by Teresa Kellerman

My 18-year-old son John plays the drums. He has his own set of drums in his room and he plays every day – for hours. Now, if you are imagining me with my hands over my ears and my face wrinkled up in a migraine frown, think again. John is pretty good on the drums, and I actually enjoy listening to him as he plays along to the radio or a favorite tape. Part of my pleasure can be attributed to his taste in music, which pretty much matches mine. He likes the Eagles and Yanni, and even plays a tape of Scotish pipers occasionally when he needs to soothe himself with something relaxing.

John enjoys playing the drums – with a passion. In fact, it is one of the few pleasures he enjoys in life. John doesn’t have a car, in fact he doesn’t even drive. He doesn’t have an easy time in school. He doesn’t have any close friends, except for his doggy. You see, John has Fetal Alcohol Syndrome (FAS), a disorder caused by prenatal exposure to alcohol that has sentenced John to a life-long hangover. His birth mother’s drinking during pregnancy caused John’s mild retardation, small stature, unusual facial features, and damage to his central nervous system. Because of FAS, John is not as bright, not as tall, not as good-looking as other teens his age. He has a hard time learning the rules of life, and when he learns them, he has a hard time remembering them. His behavior and mannerisms seem inappropriate to most people, and while he desires to be close to people and has a friendly and out-going personality, others are put off and maybe even repulsed, and they shy away from him. John needs reminders about how to behave normally around people. I give him verbal cues for everything from getting ready for school in the morning, to taking care of his dog, to how to behave in public, to how to interact with company,and so on and so on, day after day. His brain just doesn’t function like yours and mine. He seems smarter than he is, he can “talk the talk” but he can’t “walk the walk.” He has a hard time carrying through from knowing what to do to actually doing it. So John needs to be reminded, consistently and continuously, in order to get through each day. One rule that John has finally learned is to ASK first before playing his drums. So every day, when John comes home from school, he ASKS me, “Mom, can I play my drums?” And most of the time, I say, “Sure,I’d LOVE to hear you play!” And I do love to hear him play. Because I know his drums give him one of the only pleasures he has in life.

My 15-year-old son, who is “normal,” plays the guitar, and although his taste in music runs more toward the hard rock and alternative rock that many kids his age like, I still think he’s pretty good. Recently his friend, who plays the bass guitar, came over to practice their music, and the two younger-but-bigger boys asked John if he would like to play along with them. John was thrilled. They set up their instruments, and tried a few songs that all three knew. It didn’t go as well as they had expected. John is such a good drummer, so they didn’t understand why he had such a hard time accompanying them. He would lose the beat in the middle of the song, and by the time he got back on the beat, the song had fallen apart and they would have to start all over. I realized that John could keep the beat only while playing along with a tape or the radio. He couldn’t keep a beat on his own.

I guess that’s how life is for John. He will always need someone else there to “play along” with him and keep the beat for him. On his own, he will surely fall out of step from the rest of the world. It is so easy for him to become lost in the music of life. I’m happy to be here for John, to help him catch the beat again when he loses it, to accompany him through a life that can bring him joy and success that he might not realize by playing solo.

But what about the other 5,000 children born each year with FAS? What about the 50,000 others born each year with alcohol related birth defects? They are the ones who may appear to be normal physically and intellectually, but who nevertheless have suffered from prenatal exposure to alcohol with similar dysfunction of the central nervous system. These are the kids who are hyperactive, have attention deficit disorder, don’t learn from the consequences of their actions, who are too impulsive to think before they act, who are just as frustrated with their inability to control their behavior as everyone else around them. Who is going to help them find the beat? Who is going to provide them with the accompaniment they need to get through life?

It feels good to help guide John through the challenges he faces in life. But somehow, that’s not enough. After all, FAS is preventable – 100% preventable. And it’s the leading cause of mental retardation in our country. Something is wrong here. Research has shown that there is no safe level of alcohol consumption during pregnancy. The only sure way to prevent damage is to abstain from alcohol during pregnancy. In the spirit of solidarity, I have chosen not to drink, to support others who have chosen not to drink, to make it easier for others,maybe a pregnant woman, to choose not to drink. In the spirit of education, I have chosen to speak out about FAS and alcohol related birth defects, in the hope that an increase in awareness today might promote an increase in the wellness of our community tomorrow. After all, I believe that all children deserve to have a chance at a happy and healthy life.

copyright Teresa Kellerman

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