What you need to know
It is important to have HIGH LEARNING EXPECTATIONS for children who have Cornelia de Lange. Encourage use of the core educational curriculum and modify it in order to meet the individual needs of the child.
Children with CdLS may have global delays in their development. The range of intellectual disability in the classical form of CdLS may be quite significant to moderate. The range in the mild form is from normal to moderate. All individuals with CdLS may progress at their own rate, but they will continue to learn throughout their lives. The parent/caregiver and the school team need to work together to be sure everyone knows the child's unique gifts and talents. Parents can be involved with assessment, individualized education plan (IEP) development, educational placement, curriculum adaptation and necessary therapies for their child.
Factors to consider in educational planning include:
- The Child's medical and health status
- Ability to manage sensory-motor demands
- Social engagement and interest
- Ensuring relevant goals and objectives
- Motivating and understandable activities
- Need for structure and organization
- Appropriate adaptations/therapies
- Physical, speech and occupational therapies are important to optimize psychomotor development and communication skills.
- Alternative communication methods may be useful to facilitate communication if verbal skills are inadequate.
What you can do
Individuals with CdLS have a wide range of intellectual abilities. Many of the individuals with the classical form have difficulty with verbal communication. It is important to evaluate each child to determine his or her academic strengths and weaknesses. Remember to have high expectations and determine what supports they need to benefit from the general curriculum.
- Consult an expert who knows how to teach the school team and family about non-verbal communication;
- Experts can usually be found at the state Deafblind Project
- Consider Alternative or Augmentative Communication (AAC) to ensure the child can communicate effectively in all environments.
- Many children remain non-verbal to adulthood, but they will understand sign language, receptive language, and still have intact literacy skills.
- Many children with CdLs thrive on routines because they know how to predict and anticipate favorite activities throughout the day.
- Teach functional, daily living skills that make the child as independent as possible.
- In high school facilitate community experiences to learn about everything they will need to know when they are no longer in school.
- Try out many opportunities for volunteer work around school and the community.
- Determine what likes and dislikes they have in the world of work.
- Foster friendships with neighbors, schoolmates and relatives so they will have friends and companions for their entire life.
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.