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Bob Naseef lives in the Philadelphia area with his wife, Cindy. In addition to Tariq, their blended family includes three daughters: Antoinette, 14, Kara, 4, and Zoe, 2. Tariq, now 16, resides at the Devereux Kanner Center in nearby West Chester, Pennsylvania. Bob is a psychologist specializing in serving the families of children with disabilities. He enjoys gardening and photography and serves on the board of directors at the Center for Autistic Children in Philadelphia, where Tariq was once a student. he is working on his first book.
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Healing Broken Dreams:
When Your Child Isn’t "Normal"
Robert Naseef
I’ll never forget the magical night that my son was born. After a long labor, when he came out, he seemed to look all around the delivery room, even before his body had completely emerged. Without thinking about it, I jumped up and got right there beside the doctor- my knees wobbling, my heart pounding with excitement. The doctor, an older man who had delivered many babies, commented on how alert Tariq looked.
Right away I could tell that his head was the same shape as mine. The skin on my face tightened as I beamed at my newborn. I counted his fingers and toes and breathed easier knowing that everything was OK. The nurse cleaned him up while I watched eagerly, and wrapped him in a flannel blanket. He looked so cute--a perfect newborn. I had dreamed of having a boy, and I love retelling this story. I love reliving those moments filled with ecstasy for they are among my warmest memories.
When the nurse put him in my arms, I felt the electricity of that instant. He felt so soft and delicate to my finger tips, and I cradled him next to my heart. Our eyes met and locked on to each other for the first time. His eyes looked so big and round. It was one of the most exciting moments of my life. From then on I have looked at the world differently. Every time I saw a woman after that, I have held a special respect for her ability to give birth - for every woman’s special partnership in the miracle of life. I thought of my mother who gave birth to eight healthy children. That was a new beginning in my consciousness. Through him the wonder of life began to be revealed to me in a way that I could have never imagined. He progressed from lifting his head, to rolling over, to crawling, and then to cruising around holding onto furniture. He was a happy toddler for whom it seemed like there was something new every day.
Before long it was his first birthday and his initial baby steps came on that big day. I recall the look of apprehension and then the thrill of achievement expressed with a smile as he took his first awkward, wobbly steps. I was so proud. What an amazing accomplishment! I was cheering him on. That is still one of my most vivid memories of him--when he was "normal".
By eighteen months he was just beginning to speak and had a small but useful vocabulary. He had been meeting all of the developmental milestones, and I imagined that before long he would play little league baseball. In my mind’s eye, I would beam with pride and cheer as he fielded the ball or swiftly ran the bases. Down the road, I imagined having philosophical discussions with him as a young man. Our relationship would be close and warm; he would come to me comfortably whenever he wanted. I would give him space when he needed or wanted it for it was in these ways that I had planned on being the perfect dad. My little boy stopped speaking fourteen years ago. Now I know what Kahlil Gibran means first hand about how inextricably woven together are our moments of joy and sorrow. In June of 1981, at eighteen months of age, he got sick with a virus. His pediatrician treated the ear infection that had developed. The infection went away, but my son never got better -- never spoke another word, a silence that is never easy to accept.
I was sick with worry for a long time. He played with the same rattle for hours on end. He was uninterested in people making his engaging personality a mere memory. When he was eventually diagnosed with autism, I was confronted by the reality that the little boy I loved so dearly would never be a normal child. I was flooded with the deepest grief of my life.
Recovering from the impact of my broken dreams took many years. Probably the best way that I can explain my grief and inner transformation is to share some of my dreams and how they evolved over time. When I first knew that something was wrong but couldn’t accept the severity of the problem, I would dream at night of my daily encounters working with Tariq doing things that the speech therapist from his early intervention program showed me and things that I had read about to help a child with autism. For example, I would imitate his repetitive movements, like flapping my arms when he flapped his. When I would do this during the day, Tariq would usually notice me and stop what he was doing for a few moments. He would give me a little smile and then go back to what he was doing.
In my dream, which recurred frequently, Tariq would look at me intently while I was mirroring his behavior and then slowly form a word or two. My heart would beat faster with excitement. I would rejoice and hug my son. In the morning, I would wake up full of hope and keep working with him trying desperately to make the dream come true and convinced that because of the dream he really would begin talking to me again. So the dream fueled my efforts and renewed my hopes. I would tape record his grunts and groans and babblings and whatever noises would come out of his mouth and listen to them searching for progress or meaning. At times I thought I heard some, but no words came back after years of intense effort and the same dream repeating during so many nights.
Over time I began to wake up exhausted and overwhelmed realizing that the dream was not coming true. It was hard to go on because my hopes were fading. While writing this account, I retrieved one of the tapes from a dusty box in our basement. Listening for just a few moments brought back the feeling like it was yesterday when actually it had been twelve years ago. I heard myself on the tape patiently trying to coax meaningful sounds out of him. Then I couldn’t listen any longer because it hurt too much to realize that Tariq still makes the same vocalizations. The only difference I noted is that his voice has undergone a typical adolescent transformation to a deeper tone.
