How to measure productivity as an Angelman syndrome parent

When caregiving for a child with Angelman, productivity looks a little different

Sabrina L. Johnson avatar

by Sabrina L. Johnson |

Share this article:

Share article via email
banner image for

I’m a sucker for research and studies, especially those involving Angelman syndrome. Such is the case with a recent study highlighting that parents of children with Angelman syndrome are less productive economically.

Angelman Syndrome News does a great job summarizing the findings from the study “Estimating the impact of Angelman syndrome on parental productivity in Australia using productivity-adjusted life years,” published in April in the Disability and Health Journal. The economic impact of Angelman was analyzed so that more support and consideration might be possible for Angelman families.

But with my glass-half-full lens, I started thinking about productivity in ways that aren’t simply about money. When you’re a special needs parent, being productive isn’t an option, it’s a necessity. As a caregiver to my 13-year-old Angel, Juliana, I must see to her daily needs, such as dressing, eating, and toileting, and balance the other areas of my life, too. If that isn’t being productive, I don’t know what is.

People who know me ask how I get it all done: work, hobbies, respite, parenting, and even writing. Being organized helps, and so does pacing myself. I don’t work as fast as the Energizer Bunny, and in most situations, my goal is to complete the job at hand. My productivity comes naturally as various tasks are handled each day.

Recommended Reading
A large bell carrying the word

Roche stopping testing, development of rugonersen to treat Angelman

Putting it all together

Just last week, Juliana had two doctor appointments. While we were there, I also made sure to take care of the paperwork that she’ll need to start seventh grade this fall. One of the visits checked two items off my to-do list. However, there are a few more details to take care of before school, including a visit to the neurologist and an updated seizure action plan.

As many caregivers do, I wake up each day with responsibilities that matter for the well-being of my Angel. I have to get certain tasks done so that she can be OK. And then there is work and other tasks that are simply a part of daily living.

I enjoy learning new information through studies, but I also wanted to reveal the other side of productivity as an Angelman parent. A lot of energy goes into taking care of another person. It doesn’t leave much time for earning big dollars or doing much else. My hands are full with managing my Angel’s health and daily living. However, there is productivity because of my caregiving, and that has value, too.

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.


Leave a comment

Fill in the required fields to post. Your email address will not be published.