "lay-expert" in dyslexia. She had traversed these waters with her two sons, both severely dyslexic, and now her sons were grown, in college, and successful! I got her information and wrote her a message on Facebook: 

Hello Ms. _____ I am sorry to contact you about a formal issue in such an informal way as facebook but your name was given to me by several mom friends about testing for dyslexia. I was wondering if you still do official testing for learning issues such as this.
My husband and I have been noticing issues with our son, Benji (1st grade) since last year such as: 
1. Inverting numbers/letters when writing
2. Sounding out words backwards or from the middle letter
3. Writing words backwards Writing words of a sentence completely out of order
4. Not being able to read common sight words, even after just seeing the word Etc.
Benji is at ________elementary school. I have spoken to teachers but have not gotten the information, ideas, or support about how to help him with these issues.
I would love to speak with you more, if you have the time. Thank you!

I wondered if I was crazy sending that message. I wondered if I was just making things up. I wondered if I was doing the right thing. But in the middle of all my self-doubt, I took the first step.

She contacted me within a few days and we set up a meeting for testing on October 20.

The testing was very interesting and actually fun for Benji. She had him read and write for her, as well as repeat strings of words, directions, and re-tell a story. He did balancing exercises, eye tracking, and threw a ball with his right and left hand, as well as other tests.  We spend almost two hours with her.

"So, do you think he is dyslexic?" I asked, as Benji played Angry Birds with one of her grown sons on his iPhone.

Her eyes and voice softened. "It isn't that simple. Dyslexia is actually difficult to diagnosis and I am only an expert on my own children. One of the formal marks of dyslexia is "being behind two grade levels in reading." Since he is only in first grade, it is difficult to know...or assign terms." 

Then she talked about Learning Gates. She used this term to describe how the brain responds to four different avenues of learning:  visual, auditory, writing, and spatial (how one's body moves in a given space).

Her initial assessment shocked me: "From the tests, it seems to me that most of his learning gates are partially, if not fully, closed."

"What does that mean?" I asked.

"It means that the right and left sides of the brain are not communicating with each other through wide open pathways. His pathways, or gates, are shut. When something is blocking that gate, learning cannot happen."

I nodded, taking it all in. It was like trying to swallow the ocean.

She wrote up an official report so I could share the results of her assessment with his teachers, etc.

We got the next 9 week report card: The results were not good. So many U's. (Unsuccessful). My heart was breaking for my little boy.

I scheduled another meeting with the teacher. Again, despite all my best communication efforts, I felt like we were not on the same page. She seemed nervous and intimidated. She didn't hold my my concerns with the weight that I held them. I felt the strange need to soothe her during our meeting, when in reality, I was one who needed to be reassured. I told her that I would email her a copy of the testing results.

I forgot to send the email. By now it was late autumn and I was very pregnant with our fourth son. The holidays pounced and consumed my time and thoughts. My belly grew larger and my due date crept closer. 

I tried to carve out the mental space to think about Benji. I unearthed the Virginia Special Education Guide and read about how to request formal evaluation: I needed to write a letter and give it to the administration. 
I read about my legal rights: After my formal request, the school was required, by law, to refer my request for evaluation to a special education team. 
The team was required to contact me within 3 days to let me know if they would evaluate my son. Once they decided to evaluate, we would be on a 60 day time line for the testing.

I decided to write a letter.

To be continued....
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More Posts about our Journey

When Silence is Full of Words
It Means You need to be Strong and Brave: Telling my Son about his Learning Disabilities
Reading Sucks

If you think something is wrong, trust your gut

This is our story of discovering how to parent and educate our son in the best way possible. It is scary to write about this topic because it is intensely personal and it concerns my child, whom I always want to treat with respect. However, my goal in writing down our story is to give other families hope and direction. If you need hope and direction in your parenting journey, welcome. I share our story for you. 

I remember conversations I had with my husband last summer, 2014.

"He's really struggling. I tried having him read to me today. It was miserable. He has to sound each word out, even if we just read it two seconds ago. Or he keeps starting with the middle sound or the end sound. He gets so angry."

"Is he still doing the reversals?"

"Yeah."

"I noticed that too, but when we were doing some number stuff last night."

"Do you think I should say something to his new teacher?"

"I don't know. Maybe."

I didn't really know what to do. I knew that lots of Kindergarten, and even 1st grade, students have trouble with reading and reversals at times. But I had that little niggling feeling.

And this time, I decided not to ignore it.

I say "this time" because I have had that feeling about my son in the past, a feeling that made me knit my brows and say "hmm...I wonder..." Other times I would throw up my hands in frustration and wonder which one of us was riding the crazy train (probably both).

 Even when Benji was two years old, my husband said, "There's just something...I don't know. That kid's unique."

