Brandon's Story
Jean and Kirk Schultz welcomed their second child, a baby boy named Brandon, into the world on August 15th, 2007. With an uncomplicated birth, they took their youngest child home and began to navigate the uneasy waters of having a newborn. At just four months old, things changed when Brandon fell ill. This was just the beginning of many medical issues that would affect Brandon and his family. A tumor was found underneath his armpit, requiring several surgeries and interventions, and he received several new diagnoses including epilepsy, GERD, asthma, lymph/vascular malformation and cervical adenitis. Despite all of the additional new factors regarding Brandon’s health, he was able to meet all of the expected growth milestones such as rolling, crawling, walking, smiling, waving, pointing etc., which was reassuring to his parents, but they knew something was still different with their newest child. Brandon began exhibiting puzzling and concerning behavior patterns consistent with what would become his next diagnosis. The first sign was sleep pattern disruption. Previously past the sleep training stage of development, Brandon was now only able to sleep for a maximum of two hours at a time before suddenly waking up screaming. At 15 months, he began engaging in self-injurious behaviors such as banging his head, and then at 16 months he stopped saying Mom. Just before his second birthday, on July 20, 2009, Brandon was officially diagnosed with Autism Spectrum Disorder.
Individuals on the autism spectrum, like Brandon, face daily struggles to have a meaningful place in our world. ASD impacts each individual differently, but many present with communication deficits and sensory processing differences that hinder their ability to participate in both necessary and enjoyable life activities. Even though persons with autism often have unique strengths of their own, their differences are consistently highlighted in negative ways, and categorized by what they can’t do, rather than what they can. In order to create a better, more inclusive tomorrow for individuals on the autism spectrum, Jean and Kirk Schultz created a non-profit in their son’s name, called Brandon’s Voice.
Brandon’s Voice is a nonprofit organization based in Bryn Mawr, Pennsylvania, located just outside of Philadelphia, that strives to better support those whose lives are affected by Autism Spectrum Disorder; including caregivers, educators, therapists, and most importantly, individuals with Autism, whose voices need to be heard. Unlike other large organizations dedicated to raising funds and awareness, Brandon’s Voice is proud to state that 100% of the funds raised go directly to the cause. Your support and donations through our website and fundraisers will help to raise critically needed funds to not only support those with autism throughout their lifespan, but also will help to fund research exploring the cause and development of better, more effective treatments for ASD. Help us to ignite the change, by creating a better more inclusive world for neurodivergent individuals such as Brandon. We empower you to be the voice for those who may not have one, and to help individuals with ASD find a meaningful place within our world.
Lessons Learned from Brandon
It is happening to him and not to us
As a parent, we want what is best for our children. We want them to live happy, fulfilling, meaningful lives with no barriers or extra challenges in their paths. So when we found out Brandon had autism, it was hard to not to feel like it was something happening to us, rather than something that was unique to Brandon. Individuals on the autism spectrum are neurodivergent, which means that their brains function differently from what is considered typical or normal. They look at the world differently, and process things in different ways, and Brandon taught us the beauty in that. With that came losing our previous expectations of how we thought Brandon’s life would be, or what was needed to determine his life as successful and enjoyable. He has taught us to love him for what he is and not what we think he should be. Families of special needs children often say the same thing- their child has brought more joy and growth into their lives than anyone could ever imagine.
He can’t control what is happening to his body
Sensory processing differences are often a key component of autism. Their perception of different sensory experiences can be much different than ours, with some things feeling much more intense, while others are barely detected. When sensory experiences become too overwhelming, the body automatically enters a state of distress. They enter what is called a “sensory meltdown” which is inherently different from a temper tantrum, but can often be mistaken as one. Brandon was not acting out or “being bad.” His body was reacting to the information (or lack of information) he was receiving from the environment.
What he can do is more important than what we can’t do
Patience is extraordinarily powerful in the world, and in the world of autism, it is critical. We learned that with time and patience, Brandon is able to do almost anything. People with autism may need new and different instruction styles, additional supports or increased repetition to learn new skills, and we must advocate for the additional time they need to shine. Autistic individuals may need a little extra help, but each and every new accomplishment and well worth the effort.
