Being the parent of two children in the autism spectrum has been and remains the most difficult role and most wonderful privilege of my life. Over the years, amid the trials and tribulations, amid the therapies and hard-fought achievements I have learned more from my children than they have from me. And while they have taught me about patience, tolerance, persistence, and dedication, what Isabela and Sebastian have taught me about perspective, authenticity and the relentless love of life has redefined me so that I barely recognize the person I was before I became their mother.
This is one of the reasons why I champion the inclusion of children and adults with disabilities, because by providing them with access and opportunity we empower them to show us; how silly we can be, how much we have taken for granted, how often we complicate simple things like forgiveness, trust and curiosity and discard the power of faith, hope and love. In neuro-normal world terms this can be likened to mindfulness but when you share your life (and heart) with people that society considers broken you don’t need to meditate to be aware of the present moment, you meditate so you can cope with narrowminded people whose emotional response to our children’s vulnerability is pity and fear, instead of support and admiration.
In the Nero normal world we all have challenges and difficult times but we take solace in that this too shall pass, while for the neurodivergent every day is a challenge, one that they face head on with a smile as they try to fit into a society that considers them a burden. As parents we try to provide them with the skills that they will need to survive in a world without our constant care while educating others about our children’s abilities and value. Unfortunately, however, the former usually trumps the latter as we drive from one end of Miami-Dade County to the other to provide our children with programing that builds their skill sets, self-esteem and provides a sense of community.
Thank God for Peanut Butter Falcon! While only in theaters for a limited time this one hour and forty five minute film about a young man name Zack with Dows syndrome who runs away from an assisted living facility to become a wrestler, captures just about every aspect of neurodivergent life that we wish we had time to share with our Nero normal friends and acquaintances. From why the use of the word “retard” makes our blood boil and the devasting impact that this horrible word has on our children to the fear that we face as caregivers when we allow of children to takes risks, to their “normal” desire to live their lives and fulfill their dreams even if their dreams seem impossible to us, to the system that fails to provide them with adequate services, Peanut Butter Falcon delivers!
I would give anything to find the time to have everyone I know meet my children and spend enough time with them so that people could see beyond their disabilities and recognize their amazing abilities like I do. I would give anything so that people could value their persistence, courage and authenticity and allow it to change their lives as it has changed mine. But until then, I ask you to watch Peanut Butter Falcon with your children and consider that there are hundreds of young adults like Zack, who dream, who love, who want and who believe that anything is possible. And that like Taylor and Eleanor, those of us who are blessed to share our lives with these amazing neurodivergent people are made better humans by them every day. And finally, as the credits roll consider that maybe it is us and not them that are broken and in need of mending.
Raquel Regalado is an attorney and former Miami-Dade County School Board Member.
