The Joseph Robert Shaw Foundation

Helping Children Recover from Brain Injury

Who Reads? Creating new routines for learning new skills

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Joey turned to me, putting his eyes directly in line with mine. “Miss Ann-Bailey. Teacher” he said, smiling. While this is true, I quickly recognized the attempt to negotiate with me. My friend, it is only because I am your teacher that we are having this battle, I explained. And I’m holding firm because I know you can do it. One day you will read many books all to yourself. Right now, we are reading this book together. Now, find “IS”.

He gave me a similar look to what he gave me years ago when we first started using the eye gaze and I insisted on him using the device instead of simply looking at what he wanted and laughing. Back then, he believed he had a communication system that worked for him. The idea that I would change this system made him mad. Eventually, Joey and I worked through it, and now he uses his device like a pro. To get here though, he needed to bend and I needed to bend until we found our middle ground.

Now, I am changing the nature of how we read books. When I present him with a simple book that has a repeated pattern sentence on each page, he is not sold on the idea that he should read the whole page to me. That’s not what we do. Miss Ann-Bailey reads to Joey.  Because she’s the teacher. As he pointed out to me when I asked him to read the sentence to me. 

It was not that the task was too hard for Joey. I scaffolded it down to make it fit right with what I knew was an easy task for him. Joey has many high frequency words and can quickly find them on his device. And yet, he still refused to read the sentence. He grabbed the book and hugged it, and then threw it on the floor. He loudly protested. He told me what the last word in the sentence was. He told me the first word in the sentence. He would not, he made it clear, read the middle words of the sentence, even when I helped him find them on the device. Reading, he seemed to be saying, was my teacher job. 

Joey’s mom entered the room at the end of the session and asked who won. Did either of us win? Eventually, Joey selected the word is. Once. But this will resume in our next session, and Joey will learn to read these books. With repetition, persistence, and encouragement, Joey will read words in books just as he learned to communicate with his device, and moved away from his previous communication method of crying or laughing to express his wants/needs. 

I appreciate Joey’s strong willed nature, even when he turns it against me. It’s his greatest strength, and I’ll happily figure out how to meet him where he is to get him to where I know he can go. 

Analyzing Data and Making Decisions

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I have spent the last few hours analyzing Joey’s data over the last year and looking at trends and patterns. I have the opportunity to present Joey’s journey and the data of his progress at both the DADD Annual Conference in January 2020, and at the Council for Exceptional Children’s Annual Conference in February, 2020.

Previously, Joey’s data was fairly remarkable. The last time I had the opportunity to present on Joey’s work he was 4 and a half. He had recently made impressive progress on the number of words he generated in a ten minute time sampling, and the graph this created was remarkable. When I went in and added the 2019 data into the graph, I had a moment of disappointment. I no longer have that beautiful uphill climb I’d seen in 2018.

 

 

Instead, it is more of a mountain range – with peaks and valleys, and currently, what seems to be a decline. 

What’s going on?

more closely at the data, I see that there was a data decline that began in October 2018 and continued into December. It was at that time we noticed there was something wrong with the device, and that device was not responding to Joey’s eyes as it should. The device was sent “to the shop” when he finally got it back in February 2019. A decline from October to December makes sense – it is just a shame it took so long to realize it was not user error, but the computer itself.

I need to spend more time looking at the hard data from April 2019 to see what may have been supporting that spike in words. I suspect (but need to look back to confirm) that Joey had new words added to the device here, and that he was exploring where they were. 

Another decline began in October 2019. (This is interesting, as it corresponds with the 2018 decline as well. Perhaps we should check the device itself again.) My work with Joey transitioned in October to include more academic expectations that correspond with what he is doing in his kindergarten classroom. I am working on not just his communication, but his ability to read the words on a page and identify them on his device. Although he continues to exceed my expectations, this tires him out. After we have read a book or gone through his sight words, he is often tired, which leads to a decline in his output. 

