by Teresa Kellerman
Phoenix airport – 9/6/96, 5:15 p.m.
As I sit on the runway, awaiting delayed departure on this the last leg of my journey home from the conference on the secondary disabilities of Fetal Alcohol Syndrome, I finish the final pages of a best-seller that I brought for my quiet time on the trip. The book was a welcome respite at the end of each day of the conference, when I returned to my room from another session, my head filled with thoughts of primary and secondary disabilities, diagnoses, treatment plans, behavior scales, and the many stories told of beloved children who suffer from prenatal exposure to alcohol. After so many hours of inundation with data and statistics, bringing new hope and new fears, I welcome the respite of fiction that takes me far away from the dilemmas of FAS. Soon I will be home again, ready to face the challenges of FAS head-on when greeted by my son, John.
I think about him and life with him these past 19 years. He was only two and a half pounds when he was born, and just four pounds when I brought him home from the hospital. I think about the sleepless nights that long first year. I remember the cuteness attributed to his silly antics, and how the cuteness wore off as he got older and the same silly behavior became labeled as “inappropriate social interactions.” I think about how hard I have worked to make life a little easier for John as he struggles to control his impulses, as he searches for the right social response, as he apologizes, again, for some mistake he has made, some rule he has forgotten. I think how fortunate he is to have escaped from the effects of the secondary disabilities, such as expulsion from school, alcohol or drug abuse, or trouble with the law.
Oh, but my mind is tired of all this. And I return to the novel, and soon come to the end of the book. Then I remember the book in my bag, the one I bought as a gift for a friend back home. It’s not a novel, but a best-seller nonetheless, one I had not yet read. So I take it out, open it to the first chapter, and escape once again into a book.
In the first few pages, I read an account of a father’s concern for a son who struggles with difficulties in school, unable to follow directions, socially immature, who displays embarrassing behavior, who is small, skinny and uncoordinated. No, this boy does not have FAS, but the author has caught my attention with a discription that sounds so familiar, and I continue reading. The author states that no matter what the parents did, or how hard they tried, nothing changed with their boy. They had inadvertently given their son the message that he could not succeed. They realized that if they wanted to change their child’s situation, they would need to change themselves first.
The author stated that in order to change ourselves effectively, we first have to change our perceptions. Now I’ve heard this before many times, and I heard it again at the conference. I didn’t pay much attention, because I believed I already have a healthy attitude in that respect. As I read on,and turn the page, I am struck by these words in bold print as they jump out at me: “Primary and Secondary Greatness.” Of course ! In my concern about my son’s disabilities, I had forgotten about his greatness.
Then I remember the words of conference speaker Carolyn Hartness, a wonderful Washington woman whose message serves to remind us to be aware of not only the physical and emotional aspects of our children and their disabilities, but also the spirit of each as well, which is primarily whole and healthy. She reminds us that our children are sent to us as teachers, filled with wisdom beyond their years, beyond their IQ’s. She reminds us of the many gifts of the spirit that they share with us: humor, generosity, kindness, musical ability. These I see are the gifts of “Primary Greatness.” Someone else at the conference had shared that children with FAS are very sensitive emotionally. What some may see as a detriment, I see as a gift, this ability to sense and feel at a deep, intuitive level, a gift possessed by each child with FAS.
My thoughts fly around in a flurry of emotions, as I rummage through my purse for a pen to write all this down. and my hand touches a picture of John I carry with me. Oh that smile, always ready to brighten the spirit of anyone in the same room. Those arms, so willing to give a hug, not always inappropriately, often just when I need one. The hands that grasp drum sticks to beat out a rhythm on his drums, with real talent, hands always ready to share with others, to help someone in need. Those dark sparkling eyes with such readiness to love and willingness to understand my feelings. I’ve only been gone for three days, and I miss him so.
Carolyn Hartness warns us that great damage can be done when a child is beaten down by peers and teachers, even those who mean well. We need be careful how we touch the child’s spirit, she states, for this has a great impact on the child. I may not be able to undo the damage to my child of the primary disabilities of FAS, but I can nurture the primary greatness of my child’s spirit, so he can bloom and thrive in the secondary greatness of self-confidence, pride, respect, talent, self-expression and self-actualization. Carolyn reminds us that our children are not “FAS kids” – they are “children and adults with Fetal Alcohol Syndrome.” I agree when she said that words carry great power.
And so, here I sit on the runway, still waiting to take off, anxious now to get home to my Great Son and give him a warm hug and say “I love you and I appreciate you and all you are, and I am so grateful that you are in my life.” And I’m thankful for this gift of extra time, to write down these powerful words of others, so that I can read them again, to remind myself, when I become discouraged dealing daily with the primary and secondary disabilities of FAS, that there is greatness there also. I share these words with you, to remind you, next time you see a child that has been labeled as “disabled,” to look for and see, and cherish and nurture, the greatness of that child’s spirit.
copyright Teresa Kellerman
