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Q and A: couple's issues Question 5: "I have been dating a nice guy for 3 years now and he is a little uneasy being around my daughter. Are there any encouraging words for him?" My child has CHARGE Syndrome. Response: My initial response is to be moved by the love this man shows for you by being a part of your life. "Volunteering" to be part of a family of a child with such a complex medical condition can be extremely challenging and yet ultimately rewarding. I am also in awe of how much you must have struggled to care for your daughter given her very complex disabilities. For readers who are unfamiliar with CHARGE Syndrome, it is a specific set of birth defects. Children with this condition have vision and hearing loss, minor heart defects, retardation of growth and development, genital and urinary abnormalities, and sometimes other problems such as poor immune response or weak upper body strength. CHARGE Syndrome is found in approximately 1 out of every 10,000 births. Although there are many health problems which can result in many hospitalizations in childhood, a child with this condition can survive and become a happy adult. To you and your partner I would say that being around a situation we are so unfamiliar with can make us very uneasy. This is a normal human response. Sometimes becoming numb to just how different a situation is helps us to cope. I also think that your daughter helps both of you to be better people. Children with special needs teach us many lessons. I relate to your question as the father of a 21-year-old child with autism. At first I thought I would change Tariq and make him the boy I wanted him to be. I dreamed that I would write a book about it. Instead the book I eventually wrote became the story about how he has changed me. He helped me to become the man I needed to be. This helped me to help others which continually helps me to heal myself and experience value in my life and work. Tariq has taught me the meaning of unconditional love. I have learned to honor his sacred right to be loved for who he is. My attachment to his achievements dissolved over time. This was hard to let go in our world driven by appearances and money. Tariq has made very good progress in the past year. He will probably be able to go to a sheltered workshop in another year. That looked unlikely for a good while. He has become able to sit still and focus for long enough to be productive with routine tasks like stuffing envelopes or sorting things. In these 18 years, I have learned to accept the best he can do, and celebrate that achievement. A spiritual revelation grows from the intrinsic beauty of each and every child’s existence even with and perhaps because of such a severe disability. What a priceless lesson he has taught me without words in his silence! The inevitable juxtaposition of my son with healthy, typical children used to be so painful. I used to wince every time my friends’ kids and my nieces and nephews passed a milestone that Tariq would never achieve– like graduations from grade school, high school, or college. Now I can enjoy witnessing their progress. What Tariq has taught me besides accepting him is to accept myself. I think the challenges in our children radiate inwardly our own sense of being imperfect. I had to accept my own imperfections, warts and all. A recent gift was learning not to hide differences. For years, I would only keep or put into books the pictures of my son looking normal. Finally I have gotten to the point that him flapping his hands and him looking normal, are both him. Both images are okay. He is just as lovable either way. I learned this because photographer Tommie Leonardi thought he was a great subject–as he was. How wonderful a revelation! A certain degree of shame was shed making me feel lighter. (Some of these photos appear in the Photo Essay on this site) Tariq continues to teach me to live for myself. He needs me and he counts on me to do that. He cannot help me when I become old and frail. Rather I must assure that his needs are met when I am gone. When I understood that my feelings were my own, I could see reality more clearly. He was and is happy most of the time. Children like mine and others with various special needs are a spiritual catalyst. They challenge and sometimes force us to look at ourselves. They help us to accept our own imperfections and the imperfections of others. In that sense Tariq is not damaged in the least. He is perfect as he is. Along with other children and adults with disabilities, he bears witness to the diversity of the human condition and the resilience of our collective spirit. It’s hard for me to say that my baby is a young man. I have never stopped wanting to hear the sound of his voice. At twenty years of age, Tariq is still my little boy. He still puts his head on my shoulder. He has brought so many kind-hearted people into my life. Having a child with autism helped me to understand myself and others. It made me a better father to all my children and a better person. The greatest gift so far is the glimpse I have into the human heart. Where it is not who you know or what you know but who you are. RN |
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