One of the most striking things I have learned from parents raising children with disabilities is that there is at least one fundamental difference between raising normal children and raising those who are not. Our society and culture, our institutions and conveniences all the things we are surrounded by are geared towards normalcy. And our society has a fairly standardized and accepted approach to parenting (whether good or bad) in which children are expected to follow the pathways set out by their parents. These expectations may be set directly, according to what the parents say or do, or they may be set indirectly, through the governments, school administrators, and other officials that parents elect. But when children are atypical, the parents must follow the child! The less the child conforms to standard patterns, the more challenging it may be for the parents, because each child is unique and will often require learning as we go.
Thus we hear stories such as Thomas the Tank Engine becoming the focus of the family, if only because it is the one thing that captures Dannys imagination and draws him out into joyous expression and contact with the outside world. We hear of a couple that never had a full nights rest until they started running a fan in Tonys room, which almost magically helped him sleep through the night for the very first time. For another, it was dancing with their baby to The Teddy Bears Picnic that quieted the midnight tantrums that otherwise seemed to have no end.
One mother shared these thoughts with me:
In so many categories of disabilities, the parents will be placed in a similar position of having to learn from the child. They wont have the luxury of being able to just raise their children the way they were raised, nor to expect their children to simply do as we do, listen to what we say, and be like everyone else. Instead, they will have to be inventive, resourceful, and creative, and let the child be their guide and teacher. One parent phrased it this way: