Pointing Plays a Big Part in What My Angel Gets to Say
Pointing is one way to overcome communication challenges with Angelman syndrome
Pointing is a skill that is taken for granted. What’s the big deal about taking your finger and poking it in the direction of the subject at hand? Plenty, I’ve learned.
One’s ability to point falls under the category of fine motor skills. There’s more to it than meets the eye. Other fingers need to be out of the way to point. It takes strength and muscle control to get the index finger in the right position.
Pointing plays a huge part in the ability of my 12-year-old Angel, Juliana, to get her thoughts across. Because I’ve seen the benefits firsthand, I don’t take this simple gesture for granted anymore.
For an Angel who is considered nonverbal, pointing is essential because it makes choices possible. Juliana uses picture cards, augmentative and alternative communication, and sign language to speak for her. But she still needs to point things out. This skill becomes ever so important when she is not feeling well.
Last Friday, we went as a family to get our follow-up COVID-19 booster shots. After reading about an Angelman patient with COVID-19 who was hospitalized, I feel it’s the best choice for us.
After a few hiccups from Juliana’s previous COVID-19 shot, I was better prepared this time. Juliana flinched and yelled when she got her poke, but it went well otherwise.
Until the next day.
Juliana was up before I was, and I could already tell from her crying that something wasn’t going well. When I went to console her, she pointed to her arm.
“Yes,” I said, “Juliana got a shot.”
Screaming was her response.
“Mommy, Jessa, and Daddy got a shot, too,” I said as I pointed to my arm. More screaming.
Where does it hurt?
Juliana eventually calmed down as my husband ushered the girls off to breakfast. When they got back, my daughter Jessa told me that Juliana cried and was unhappy the entire time. She had been pointing to her arm.
I grabbed Juliana’s iPad so she could tell me what was going on. “I feel bad,” she pointed out with her Talker. She chose a picture with a doctor and a needle. I acknowledged her shot again and said we would get medicine and relax. She wailed a little more but seemed calmer after communicating with me.
For those who wonder why this scenario is a big deal, it’s because Juliana can help me understand when things aren’t right in her world. No parent ever wants their kid to feel poorly. However, Juliana’s ability to point gives clarity. This is especially important when she’s not feeling great.
When Juliana was much younger, her speech therapist asked me if she would point to indicate her preferences. At the time, the answer was no. Even when we would raise her arm toward an object, she wouldn’t point to it. Today, however, the answer is a resounding yes.
We’ve been working on isolating her pointer finger and making choices for years. We also practice identifying her body parts so she can choose the right area when she’s sick. Juliana points high and low. She’ll select body parts, people, and objects that she wants. It’s a pointing dream come true.
We might still initially get the default scream, but eventually, with her finger raised and ready to work, we can get to the heart of the matter.
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