Being a parent or caregiver of a child with Angelman syndrome can be very stressful. A Japanese concept called shoshin may help you see your life and role as a caregiver in a whole new light.
What is shoshin?
Shoshin is a concept from Zen Buddhism that means “beginner’s mind.” It involves looking at the world with wonder, awe, and curiosity. It is like seeing the world through a child’s eyes, with many new experiences to discover and learn about. Children start off free from judgment and preconceived notions about how things should be. As we get older and more experienced, we tend to lose this mindset and become more critical of new ideas and experiences.
Angelman caregiving and mental health
Being a caregiver of a child with Angelman syndrome can affect your own health and happiness. Research has shown that 71% of mothers and 42% of fathers of children with Angelman syndrome experience clinical levels of anxiety. Moreover, 21% of mothers and 33% of fathers experience clinical depression.
How could shoshin help?
There are no studies of shoshin and Angelman syndrome caregivers specifically. However, one study did investigate the use of nonjudgmental awareness in caregivers of children with profound intellectual disabilities.
This study found that when caregivers used mindfulness practices (shoshin is a type of mindfulness), their stress levels were lower. They also felt an increase in compassion for themselves and an improvement in their own well-being.
Its researchers speculated that a mindfulness practice helped the parents to be nonjudgmental about their child’s situation, and aided them in accepting their child’s disabilities.
In addition to greater acceptance, a beginner’s mind may also help you find more playfulness in your life.
Shoshin can help to increase your creativity and openness to new experiences. It could help you come up with ways in which you could still do things rather than focusing on past experiences and assuming they will turn out the same way again. For example, rather than deciding that a family vacation would be too hard to handle, you could think of ways in which it might be able to still happen.
A beginner’s mind can helps with focusing more on the present, and enjoying what you are doing now. It may help you to better connect with your child and with others by listening to what they have to say — whether verbal or not — and seeing what you can learn from them.
How can I get started?
At first, it may seem difficult to find time to practice shoshin with how busy you are as a caregiver of a child with Angelman’s syndrome. However, you can practice shoshin while doing everyday tasks.
At your next meal, rather than hurrying to eat and move on, take a moment to appreciate the food. Look closely at the colors and textures, and enjoy the aroma.
Focus on your child’s next smile. Do they get dimples in their cheeks? A crinkle in their nose, or a twinkle in their eye? Focusing on small details can help you connect more, and find joy and wonder in small things.
You can also look for ways to incorporate play into your everyday tasks. Next time you are doing laundry, use it as an opportunity to practice your basketball free throws, for instance. Or you can try being playful with your family by arranging lunch into funny faces.
Through a beginner’s mind, you may start to see things in a new light. This can help you find joy and fulfillment from the little things in life.
Last updated: March 8, 2021
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