The reading emergencies

After many different assessments, by the time my daughter turned two, she was diagnosed with autism, communication impairment and intellectual disability. She couldn’t reliably express her needs, or respond to questions or demands. 

The only meaningful verbal sounds she made were reciting the alphabet and counting to ten. She could engage in a back-and-forth with the alphabet, filling in any missing letter, and did the same with numbers. Around this time, she also developed an interest in Sesame Street. 

Early intervention introduced PECS, a picture-based communication system. Once she learned to select an icon for the toy or food or activity she wanted, she became noticeably happier. She also began to sing songs with words she had never spoken aloud. She sang on her own, and if someone sang “twinkle twinkle” she’d sing “little star.” 

When she was four years old, we bought a first generation iPad. We were learning to use it along with her. She enjoyed the interactive books, and some apps. But what she loved the most was doing Google image searches. 

I typed “Elmo” into the search bar and showed her the endless grid of Elmo pictures. Soon, she found her own creative ways to ask me to spell. At the time she didn’t point. She would hand me her Elmo plush, thrust a book with Elmo on the cover onto my lap along with the iPad. She quickly started showing me other characters she wanted to look up. 

“Elmo” was the first word she spoke out loud. Within a short time she had a spoken vocabulary of Sesame Street characters, and was saying “no” appropriately. She said “no” so emphatically that her preschool teacher taught her to say, “No, thank you” 

In preschool, her class used Handwriting Without Tears, a multi-sensory early literacy curriculum. She loved “Mat Man”, a figure  students build out of wooden shapes before using those same pieces to construct letters. 

Her teacher noticed that spelling aloud was helping her auditory processing and encouraged me to respond to her requests phonetically. By then, she could mostly spell Elmo, and often got the first letter of the other characters she wanted to search. 

 I followed this advice for a while. Eventually, her search requests grew to more than one word, and it worked better to write them down. This created a monster of the best kind. She asked for an expanding variety of words. 

By the end of preschool, the majority of her classmates with similar disabilities had developed functional literacy skills. She could spell her name as well as her favorite characters, while others could pick their name out of a list. All the students could follow visual schedules, respond to timers and basic classroom instructions. They were also taught the concept of a break from demands, given supports to complete tasks, and showed varying abilities to express their needs. 

From there, she went to a self-contained program, for kindergarten through second grade. Right away, the concept of sight words was introduced, and the goal was to memorize 500 sight words. These words include “the”, “and”, “but”.  

I insisted the goals around phonics remained, and it was easy to tie them to speech goals then. At first, my daughter did pretty well at demonstrating memorization of words she had never spoken. The teacher essentially told me, this is what the district mandates, and it seems to be working. 

At home, however,  it felt like a non-stop spelling emergency. 

She didn’t seem to retain how to spell commonly used words like she had before. Every time she wanted to spell, she froze up and panicked. To a child who hasn’t been taught to decode phonetically, a word is a magical, rigid picture. If she forgets one line of the picture, the word is gone and access to her favorite things disappears. 

The students in her self-contained grade 3-5 class, who were mostly nonverbal, received iPads with communication software. The students called them talkers. Speech therapists were trained in Augmented and Alternative Communication (AAC). It seemed at the time, as though the district switched from supporting literacy to an AAC device, though the two should have complemented each other. 

Meanwhile at home, life was still all spelling, all the time. Her distress about it only seemed to grow. 

I wrote on scraps of paper, then whiteboards, and eventually dedicated full pages to individual letters. Over one of the school breaks, we collected all her custom word lists and with her input, I typed and printed a personal dictionary. We updated that dictionary together for several years. 

By middle school, she would type the words as often as use the built-in icons on her talker. She managed her own calendar and used timers. But she was still in that spelling emergency mode. Her spelling and search requests continued to evolve and became more detailed. There were more instances where I couldn’t figure out what word or phrase she was asking for. 

We gave her an old iPhone, and I texted her the answer to her next spelling request. She loved this. She would hold the phone up to her iPad and type away. 

When she got frustrated with me for misunderstanding her, I’d have her hold her phone and watch me type while I said out loud what I was hearing her say. She’d lock in, and I could see her processing the text. 

Later, thanks to a local SEPAC parent, I learned I was acting as a phonics instructor, teaching my daughter to connect the sounds she made to the letters on the screen in real time. 

 Around this time, she was also having anxiety about when her father would return home from work. I had him text her that he’d be home in twenty minutes, and after only a few repetitions, she was able to read the text and set her timer independently. Her anxiety vanished.

By middle school I was convinced that the focus on sight words had contributed to reading anxiety in my daughter, and that school was at best going to be a place for her to practice skills she learned at home. 

When she started the high school life skills program (GOALS), her teacher handed her a set of Bananagrams letter tiles to see what she could do. She spelled, “I want a break please.” 

Way back, during preschool, she learned to request a break with picture icons. In high school, she generated the words herself. Literacy had become part of how she communicated. 

Last fall, she started in the adult transition program at the high school. She seems to have mostly overcome her reading anxiety. Spelling emergencies are now rare, and she asks me to spell words less often. Her go-to for more information about something is to look it up. 

Her final triennial assessment evaluated her reading at about a third grade level. At last, the system officially recognized her as literate. 

But of course, I already knew. She had been using reading and spelling to navigate her world for years.