The Gift of Self-Advocacy: Teaching Kids To Use Their Voice

Growing up with spinal muscular atrophy (SMA), I've had the privilege of witnessing the remarkable impact of my parents' guidance in teaching me to be my own advocate.

This journey has allowed me to understand the importance of empowering children and individuals with SMA to use their voices effectively, expressing their needs, concerns, and desires. I am a firm believer that self-advocacy for individuals with SMA is incredibly important and should be nurtured at a young age.

My parents taught me to advocate for myself

From my personal experience living with SMA, I can attest to the incredible influence of parental support and encouragement in my life. My parents recognized early on that teaching me to be my own advocate was important. This was a skill I was so grateful to learn.

This wasn’t only because I was an outgoing person, but it was something that my parents taught me both consciously and subconsciously. I watched as my parents would advocate for me in doctors offices and public school.

Letting me speak for myself

But I also watched as they would step back and allow me to have a voice to express what my needs were. This was a great gift as I entered into my teenage years and started dating And even more so now that I am an adult and doing life on my own as a parent and wife.

I know as a parent to a child with a disability and complex medical needs and it is easy to want to take over and be the primary communicator but the more that you can teach your children to express what they are wants and desires are Easier, it will be as they grow older. I believe this starts really young and starts by leaving as an example.

The role of the parent

As someone living with SMA, I understand the desire to take on the primary role of communication on behalf of our children or ourselves. Navigating the complex world of medical appointments, insurance, and educational institutions often requires us to lead these discussions. However, it's equally crucial to recognize that teaching individuals with SMA to express their wants and needs is a lifelong skill that can make their journey smoother as they grow older.

Nurtuting the ability to self-advocate

The journey toward self-advocacy begins at a young age and starts with leading by example. Here are some actionable steps to nurture this essential skill:

• Encourage open communication: Create an environment where the child with SMA feels safe to express themselves. Encourage them to share their thoughts and feelings, even if they differ from your own.
• Active listening: Pay close attention to what they say and validate their feelings. Show them that their voice matters and that you value their input.
• Teach self-expression:. Help them find their unique way of expressing themselves. Whether it's through words, gestures, or assistive communication devices, ensure they have the means to communicate effectively.
• Involve them in decision-making: As appropriate, involve them in decisions related to their care and daily life. This empowers them to take ownership of their choices.
• Educate Them About Their Condition: Provide age-appropriate education about SMA and its implications. Knowledge is a powerful tool in self-advocacy.

Teaching individuals with SMA to use their voices is a precious gift that will serve them well throughout their lives. By nurturing their ability to advocate for themselves, we empower them to navigate the challenges of living with SMA with confidence and resilience. As individuals living with SMA, we can also continue to lead the way in our self-advocacy journey, ensuring that our voices are heard loud and clear.