Acceptance Can Be the Greatest Gift for an Angelman Family

So often, I read posts and comments from special needs parents who have horrible encounters when people interact with their children. Through the years, I’ve experienced a few myself. However, that wasn’t the case today for me or my 12-year-old Angel, Juliana.

Because Juliana has less than two weeks until school is out, we are already in summer mode. I decided to pick her up from school. Normally, my husband picks her up, so my arrival was surprising enough. Instead of going straight home, however, we went to enjoy some time at the pool.

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A small encounter

Juliana’s 10-year-old sister, Jessa, went off to enjoy her time in the regular pool. I got Juliana settled in the splash pool near me. She was enjoying her beach ball and the coolness of the water when a small and very cute 4-year-old approached her. The little girl spoke to Juliana, but Juliana barely acknowledged the girl’s presence. Although Juliana seems to relish attention from adults, the same focus doesn’t always happen with other children or peers. We are helping her learn how to interact with others.

And then the questions came: “Who is she?” the curious toddler wondered aloud.

“This is Juliana,” I replied.

“Why is she not talking?” the girl prodded.

Oh, boy, here we go, I thought to myself. There seemed to be no parent in charge of this adorable tyke. My mind raced. There was no way I was going to attempt to explain Angelman syndrome to this little girl. I thought about using the words “special needs,” but I knew it would only prompt more questions.

“She does talk,” I replied, “but she talks differently than you and me.” Juliana started to become vocal and made some sounds between a grunt and a laugh.

“She’s weird and scary,” the toddler said.

“Oh, no, she’s very sweet,” I replied.

Before I could add anything else, the friendly toddler was joined by an equally small friend. I listened as she told her friend that “he,” meaning Juliana, didn’t talk or walk. She concluded the latter because Juliana was scooting after her beach ball. Soon, the two of them became engaged in a game that took the focus off Juliana.

Relief swept over me. I wasn’t sure how this scene would unfold. How can you be upset with toddlers who may not understand differences or a kiddo with Angelman syndrome?

Necessary hovering

While the toddlers played, I stood close to Juliana so that no hitting or aggressive behavior was aimed at them. Angels can be sweet, with loving personalities and a happy demeanor. However, changes in routine or unfamiliar people may cause anxiety that leads to crying or hitting. I can tell that children shy away from Juliana because they don’t understand why she doesn’t look or act like them. However, these two were content to stay and play near her. That was comforting.

Finally, I got Juliana out of the splash pool and gathered our things. The toddler’s dad called over to let her know she had 15 minutes. I hadn’t made the connection that the man sitting to the far left of me was her father. As we got ready to take off, our new friend rushed over, “Bye, Juliana!” she screamed and waved with the greatest of enthusiasm.

“Juliana, say goodbye,” I encouraged.

“Buh, buh, bye,” Juliana stuttered in return.

My heart melted from the quick exchange. I didn’t know if it was the toddler or her father who had prompted the hearty goodbye. It didn’t matter. Two little words made my day. Sometimes, a family living with Angelman syndrome just wants acceptance. It’s nice to have a moment when the differences melt away.

People outside our world may not understand what Angelman syndrome is. Or I may not be in a position to explain it. It’s of no consequence, really. I’m grateful for a darling little toddler who didn’t understand why Juliana was different and didn’t seem to mind. At the end of it all, she just wanted to give a sweet farewell to someone whose company she enjoyed at the splash pool.

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.