Progress Note

Years ago, I began reading The Reason I Jump by Naoki Higashida. Naoki is a non-speaking autistic young man who communicates through the use of an alphabet grid and computer. I was eager to read his thoughts, hoping to unearth insights into my own daughter, hoping to find a reason to believe that she too had words inside waiting to be unlocked. But as I read, I discovered that Naoki did have some spoken language. It was largely echolalic language, but that fact alone caused me to put Naoki in a different category, a “higher” category than my girl. Rhema had no spoken language – the few words she was able to say when prompted had essentially faded away. I reasoned she could not achieve the level of communication Naoki had. Deflated, I put the book away.

I didn’t realize my error: mistaking communicative non-functionality for mental non-functionality.

Thankfully, thankfully, my misconceptions began to change in 2015 when an RPM (Rapid Prompting Method) provider taught my daughter an age-appropriate lesson on the Ice Age, and I watched her respond appropriately and accurately to questions about the lesson. Later I would discover that my 11-year-old (at the time) whom I thought did not know the alphabet letters had taught herself to read at age 5.

Much of her schooling and therapies seemed to be structured around the concept that Rhema’s severe autism represented developmental, cognitive delays. I never questioned the experts who said we should speak to her in simplified one and two-word phrases: “Give ball”, “Shirt on”, “All done”.

It did not occur to me that when she consistently failed to properly identify the tree in a 3-picture array that it was because of a mind/body disconnect. Her finger tapped the picture of the car in the array while her head composed poetry:

TREES HAVE MISTERY IN HOW THEY MAKE MUSIC
THEY MAKE MUSIC GLORIOUSLY
HOW THEY SING
TREES SOUND LIKE MUSICAL NOTES IN MY EARS

Rhema words, along with other autistic non-speakers or minimal-speakers – Ido, Emma, Phillip, Coco, Graciela, Kaylie, Josiah, Diego – opened my eyes and continue to teach me. I listen to them now, their voices the loudest.

As parents and educators, what will happen if we begin to re-think long-held assumptions about autism? If we resist comparing individuals to non-autistic or even autistic peers (like I did with Naoki) and see their development as their own? If we stop pretending to presume competence and truly do it? What if we assume that behind the silence and the erratic impulses and the lack of eye contact and seeming lack of attention, there is a mind as creative, inquisitive, insightful as our own… what if we adjust the curricula accordingly? No harm done if we do. But what if we don’t?

Less than a year ago, at age 13, Rhema’s school progress notes said the following:

“Rhema is asked to point to hard or point to soft, when presented with a hard wooden ball and a cotton ball. Rhema was 67% correct with teacher assistance.”

“Rhema worked on identifying name, letters and sounds for B, D, and F.”

“Rhema completed a labeling functions of objects program (crayon, book, chair and pencil).”

This year Rhema is homeschooled for language arts and history and enrolled in middle school math and science classes. She is studying everything from geometry to Newton’s Laws of Motion. It’s been a long, hard road. It’s still hard every day. Her anxious body betrays her constantly. She needs many, many breaks. It can take an hour to type a single paragraph. Some days her body is so disorganized, she cannot type at all, so she spends hours trying to get ahead on the homework. She is thrilled to have homework.

Her teachers have written that Rhema’s test scores have been regularly strong and she demonstrates good mastery of the topics covered. In fact, she received all A’s on her report card.

She is sharing letters with friends, speaking to college classes, contributing to a book, and participating in the TASH Atlanta conference next week. She sits in the back seat of the car with her sister and the letterboard and entertains us with stories and rhymes. She’s an incredible storyteller. It’s a suffocating, terrifying thought to realize that I might never have heard her stories.

All she needed was a chance.

She needed teachers and a learning community that dared to see beyond the challenging “behaviors” and find her strengths, to include and welcome her (– keyboard, letterboard, crazy-Mom-aide and all), to value her as any other student.

It’s so important. It’s life-altering. It’s hope, new hope, for our Rhema.

~Rhema and Hope’s mom

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i am so happy about my grades . i remember when i thought i would never be able to make my thoughts heard . now i am going to school and finding the world and my dreams . only god knows how much i have longed for this. you are not underestimated all your life only to be given a chance to exercise your in telligent mind. but it has happened to me . my good god made a way. my good teachers dont treat me like a baby . my really good mother never gives up. my really good father never stops supporting me. my really good hope always encourages me to do my best . like the way my teachers said i am a blessing to have in class. the end. love rhema .

Snippet from Rhema’s recent report card.