Finding an Angel Buddy

We spent our last blast of summer at the beach. Jessie swam in the ocean, sifted sand on the seashore, searched for wild ponies, rode a go-kart, and went to an outdoor concert. To top it off, our hosts provided delectable meals. While we ate like kings, as soon as we returned home, our “see food” diet ended and we returned to making wise choices.   

We didn’t know it at the time, but Jess was spotted at the concert. There was another Angel mom in the audience, but we didn’t learn this until I saw her post in Angelman Connections asking, “Who was that Angel?”

It’s rare for us to meet Angelman families, so I wish this mom had come over to say hello. I’ve read about other people seeing Angels in the community, but more times than not, they don’t approach them. Most likely this is because they don’t want to intrude.

This got me to thinking: Maybe we need to have a code sentence? Something to the effect of, “Do you happen to know an Angel?” For some reason, this reminds me of the Grey Poupon commercial except there would be no snobbery. (There’s an updated commercial that is rather amusing, and Jessie gave it two thumbs up.) Often, I have met people from my home state while traveling afar. You can’t help but feel a connection when you share something in common.

To me, there’s a difference between meeting an Angel family and someone who is just curious. I will shut them down if they say, “What is wrong with your child?” The only exception is when they ask about Jessie’s AAC device. The last time we traveled (to a family wedding), Jess was stopped because a parent saw her Talker. She wanted to know what program she was using. It’s rare to see someone using a computer to talk, and Jessie doesn’t mind those types of questions.

We know that parents need to take matters into their own hands. They should not rely solely on their schools when it comes to AAC. While some schools are current, many are not. Unfortunately, too many believe that your child needs to meet certain criteria before considering an AAC device. That is a myth.

This morning, I had coffee with an Angelman mom in Kentucky. If you don’t know an Angelman parent then find one! (Courtesy of Mary Kay)

Because Angelman syndrome is considered rare, many families have lamented that they often feel isolated. In response to this, a few fellow Angel parents and I have started a Facebook group, Angelman Syndrome — Find a Buddy, for the sole purpose of connecting with other families. What makes this different from other groups is that it isn’t a discussion group, but specifically a social network for you to find another parent who shares your interests and who understands firsthand what it takes to raise an Angel.

Upon joining (we screen to avoid the creeps from having access), share something about yourself and your child. Ideally, another parent will read your story and want to connect with you, or maybe you will see someone who shares your interest. You may find that you are already friends and didn’t know they, too, wanted someone to chat with, especially those times when the effects of Angelman has you down and feeling out. Even if you already have support, maybe you can reach out to another who is in need, or suggest this group to a parent whose child has been newly diagnosed. 

The more people you know, the bigger your world gets. There is no reason to feel alone.

To read more about our journey, visit my blog. We wouldn’t even have a story if Jess hadn’t found her AAC voice. Also, check Angelman Syndrome News on Fridays for my upcoming columns.

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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 Services, and are intended to spark discussion about issues pertaining to Angelman syndrome.