The Joseph Robert Shaw Foundation

Helping Children Recover from Brain Injury

Art and Agency

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A few weeks ago, I posted about Joey’s monster. 

Joey’s mother recently sent me this picture, and I teared up. Joey’s great-aunt made him gloves with his monster on them. I was surprised by my tears. After all, it had just been an art project, right?

Art is a way we all express ourselves, though (like so much of communication) it involves motor planning and motor control. As children move through development, their art becomes more intentional. They understand the choices and control they can make as they work, and their art is a true expression of themselves.

With Joey, my greatest hope is to give him a sense of intention and agency. Art, and even somewhat silly projects like making a monster out of sticky felt, is an opportunity for him to do that. With the monster, he chose the colors, shapes, and the location of the monster’s features. 

Seeing those same features portrayed on gloves – remembering how he carefully selected each shape and color – overwhelmed me. Those small decisions he made – even where the arms ended up on the paper- are on the gloves for the world to see.

It’s a small thing, and yet, so big. 

My own children love the Make-A-Plate art kits, and love to color pictures at their grandparents that later end up on plates we eat off of for years. (And yes, my mother serves them food off plates that I made back in the 80s.) My girls take time on their art, but nothing like the painstaking labor Joey has to do as he makes choices and then must communicate those choices to me. And now, his art is also captured on daily items. 

So, to this aunt I don’t know – thank you. Thank you for taking the time to honor Joey’s art and capture it on gloves. 

 

The Power of Names

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I opened the door to Joey’s house and found him waiting for me at his device. He looked at me, grinned, turned back to his computer, and said “Hi Miss Ann-Bailey. My name is Joey.” I can’t tell you how exciting it was to hear him say my name – and based on the grin on his face, it seemed like he was pretty excited to say it too.

I hadn’t thought much about the need to add names to Joey’s device. It didn’t seem to be such a priority, considering the need for other highly used words. So I was surprised at how natural it made Joey’s conversation when he suddenly had access to our names.

Now during our sessions, he can say my name to get my attention, to emphasize his point, to ask for help, or to just say hi. Which he did, frequently. It was great. Occasionally, he’d say the name of other people in the house as well, and then crane his neck to see if they heard him. 

I’ve been tracking whether or not Joey’s communication is in response to something I say or if Joey is initiating the communication. Now that Joey has our names, it is much easier and more natural for him to initiate. His communication intent comes across clearer when he adds my name to it. It may seem demanding for him to say “Miss Ann-Bailey, turkey” when he’s dropped his stuffed turkey and clearly wants me to get it for him. And yet, just adding my name adds such clarity around what he wants. Before, he’d just state “turkey” as though he was sending his wishes for the turkey to the universe and hoping someone would magically bring it back to him. Now, he has the power to ask someone specific to get his turkey. He can make it clear he isn’t just randomly saying turkey. Now he can pull my attention to the turkey because he’s assigned my name to it. I was surprised at how much more power and voice this gave him during our session. 

He also had the names of his classmates added, and it was fun to be able to ask him about kids in his class and who he likes to play with. I’m excited to watch and hear how Joey’s social interactions go now that he can address us all by name!

 

Learning Prepositions

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I was gathering my things to leave Joey’s house, when I heard Joey say “under” from the eye gaze device. He’d been playing with a toy bee on his tray and he’d lost it. As I chatted with his mom, he said “bee, grasshopper, fly” and pointed in the direction of the floor. But I was busy with my conversation, and didn’t really notice what was going on. And so, he reached deeper into his repertoire. UNDER. He told me where I could find the item. Independently. Without prompting.

Like so many times with Joey, one small word is so meaningful. 

Usually, when Joey drops items, he points to them. I use the strategy of “playful obstruction”, (also known as playing dumb), and I pretend to be confused about what he wants. This means he has to use his device to tell me specifically what he wants – the toy car, dragon, or bug – whatever he’s been playing with. Sometimes, we work on using the whole sentence “I want….” or “Please give me….” Other times, I pretend I can’t find the item he’s asked for.

“But where is it?” I’ll scratch my head, and pretend to look on top of the cabinet. “Where is that car you want?” I prompt Joey to his preposition page, and he selects a word that indicates it’s on the floor. No matter what he says, I’ll look there. Last winter this meant crawling behind his wheelchair and then telling him it wasn’t behind him, and asking him to try again. Eventually we always find it. (I do all of this while reading his frustration level. We play these games when I know he can hang in there with me on using this vocabulary. I don’t do it to the point of crying or frustration – hence the “playful” part of “playful obstruction”.)

Despite this practice, Joey rarely uses prepositions unless I prompt him to. He’ll label where things are in a book or his room, but it’s almost always after I gesture to the preposition bridge icon on his device. So to hear him independently tell me “bee under” made my heart soar.

Prepositions are tricky, because they are not as meaningful to young children as tangible nouns or physical verbs are. And yet, I once read an article on an AAC facebook group about how someone is far more likely to be able to communicate what they need if they can use prepositions. Even if a child does not have the noun he/she wants on the device, the child can use prepositions to direct the adult in the room to find the item. Prepositions are important when we communicate with each other. 