We talked about how Benji lived in his own little world. We described him as "quirky," "zany," and "his own person." We joked with him: "Which planet are you on today, Benji?" And he would answer us--in great detail! Oh, his little sense of humor!

But I struggled to understand him.

I can't tell you how many times I've covertly googled "Autism symptoms," "Learning disabilities," and "Dyslexia." I've scrolled through dozens of lists, articles, stories  but have always come up short: "No. He doesn't fit that list...not quite. We fine. He's fine. Besides, if something was really wrong, someone will say something."

I mean, he was in day care and preschool off and on from age 2-4. Someone would say something if something was really wrong.

Right?

We chalked his struggles and behavior issues up to his age:
Well, he's only 3.
His teacher will say something if there is something going on.
LOTS of preschoolers act like that!
Well, he IS a boy! 
He's so young.
Lots of kindergarten students do that.

And suddenly, he was almost 7 and I was running out of excuses.
Yet...not one of his teachers or caregivers ever said anything to me.

And that meant nothing was wrong. Right?

I placed so much of my trust in other people's professional opinions that I stifled the growth of my "mother's intuition."

Sure, I had learned to trust intuition in the past--and it had been right. But my intuition had been about physical, medical problems.

This...this had no name. It was something I couldn't see, couldn't put my finger on. It changed, morphed, disappeared, and then violently resurfaced. Some days we were fine.

Other days, we were...not fine.

So I decided to stop ignoring my gut.

I sat down with Benji's first grade teacher at the Back to School night in early September and told her of some of our concerns. I asked her to keep an eye out for some issues we were seeing.

When our conversation was over, I was glad I talked to her...but I didn't feel any better.
Did she believe me?
Did she think I was being "that parent," the hovering, over-indulgent, coddling type?
Did she even take me seriously?
Would she see what we, as parents, saw?
Of course she would! She was a professional educator. As a professional, she would be able to tell us if something was wrong.

Right?

I didn't get any answers that night; in fact, taking my concerns out of my head and talking about them just added more questions and worries to the situation.

But, that night, something important happened: I stopped ignoring my gut, even if my intuituion was about something that I couldn't see, or quantify, or even describe very well.

Something was going on with my son, and I was going to discover what it was.

To be continued....
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Are you ignoring or listening to your gut? 

Following your intuition often leaves you with more questions than answers. But if you think something is wrong with your child, trust yourself. You know your child better than anyone. No "professional" can ever know or love your child as well as you do.

Read with your child in 48 [Hard] steps!

For some kids, learning to read is not as easy as 1-2-3! It's more like climbing a very hard, tall, rocky, frustrating mountain.

Maybe you've climbed this mountain too.

The 48 Steps to reading with your (struggling) reader:

1. Call child. Tell him that it is time to read.
2. Call child again when he refuses to come.
3. Give yourself mental pep-talk (you can do this!!)
4. Let child choose book.
5. Child chooses book.
6. Child throws book after getting stuck on the third word.
7. Child chooses 2nd book. 
8. Child starts screaming at you after you tell him to "sound out" 7th word.

10. Tell child to calm down.
11. Child runs out of the room
12. Tell child to come back.
13. Child refuses.
14. You realize that child needs to "reset brain." Insist your child run around the house.
15. Child screams at you and refuses.
16. Suggest Jumping Jacks.
17. Repeat steps 14 and 15.

18. Take a break to nurse the baby.

19. Go find your child. Fight anxiety that your child has actually run away instead of running around the house.
20. Find child in the backyard. Breathe a sigh of relief.
21. Chat calmly with child about how he needs to work through his "brain funk" by moving his body.
22. Child decides to "move his body."
23. Give enthusiastic praise as child spins on swing, jumps on trampline in a a circle, and hangs from the top of the swingset like a monkey.
24. Child feels better.
25. Go back inside.
26. Child chooses 3rd book, one that he has read before.
27. Open book. Realize that there is an "Instructions for Early Readers" page.
28. Read page quickly to yourself and realize you have been doing everything "wrong" with your early reader.
29. Feel lots of guilt.

30. Child starts reading.
31. Resist urge to correct.
32. Resist urge to say "sound it out" every 2. 5 words.
33. Say GREAT JOB!!! every time you finish a page.
34. Give high fives!
35. Laugh with child at the funny parts.
36. Say "that's a bossy 'e'"
37. Say "sound it out."

38. Wait calmly and silently while child screams at you and then buries head in the couch.
39. Wait some more.
40. When child resurfaces, repeat steps 36-39 twice.
41. Say, "You're doing great!"
42. Say, "Only 2 more pages!"
43. Turn the page. Realize you lied.

44. Repeat steps 41-42.
45. Repeat steps 38-39.

46. Finish book.
47. Give high five!
48. Take five deep breaths and make yourself a cup of coffee.

Helping your struggling reader is no joke. Hang in there, mama. I'm right there with you.

"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.  

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