On Well-Being: Empowering Independence

A photo of a stack of rocks balanced on the beach with the ocean visible in the background. White and gold text on a navy background reads: On Well-Being: Empowering Independence. July 2023. The Usher Syndrome Coalition logo is below the text.

By Lanya McKittrick, Lane of Inquiry, Mom to 4 boys – Conner (24) and Dalton (15) have USH1B.

Parents, you may have wondered what the future might be like for your children. I know I did, especially early on, right after the diagnosis.

Questions you may have asked yourself might include: What kind of career will my child have? Will they find love? Will they have children, and what impact will the vision loss have on parenting? Will they be able to live independently?

Sometimes it can feel paralyzing to think about all this uncertainty. There is so much you can’t control. But one thing you can do is to help your child be independent and to live a self-determined life.

Self-determination[1] plays a pivotal role in the lives of individuals with Usher syndrome. Self-determination refers to one's ability to make choices, set goals, and take control of their own lives. It enables them to take charge of their own destiny, make decisions aligned with their values, and actively participate in society. By fostering self-determination, you build resilience and help your child develop a sense of purpose. It promotes autonomy, enhances problem-solving skills, and boosts self-confidence.

Here are some strategies for parents in fostering self-determination:

  • Education and Awareness: Teach your child about Usher syndrome and the available support systems so they can gain confidence in their abilities and make informed choices. Familiarize yourself with the Expanded Core Curriculum.
  • Self-Advocacy Skills: Encourage your child to express their needs, assert their rights, and actively participate in decision-making processes related to their education, employment, and personal life.
  • Goal Setting and Planning: Help your child to define their aspirations, whether it be pursuing education, career development, or engaging in recreational activities.
  • Assistive Technology (AT) and Accessibility: Advancements such as screen readers, speech recognition software, and assistive devices enhance communication, access information, and facilitate independence. Make sure your child has the appropriate accommodations and AT.
  • Early Choice Making: Find ways for young children to make simple choices such as what to wear each day – this helps make choice-making easier in later years.

As a parent of four boys, I know first-hand how difficult it can be to foster self-determination. Sometimes it’s easier to make decisions yourself because you are simply trying to get through each day. But promoting self-determination at a young age can help both you and your child in the long run. By implementing strategies such as these, you can empower your children to assert their independence, make informed choices, and pursue their dreams.

[1] Self-determination is one of the 9 areas of the Expanded Core Curriculum, the “concepts and skills that often require specialized instruction with students who are blind or visually impaired in order to compensate for decreased opportunities to learn incidentally by observing others.”