Students with Fragile X Syndrome seem to often be described like the mythical girl with the curl in the middle of her forehead: when they are good, they are very very good, and when they are bad they are …well, let s just say quite disruptive. What accounts for our lovable, good-natured, eager to please angels morphing into Tasmanian devils quicker than you can say Fragile what
Teachers, many of whom are well equipped to work with kids who are prone to demanding behaviors, find the unpredictability with which our charming cherubs will create havoc particularly perplexing. The most accomplished masterminds of consistent environments are foiled by fraggles for whom antecedants are undetectable and consequences appear to be inconsequential.
It s not that these children are impervious to tried and true behavior management techniques. At times, however, the neurological wiring characteristic of FXS results in an internal condition that supersedes environmental influences. The difficulties our children experience with self-regulation can overwhelm their ability to respond to their surroundings with intention or control.
We know from numerous research studies that when a person who has FXS is in a highly aroused state, it takes them longer to return to a state of relative calm than it does unaffected peers. An episode of acting out behavior exhibited during such a state is no more a function of attention seeking than a panic attack. The strategies typically employed for treating inappropriate behavior such as ignoring or imposing a conditional consequence will therefore not be successful.
While to date we do not have in our tool chest an anti-arousal power tool, there are a number of potentially effective tactics that can be employed. Calming techniques based on principles of sensory integration can assist an agitated child in re-organizing their processing capabilities. The provision of a safe and undemanding space, free of stimulation can be a helpful intervention. The introduction of a sensory diet throughout the day may prevent arousal levels from escalating. Medication can also be a potentially valuable facet in addressing self-regulatory difficulties.
Teachers will need to contend with some additional complications when it comes to addressing the range of challenging behavior kids with FXS present. A fraggle who is encouraged to go to a quiet space when showing signs of aggression can appear to be given an unfair pass when other children in the classroom are on a response cost program for what looks like identical behavior. School personnel may be unable to accept the application of a deep pressure massage to a child who is hitting and kicking as anything but unacceptably reinforcing. Educating our Fragile Xers requires educating others as well. There are times when members of this unique population call attention to their difficulties in no uncertain terms, calling upon their special education community to rally their efforts to understand them.
I am not suggesting that the answer to behavior problems for students with Fragile X is routinely allowing escape from demand situations. The accommodation of their needs for calming when upset must be tempered with strategies that help FXer s learn to adapt to taxing conditions if they are to make good educational progress. The choice of strategy needs to be based on an understanding of what is motivating the behavior. Top notch detective work is required of teachers of children with FXS. Is throwing a shoe an inappropriate request for attention, a sign of physiological discomfort, or a deliberate action employed to achieve time out If it s the latter, should time out be allowed to meet a need for break from stimulation Or should the student be guided to adapt to classroom expectations Skilled observation, functional behavior analysis, and careful evaluation of strategy effectiveness will eventually lead to a judicious course of action.
Recognizing to what degree an undesirable behavior is within a student s ability to control is a component in working with any child with special needs. When working with a student with Fragile X Syndrome, there is something of an advantage in making
this determination. We know that their diagnosis means that they have an altered physiology. This manifests itself in ways unique to each affected individual. Gaining an understanding of what this looks like for a particular student will provide teachers with valuable information that can be translated into an individualized program that prescribes an educationally attuned compromise: accommodation on the part of the community within which the student is a member, and adaptation on the part of the student to the expectations of the community. Knowledge of how Fragile X Syndrome affects a particular student will help the IEP team discern the parameters of this delicate balance.
Laurie is an educational therapist who practices in Midwood, Brooklyn and makes home visits throughout the city. Laurie s background includes instructional, behavioral, and rapport building strategies with pre-schoolers with autism; children, teens, and adults with intellectual disabilities and/or autism; school-aged children with reading disabilities; and adults dually diagnosed with intellectual disability and behavior disorders. Laurie works to identify the underlying causes of learning difficulties when developing the best intervention plan to set the student up for success. She can be reached at email@example.com.