Slow down and see the world
Often time’s individuals with autism have intense interests, and one of those for Brandon is trains. Something about the comfort of the cabin, the power of the engine, the steam floating away, the sounds of the wheels on the rails, the landscape unfolding in front of his eyes, it all feels just right for Brandon. Sitting beside Brandon while he relaxes gives us an experience that is truly wonderful that we only have because of him. Brandon teaches us daily, to take a step back from our busy schedules and enjoy all the beautiful small things the world has to offer.
Come play with me
We learned fairly quickly that traditional learning protocols and standards did not work for Brandon. To others, it could come across that Brandon was unable learn, when in fact, Brandon is able to learn, we just needed to find out how. We cried a million tears and had many hours of frustration until we asked him- how can we teach you? His reply was the key, “ Come Play With Me.” Brandon loves to swim, so we took him to the pool, he loves the trains, so we visit a steam engine regularly, he loves to swing, so we help him go as high as he wants to, and that is when we knew that Brandon has extraordinary capabilities and endless possibilities, if we just take the time to listen.
There’s more than one way to live
Having an autism spectrum disorder means that your brain works differently, but different can be amazing! Some of the most brilliant and revolutionary people in history were on the spectrum; including Bach, Einstein, Van Gogh and even Bill Gates! We must look at the strengths that come out of their differences, and figure out how we can best include them in our world. Autism is happening to him and not to us, but we are a part of his story and it is our responsibility to help find a way to overcome that challenges that come with his Autism, and highlight the strengths his differences can provide. Who knows what the Brandons of the world can become, but we can’t wait to find out.
Why neurodiversity and inclusion is important
Do you remember the old saying, “variety is the spice of life”? The famous quote by William Cowper from his poem “The Task” written in 1785 is just as relevant today as it was in the 1700s. Quite simply it means that doing and seeing a lot of different things makes life more enjoyable and interesting. Exposing ourselves to different experiences, cultures, environment and people only helps to enrich our lives, teach us new skills and life lessons, and grow as successful and fully developed human beings. Think of every new experience and interaction as metaphorically adding another spice to your seasoning cabinet. As the amount of spices grows, the greater flavor combinations you are able to create, and in turn you are able to make richer, fuller, more complete meals than were possible before. You may even be able to find use of a previously forgotten spice, because it was too strong on it’s own, but now with a greater variety of spices, you are able to find the magic combination to make that spice shine. Every single spice has it’s own value, and it’s own strengths and weaknesses. Spices also are not interchangeable, each has its own complex flavor profiles that present in their own unique way.
Just like spices, each and every person on this earth, has their own unique profile of characteristics. While there may be some similarities between one person to the next, it is a fact that we are all inherently unique. We all have an unrepeatable blend of characteristics, full of both strengths and weaknesses, that complete the one and only profile that is you. In order to fully embrace diversity, we must understand that each and every person, with their complex differences, bring equal value into creating a rich, innovative, and well-rounded world. Often times, neurodivergent individuals are highlighted by their characteristics that are different from those who are neurotypical, and more often how those differences could hinder their ability to positively contribute. That is not to the fault of the neurodivergent individual, but rather the inability of others to see the differences and find strengths within them. It is our job to not only accept the differences, but to also find the ways in which we can incorporate them, because they too belong. Diversity is including them in our “spice cabinet”, but inclusion is making the mix of spices work to create a recipe.
In order to create a more innovative, balanced, and beautiful world, we encourage all of you to find opportunities and new ways of incorporating and including neurodivergent individuals into all aspects of everyday life. Instead of highlighting differences in negative ways, we must find the opportunity within them. With intentional planning and creativity, neurodivergent individuals can bring their individual strengths into opportunities and create more beautiful recipes than we ever thought possible. It is on us to ignite this change, and promote the inclusion of neurodivergent individuals into all aspects of our lives and show the world the richness they are able to add. As stated by the second part of the quote from William Cowper, “Variety is the spice of life, That gives it all its flavor. “
