Reality shows have taken over our television programming. Rather than watching fictional characters perform comedic,suspenseful or dramatic scripts, we now observe “real” people compete, struggle, argue and live their lives. These programs entertain us and sometimes attempt to educate us. Various “pop psychology” programs, including Dr. Phil and  Supernanny, have crossed over to providing parenting advice.

The success of these programs validates the notion that parents in our society are continually reevaluating their parenting strategies and looking for a particular approach that will work for their child. Families that include children with Fragile X syndrome share similar concerns but are faced with additional challenges. That is the topic of this column.

Popular parenting advice, whether it comes from a television show, self-help book or prepackaged program, can provide insight and applicable strategies. While the information can be helpful, it can also be misleading enough to cause parents additional stress, especially in families of children with special needs.

There are several factors to consider when evaluating the applicability of a parenting program for children with special needs specifically those with Fragile X syndrome. One important point to bear in mind is that these programs were designed to address the behavioral needs of typically developing children. The children of most viewers have intact sensory systems that provide accurate feedback from the environment.

Their language systems are capable of both comprehending and remembering verbal directions. Given the difficulties children with Fragile X syndrome have in these areas, it is critical that we view the advice offered by “reality parenting” programs through lenses tinted by knowledge of our children’s strengths and weaknesses.

Examples from Supernanny

This process can be difficult to navigate. Possibly the best way to explain it is to provide an example. In a recent episode of Supernanny, children were having difficulty sleeping alone, and with following their mother’s directions. The Supernanny recommended creating a routine around daily activities that involved parents spending time with each of the children separately. She also recommended developing a bedtime routine that included specific guidelines for putting the children back in their beds each time they got out. The parents employed this tactic through 45 minutes of screaming and crying, after which the children finally fell asleep.

Supernanny also recommended placing the children in the “naughty chair” when they did not follow their parents’ directions. The parents were instructed to discuss the situation with their children and place them in the naughty chair for one minute for each year of their age. The children were then told that when they said “I’m sorry,” they would be allowed to rejoin the family. Once the children left the naughty chair, their parents talked with them about why they had been placed there.

The parents expressed sadness while they watched their children struggle with the new expectations and consequences for their behavior, and they continually questioned the new approaches. They received support, encouragement and direction from the Supernanny, and by the end of the program the children’s behavior had improved.

How This Applies to Your Child

At first glance, many of the Supernanny’s suggestions would seem applicable to parents of children with Fragile X syndrome. This includes the implementation of daily routines and adhering to a consistent set of previously agreed upon consequences. The naughty chair is a new and clever way to refer to “time out,” which can be an appropriate consequence for misbehavior by children with Fragile X syndrome. But the manner in which these approaches are applied is where we must pause. Several points bear mention here:

  • The Supernanny provides the children with a great deal of verbal explanation, which is counter-therapeutic to individuals with Fragile X syndrome. Short and concise directions are more effective for children with language delays and attention issues.
  • The formula of one minute in the naughty chair for each year of age is too long for children with developmental delays and poor impulse control.
  • Time out should be linked to a specific behavior, and when the time has elapsed the child should be allowed to rejoin the classroom, group or family activity. But the Supernanny requires children to apologize before they can rejoin. If they do not, she recommends placing them back in the chair. Requiring a child with Fragile X syndrome to apologize confounds the presenting infraction with a behavioral dilemma. The child is not only being punished for the original infraction, but then runs the risk of additional punishment for being unable to apologize. This complex behavioral expectation can be provocative. For example, we know that individuals with Fragile X syndrome are often unable to speak on command due to their language delays and performance anxiety. Holding out for an apology may distract from a positive and compliant outcome.

This short scenario illustrates how one popular parenting program can provide helpful strategies, while at the same time being a prescription for frustration and failure. So what is the bottom line?

Summary

Watching parenting programs and/or reading books on the subject can be helpful and somewhat inspiring and normalizing. These programs show how many families struggle with some of the same issues facing families of children with Fragile X syndrome. A new approach can sometimes become a creative remedy for an ongoing behavior problem. The key is to understand that these programs were creating for typically developing children and thus require adaptation to the specific circumstances you may face in parenting a child with Fragile X syndrome.

In summary, use these guidelines when considering the application of popular media approaches:

  • Remember that most programs are developed for typically developing children who do not have a neurobiological disorder.
  • Before implementing any plan, review it with someone who is familiar with Fragile X syndrome and your child.
  • Programs that involve discussion and explanation need to be reviewed carefully, as children with Fragile X syndrome have language delays and sensory deficits.
  • Prioritize the behaviors you want to target. Choose to change behaviors that are most debilitating to the family’s well-being and harmony. These may differ dramatically from those that present in families of typically developing children.
  • Understand that parenting is both one of the most challenging and rewarding experiences in a lifetime. Stay the course and celebrate the successes!

Source: Foundation Quarterly, Issue 20, Spring 2005

Authors

Marcia Braden, PhD
Karen Riley, PhD