BAM Family

BAM Family

Thursday, September 3, 2015

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....

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

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