Squats get added to the list of things my Angel can do

Why it's important to celebrate my daughter's successes, big or small

Sabrina L. Johnson avatar

by Sabrina L. Johnson |

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My 13-year-old can do squats! Big deal, some may think — especially those who don’t know much about the constraints of a rare disease. An exercise that requires bending and balance is easy for the average kiddo. But for my daughter Juliana, who has Angelman syndrome, stooping without toppling over is a very big deal.

My discovery comes on the heels of my lazy workout on a quiet Saturday morning. I’d love to say that I have a kick-butt workout routine that gives me abs of steel. I don’t. But as a care provider, I try to make regular exercise a part of my self-care regimen.

I’ve found my stride with high-intensity interval training. The short, focused routines pack a big punch. This Saturday, however, I woke up and couldn’t muster the energy for even a condensed workout. Instead, I opted for some full-body toning and a lot of extra squats. Shortly after my workout, Juliana and I had a “Dance Party” in our TV room.

A teenage girl with short, brown, curly hair smiles while dancing in her living room. She's wearing a brown T-shirt with what appears to be a rainbow peace sign, and behind her are floor-length windows looking out on a wooden deck.

Juliana rocks and smiles during a “Dance Party” with her mom. (Photo by Sabrina L. Johnson)

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Music Benefits My Angel and Me in Multiple Ways

She can do it, too

“Dance Party” is a moment when she and I stop where we are and sway and jam to some music. As we danced away, I mimicked one of Juliana’s signature dance moves. Her arms poke out like a goal post and she rocks her whole body up and down with intense strength. It looks like she might try to sit down, but she’s standing.

Then it hit me: “It’s a squat,” I thought to myself.

She does this dance move all the time, and I’ve had this fleeting thought before about her go-to dance move. But it became very obvious that morning after my multisquat workout.

I never want to take Juliana’s accomplishments for granted, and this is one of those times. Why make such a big deal about a squat? Much of it has to do with some of the physical limitations that Juliana faces because of Angelman syndrome. Juliana’s squats get added to the growing list of things she can do.

One benefit after another

In addition, I know there’s a family out there who is just learning about Angelman syndrome. They’ll hear and read so much about what Angels can’t do. That’s the speech we got when we learned of Juliana’s diagnosis. So I want to keep highlighting Juliana’s growth and development so other families can see what’s possible.

Finally, Juliana’s creative move is another way to help her become physically stronger. Squats build muscle strength, and that will help with the stair climbing that’s still challenging for her. Obesity is a problem for Angels because their stiff movements and balance struggles make exercise difficult. We keep Juliana active with walks, movement in the pool, and our dance parties. I rely on dancing as a fun way to get her moving.

With these added benefits, there’s even more reason to keep dance parties around for a very long time. 

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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