Helping Our Son With Down Syndrome 'Wrestle With a Gorilla'
It is June 2015. The fog hovers over Carl Connelly Stadium in Aptos, California like a shroud, wrapped tightly around the 5 thousand spectators. It is graduation day and the stadium is ripe with enthusiasm and anticipation. The parents proud of their high school graduates and the road ahead. And perhaps, there is relief that they will soon have empty rooms in their homes.
For the graduates, the day is a long-time in the making. The structure that guided them to this point is dangling at the precipice of transition. A future with new freedoms, obligations and college soon at hand. This is an incredibly exciting time for most. A defining moment in the continuum of growing up.
And there, amid the 400+ graduates sat my son, Brandon. The lone student with Down syndrome in a sea of ebullient, college-bound students. My wife and I watched as this sea of bodies were called to the stage one-by-one to receive their diplomas. With the passing of each name, it became clear that the social fabric of my son’s life was about to end. His friends were being set free from the confines of parental supervision and block schedules, while he was left to a future less free and bright. Transition programs offered within the community college system were not the answer for him. He needed a place where his artistic talents and networking ability could flourish.
My wife and I soon realized it was incumbent on us to build a new structure where he could be an artist, meet a variety of people and learn the necessary skills he would need to become an independent, working citizen. Ultimately, you end up asking yourself, “is it all worth it?” The behind the scenes orchestrating of aides, support mechanisms, social networking, acting, art, college coursework and on and on it goes. And, when it is all said and done, how will we know we have achieved our goals when each door you open only reveals the next barrier? It is a circular process where the lines between success and failure are blurred by the constancy of the struggle. This is a daily grind that parents must embrace fully or success is a wave lost to the sand.
Former diplomat and Presidential Medal of Freedom winner, Robert Strauss said: “Success is a little like wrestling a gorilla, you don’t quit when you’re tired — you quit when the gorilla is tired.”
Parents who love and support individuals with disabilities understand how hard it is to outlast the gorilla and attain success. Simply, it is easier at times to just submit. Throw your hands up and surrender to the systems in place, systems designed to help and support, but all too often falling short of their original intent. My experience working with my wife to maximize our son’s opportunities is these systems become enablers to sustain a lifestyle where poverty level dependence is the outcome.
Now 21, our son, along with us, continue to wrestle the gorilla. We are not going to give up any time soon. He has not given up on his dreams to be an actor, artist, model and spokesperson/advocate. He is not deterred by the barriers. We continue to find opportunities outside the traditional path and gladly take the arrows shot our way.
Recently, our son was asked to speak at a buddy walk in Portland, Oregon and echoed his message of work hard, choose kindness, and be yourself every day to achieve your goals. It was clear to my wife and me during his speech that he had become adept at wrestling the gorilla. He feared nothing and believes he can accomplish anything he sets his mind to.
As his name was called on that foggy June morning, we were elated and fearful. Elated that he overcame the high school struggles and achieved much. Fearful that this would be the pinnacle of his life and our collective energy to fight “our gorilla” would wane. Three years removed from graduation I am happy to say our fears were abated and our passion to help Brandon and others is stronger than ever.
Follow Brandon’s journey at 321 Life.
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