Last week, my neighbor invited me over to meet his friend, Philip, and Philip’s dad. Philip is a 26 year old man who has familial dysautonomia (FD). FD is a genetic disease that affects the autonomic nervous system, which controls involuntary actions such as digestion, breathing, production of tears, and the regulation of blood pressure and body temperature. It also affects the sensory nervous system, which controls activities related to the senses, such as taste and the perception of pain, heat, and cold. Many individuals with FD have learning disabilities and many are wheelchair-bound. FD is one of the most common genetic conditions in the Ashkenazi Jewish population, with a carrier frequency of about 1 in 30. Today, Ashkenazi Jews around the world are routinely screened for mutations in the FD gene–among many other diseases–through genetics clinics and private physicians’ offices (click here for screening resources offered by our Program for Jewish Genetic Health). Without the ability to identify and counsel carriers, the disease’s incidence among Ashkenazi babies would be 1 in 3,600!
Philip and his father greeted me with smiles and were eager to talk with me about one of Philip’s fascinations and expertises, the Jewish calendar. Since I am not too familiar with the nuances of the calendar and lunar holidays, we ended up reminiscing about popular Nickelodeon game shows from the 1990s (which was a lot of fun!). Philip’s father stuck around for this conversation. I was surprised since he could have taken a much-needed break to schmooze with the adults in the house. I had a great time talking to Philip—but I also spent a lot of time watching his father.
I thought I would share a few things I learned from Philip’s father, as well as from other parents of kids with genetic diseases and other special needs. These may seem obvious, but I find these to be very helpful in my own day-to-day experiences:
1) If you try hard enough, you can become a more patient person. Even though it was difficult for Philip to tell long stories, his father would allow him to go at his own pace instead of interjecting.This is definitely the hardest lesson for me to incorporate into my life!
2) Try to focus on what is, not what is not. When I first saw Philip, I saw a man with difficulties and disabilities, but I noticed that his dad simply viewed him as a son. Maybe I need to change how I perceive things.
3) Try to turn your difficult situations into something positive for others. Philip’s dad runs a local fundraiser for FD awareness every year in the community and runs marathons to support finding cures this condition! And many of the support organizations out there were founded by parents of affected children who felt the need to help other parents who were going through the same experience.
4) Remember to laugh sometimes. I can not count how many times Philip and his dad joked around and laughed about silly things. I sensed that they both try not to focus on the obvious medical issues, but to look at the positive and fun things about life.
Everyone copes with difficulties in different ways, and what I saw from Philip’s dad in that 1 hour does not necessarily reflect how he always behaves. Also, there is no one “right way” when it comes to dealing with individuals with special needs. But from that one 1 hour, I was inspired.
Here are some good resources if you or someone you know would like a place to turn to:
Chai Lifeline, offering a number of services for Jewish children with life threatening illness
Jewish Genetic Disease Consortium, an organization of many smaller, more disease-specific, groups
Ramah Special Needs Programs, providing a range of camping experiences for children with special needs
Yachad, The National Jewish Council for Disabilities, dedicated to addressing the needs of all Jewish individuals with disabilities and ensuring their inclusion in every aspect of Jewish life
The Friendship Circle, a Jewish organization for children with special needs, with over 79 locations worldwide
“Far from the Tree”, a book by Andrew Solomon telling stories of parents who not only learn to deal with their exceptional children, but also find profound meaning in doing so
Blogger’s note: I wrote this blog about 2 months ago, but never ended up posting it. Philip passed away last week, one week after his 27th birthday. Philip was an inspiration to me and our community. May God comfort his family , together with all the mourners of Zion and Jerusalem.