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Education Supports

It is important to have HIGH LEARNING EXPECTATIONS for children who have Aicardi Syndrome. Encourage use of the core educational curriculum and modify it in order to meet the individual needs of the child.

What you need to know

  • Individualized, flexible, and appropriate educational strategies/supports are keys to success.
  • Intellectual ability may be underestimated due to lower functional abilities.
    • Developmental testing may be difficult because of attention, activity, speech and motor issues.
    • Formalized testing has limitations.  Incorporate observations in child’s natural settings as part of testing.
  • The girls (and occasional boy) vary widely in abilities, stamina, and medical challenges. Know each one individually and learn about their unique challenges and abilities. 
Vision

Vision abilities vary widely among the girls who have Aicardi syndrome. Visual fields may be restricted and asymmetrical.

  • The color combination black and white and the combination red and yellow were most often reported as the colors best seen by the child.
  • Light colors, pastels, and low contrast colors may be hardest to see.
  • Corrective glasses may be appropriate
Communication
  • Communication skills of children with AS can range from typically developing to completely non verbal. Many children with AS primarily use other forms of communication such as gesture, or an augmentative communication device.
  • Children with Aicardi often have a strong set of social skills.  
 
Motor
  • Many children who have Aicardi syndrome will have both fine and gross motor challenges. .
  • Some girls will be able to walk and some will use a wheelchair.
  • Due to seizure activity, children who are mobile might need helmet to protect them if they fall during a seizure.
  • Some children will have one side of the body that works better than the other side, which is important to know for motor activities and communication devices. 

What you can do

Communication
  • A speech-language pathologist (SLP) may recommend use of an augmentative and alternative communication device and/or the continued use of sign language to aid in expressive communication skills.
    • These devices are programmed for the individual child to provide them with a voice and ensure that the child can relay messages to others within functional settings such as the child’s home and classroom.
  • Speech and Language therapy can help assist children with all aspects of verbal speech including articulation, phonation, nasality, rhythm, and breathing as well as with language both verbal and written.
  • Continued communication support through the school years will be important as literacy and pragmatic capabilities (the use of language for social communication) become increasingly important in the middle and high school years. 
  • Incorporate typical language skills in social, work, and life skill areas.
  • Children with speech and motor difficulties often benefit from speech and occupational therapy.
  • Teach learning strategies for non-verbal communications.
    • Consider new technology, computers, signand sign language.
    • Incorporate early use of augmentative communication aids such as picture cards or communication boards.
    • Communication should work with child’s desire to socially interact with others in natural settings.
    • Make sure children have opportunities for choice and control in their lives (choose colors, clothing, play, work partner, etc.
    • Consider multiple means of communication paired with the knowledge of when to use one method vs. another. 
    • Find AAC system that allows for maximal social reciprocal communication.
    • Encourage finger pointing early to help with device use as they age.
    • All persons interacting with the child should have education and training on how to encourage reciprocal communication with the device.
    • Model, model, model use of the AAC device to encourage its use.
    • Continue with strategies that improve oral control to maximize their potential as oral speakers.
    • Consider a team approach, such as an OT or PT to consultant to work with the SLP for optimal positioning to get the most benefit from hand use for communication.
    • Consider vision specialist to gain insight into best visual field for communication devices.
Consider therapists and specialists to consult and support classroom teacher and paraprofessional
  • Physical therapy
  • Occupational therapy
  • Speech therapy
  • Vision therapy
  • Musculoskeletal support
  • Treatment for prevention of scoliosis related complications
  • Alternative communication
  • Paraprofessional support may be needed
  • You may want additional information about your child’s disability, early intervention, school services, therapy, local policies, transportation, and much more. Every state in the USA has at least one Parent Training and Information Center (PTI) to offer families just this kind of information. To find your state’s center, go to the Center for Parent Information and Resources.