Life With Phillip
A brother and a best friend
The tales that can be told about my older brother Phillip are countless. From only wearing one sock on his right foot to screaming, “Where is (insert absent family member’s name)” whenever guests come over. There is never a dull moment with Phillip around.
We have so many stories about Phillip, but on a recent Sunday afternoon, I asked my father if he could recall a time when Phillip did something especially unusual. We were sitting at the kitchen table and my father’s eyes lit up as he began to tell me of the time he took Phillip to Wendy’s restaurant for lunch.
“We arrived at the Wendy’s in Laguna Niguel and Phillip headed straight toward an elderly couple sitting in the back of the restaurant by the window,” my dad said, his voice growing a little melancholic. “Once Phillip reached their table, the old lady stood up apprehensive and fearful, an unfamiliar reaction to Phillip. She and Phillip both stood there, frozen for a moment, and then Phillip embraced her. He was hugging her, a complete stranger. Her awkwardness was quite apparent, but she made no move to shake him off. I stood there watching, not exactly sure what was going on. I soon realized that Phillip was talking to her. The lady hugged Phillip back and began to cry into his arms. Phillip then walked over to me and sat down.”
My father paused, his shoulders tensed, jaw clenched and his chest rose and fell. He took a breath. “The old couple left and sat in their car. I was upset because I didn’t know what Phillip had done,” my father went on, shaking his head as 13 years ago came rushing back as if it were yesterday.
“The old lady’s husband walked back in and sought me out. I thought he was going to be angry and all I could do was sincerely apologize. He stopped me mid-speech and told me I needed to know something. The old man began to explain that many years ago he and his wife gave up their firstborn child due to their baby being born with Down syndrome and the societal prejudices against families with Down syndrome. The man told me that Phillip said something to her when he hugged her.”
My father looked at me. “And do you want to know what Phillip said?” his voice cracking and his eyes starting to water as he told me what Phillip had said thirteen years ago. “He said, ‘It’s okay.’ My dad let the tears he’d been holding onto for all these years flow. I’d never seen him cry before. I couldn’t stop myself and cried along with him.
Just as quickly, he wiped his eyes and steadied his voice. “The old man told me, ‘Thank you.’ He said Phillip’s words would put him and his wife at ease during their last days. I don’t tell a lot of people this story. I truly believe that moment was between Phillip and the old woman.”
My father left me at the table to ponder how Phillip teaches my family and others he meets a whole new side to life. He was definitely put on this earth for a reason.
Phillip was born with Down syndrome. This disability is caused by an extra twenty-first chromosome mutation. Phillip is genetically and fundamentally different because he has an extra copy of chromosome 21. His genetic code is skewed because of this one extra chromosome and as a result he doesn’t follow the usual developmental patterns. My parents were unaware of this disability until he was born. Most people don’t know all the facts and figures about the mutation. A baby with Down syndrome is born once in every 691 live births, but 67-percent of fetuses diagnosed with Down’s through amniocentesis are terminated before they are born. Education is critical. Children with Down syndrome can live as meaningful a life as those without the disability. My parents did their research on the topic of special needs and quickly came to terms with the way their life was going to be from that point on.
Generally, American society is kind, accepting and accommodating to Phillip. He makes it easy by warming people’s hearts with his contagious smile and laugh. While we may separate ourselves through such things as religious beliefs, sexual orientations, and even race (for which there’s no genetic basis), most of us are very much alike in that we have perfectly matched chromosome pairs. But, that one extra chromosome copy causes an actual difference in the genetic makeup of Phillip. It makes him truly different than us.
It’s interesting how cruel we can be about surface-level differences and yet be so open-hearted to someone who is truly different, like Phillip. Phillip is able to challenge us to be accepting and loving towards others. Although most people are friendly towards Phillip, some people do not know how to interact or be themselves around someone who has special needs. It’s not uncommon for people with anxieties about interacting with people with special needs to appear uncomfortable, confused, scared or quiet. This is most often a result of not having experience with special-needs individuals.
Phillip opens people’s eyes. He is easy going, sweet, and loving to everyone he interacts with. He’s able to make them relax and engage. Many of my friends never thought they would have confidence interacting with special needs kids if it weren’t for knowing Phillip.
Patricia Wirtz is a teacher in the special education Structured Teaching Educating Prepared Students (STEPS) program at Dana Hills High School. She has first-hand experience with the effects her special-needs students have on other high-school students. Wirtz said that when she takes her students into a mainstream Physical Education class, everyone’s energy and enthusiasm picks up. During a recent visit to her class, one of her students with Down syndrome named Montana dances while everyone else is following instructions. This simple act raises everyone’s spirits. They are not scared of Montana’s differences, but embrace them. Wirtz says that when she’s having a bad day, she finds herself asking, “Where’s Montana?… it makes you feel good.”
At Dana Hills High School, certain kids at a more high functioning level of special needs can take class with the mainstream population. It takes patience, understanding and funds to provide special-needs kids with a full experience. In underfunded school systems, special education classrooms can be easy to overlook. Sports facilities and advanced-placement classes are often higher priorities than special education classes. “Even the football team, which loses just about every game, is more of a priority [than my kids]. These kids are the faces of Dana,” says Wirtz. “Everyone knows their names, yet no one knows how difficult it is to give them a meaningful education. Just because they’re kids with disabilities, doesn’t mean they don’t matter just as much as a Harvard-bound student.”
Phillip has changed the way that I look at life for the better. He never lets anything get in the way of his happiness and love of life. I never really know what to expect next from Phillip, but that’s what makes it exciting about having him as a brother and best friend. I usually go home every weekend during the school year and leave on Sunday night to get back for classes Monday morning. Every time I say goodbye to Phillip, I can always count on him giving me a big hug and telling me, “See you Friday!”
If you want to learn more about Down syndrome, please visit this website:
http://www.globaldownsyndrome.org/about-down-syndrome/facts-about-down-syndrome/
