Educational Strategies for Students with CHARGE SyndromeHolly Cooper, Ph.D.Texas Deafblind Project
Best Practices in InstructionHearing and vision impairments are common, be sure assessment information is in place and that sensory needs are addressed with the appropriate aids and accommodations:
Communication assessment (from an SLP or AI)Functional vision evaluation (from a TVI or O&M)Learning media assessment (from a TVI)Orientation and Mobility evaluationAssessment of Deafblind Access to Manual Language Systems (ADAMLS, if appropriate)
Best Practices in InstructionMake sure the communication mode is accessible to the child and you have the childs visual attention when you communicate, especially if sign language is the communication mode.
Best Practices in InstructionBe sure the student knows the meaning of the words or signs you are using. If the student doesnt understand, teach him or her!
Use real objects, pictures, drawings, and real life experiences. During experiences, be sure you introduce new signs in context, Repeat the sign often in natural communication opportunities.
Best Practices in InstructionIf the student is using sign language as their primary communication mode:
It may be helpful to pair a new sign with a picture or photograph of a familiar person making the sign so the student can have a static image. Students with visual impairments often need to look a word, sign, or picture longer because their visual processing is slow. Line drawings are highly abstract and may not be understandable to some students.If the student is learning to read print, pair the picture with a word.
Best Practices in InstructionIf the student is using oral language,
Use real objects Real experiences Tactile symbolsPhotographs or picture symbolsPair spoken words with print or braille words
To teach the meanings of words and concepts.
Best Practices in InstructionLanguage experience stories are appropriate for a variety of students. Introduce the vocabulary to students before doing an activity, be sure to have it in print or on print and picture symbol cards if this media is appropriate for the student. After an activity, do some writing along with the student about the event. You can discuss and use printed words and sentences written along with the discussion, or use picture symbols or tactile symbols along with print or braille words to tell the story of the event. Read again a few times to reinforce the new vocabulary learned or new print or symbols learned.
Best Practices in InstructionProblems with behavior can also be addressed with educational strategies:Teach organizational skills Keep a daily schedule with the studentGive the student choices when possibleEncourage turn taking and sharing in structured situationsSelect activities or offer choices interesting to the studentGive student choice of who they will work withGive tasks which can be done independentlyAllow partial participation
Behavior issuesIndividuals with CHARGE frequently have some of the following behavior problems
Attention problemsSelf-stimulatory or self-abusive behaviorObsessive-compulsive behaviorTantrums or aggressive outburstsPassivity or refusal to cooperateSocial skills problemsDifficulty sharing or understanding others point of view
Behavior issuesSome may be the result of physical problems kids with charge commonly experience:
Sleep deprivationHunger or digestive problemsPain or discomfortFatigueBalance problemsDifficulty self-regulating (resting when tired, etc.)
Behavior issuesUnpredictable behavior can be due to long term issues includingPost-traumatic stress disorder due to: painillness multiple hospital staysmedical procedures
Behavior issuesIndividuals with CHARGE can experience Paradoxical reactions to medicationsandmedications that are ineffective after a period of use
Behavior issuesCan be induced or made worse by stress:
Low visionCommunication problemsChanges in routineClassroom expectations
Behavior issuesSensory problems may result in apparent uncooperative behavior:
Ambient noiseGlare or too much light Too much movement or distractions in the environmentProblems with glasses or hearing aides FatigueSeating issues
Behavior issuesSensory Issues can cause stress leading to unexpected outbursts or passivity in students.
Sensory deprivationSensory overloadSensory processingLack of sensory load awareness until the load becomes critical
Behavior issuesTantrums and aggressive outbursts may result from:
Frustrations with communication (not understanding what is said to them or not being able to express their wants and needs)Being told to discontinue a favored activityBeing told to do an activity they dislikeBeing pushed to do work at a more challenging level
Behavior issuesRefusal to comply with directions may be due to:
Communication issuesFatigueTrouble regulating arousal levelsPostural insecurityVision or hearing deficitsDevelopmental level
Behavior issuesStudents with CHARGE also experience stress and behavior problems for the same reasons as other kids:
Teasing or bullying by other studentsPuberty and hormone changesAllergies, especially respiratoryProblems at home
Best Practices in InstructionKnow whats happening in your students life and healthGive preferential seating if appropriateAdjust lightingTry an FM amplification systemCheck for understanding during instructionGive ample opportunities for hands-on learning
Best Practices in InstructionUse a multisensory teaching approachSlow down, and repeat Use the students interests and preferences to engage them in learningKnow when you can push them, and dont if its not necessaryStructure opportunities to share or interact with other studentsGive clear and explicit limits
Best Practices in InstructionUse a team approach to educationBehavior problems are part of the disability
Develop a behavior intervention plan if neededIndividualize instruction, meet their unique needsCommunicate with parents and family members
Best Practices in InstructionTake a Break!
Let them lay down Move around Do an errand Sit in a beanbag chair in a secluded area
Give them time to recover their physical and mental energy
**Lighting, close proximity, glare*******Problems with the sleep cycle are commonSelf-regulation: alternate active with sedentary activities, challenging with easier, fun activities.Dont rely on the student to be a good judge of their state of fatigue, impose breaks or resting activities.Teach self-regulation by talking about fatigue, anger, boredom, restlessness on the part of yourself as an adult, other students, and the individual with CHARGE. Give them words (signs) for what they are feeling so they can learn to express it.*Students may be fearful of mistrusting of adults because of past experiences with medical interventions.**Low vision is more stressful than total blindness, research shows. Students with low vision often attempt to pass as not needing accommodations.Dont ask, can you see/hear this? ask content questions to check for understanding and comprehension.**Individuals with CHARGE are often hypo-sensitive: they arent aware of the high level of input they are exposed to until it becomes too much and they have an outburst or shut down.**Dont assume theyre being lazy or stubborn. They may not understand what is asked of them. They may not be able to perform at the level of other students in the same class and not understand what is being taught.*Short stature, immature appearance, funny lookingPuberty may be late, or not occur at all. Even without a normal reproductive system there can still be female-cycle hormonal changes causing PMS-like symptoms.Inability to communicate about feelings, not understanding when parents fight or are upset with other siblings, inability to tell others what is happening in their lives.******