Early Identification of Developmental Issues

By Antonie D. Kline, M.D., CdLS Foundation Medical Director

Early identification of developmental issues is one of the most critical aspects of any child’s career, particularly with an underlying condition.

Although there is a broad clinical spectrum of involvement in Cornelia de Lange Syndrome disorder, most individuals have some intellectual disability, developmental delay, and/or learning disability. It is crucial to detect any of these problems as early as possible because of available therapy and other services, related issues with school placement, and effects on behavior, family, and social interactions.

Public law states that any individual at risk for developmental delays is eligible for early intervention services in the United States.

In the 1970s, children at risk would have better outcomes if they had access to these services. The earlier, the better. By 1980, governmental funding was well established for these Early Intervention Programs, and this persists until today, provided through each state via each county. Each school-aged child at risk has an Individualized Education Program (IEP).

An IEP is a written document outlining the services and support that need to be provided to the student for that child to succeed towards a productive adult life. There is an IEP team, including the parents/caregivers, teachers, educators (special educators), therapists (physical therapy, occupational therapy, speech pathology), and often school psychologists, therapists, counselors, and/or advisors. For preschool students, there is a similar plan.

If the parents/caregivers feel that services are not being met, they can hire an advocate for the child to help with the IEP meeting. 

Early Intervention services must be tailored to each child, with different strategies used depending on the degree and extent of the disability and progression documented. Children who are nonverbal, with delayed or absent expressive speech, commonly found in CdLS, will need to be taught and followed differently than children with better language skills. Infants start with physical and occupational therapy and will have speech therapy added as language emerges.

There may be sensory processing issues in CdLS, and all therapists should be made aware of this and issues related to any autistic features that might be present. Areas of strength in learning in CdLS include visual-spatial memory, fine motor skills, and perceptual organization, indicating that using devices, computers, tactile stimulation, and fine motor activities should be stressed in therapy and education. Augmentative and alternative communication systems have been advancing. They are accepted and approved for classroom use. They should be incorporated as children with CdLS enter school years and beyond.

With various evaluations, approaches, and outcomes, these services are crucial in maximizing outcomes.

If you have any questions regarding your child’s IEP or support services, don’t hesitate to contact the CdLS Foundation’s Family Service Team at [email protected]