- Fragile X
- Treatment & Intervention
- Support the NFXF
Marcia Braden, PhD
Psychologist and special education consultant in Colorado Springs who specializes in Fragile X.
Including special needs children in general education classes is grounded in special education law. But however sound the theory and purposeful the law, having special needs students successfully included with typical peers often eludes reality.
The momentum to include students with fragile X syndrome (FXS) in the general education mainstream grew out of the Individuals with Disabilities Education Act (IDEA). The assertion that children with disabilities had a civil right to attend school in their home school setting grew out of Civil Rights litigation.
The emphasis to include students with FXS in general education classrooms has been noted throughout the literature. Perhaps the impetus for this movement comes from the fact that children with FXS have a considerable interest in people—one of the hallmarks of this population is a strong desire to interact socially. This often makes inclusion more viable and increases the success rate.
It is important to remember, however, that levels of affectedness vary from one individual to another, and placement options must include enough flexibility to meet individual needs. There are occasions when inclusion can wind up being restrictive to children with severe needs.
Symons, Clark and Roberts (2001) studied the classroom engagement of elementary school children with FXS and determined that the engagement was strongly related to the environmental and instructional quality propagated by the teachers and classroom. How the teachers structured and arranged the classroom environment was much more important to student engagement than were specific aspects of the child’s Fragile X status, medication use or dual diagnosis. This research clearly defined a number of environmental and instructional factors that are important when choosing a general education classroom.
Successful inclusion cannot be accomplished without a systematic, sequential process. Just placing the student with FXS in a genera
l education classroom with a para-professional close by does not necessarily constitute success. Likewise, the mere placement or proximity to typical peers is insufficient in achieving an appropriate education for students with FXS.
In order to design effective outcomes, the parents and school team must define the purpose of the inclusion. In other words, there must be a reason for the student to be included. Otherwise, the time spent in the general education classroom may reduce the time needed for other services that are often equally or more important to the child’s individual educational needs. The chart that follows defines a number of the necessary supports given specific targeted outcomes associated with the inclusion of an individual with FXS.
After the desired outcome is established, the team needs to design certain strategies to assist the student to be successful in the general education classroom. If the intended outcome is for the student aims to participate in the general education curriculum, it is often important to prime or pre-teach certain concepts or lessons beforehand. Collaboration between the special education and general education staff is critical to accomplish this level of coordination. When effectively done, this priming will help link individual instruction into larger group activities. This can also be effective when the desired outcome is to increase social interactions with typical peers.
The level of prompting and facilitation should be determined based on the needs of the individual. It is always best to use the least intrusive level of facilitation possible. The student’s behavior and level of participation will dictate the need for more or less teacher or para-professional support.
Because children with FXS respond better to visual input, effective prompting can often include visual schedules or icons. This enables the student to participate with less dependency on the attending adult. In addition, it is best to have the classroom teacher be responsible for redirection and facilitation because that is most like what is done for typical peers. Classroom rules and behavioral expectations should be the same for students with FXS unless there is a Behavior Intervention Plan (BIP) in place, which usually defines certain behavioral characteristics to be a manifestation of the disability. In those cases, special considerations are required.
Transitions can be difficult for students with FXS, and they are very common in the general education setting. Providing a predictable schedule with visual supports is important. If the student is aware of the change ahead of time, the element of surprise is eliminated. In addition to providing a visual schedule and other structured strategies, teachers can use a less direct approach such as side dialoguing among the adults in the classroom to alert the student to ending changes. (“So Ms. Johnson, it looks like we’ll be ready to dismiss the students for lunch in five minutes.”)
It is often prudent to afford the student with FXS an opportunity to carry equipment from the gym back to the classroom or assign him or her some particular job to complete as part of the transition time. This may help reduce the anxiety associated with the change.
Recently, after observing several special needs students in their included environments, I was struck by the poorly planned execution of their inclusion. Each had a paraprofessional in close proximity, tending to the student as if the paraprofessionals were teaching a class within a class. The tutorial relationship between the student and paraprofessional precluded those with FXS from being able to participate in the natural interaction within the general education class. In one setting, the students were grouped in sets of four and the students with FXS sat at their own table with two paraprofessionals and no general education peers.
The obvious question was: How does this qualify as inclusion? Inclusion is not “making students with FXS look typical”; it is instead helping students with FXS bring their own unique qualities into the general education classroom, with full access and acceptance, to the benefit of all. Hopefully, with good planning and emphasis on desired outcomes, the intent of IDEA will continue to bloom into positive and fulfilling experiences for students with FXS—and for those with whom they share a learning environment.