A Patient's Perspective
A Special Needs Child
Am Fam Physician. 2009 Oct 1;80(7):676.
I have always wondered why I “got” a special needs child. In my head and heart, there were always the questions of, “What did I do wrong?” “What did I not do that I should have done?” I had a lot of negative thoughts. Then, I came to terms with myself. Being a mother of a special needs child has taught me to be positive, be patient, and to take things more calmly. Things are more meaningful for me.
Of course, it's often challenging to raise a special needs child. One day at the doctor's office, all the patients and doctors evacuated the building because the fire alarm went off. We were outside on a patio when my son batted one of the doctors on his heinie. The doctor turned around, and all he saw was me—he didn't see my son sitting next to me in his wheelchair. I was so embarrassed. I told the doctor, “I'm sorry. That was my son, not me.” Ultimately, he laughed. That kind of thing happens a lot with a special needs child, and you just have to go with it.
Parents like me don't get a lot of sleep, and we don't go out a lot. We look at life differently than parents who don't have special needs children, and we understand one another. For example, a friend of mine has a special needs son whose teacher was complaining that he was picking his nose at school. My friend's son couldn't use his fingers, so she told the teacher that he could pick his nose all he wanted—she was just thrilled he was using his fingers! It's important to see and be grateful for the little things.
If I could tell doctors what they could do to help parents of special needs children, I'd tell them that if the child is nonverbal, like my son, they should really pay attention to the caregiver. I'd tell them to ask the parents, “What is your child doing differently that made you bring him in today and think that he is ill?” “What is your gut feeling about what is wrong with your child?” I'd tell doctors they need to help the parents be their child's advocate.—y.v.
I have always believed that a family physician serves a unique role in working with a special needs child. My family medicine training, including skills in coordinating multiple subspecialists and community services, has helped me to be a committed advocate for this family. Patience, attentive listening, caring, and building a trusting relationship with a family and child who may be undervalued in other settings have all been critical to providing good medical care. The devotion and care this mother provides for her son have been an inspiration, and I look forward to my visits with them.
National Information Center for Children and Youth with Disabilities (http://www.kidsource.com/NICHCY/index.html)
Developmental Disabilities Resources for Healthcare Providers (http://www.ddhealthinfo.org/)
National Child Care Information and Technical Assistance Center (http://www.nccic.org/topics/topic/index.cfm?topicid=90)
Exceptional Parent Magazine (http://www.eparent.com/)
Close-ups is coordinated by Caroline Wellbery, MD, associate deputy editor, with assistance from Amy Crawford-Faucher, MD, Tony Miksanek, MD, and Jo Marie Reilly, MD. Questions about this department may be sent to Dr. Wellbery at firstname.lastname@example.org.
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