The Joseph Robert Shaw Foundation

Helping Children Recover from Brain Injury

Sibling Love

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Right before the whole world shut down for the COVID-19, my daughter and Joey’s older brother were home from school so they both participated in my session with Joey. My daughter was thrilled to get to see Joey again and read the high frequency words along with him. I think Joey’s older brother may have been happier to have not joined our group of kindergarteners, but he was a huge help regardless.

I like to think I know Joey pretty well, although I often worry that sometimes I give him too much credit. It’s that sad special education teacher voice in the back of my head that whispers, you saw it once, but have you seen it 8 out of 10 times? How do you know it’s mastered? That voice forces me to be overly cautious sometimes, although even then I like to think I am responsive to Joey.

And yet, in this group session, I was taken aback when multiple times during our session Joey’s brother quietly and respectfully interrupted me. “I think he’s saying share because they are sharing in the story.” And yes, that is exactly what Joey was saying. I’d been showing Joey the math word half that I was targeting, and after introducing that had already moved on when it appeared he randomly said “share.” Of course it wasn’t random, it was just a delayed response as he found the word share in his device. It took his brother, who is familiar with Joey’s rhythm and thoughts to know this. 

Later in the session Joey became slightly agitated and was looking at a specific place in the room. “He wants to play with the robot,” his brother explained, to which Joey replied, “Understand” and gave him a loving gaze.

His brother gets him. 

We all need someone who gets us, who knows our facial grimaces and can read our minds when we are trying to be polite to the rest of the world. I don’t know why I was so surprised by how fluidly Joey’s brother was able to interpret for him, but I was. I suppose it is because my own girls have the same age split as Joey and his brother, and I’m not sure my oldest can read my youngest quite as fluently. But she doesn’t have to. My youngest usually makes her intentions clearly known to the outside world. Joey can’t. 

I love how Joey watches his brother with such love, and how his brother shares that love back with him. I’ve known other siblings in similar situations where the typically developing sibling downplayed their sibling’s abilities. Joey’s brother doesn’t do that. Instead, he brought them to my attention, not letting me, Joey’s teacher, go on without fully seeing what his brother can do.

Silly Joey Moments (that reveal so much about him)

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When I arrived at Joey’s house on Friday afternoon he was in a great mood. He was giggling and excited to read, and his personality shone throughout our whole session. We were reading The Gruffalo, which is about a mouse and an imaginary yet real scary monster. As we read about the scary Gruffalo with his terrible teeth in his terrible jaws, I tried to use it as an opportunity to model using body part words like teeth, tongue, knee, leg, back, etc.

I am not sure if he meant to or not, but every time I asked Joey something where the answer should have been teeth, he selected the word tongue. The words are next to each other, and at first I thought it was an accident, and that he was having trouble selecting the correct word. I’d select teeth for him, and he’d quickly click tongue after I’d hit teeth. Hmmm….  “Are you playing with me?” I asked, and he began to giggle. “Love tongue” he responded.

Later in our session he giggled at everything that silly turkey did in Red Hat, Blue Hat, and giggled whenever we used his device to say “Uh oh” when the turkey was dressed wrong.

As we neared the end of our session Joey went into the words and hovered over the word fall. He didn’t select it though, so the screen remained on. Then he picked up the stuffed owl he’d been playing with, held it up high, verbally said “up!” and the dropped his owl. After it fell he turned back to his device. “Fall” he said proudly.

Yup. He labeled exactly what happened – owl went up, and then it fell.

Although the moment made me smile because Joey was so intentional about dropping his owl and labeling it, the falling owl also reminded me about how difficult it must be to communicate on the AAC device. How often do I review words I’m going to say silently in my head, ahead of time? How often do I plan out my speech? Joey may be able to do that internally, but that doesn’t help him pull the words up onto his screen any faster. And when he does know a word he wants to use he may get frustrated or have trouble finding it before the incident and selecting his word. How often do I assume Joey randomly selected a word, or that he hit the wrong word, when really Joey was simply trying to label something that happened many moments before.

The “fall” incident reminded me to continue to presume competence when I’m working with Joey, and to continue to give him significant wait time when supporting his work on his device. It also served to show me just how much Joey is planning his communication ahead of time. This forethought, while small, represents the beginning of important executive functioning skills Joey will rely on the rest of his life.

 

Reconnecting

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Unfortunately, Joey and I were apart for almost a full month in April because I broke my ankle and couldn’t drive. It was wonderful to finally get back to see him last week. In just a month it seemed that he’d grown multiple inches! I was hoping that we’d easily get right back into our familiar pattern, and I hadn’t planned to do anything different or out of the ordinary during our sessions. I was excited to read Harry the Dirty Dog with him, so I dove right in with my plans.

Joey had other ideas. He wanted to talk. He listed every animal on his device, and then listed them again. He told me about helicopters and airplanes and occasionally let me read a page or two of the book. At one point he used his device to say “stop mouth” which I’m pretty sure was his way of asking me to stop reading so he could talk. That was one of the only phrases he used during that time. What was going on? The last time I’d been there Joey was full of early phrases and was starting to explore pronouns. And now?

We were both frustrated and both of us felt like we weren’t getting anywhere. I had to take a step back and remember that our relationship is more important than the work I’d carefully planned. (Didn’t he realize that Harry is such a fun book?) I’d just brought myself and my show to the table, and I hadn’t left any room for Joey. I think we do this often as teachers, especially at this time of the year when we are feeling the deadlines of the end of the school year approaching. Luckily, I don’t have that worry with Joey, but I think I did want to make up for lost time.

I needed to back up, slow down, and remember the boy in front of me. The smiling four-year-old with so much to say. So I paused, listened, nodded, and tried to acknowledge his list of animals. Once we were connected, we could move forward.

And we did. After re-connecting and taking time to rebuild the relationship, Joey dropped his musical shaker on the floor. He looked at what he’d dropped and then at his device. Carefully he selected different hear and then looked at the other egg shaker sitting on the table. He was asking for other musical instrument – the other instrument he can hear. We were back to meaningful communication with two word phrases.

It’s easy to forget how important our relationships with our kids are, and how much more they are capable of when we are working with them instead of teaching at them.

*On another note, I do not think Joey appreciates Harry the Dirty Dog like I do. Instead we are now reading Groovy Joe, which is a bit faster and more animated.

Saturday Serenade

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