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Maintaining daily habits is beneficial, yet the real struggle lies in their consistent upkeep

Maintaining routines can be beneficial, but adhering to them proves to be a difficulty, compliments columnist Sabrina Johnson, a parent of someone with Angelman Syndrome.

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2 min read
Maintaining routines can be beneficial, but consistently sticking to them poses a difficulty
Maintaining routines can be beneficial, but consistently sticking to them poses a difficulty

Maintaining daily habits is beneficial, yet the real struggle lies in their consistent upkeep

In the heart of a typical school year, a unique challenge arose for a caring individual, who we'll refer to as the speaker, and her 13-year-old daughter, Juliana, who lives with Angelman syndrome.

Juliana's routine is a well-oiled machine, with her father usually responsible for dropping her off at school. However, on one occasion, the speaker almost broke this routine, a decision she soon regretted. The memory of the last time still fresh in her mind, she carefully weighed her options and ultimately decided against taking Juliana to school.

Positive interactions are key when dealing with Angelman syndrome, a condition that affects the nervous system and can cause developmental delays and challenges. Research shows that positive facial expressions can hold the attention of individuals with Angelman syndrome longer, making it crucial to maintain a calm and reassuring demeanour.

The speaker learnt from an earlier episode that being creative and flexible is essential when navigating life with Angelman syndrome. That day, Juliana cried profusely when she realised they were headed to school, a clear indication of her sensitivity to changes in routine. The speaker, having learned from her mistake, knew they could save themselves and Juliana a lot of grief by being mindful of her routine.

In a past snowstorm, Juliana showed her discomfort with going outside, an experience that made the speaker vow never to force things on her that would disrupt her comfort level. The speaker understood that changes in routine or surroundings can trigger hyperactivity in individuals with Angelman syndrome, and so, on this snowy day, she came up with an alternative plan to accommodate Juliana's needs.

On the day in question, the speaker had an opportunity to take Juliana to school earlier in the year. Assuming Juliana understood that they were going to school, the speaker was taken aback when Juliana reacted with confusion and distress. It was then that the speaker realised that Juliana may have thought they were going somewhere fun, a reminder of the importance of clear communication and consistency in Juliana's life.

The speaker did not repeat the mistake of taking Juliana to school without considering the potential disruption to her routine. Instead, they picked her up, and there was no crying or confusion. A squeal of delight echoed through the house when Juliana saw that the speaker was there to take her home.

The speaker reflects on these experiences and believes they are getting wiser in dealing with Juliana's Angelman syndrome. They understand that every day brings new challenges, but with patience, flexibility, and a deep love for their daughter, they are navigating this journey together.

Despite the search results not providing information about the name of Juliana's father, it is clear that Juliana is loved and cherished by her family, who are committed to understanding and supporting her every step of the way.

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