My school year ended on Friday. As we waved goodbye to the students, I felt confident that we were sending the vast majority of the children off to happy days of swimming, camp, and family vacations. Yet, that is not how I used to view the last day of school or first day of winter break. For 15 years, I worked with students who had moderate to profound disabilities. For those students, a break from school often meant a break from stimulation, from structure, from a variety of personal interactions, from a familiar, supportive environment. While these breaks meant fun, relaxation, and celebration for the staff, it often meant some seriously difficult times for the families of our students, who now had to deal with 24-hour care issues, significant behaviors, and loss of daily freedom that having the child in school provided. I was acutely aware, as we waved goodbye to those students, that my upcoming vacation would be very different from that of my students and their families.
These thoughts came back to me recently as I began reading a new book by Andrew Solomon, Far from the Tree. Through extensive interviews over many years, the author explores the experience of parents whose children are viewed as “different,” and the insights of some of these “different” children are shared as well. When we have children, we expect them to share a lot of the traits of their parents and grandparents, what Solomon calls “vertical identity,” However, some children are born with or acquire traits that are very foreign or, at least, uncommon, to a family’s genetic heritage; Solomon refers to this as “horizontal identity,” a branching off from the family’s “norm,” so to speak. Some of the differences that Solomon explores include: deafness, dwarfism, Down Syndrome, autism, schizophrenia, prodigy, gender issues, and criminal behavior.
The personal accounts of parents and children in this 960-page book are range from enlightening to downright chilling. As a survivor of childhood cancer, I live everyday with the “differences” that resulted from the surgery that saved my life. At various points in my life, these differences were quite significant to me, and to my parents. At this point in my life, the differences remain, but their impact on my daily life and emotional state is very small, as age and wisdom provided perspective, and I am fortunate to be able to weigh relatively minor inconvenience or discomfort against the joy of living a rich, full life. I also have the relief of knowing that my own adult son has strong “vertical identity” to our family, and that his “horizontal identity,” that which makes him different from us, is made up of blessings of sharpened intellect and talent, differences that are prized, not spurned. Now I have a brand-new grandson, born 6 weeks premature and now just 6 weeks old. The little guy faced some of the serious issues that are common to preemies, but it seems that prayers have been answered and all is well. Still, being a new grandmother and an SLP, I can’t help but have some concerns.
I brought these personal experiences to the reading of Solomon’s book, and projected “what if” as I read. What if I had had a child like the ones described? What if my son and daughter-in-law are faced with these challenges? I also recalled some of the parents and students I have known over the years. I knew some of what they must have gone through (and many still do), but could I really appreciate what their day-to-day life is like? Well, pondering hypotheticals is a good exercise, but it can be paralyzing if it continues too long. My way has always been to plan and take action. And the take-away message for me in this book is a renewed commitment to the belief that, as educators, we have the solemn responsibility to do our very best for these students and families every day. What do the students need to communicate, to participate, to achieve more independence and control, to be and feel accepted for who they are? What is their behavior telling us, that words are not expressing? What can I try today that might make life a little better for the students and their families tomorrow and all the tomorrows to follow? What would I want someone to do if this was MY child or grandchild? Every single day in the life of a child is precious and we, as educators, can’t afford to waste even one. Just as little achievements can add up to make a significant positive change in a child’s life, so can little missed opportunities add up to a significant loss of potential growth. It’s not always easy to be “on our game” all the time, especially when working with children who present great challenges, but it is our responsibility to do so, and to ensure that the rest of the team does so, as well. I know there are roadblocks that our often out of our control (funding and staffing, to name just two). But compassion, commitment, and developing and applying our expertise ARE in our control, and it shouldn’t take “difficult parents” and advocates to get educators to do what is best – every day – for the students in our care. In fact, after reading this book, it strikes me that attitudes and outcomes would improve if we remembered that “difficult” parents are often desperate, frustrated, angry, and alone in their attempts to live with and do what it best for their child. Can we “fix” the “horizontal identities” of our students who have disabilities? Probably not. But is there anything we can do, through education of the child, support to the families, and/or fostering acceptance in the community, to limit the impact of those differences? That is the question I will ask myself each day.
Although this book was written for and about parents who seek, and often find, ways to cope, love, and thrive with children and circumstances outside the norm, I recommend Far from the Tree to SLPs and other educators as a reminder of what we already know but what, in the crush of demands on our personal and professional lives, we might sometimes forget.
FAR FROM THE TREE by Andrew Solomon. Published in 2012 by Scribner. Available from Amazon.