Advocacy - a Lifelong Journey

Parents are a child's first advocates. That role becomes yours the minute your child is diagnosed. In addition to honing your own skills, your goal is to also teach your child to self-advocate. But where to start??

Fortunately, there are many parents who have already walked, or are currently walking, this walk and can serve as role models. Here are a few resources to help you get started. If you know of others, please send them our way. 

Advocacy Resources from Parents

  • This article, written by advocate and USH Ambassador, Pam Aasen, appeared in the December 2019 issue of Exceptional Parent.

  • All students are impacted by noise levels in their learning environment. But as students who are deaf or hard of hearing settle into their classrooms each fall, an acoustic assessment of these spaces is one of the most important steps in helping them thrive. Here’s a look at why classroom acoustics are so vital and how to ensure your child’s classroom is acoustically appropriate.

  • In this article, Lanya McKittrick presents a literature review and describes how she learned to advocate by being open to looking at a situation in a different light, to see if there is another way.

  • Nilam Agrawal, a dedicated mother advocating for children with Usher syndrome, recounts her family's journey through the complexities of DeafBlindness and dyslexia, underscoring the critical call for heightened awareness, challenging low expectations, and reshaping educational approaches.

  • This article appeared in the January 2022 edition of Exceptional Parent Magazine. In it, advocate and USH Ambassador (Canada) Pam Aasen describes strategies shared with her by professionals who worked with her sons, Ethan and Gavin, both of whom have Usher syndrome type 1.

  • Part 1 - the presenters give an overview of Usher syndrome, knowing what that means for your child, and first steps in creating an educational program. In Part 2 - a deeper discussion about individualized education plans (IEPs), accommodations, and modifications.

Advocacy Resources from Students with Usher Syndrome

  • Downloadable forms that show examples of documents that Ava uses to advocate for herself in school.

  • This presentation will address the who, what, where, when, why, and how of meeting the needs of deafblind students.

  • Krishangi Shroff, a determined young disability advocate with Usher syndrome, shares a poignant account of her struggle to exercise her right to read chapter books in elementary school. Faced with discrimination due to her disability, her narrative highlights the importance of challenging restrictive reading practices.