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Welcome to April: Awareness, Acceptance, Celebration & the Stories We Choose to Tell

Welcome to April: Awareness, Acceptance, Celebration & the Stories We Choose to Tell

Each day I look out my office window the grass is a little greener, there are buds on the trees and warm weather has begun to tease its way through early spring. Welcome to April, the month where aside from Earth Day, Child Abuse Prevention Month, International Children’s Book Day, and Tax Day, we have Autism Awareness Month. Autism awareness brings with it some heated dialogue. Most people are already aware of autism. Some have opted to replace the word awareness with acceptance, and others have pushed further for celebration which is where I find myself. Yes, I wholeheartedly believe that autism is something to be celebrated along with all of our other differences. Perhaps you’ve heard this from me before, but many years ago I had a neuropsychologist tell me that we need people in this world who are different in order for there to be progress. This man affirmed something I felt in my heart and I will always carry those words with me. 

April and autism bring me to ponder parenting and the stories we as parents choose to tell and how they may impact and contribute to negative stigmas and mindsets.  The job of parenting is the toughest I’ve ever had, and I’ve had some interesting and tough jobs. Some might say that having a child with a disability is hard, or harder than having a child with typical, or dare I say “normal” needs. But let’s be really careful with this narrative and separate the systems from the child. 

Having a child with a disability requires parents to navigate a world that simply wasn’t created with their child in mind. Aside from a lack of supports and accessibility, nearly everything we’ve been told about disability has a negative connotation. Doctors give bleak pictures of outcomes, lifespans, and milestones that may never be met. Then we become indoctrinated into the world of specialists, therapy, and eventually the school system - all of whom overwhelmingly operate from the lens of the medical model identifying and trying to fix what is “wrong.”

The story of the parent struggle is not new to any of our readers and followers. We hear it at PEAK every day from parents who call us as they strive to maneuver complicated educational and medical systems.  Yes, it is okay to feel overwhelmed, to oftentimes feel helpless, to be angry, to wish things were different. That’s what we at PEAK are here for - to inform you of your rights, to teach you how to advocate, to listen, support, and connect you to those who can help you and show you that there is light at the end of the tunnel. Our systems do need to change and your tireless advocacy does make a difference for you and for those that follow behind you. Your story is writing the future.

In our world of blogging, reality TV, podcasts, and instant messaging where anyone can publish just about anything, we somehow have different standards for speaking about children with disabilities than we do for other children. What is the story you tell the world about your child? Do you speak of the struggle, the stress, the strain on your family, or how about the financial burden? Please use caution when you tell a story involving your child! Outside of the world of disability, there is no other realm where it would be acceptable to publicly highlight intimate and personal details of a child’s life. Consider the following questions before you post: How does telling your parenting story impact your child’s privacy? How will your story impact your child’s perception of themself? How will others learn to view disability from you? And this one is really important, do you have your child’s permission to share this information about them? Try to be cognizant of the saying, Nothing about me without me. 

The world hasn’t been built for those who are different - and in the U.S. that is one-fourth of our population (Baffling! It seems diversity is actually more of a normal occurrence!). We can change that and together we can rewrite the future, but we cannot succumb to the struggle. We must focus on our children’s unique gifts and talents and mold a world that provides access to the tools and supports that allow them to shine. The story of strengths, interests, and gifts is one you should tell freely so that more will come to value differences over “normalcy.” That is where we can all leverage our ability to bring meaningful change. Together, let’s flip the narrative. Take some time in April to celebrate your unique child and share how they are amazing!

PEAK is by your side for the whole parenting journey. Support our work with a one-time or monthly donation. It’s a great way to invest in our community and ensure hope, access, and inclusion for ALL!