I get a kick out of Philip’s use of words. A boy of few words, he carefully chooses each one to extract the most meaning out of it. A week ago I wrote a post here about Philip giving titles to my Dad’s photographs. As a follow-up, I asked Philip how he came up with the titles. He spelled, “I ATTRIBUTE A TITLE THAT SUMS A LESSON.” Yesterday my Dad won a gold award (the highest honor) for his photograph which Philip named “CATCHING LIGHT OPULENCE.” I asked Philip why he chose the name. “I LIKE HOW THE LIGHT SHINES TO ACCENT THE BEES AND THE OPENNESS OF THE FLOWER IS EASY TO ENJOY.” Why opulence, I asked. He spelled, “VIOLET ROYALTY.”
"Catching Light Opulence"
One word Philip has become particularly fond of using is “daring.” The meaning of daring is “willing to take or seek out risks; bold and venturesome.” I’ve been thinking about this word today and how it is related to hope. Hope is the dream we have, but daring is the action that allows us to realize the dream. Over the past year, RPM has given Philip a voice, and along with that, freedom to dream. He wants to go to a regular school and says “I WANT TO LEARN EVERYTHING THERE IS TO LEARN.” He says he wants to be a mathematician when he grows up. He wants to learn typing and computer skills. He also wants to write his story and teach others who cannot speak to communicate through RPM. Photography has piqued his interest and he wants to try his hand on a camera and accompany my Dad on photo shoots.
The power to dream is an amazing thing. It gives us a purpose to live for. It gives us positive momentum to wake up every day with the expectation we can improve ourselves and the world. For me, this was not always so. When Philip was between the ages of 6 and 9, I had such a hopeless feeling about Philip and my life that many times I dreaded the morning knowing each day would be like the last without reason to think things would get any better. How much harder was it for Philip? Hope is where all dreams find their beginning.
Daring is each step we take in making our dreams come true. When a child is autistic and cannot communicate, he has to rely on others to dream big enough for him too or else his own dream cannot be realized. Daring to see Soma was the best thing we ever did to help Philip. With no indication that Philip could read, spell, communicate, or even understand much, we went to see if she could teach us how to reach Philip. And she did! Philip learned to learn age level academics and answer questions about himself. When we got home, Philip would not communicate as he did with Soma for months but we dared to persevere until he could. Little acts of daring such as pushing for a sentence rather than a single word, letting Philip speak on his letterboard to others, or enrolling him in activities with inclusion, snowballed into bigger things. We didn’t always achieve things on our timing and sometimes a dare was met with a fail, but within the whole process was progress. Looking back, each breakthrough has been a result of daring a fear or the status quo.
I want Philip to keep daring himself to accomplish his dreams. This is not easy for him. Often he feels discouraged about things, whether it is his inability to overcome his own sense of overwhelm during stressful situations or not receiving adequate accommodations to help him communicate out in public. I keep reminding him that many of his heroes, Frederick Douglass, Abraham Lincoln, and Martin Luther King Jr., did not have it easy. To achieve their goals, they had to defy odds against them and in doing so, made a huge impact on the world for good.
I look at the growing number of non-speaking Autistics succeeding and living out their dreams as well. What do they all have in common? They have all dared the common perceptions of autism. They have all dared to find ways to communicate that are out of the box. They all had people to dare to dream alongside them. Tito Mukhopadhyay and Ido Kedar are accomplished writers and speakers (how amazing is that!) who learned from Soma. Kedar currently attends mainstream high school. Naoki Higashida was homeschooled and learned communication via letterboard and typing. He is an artist and has written bestsellers in Japan and the US (The Reason I Jump). Carly Fleischmann types and now attends college. Larry Bissonette and Tracy Thresher travel the world as speakers (by typing) and advocates and have made a fabulous movie called Wretches and Jabberers. There are many others daring their schools and communities to accept them, working jobs to support themselves, and defying people’s expectations.
I leave you with Philip’s statement to me this morning after reviewing the post: “I AM DARING TO BE MYSELF IN THE WORLD.” How about you? Do you dare?
Philip with Soma