By Ellen Barnes, PhD., Director

I recently watched an episode of the television drama Without a Trace, where the plot involved a boy with autism who runs away and the police and family members try to find him. The actors playing the mother and father are themselves parents of a young son identified as autistic. While there were a couple of odd and I thought unnecessary twists to the plot-line, there was an effort to portray how autism manifests itself in social behaviors and sensory needs. And there were great examples of strategies that help a person with autism cope with the world: the mother preparing her son for a novel field trip to the museum, his brother explaining what was coming next and why they needed to move on when he seemed frozen in his anxiety, the father apologizing for yelling in a loud voice (which had triggered his running away). As in most TV stories, ending was a happy one. But the most compelling message that stayed with me was the complexity of emotions (deep love, a sense of stress and worry) that a disability brings to a family.

Every parent has moments that their heart aches for their child and that the day-to-day needs of children overwhelm them. Every parent wants their child to experience love, a sense of community, positive self-esteem and meaningful work; and there are times that we worry that this won’t happen. But having a child with a developmental disability can bring stressors that are different and more intense. These include concerns about school and community acceptance; the perceptions of others (relatives, neighbors); the sense of loss for the child that was anticipated; the need for constant attention and oversight; the frustration when your child can’t tell you what is wrong; a continuing dependence into the future; difficult behaviors; limited social relationships; and the challenge of balancing the needs of all the family members. In order to keep going and sustain their energy, parents need time away from dealing with problems (vacations without guilt!), support from others, information about hopeful strategies, and personal stress management techniques (exercise, humor, a “pause button”).

Times of transition can be so anxiety-producing, especially when your child gets special services. It requires learning a new school-age system with new players (teachers, therapists, administrators), developing trust that these people will love and accept your child and that the structure of the program will guarantee the supports he/she needs. It means having faith that the peers in the new class will reach out and be welcoming, and that the grown-ups will help this happen. Unless we have the experience of parenting a child with special needs (“walking in these shoes”), we can’t really know what it is like. What we can do for each other is listen, share resources, provide a community, be a friend, and appreciate the resilience of children who have challenges to overcome and the resilience of the adults who love them.

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