Educational Strategies for Students with CHARGE Syndrome

1. Educational Strategies for Students with CHARGE Syndrome Holly Cooper, Ph.D. Texas Deafblind Project

2. Best Practices in Instruction Hearing 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 evaluation • Assessment of Deafblind Access to Manual Language Systems (ADAMLS, if appropriate)

3. Best Practices in Instruction Make sure the communication mode is accessible to the child and you have the child’s visual attention when you communicate, especially if sign language is the communication mode.

4. Best Practices in Instruction Be sure the student knows the meaning of the words or signs you are using. If the student doesn’t 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.

5. Best Practices in Instruction If 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.

6. Best Practices in Instruction If the student is using oral language, • Use real objects • Real experiences • Tactile symbols • Photographs or picture symbols • Pair spoken words with print or braille words To teach the meanings of words and concepts.

7. Best Practices in Instruction Language 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.

8. Best Practices in Instruction Problems with behavior can also be addressed with educational strategies: • Teach organizational skills • Keep a daily schedule with the student • Give the student choices when possible • Encourage turn taking and sharing in structured situations • Select activities or offer choices interesting to the student • Give student choice of who they will work with • Give tasks which can be done independently • Allow partial participation

9. Behavior issues Individuals with CHARGE frequently have some of the following behavior problems • Attention problems • Self-stimulatory or self-abusive behavior • Obsessive-compulsive behavior • Tantrums or aggressive outbursts • Passivity or refusal to cooperate • Social skills problems • Difficulty sharing or understanding other’s point of view

10. Behavior issues Some may be the result of physical problems kids with charge commonly experience: • Sleep deprivation • Hunger or digestive problems • Pain or discomfort • Fatigue • Balance problems • Difficulty self-regulating (resting when tired, etc.)

11. Behavior issues Unpredictable behavior can be due to long term issues including Post-traumatic stress disorder due to: pain illness multiple hospital stays medical procedures

12. Behavior issues Individuals with CHARGE can experience Paradoxical reactions to medications and medications that are ineffective after a period of use

13. Behavior issues Can be induced or made worse by stress: • Low vision • Communication problems • Changes in routine • Classroom expectations

14. Behavior issues Sensory problems may result in apparent “uncooperative behavior:” • Ambient noise • Glare or too much light • Too much movement or distractions in the environment • Problems with glasses or hearing aides • Fatigue • Seating issues

15. Behavior issues Sensory Issues can cause stress leading to unexpected outbursts or passivity in students. • Sensory deprivation • Sensory overload • Sensory processing • Lack of sensory load awareness until the load becomes critical

16. Behavior issues Tantrums 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 activity • Being told to do an activity they dislike • Being pushed to do work at a more challenging level

17. Behavior issues Refusal to comply with directions may be due to: • Communication issues • Fatigue • Trouble regulating arousal levels • Postural insecurity • Vision or hearing deficits • Developmental level

18. Behavior issues Students with CHARGE also experience stress and behavior problems for the same reasons as other kids: • Teasing or bullying by other students • Puberty and hormone changes • Allergies, especially respiratory • Problems at home

19. Best Practices in Instruction • Know what’s happening in your student’s life and health • Give preferential seating if appropriate • Adjust lighting • Try an FM amplification system • Check for understanding during instruction • Give ample opportunities for hands-on learning

20. Best Practices in Instruction • Use a multisensory teaching approach • Slow down, and repeat • Use the student’s interests and preferences to engage them in learning • Know when you can push them, and don’t if it’s not necessary • Structure opportunities to share or interact with other students • Give clear and explicit limits

21. Best Practices in Instruction Use a team approach to education Behavior problems are part of the disability • Develop a behavior intervention plan if needed • Individualize instruction, meet their unique needs • Communicate with parents and family members

22. Best Practices in Instruction Take 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

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