Bracing myself to be the mom of a teenager with Angelman syndrome

Recognizing my Angel's accomplishments as she turns 13

Sabrina L. Johnson avatar

by Sabrina L. Johnson |

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It’s official. I am the mom of a teenager. Parenting a teen is one thing, but navigating life with a teenage Angel will involve next-level motherhood.

We celebrated my daughter Juliana’s 13th birthday this past weekend. Given all the good we’ve experienced in recent months, I’m cautiously optimistic that we won’t face too much of a blow to our already unpredictable norm.

Hormones and puberty have already taken Juliana by storm and held us hostage. Talk about an emotional roller coaster! We experienced similar behaviors when she was around 2 to 3 years old. Like most parents, we learn from the past and try to take the next stage in stride.

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As Juliana has moved through different stages of development, some times have certainly been easier than others. Her infancy and toddler years were mind-boggling as we learned to comfortably live with the challenges of Angelman syndrome. Those difficulties included managing reflux and constipation.

Elementary school came with its challenges, but we had teachers and therapists who always went the extra mile. We were also fortunate to have not one, but two teachers who earned the distinction of teacher of the year. It’s like lightning struck twice.

Two female teachers stand on either side of a girl on the last day of school. The girl, who has Angelman syndrome, has short brown hair and glasses, and she's wearing a white graphic T-shirt and yellow pants. The teacher on the left has blonde hair and is wearing a white tank top and black floral pants. The teacher on the right has short brown hair and is wearing a red and purple striped shirt with a white short-sleeved blouse over it and black pants. They are standing in a classroom, with a desk, bulletin board, books, and an alphabet visible against the wall behind them.

Juliana, center, poses with two of her teachers on the last day of elementary school. (Photo by Sabrina L. Johnson)

The middle school transition has been what I expected and planned for. We feel fortunate that Juliana has landed in the care of another great team. In typical Angel fashion, she’s exhibiting separation anxiety during her morning transition, but once she’s greeted by someone from her classroom, the happiness magically returns.

Hitting her sweet spots

At school, she’s thriving in several areas. The software change on her augmentative and alternative communication device, or talker, went smoothly — so much so that her teacher asked for jelly beans because Juliana kept requesting them on her talker.

Academically, a recent progress report highlighted her 100% accuracy when making correct choices during a reading activity. This is a big deal because Juliana struggles when selecting from multiple options.

She’s also getting more in touch with her artistic side. For years, Juliana refused to hold a crayon. That’s not the case today. In December, her class had an art show, and in full gallery style, Juliana had her own display wall and table.

A black gallery wall features several pieces of art by a young girl, whose name, Juliana Johnson, and picture are posted at the top. The art includes some colorful scribbles, a paper mosaic of a red flower, a collage in the shape of a "J," and a painting of evergreen trees against a gray background.

A collage of authentic scribbles make up Juliana’s gallery wall. (Photo by Sabrina L. Johnson)

Finally, there is the biggest consolation prize. This month, Juliana joined the elite ranks of middle school role models by receiving the honor of student of the month.

A girl stands in a driveway just outside of a garage holding a sign that reads "Proud home of middle school February student of the month" in blue and yellow letters. She has short brown curly hair and glasses and wears a light blue puffy jacket, jeans, and gray boots.

Juliana marvels at her student of the month sign for the front yard. (Photo by Sabrina L. Johnson)

All of her hard work is paying off. And it’s satisfying to see that it’s not just me as her mom recognizing her wonderful accomplishments.

Living with Angelman will always have its share of ups and downs. But in this early stage of adolescence, I’m proud of my Angel, who is finding her stride in a new school and a difficult season of emotional and physical development.

The next few years won’t be a cakewalk, but we sure are off to an amazing start.

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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