Perhaps I should take a ten minute time sampling of my own five year old’s communication output to compare how many words she says after reading a difficult guided reading book.

I am fascinated by Joey’s journey and will continue to look deeper into his data as we prepare for our 2020 conferences.

 

Learning to Read on an AAC Device

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Joey and I have been working on reading predictable pattern books that are typically introduced at this time of year in kindergarten. Joey is doing well with these books, and shows an understanding of using the words and pictures to recognize unfamiliar words. It’s exciting to watch him grow in these abilities, but there are certainly challenges that arise from making sure Joey has appropriate access to leveled reading materials. 

One challenge is simply selecting the right books for him. I like to use a computer program from Pioneer Valley that lets you put the child’s name into the book. It gives the child at least one firm, known word, and who doesn’t like reading a book about themselves? Yet, when I first began with these books, I realized Joey didn’t have his name on his device. He could say the phrase “My name is Joey”, but couldn’t just say “Joey.” I had to cross out Joey and write “I” over each word. (Joey was quickly added and he can now read his own name, and is working on saying it!). 

Another challenge has been finding books that have words that are on his device already. This week I brought a book to practice high frequency words, only to realize that the main word, “here” on each page isn’t on Joey’s device yet. We can read it together and take turns with the words, but it is not the same as providing Joey with a book he can read independently.

There is also the matter of finding appropriate books. Because I can put a name into the book, the book may say “Joey is swimming. Joey is running”. Making him read a book about himself swimming, running, or jumping seems very wrong. I can put his brother’s name into the book, but that too seems a bit unfair. 

More than anything though, I can tell how quickly he tires from reading. Unlike just learning words on his device and exploring new vocabulary, now he has to be careful with exactly which words he selects. When he is just speaking, he can use words that are similar in meaning to another word if he can’t remember where to find it, or if he is having difficulty getting his eyes to focus on one specific word. With reading, he needs to match the word exactly. Once we finish with one of these books, Joey is exhausted. If I take a ten minute language data sampling after we’ve read, Joey will say only around 11 words, when before the book, he may say up to 30 or 40 words. Over the last few weeks I’ve seen Joey’s stamina grow for selecting high frequency words and reading print on the page. Still, what is a two minute book for a typically developing child, is a ten minute struggle for Joey – not because of difficulty recognizing the words – but just the attempts at finding each word to make a sentence.

I struggle with this, because I see Joey’s potential, and continually am surprised by how fast he is learning to recognize high frequency words. I don’t want to exhaust him, frustrate him, or make him hate reading, but I also don’t want to lower my expectations and have him not get access to the grade level reading standards I think he is capable of. I am continuously looking into new ways to support his reading development that will maintain the high standard without overwhelming him.

Connecting Communication with Grammar

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A, As. Ases. Dog. dogs. Doges. Is. ises. Iseses. 

Joey grins at me as he explores the newly discovered -s button on his device. It’s fun to be able to suddenly add ‘s’ to your words, and he’s enjoyed seeing just how many ‘s’s he can add to a word. At first I felt put out by his distracted activity with the ‘s’ button, but then I remembered that if Joey is going to learn how to make words plural, he is going to have to know how to use the +s button. So explore away. Sillyeseseseses

The most difficult part of supporting Joey’s speech development for me is helping him – as a five year old – understand correct grammar. Parts of speech still feel fairly abstract to teach to young children, and I tend to be more interested in his interactive exchanges and his academic knowledge. Yet supporting him in his understanding of speech that sounds typical will help him better communicate with his world. 

For most of us, we learned to make items plural in our speech by listening to our parents and then copying their speech. If we made a mistake – “Mommy, I want ten cookie,” our mom would correct us, we’d copy her, and then we’d get our cookies (or be told no, ten cookies is too much).

