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Letting Go--One Parent's Approach To Self-Advocacy In Our Children With Narcolepsy

Letting Go--One Parent's Approach To Self-Advocacy In Our Children With Narcolepsy

I'm a big believer in advocating for our children who live with chronic illness but there comes a point when we need to let them speak for themselves.

Just recently I was challenged to think more about his through the Youth Ambassador Program that's organized by Narcolepsy Network. Essentially it's about our children being empowered to self-advcoacy, and the benefits are huge.

"Be an advocate for the people and causes important to you, using the most powerful tool you have--your personal story." --John Capecci and Timothy Cage

"Be an advocate for the people and causes important to you, using the most powerful tool you have--your personal story." --John Capecci and Timothy Cage

Having been asked to facilitate the program which will begin training students this Fall, I got to thinking about my role as Mathilda's mouthpiece and how I begin to help her become her own advocate. 

In writing Waking Mathilda I told our story, a story that is shared with many families whose children are too young and vulnerable to speak for themselves. How does a three year old explain what's going on when her brain breaks down? What five year old knows the meds they need to become functional? And how does a child like her overcome her fears and frustrations and find her voice as an emerging young adult?

There will soon come a time when I will need to let go and give Mathilda the opportunity to tell others what she needs, educate her peers and hopefully raise awareness for narcolepsy which is typically under-recognized, misunderstood, and under diagnosed. 

From parental advocacy to self advocacy--Our children have a right to be heard. 

From parental advocacy to self advocacy--Our children have a right to be heard. 

Mathilda's generation will, I trust, forge the way ahead but how do we facilitate this transition when our default is to protect, possibly to a point of coddling?

Speaking for myself this might be hard but if I've learnt anything as a parent it's that letting go when the time is right might just be one of the most significant things I can do for my tween in order for her to find her own voice, her own way.

And, if we as parents are in any doubt about our CWNs becoming their own advocates, here's a few thoughts I've had, all of which are supported by the YA program: 

  • Self-advocacy promotes empowerment, personal responsibility, and ownership of who the child is, and how she or he will live with narcolepsy. These are big steps towards living independently.
  • Self-advocacy increases confidence, public speaking skills, self-esteem and self-worth. 
  • Representing others through their personal story not only advances the cause by raising awareness but encourages empathy. They think not only for themselves but beyond themselves. 
  • Community engagement builds partnerships and leads to new friendships and connections. Nothing is sweeter than identifying with friends who "get it" and "get you."
  • Self-advocacy creates self-awareness. Our children are able to problem solve, find solutions to challenges that we as parents may have overlooked. In other words, they know themselves better than we do so maybe they are becoming the more effective spokesperson. 
Learning to become their own advocates our children with narcolepsy will own their own stories with pride and one presentation at a time, change the world. 

Learning to become their own advocates our children with narcolepsy will own their own stories with pride and one presentation at a time, change the world. 

 

The good news is we as parents don't have to facilitate our children becoming self-advocates alone. Phew!

 Narcolepsy Network provides a supportive mentor program which is currently inviting students to submit applications by the 8th September. If your CWN is aged 15-22 why not check out the program here: http://narcolepsynetwork.org/2017/08/now-accepting-applications-to-be-a-2017-2018-youth-ambassador/

Scholarships are available for US residents and applicants are encouraged from all over the world. 

 

 

Readers' Favorite Award

Readers' Favorite Award

Sleep Review Features Waking Mathilda: A Memoir of Childhood Narcolepsy

Sleep Review Features Waking Mathilda: A Memoir of Childhood Narcolepsy