Invisible Disabilities: Advocating for the Unseen

March 13, 2017

Parents of preemies often remark on how one can never quite seem to leave the NICU behind. Sometimes they are referring to the emotional effects of a traumatic birth and NICU stay. Sometimes they are referring to the aftermath of prematurity itself: developmental delays, physical delays, and other “invisible disabilities.”

school, learning disability, ADHD, late term preemie,When a baby is born prematurely, usually before 37 weeks of pregnancy, the organ systems are not yet fully developed enough to function independently—the earlier the birth, the more severely affected the organ system.

Babies born at less than 28 weeks of pregnancy are referred to as “very premature” or “extremely premature;” babies born between 28 and 31 weeks are considered to be “premature,” and babies born between 32 and 36 weeks are referred to as “late preterm.” Although they have the lowest risk of severe medical problems, the babies at highest risk of having an invisible disability are those that are born late preterm.

What is an invisible disability?

An “invisible disability” refers to a condition that is not noticeable simply by looking at a person. Late preterm infants generally fair well medically and often have normal development in the first year of life. However, many of these babies present delays and learning difficulties as they grow.

Common invisible disabilities in later term preemies

The frontal lobe of the brain, which is concerned with behavior, self-control, personality, and problem-solving skills, is one of the last regions of the brain to develop and mature during pregnancy. Since these late term preemies do well medically, many adults do not recognize the developmental difficulties they face.

A late term preemie may present speech delays by age two, which places them at risk of having reading problems in kindergarten In fact, most children who were born as late preterm infants do not show signs of developmental difficulties until kindergarten but are more likely to have learning problems with reading, math, and writing skills when compared to children who were born full term.

Late term preemies are also at a higher risk of having problems paying attention and with hyperactivity, poor impulse control and poor organization skills. They are also more at risk for developing attention deficit hyperactivity disorder and having problems with executive functioning than their term counterparts.

How to help children with invisible disabilities

Children who have problems succeeding in school need help. It is important for parents, caregivers, and educators to be cognizant of potential learning and behavior problems children can have. If a child is showing signs of these problems in kindergarten (e.g., difficulty learning alphabet sounds and rhyming; trouble understanding and following teacher’s instructions; difficulty completing tasks in class), the child should be evaluated for possible learning problems, speech and language problems, or other developmental disabilities.

Should parents hold their child back a year so they can “catch up?” Absolutely not. Grade repetition increases risk for school failure and school drop-out. Instead, the child should undergo a formal special evaluation and receive the educational interventions needed to help the child succeed. Children need a caring adult to advocate for them in order for them to live as productive a life as they can.

About Dr. Spinks-Franklin

Dr. Adiaha Spinks-Franklin is a board certified developmental-behavioral pediatrician at Texas Children’s Hospital in Houston, TX. Dr. Franklin is a renowned expert in childhood development and the behavioral problems that children can face. Her research interests include the cultural aspect of child development.