Despite Tough Days for Our Angel, We Don’t Abandon Our Plans

Sabrina L. Johnson avatar

by Sabrina L. Johnson |

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Although children with Angelman syndrome may smile a lot, anxiety and other health issues can change their disposition. If my 12-year-old Angel, Juliana, isn’t having the best day, we don’t always have the option of abandoning our plans. When this occurs, my husband and I make the best of things with a plan to divide and conquer.

Best of both worlds

Most people are familiar with the expression divide and conquer, which is based on military strategy. It means that you split your resources to help accomplish a goal. This strategy has saved the day for our family more times than I can count. When we divide and conquer, my husband handles one of our daughters while I take care of the other.

This was the case last Easter. When Juliana woke up with some stomach trouble, I knew we wouldn’t make it to church on time. My 10-year-old daughter, Jessa, really wanted to attend the Easter egg hunt, so I sent her with my husband to church. After I got Juliana settled, we caught up with them and had an awesome morning.

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Choosing to divide and conquer gives me flexibility. Many unexpected things pop up when living with Angelman syndrome. Angels may have outbursts or exhibit other challenging behavior. Despite these obstacles, we do our best to get out as a family or take staycations to relax. Switching gears quickly helps us to keep our plans when bowing out is not an option.

Another benefit to dividing and conquering is that it gives me choices. When Juliana was smaller, I read a lot of special needs blogs. A recurring theme was the limitations placed upon special needs families. Families may miss out on things due to illness or behavioral issues.

Are there limitations? Absolutely. At times, we experience isolation because our lifestyle is different from that of friends and family members. We take steps to limit this isolation, and dividing our time is a happy medium to tackle these concerns.

The big split

When we don’t want to miss an event and it’s not possible to have a do-over, my husband and I will split our plans. Last week was a good example. Juliana wasn’t having the best day, and we were scheduled to go swimming. I didn’t want to disappoint Jessa, because I’d already told her that we’d go. I’m careful about breaking plans when Juliana has a bad day. It’s unfair to Jessa, and I don’t want to send a message that her needs and wants are not important.

My husband took Jessa to the swimming pool, while I put Juliana in her pop-up splash pool to enjoy some water time at home. There’s no scientific proof about why some Angels love the water so much, but in Juliana’s case, water activities always help to calm her down. It helped that day as well.

I knew there would be meltdowns at the pool. Juliana would fuss on the steps into the water. There would be more fussing when she had to get out for adult swim time. I didn’t want to face those triggers. Keeping her home and sending Jessa to the pool was a good compromise. Jessa didn’t miss her opportunity to swim, and neither did Juliana.

For me, dividing and conquering is a way to make the best of things. I can’t control Juliana’s behavior. Working around it is a wiser and smarter way to make sure that the rough days don’t break us.

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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