What Preparations Should Families Make for the Evaluation?

A multidisciplinary team assesses the infant or toddler. For the child with fragile X syndrome, this team may include speech-language pathologists, audiologists, occupational therapists, physical therapists, psychologists, social workers, and early intervention specialists. There may just be two or three team members, along with the parents, on the multidisciplinary team.

Preparation for the evaluation by parents and caregivers of children with fragile X syndrome is essential. Parents can prepare for the process by learning as much as they can about unfamiliar concepts and terminology, talking to other parents about the process, and writing down their questions and concerns. 

It is important for parents to realize that they know the most about their own child and may know much more about fragile X syndrome than some of the professionals on the team. Parents may wish to bring brochures about fragile X, web-site address, and other materials to share with and educate team members.

In planning the evaluation, parents might consider the following:

• When is my child at his or her best? How should the evaluation be scheduled?
• Will my child be overwhelmed by strangers in strange places? Would the evaluation be better conducted at home?
• Who will be conducting the procedures, and what are their roles?
• Are formal tests the best way to see my child's strengths and weaknesses? Would more informal, play-based assessments be more effective?
• What calms my child the best, so that he or she can participate in the assessment?
• What should I bring to the assessment? Favorite foods, toys, videos of my child in various situations?

Gail Harris-Schmidt, Ph.D., CCC-SLP
Saint Xavier University
Chicago, Illinois

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