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"I hate that crap when people say to me, 'You must be so special that God picked you to have a handicapped child.' I don't feel special! I love my son, don't get me wrong. The fact is, even, that my husband and I are able to do more in some ways because he is so disabled that he doesn't notice we are gone so much for work and other things. If he was a 'normal' child, I think I would feel more guilt about the hours I work. Still, I would give it all up in a heartbeat to have a child I could take to basketball practice after school. Look at him. He is eight years old and he just learned to walk. He'll probably never learn to say more than a few words. Don't tell me I am blessed. No pregnant woman ever sat there wishing for a handicapped child. " -- Mother of son with multiple, severe disabilities. Her son died four years later, at age twelve. |
Some people might think the mother quoted above does not really love her son. After all, listen to the negative things she said about him. She even said right out that she wished she had a child who was not handicapped. Maybe you think like her and maybe you don't. Many parents say they would not change their child for the world. Others think just like the mother above, although few are as frank as to say so outright to a researcher. Having visited this mother at home, I can guarantee that she took very good care of her little boy. As he was very unsteady walking, they had handrails installed throughout the entire house so he could get around. They paid extra on top of the respite care pay to get the best child care they could find.
All new parents are susceptible to myths about parenting, and this is often even more the case with parents of children with disabilities.
Myth #1: A 'good' parent feels unconditional love for her children all of the time.
Fact: Many parents do not always feel love for their children. Most parents feel ambivalent about their children some of the time.
For example, while I was writing this web page, my little girl came into my office five times. She wanted me to replace the batteries in her doll. She wanted me to run her a bath. She wanted me to check if the bath was too hot. She wanted to know if she could wear her shorts that she wore yesterday that are covered with dirt. She wanted to know if she could go play with the little girl next door. As you might have noticed, this web page isn't so long up to this point, and I was getting interrupted about every four or five sentences. Did the thought cross my mind, "You are a real pain in the neck and I could get a lot more work done a lot faster if you weren't around?" Yes, it did. Does this make me a horrible person? No, it makes me normal. Parents of children with disabilities are not exempt from the feelings other parents have.
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Myth #2: It is unnatural not to (always feel loving toward your child, know what to do when your child is crying, ______ fill in the blank here). Fact: There is nothing unnatural about not being perfect or all-knowing. You're not a buffalo that goes off by itself to have its young. Besides, our animal friends aren't all that natural, either. While buffalo are extremely protective of their young, that's not universal even in nature. Plenty of other animals, like cattle, may walk off leaving the young lying there and not even nurse the newborns. That is why ranchers are regularly checking their fields during calving time and many years they will be bottle-feeding two or three calves. Besides, so what? You're not a buffalo. You're a human being and you learn as part of society. Parenting behavior and "natural" responses come after time / experience and learning. |
A major benefit for most parents is being part of a family. When my first daughter was born and would not stop crying I would call my mother, my grandmother or my sister for advice. Unfortunately, many parents of children with disabilities may not have a family member to whom they can turn who has had the same experience with, for example, feeding a child with cerebral palsy, or calming a child with autism. During this course, you will have the chance to learn about a lot of resources for learning to be a better parent, everything from the Family to Family Network to the Commons Area sponsored by Spirit Lake Consulting, Inc.
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