Lena and Phillip
I never know when to stop saying Happy New Year. I strive to hold onto the feeling of renewal, hope and fresh starts that the New Year provides. But holidays quickly recede into the rear view mirror, since the business of living demands our full and present attention, until the next round of designated pre-programmed holiday landmarks sneak up on us. Of course we all endeavor to live as if every day were a holiday or the first day of the rest of our lives, but that eventually becomes exhausting- usually around mid-January.
However, for those of us with special needs children or siblings, we consistently struggle with how to make the every day more meaningful and resonant for them. My brother, Phillip, is a severely autistic adult and lives in a group home administered by New Horizons. I feel a certain amount of self-imposed pressure to make each visit with my brother intently unique: for his wellbeing, his development, to bring some joy into his quiet little world.
This year I’m resolving to invent cost effective yet special monthly ‘holidays’ for Phillip. And I believe this is an idea we can all build upon and re-invent with our particular families in mind. Each family has a favorite activity- whether our monthly ‘holiday’ is organized around a favorite sport or place to go, making food, music or art together; it is within all of us to find creative ways to make family time together vivid, fun and commemorative.
In my brother’s home we celebrate everyone’s birthday, even if it’s staff or a family member. This creates a loving and fun-filled family-style environment where any seemingly ordinary day is special to someone and worthy of attention. And exposing our special needs family member to variety, to change and the world outside them is as important for them as it is for us. New Horizons places a special emphasis on frequent group outings, which many of the clients anticipate with glee.
As a child I would veer from being overly protective of my brother to being embarrassed by him. Once, when our parents took us to a restaurant Phillip casually helped himself to another diner’s French fries while we were walking to our table. He was ten and figured that since he loved French fries he was welcome to them, no matter whom they belonged to. Our parents had a great sense of humor about Phillip but I was seven and wanted to crawl under the table. We both have grown up in our own ways- I’m no longer concerned about what the world thinks of my brother and he no longer helps himself to other people’s meals!
I know it’s crucial to take Phillip out into the community. Society needs to be exposed to every kind of person. We all need to swim together among our differences and commonalities. Hopefully bringing Phillip and his friends from New Horizons out shopping will promote education and understanding as to how other families cope with life’s challenges. Our special needs siblings and children have guided us to open our hearts to people with disabilities- and out in the world, Phillip sweetly wins the hearts and minds of people who once eyed him with apprehension.
One of the myths of individuals with special needs is that there is a lack of emotional sensitivity and limited interest in the outside world as compared to higher functioning people. When someone does not communicate verbally or with socially acceptable body language, it is easy to dismiss this person as being unworthy of our attention. Besides, we are all deeply consumed with making our lives tick like Swiss clocks; it’s increasingly difficult to make time we just don’t have for those of us with complicated needs.
A thoughtful and insightful friend recently asked if I shared information about my life with Phillip. I was stunned to consider the notion of my brother wanting to know about my life. I’ve usually been so consumed with caring for him, that the one person who has known me longer than anyone living- has a severely limited knowledge of me … because it never occurred to me that the details of my life would matter to him.
On my next visit I was taking Phillip to get his haircut. Phillip truly loves going anywhere but he especially loves getting his haircut because Catalina, his stylist, dotes on him and has one of his needlepoints framed on the wall of her Dominican Salon. It’s very moving to see people take time for Phillip and for them to create meaningful moments for him. Catalina is one of these people.
In the car ride over I knew Phillip was excited because he was humming. I decided to talk to him the way I would talk to a friend. I casually chatted to Phillip about my latest art project. As I was talking, my brother stopped humming, looked me straight in the eye and held my gaze. I could tell he was paying attention to me. This was a deeply teachable moment... for me.
Believing that my life is as important to my brother as his life is to me is one of the light bulb moments that make regular, ordinary days anything but.
The bar has been raised. Here’s to a new year of discovering what tiny gestures can contribute meaning and love to our deeply special families. Having a monthly celebratory goal can keep the feeling of a new year with new hopes alive longer than the resolutions that dissolve somewhere around January 15th.
Lena Rivkin, M.F.A., is an artist and graphologist living in Los Angeles.
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