Joey’s “bee under” as I was leaving was a sign to me that he understands prepositions, and understands how to use them to communicate about where things are in space. As I’ve crawled around on his floor, playing dumb until he tells me where to find his lost toy, this moment is what I’ve been waiting for. 

First Day of School Success!

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Since last week’s post, I’ve gotten texts, calls, and questions about how Joey’s first day of school went. Far more than anyone asking about my own daughters’ first day of school. But I get it. Joey is Joey, and we all spent all summer waiting for this day.

I felt very lucky that my session with Joey was scheduled for a few hours after his first day of kindergarten. I couldn’t wait to hear what he had to say about his day, and how he felt about it all. In my mind, I would sit down and he would immediately start talking non-stop. 

Of course, what really happened is exactly what I had already experienced when I tried to talk to my own daughter about her first day of school. My questions were met with a big grin, and then the subject was changed a few times. These five year olds had already lived their first day – who wants to talk about it again? The five year olds don’t have time to slow down and chat – they have things to do!

Slowly, I remembered that the only way to get information out of my own daughter was to ask distinct, direct questions – so I changed my questions and my expectations, and gained a little more insight.

So how was it? 

When I asked what he saw in school, he said “Teacher”.  Then he said, “please could train bike helicopter?” which either means he wanted to change the subject, or he was asking if he could please take a better mode of transportation to school… Let’s be honest – who wouldn’t want to take a helicopter to school?

I asked how he felt about kindergarten, and I was surprised when he said “sad.” Then he said it again, and finally selected the word happy. After he found happy, he turned and grinned at me, so I knew that was the word he intended to say. He hadn’t been sad about kindergarten at all – he was happy. To the question, “Is the school big or small?” he replied, “Huge.” He spontaneously shared that school was nice, and then looked at the books behind me, clearly ready to move on to get into our normal activities.

Regardless of anything he shared, he was grinning the entire time we talked about his hour in kindergarten. Joey has a gradual start so that he can adjust to the rhythms of school. My own daughter was exhausted after a full day of kindergarten, and I wasn’t sure what Joey would feel after his hour in school. During our session, he was more talkative and on-topic than he had been in awhile. It was great to see his energy from the exciting day come through during our work. 

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My own daughter has a boy in her classroom who uses an AAC device like Joey’s. I got all excited when I heard this, and she just gave me a look. “That’s just how he talks, Mommy.” No big thing.

How do we truly assess student knowledge?

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It’s spring, which means it’s time for end of year assessments in schools all across the country. This year, I’m making no exception for Joey.

Typically, I’m constantly assessing Joey’s skills throughout our sessions so that I can plan our next activities to target what he’s ready to learn next. This spring, since Joey is going into kindergarten in the fall, I thought it was time to get some hard data on more isolated academic skills.

Assessing Joey is difficult merely because of his difficulties with his gross motor movements. He is unable to easily answer me verbally during an oral assessment, he is unable to hold a pencil to draw a picture of what he’s thinking, or circle a letter on a page. Even when we ask him to use the eye gaze, he has difficulty selecting his intended icon, and can take multiple tries before he finally lands on the desired button. So while many kids could fly through the assessment activities and be done with them, it’s a more arduous task for Joey.

And yet – it’s Joey, and his never-give-up personality, mixed with his I-love-a-challenge spirit somehow made the assessments seem like no big deal. In fact, when I began assessing his letter knowledge by holding up two different letters and asking him to look at a specific one, he decided this was too easy. He turned away from my hand-written letters and went into the keyboard on his device – the QWERTY keyboard with all 26 letters and 10 numbers. He used that to find each letter I asked. Who needs silly index cards?

And that pesky problem with not always hitting the correct button? Joey doesn’t stop trying until he’s selected the right one. Then he selects that one twice, stops, and looks at me, smiling. Once we got into a rhythm it was easy to tell when he knew the letter and was just hitting the wrong button because he was hitting each button around the one he wanted. Sure, there were times when he selected a series of letters all over the keyboard. Those times I knew he wasn’t sure what the letter was and was just guessing.

So what does Joey know? So far I’ve only had a chance to assess letter name and sound knowledge.

He knows almost all of his letters names, but sometimes get confused with the B, F, and K. See how they look similar – they each have something in the middle of the straight back stick?

He knows 21 out of 26 of his letter sounds (assessed by saying the sound and asking him to select which letter makes that sound).

When given a word and a picture and asked to identify the first letter of that word, Joey was able to do this for all letters except X.

All these skills are right on track for a typically developing beginning kindergartener. I don’t think any of us are surprised, because Joey shows us almost every day how quickly he learns and picks up on information. Now we need to figure out how best for Joey to continue to learn and show the world what he can do.

Saturday Serenade

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Test post for Saturday Serenades https://www.musichealsglennjan.com/saturday-serenades

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