Speech can be delayed, but when a child is not speaking by five there is little chance that normal speech can develop. I still continued to hope and be very disappointed. All my life whenever I worked hard at something I had gotten results- things had worked out. When people got sick, as long as it wasn’t a fatal illness, if they did what the doctor said, they got better. Aren’t these fundamental laws of the universe? My parents and my teachers had always told me so. How could I believe otherwise? It was hard to fathom that I might have no control over my child’s condition.
As these dreams were evolving, my everyday life was changed forever. Besides speech and movement therapies, vitamins and a special diet was tried. Tariq’s special needs seemed endless, and the amount of care required was overwhelming. He rarely slept through the night, and I was constantly exhausted. As a child who knows no danger, my son was a constant threat to run into traffic. Unfortunately there were few relaxing moments, so my dreams provided a welcome respite.
It was so hard to admit to myself that it was not to be, and that love was not enough. I cried and cried over these years as the grief continued to wash over me. Fortunately I got some help from my unconscious. Around Tariq’s eighth birthday, I had a somewhat different dream. In this one, my son spoke to me in sentences, and I was amazed, relieved, and overjoyed. As the dream continued, however, I woke up within the dream and knew that I was dreaming and that Tariq had not spoken.
When I awoke the next morning, I felt a deep sense of relief reverberating all through me, a sense that I could just live with things the way they were. I didn’t have to keep pushing myself. If a miracle would come, I’d accept it, but Tariq’s inability to speak was just the way it was. Now I could be a whole person despite his silence. In my sleep, my mind had let me know that having a "normal" son was an unreachable dream.
That dream repeated over three or four years, and then I had a new dream. This time Tariq talked to me again. Looking at me intently with his big brown eyes, he told me that he loved me, felt my love for him, and knew I had done everything possible for him. He told me that he was happy in his own way and that he wanted me to be happy. Then he went back into his everyday state of autism--playing with his tongue, making unintelligible noises, and sometimes being unaware of my presence for long periods of time unless he wanted something. I felt sorrow and longing for what could have been if only he could have continued talking. Waking up from this dream is harder to describe, but there was a definite sense that I had moved a little further on my journey. Tariq with his limitations unable to read, write, talk, or relate normally to others was a part of me, and I was a fuller, deeper person despite the loss. I had survived the wound. I was healing, growing, and different now. Tariq had been and continues to be a catalyst for a life fuller, deeper, and more loving than I had ever imagined.
He has never lost his space in my heart for some of my greatest joys and deepest sorrows have been in the moments he and I have shared. His disability is so severe, but his soul, his inner essence is totally normal. Without speaking a word, he has taught the little boy in me to speak. In this way he is with me at every moment. He has all the positive emotions as well as the negative and has taught me to see them readily. When he feels good, he shows interest and excitement. There is pride when accomplishing something he set out to do and a refreshing sense of humor. When startled he lets me know by raising his eyebrows, opening his eyes wide, and opening his mouth.
Because of my son, I have learned how to tune into the signals I used to miss. He doesn’t recognize danger too well, so he has a problem with fear, and I have to be extra vigilant. When in distress, he lets people know it although it’s hard to tell what’s bothering him. I can only use empathy to try to understand him... but what power lies there! In a world that has valued reason and intellect above emotion, children like Tariq teach us to look inside ourselves.
Nature gave me a fair amount of intelligence and ability, but I was an incredibly shy child. Before Tariq came, I didn’t know much about my feelings or what they meant. When I was upset, I would just hold it in. When someone would ask me how I felt, I would usually go blank. There was a confusing numbness and a sense of frustration and inadequacy when I could not answer. Unable to connect my thoughts and feelings, my abilities were locked in.
Now I know really well the shades and colors of all the emotions in my inner life- both positive and negative. It is a great treasure he has revealed to me. It reminds me of "The Sounds of Silence" by Simon and Garfunkel, particularly when the song says "People talking without speaking, people listening without hearing..." As I have learned to articulate these experiences, I have been able to help others as a psychologist while simultaneously finding meaning and value in my son’s life. I’ve been keeping journals for many years, and now I’m writing and telling the world about what my son has meant to me. There are millions of other children like him--some with more ability, some with less. These "imperfect" children born to loving parents who struggle to rise from disappointment to find a stronger love--a more perfect love that lies on the other side of sorrow. It can be a life so full and rich amidst all the difficulties. I feel good about how far I have come, but the cost has been great... my only wish is that I could have done it another way.
Robert Naseef
514 South 4th Street
Philadelphia, PA 19147
Bob Naseef lives in the Philadelphia area with his wife, Cindy. In addition to Tariq, their blended family includes three daughters: Antoinette, 14, Kara, 4, and Zoe, 2. Tariq, now 16, resides at the Devereux Kanner Center in nearby West Chester, Pennsylvania. Bob is a psychologist specializing in serving the families of children with disabilities. He enjoys gardening and photography and serves on the board of directors at the Center for Autistic Children in Philadelphia, where Tariq was once a student. he is working on his first book.
Published in "FathersVoices," Exceptional Parent magazine, March, 1996.
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