Using a Sight Word Has My Angel Jumping for Joy
With Angelman syndrome, communication wins should be celebrated
I love it when my 12-year-old Angel expands her world through communication. That happened last week, when Juliana used one of her sight words to ask to go somewhere she loves.
I initially ignored her request because I thought she was randomly pointing to her new picture cards. As a follow-up to Juliana’s individualized education program meeting in September, her speech therapist sent home picture cards depicting eight action words that Juliana should practice.
Like many families, we’re tight on time. There’s always something that demands our attention. In addition, living with Angelman syndrome brings its own dose of the unexpected. However, we practice skills with Juliana during homework time. Physical skills are often practiced incognito during a dance party.
Last week was neither of those events. I’d just come home from work and was ready to transition into our evening routine. I noticed that Juliana continued hovering over the cards and pointing at one. Finally, I picked up the cards to understand what she was choosing. She selected the card indicating “go.”
“No, we’re not going anywhere, Juliana,” I responded. Then, it dawned on me that it was the first time she’d actively sought to use the card.
‘Things that make you go hmmmm’
This prompted me to change my tune. Instead of brushing off the encounter, I said, “Where do you want to go, outside?” It was a start, but not what she wanted. Juliana kept babbling, as she often does when she feels she’s giving us good information.
In Juliana’s mind, she’s communicating quite well. But if you’re on the receiving end of this, it can be frustrating. Getting to the heart of what she wants or needs is often a trial-and-error process.
Juliana is still learning to navigate her iPad as her augmentative and alternative communication device. For now, there are not a ton of options on her screen. However, she’s good at indicating a lot of things by selection. “You’ll have to show Mommy where you want to go,” I said to encourage her.
She continued to point to what seemed like nothing. I figured that was the end of things — that she’d gone on a random pointing spree. Then I noticed her standing near the bulletin board in the kitchen. The board has my favorite pictures of Juliana and her sister, Jessa.
‘Jump to it’
When I looked closely, there was no mistaking what she was doing. There was a picture of both girls sitting with the Chick-fil-A cow. She kept pointing and “talking” about the picture. Juliana loves Chick-fil-A, so I knew where the conversation was headed.
“You want to go to Chick-fil-A?”
I’d hit the jackpot. Juliana flashed the biggest smile and giggled.
I stood there and thought for a minute. After a long day, I was ready to wind down. Did I really want to head back out to Chick-fil-A? Interestingly enough, Jessa had asked me about going there on the car ride home from school. My answer had been no. But there was no way I was going to tell Juliana no on her first successful use of her sight word card. “Yes, we’ll go to Chick-fil-A,” I said.
Juliana did a happy dance and managed several big hops with her feet leaving the ground — she was literally jumping for joy. For a kiddo with balance issues, this is a huge undertaking. Juliana likes to jump, but usually, her legs are doing the motion as her feet stay planted. On that day, she soared.
Since that first successful use of her sight word, Juliana has requested Chick-fil-A a few more times. I haven’t given in again. However, if a trip to Chick-fil-A is all that it takes to get my Angel to practice her sight words, I’ll gladly point my car in that direction.
Juliana, right, and her sister, Jessa, enjoy Chick-fil-A after Juliana requests a visit by using her sight word “go.” (Photo by Sabrina L. Johnson)
Note: Angelman Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angelman Syndrome News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Angelman syndrome.
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