If Joey wants to make a word plural, he has to hit a whole separate button after he selects the singular version of the word. It’s another teaching point – and another button to explore and test out. Right now, he’s enjoying testing it out, and I’m letting him play with it and see how it goes. He particularly likes making silly words – adding ‘s’ as many times to a word as he can to watch the word grow. 

Another grammatical aspect I have difficulty helping Joey understand is when we use ‘ing’ on some verbs, and not on others. The problem here is that the picture of the verb is only on one of the buttons – sleep. Sleeps, sleeping, and slept are all represented with a bucket in different positions. Joey does not believe me when I tell him that selecting the spilling bucket next to the picture of someone sleeping sounds better in a sentence than the picture of sleep itself. “He is sleep,” he insists, regardless of my prompting for “he is sleeping. From a picture and device perspective, it makes sense. He doesn’t want to talk about a bucket – he wants to talk about sleeping. 

I realize that to support Joey I need to take time to support his understanding of grammar and parts of speech more than I would a typically-developing kindergartener. I’m looking for books that let us explore making words plural, and when we can make sentences like “He is running.” It’s also important to remember that while Joey’s sentence structure may be off right now, it doesn’t reflect a decreased ability in communicating – just that learning to speak on a device requires additional learning steps. 

Taking Steps Toward Kindergarten Success

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I was finally able to introduce Joey to my own five year old daughter. She had been begging to meet him for awhile. Joey lit up when he saw that I’d brought him a friend, and quickly found the words “Hi. My name is Joey. I live in Virginia” on his eye gaze device. When she buried her head into my back, not immediately replying in perfect response to his introduction, I whispered that she was shy. His eyes responded with understanding. It didn’t take him long before he repeated, “Shy. Shy” for emphasis. 

Before long, my daughter realized that Joey was a silly five year old, just like her. Maybe it was when he burped, and he quickly announced that he’d done it. “Burp.” in the middle of a story. Or when they competed to see who could answer some of the questions correctly. Both of them clearly wanted to get the answers correct, or wanted the chance to choose the next book. 

My daughter has many strengths, but being a patient and understanding five year old is not one of them. Although I had so much fun during the visit playing with two of my favorite people, I was also able to see Joey through my daughter’s eyes. She asked the honest questions – without malice – that older or more understanding kids know not to ask. “Why does he keep dropping the toys I give him?” “Why do his arms move like that?” “Why does he keep saying numbers next to the right answer, but doesn’t say the right answer?”

They are honest questions, and answering them doesn’t detract from the great kid that Joey is. In fact, I hope that by answering them she can realize he isn’t dropping things on purpose, to be mean, or because he doesn’t like her. I want her – and all the kids in Joey’s kindergarten class – to understand that although his body does not work like theirs, he still has a lot to offer as a friend and classmate. 

After her long string of questions on the way home – and after watching her play “I can only talk with a computer” with her sister – I decided to start working on a book for Joey’s classmates about who he is and what his limitations and strengths are. We are hoping it will give his teachers some words to use to encourage and support positive, understanding interactions between Joey and his classmates. 

Another thing I noticed as I watched my daughter play with Joey, was how the games needed to be adapted slightly. My daughter isn’t fabulous at giving anyone wait time (she actually gave Joey more wait time than she’ll give me), so it was a good reminder of what we are asking other five year olds to do when they interact with Joey. I added this to the book as well – ways kids can interact with Joey so that they can still have fun. 

Joey may not be able to chase his friends around on the playground, but he can roll balls down a ramp or wave a giant bubble wand, making bubbles for his friends to pop. Seeing my daughter with Joey gave me the chance to see how we can put together a recess bag so that Joey can have fun at recess and participate with his peers. My daughter can be my guinea pig the rest of the summer as we test out good five year old games.

We want to set Joey up for success, while knowing we won’t be there to help him in the day to day. Getting him used to group settings, seeing how he interacts with peers, and how they interact with him, is going to help us start preparing him for the kindergarten experience. 

Saturday Serenade

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