I’m Winning the War on Angelman-related Paperwork

Sabrina L. Johnson avatar

by Sabrina L. Johnson |

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Since our 12-year-old Angel, Juliana, was diagnosed with Angelman syndrome (AS), the paper in our house seems to have tripled. There is so much documentation involved in raising a child with special needs. These documents range from evaluations to individualized education programs (IEPs) to progress reports.

To keep it all in check, I formed a system some years ago to get it all straight. I always need to provide an evaluation or information about Juliana’s diagnosis or care, so having these documents ready and organized has made things so much easier when we are applying for services.

Last year, we received an iPad from the Angelman Syndrome Foundation. The iPad serves as Juliana’s augmentative and alternative communication (AAC) device to help her communicate. Each year, the foundation provides support and equipment to families living with Angelman syndrome. The process of getting that support (and iPad) was a whole lot easier to complete with my paperwork easy to find and ready to go.

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I am, by nature, an organized person, so it didn’t take me long to figure out a system. Last summer, I purged most of the documentation from Juliana’s early intervention program. And now that we are getting ready for middle school, I will soon start purging the files from when she first started school.

I feel like there is so much in my life that I cannot foresee or control with AS. But I can rule over paper and files easily. It gives me great relief when I can put my hands on the papers that I need.

I read an article some time ago that said some special-needs parents had gone completely digital and have all of their child’s medical documents scanned and filed electronically. I contemplated doing that, but I just can’t see it working for me. Besides, I can’t imagine how long it would take to scan all of the information into digital format.

Instead, I have a dedicated file drawer with all of Juliana’s paperwork. Because I’m always coming across information that I may need down the line, I have a file for resources, too. If I need to get my hands on paperwork, I know exactly where to head.

Starting a system for Juliana’s paperwork has been so beneficial. While managing the care of an Angel, there’s more than enough to keep me occupied. Thank goodness I don’t have to battle with a mountain of paperwork, 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.


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