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Families Moving Forward project
A research program to help determine and address the needs of children with FASD, their parents, and the school and community professionals who work with them. Families Moving Forward believes that the parent’s viewpoint is essential to creating appropriate interventions. The project has systematically gathered data from families to develop a new, research-based, behavioral intervention approach that will better educate and support caregivers of children with FASD. This new model is still being tested against the current standard of care. The goal is to better equip caregivers to answer the question, “Now what do I do?” The project is still in process and is funded by the Centers for Disease Control.

Fetal Alcohol Effects (FAE)
A general term that refers to alcohol-related birth defects (ARBD) and alcohol-related neurological defects (ARND). The term “FAE” is being dropped in favor of the more diagnostically specific terms.

Fetal Alcohol Spectrum Disorders (FASD)
An umbrella term describing the range of conditions and disabilities that affect a child who is exposed to alcohol while in the womb.

Fetal Alcohol Syndrome (FAS)
A diagnostic term for people who have 1) a characteristic pattern of facial anomalies, plus 2) evidence of growth retardation, plus 3) evidence of central nervous system neurodevelopmental abnormalities. The fourth criterion, maternal alcohol exposure, may or may not be able to be confirmed.

Failure to thrive
A condition in which infants and children not only fail to gain weight, but also may lose it (despite good nutrition). Young children with FASD are typically in the 10th percentile or lower in height, weight, and/or head circumference.

Genetic counselor
A person who specializes in educating and supporting patients, families, or prospective parents on inherited diseases to which they or their offspring may be susceptible.

A physician who specializes in the study of heredity, genes, their variations, and the genetic contribution to health or illness. A geneticist can differentiate between FASD and genetic conditions that have similar manifestations.

The time from conception to birth.

Growth retardation
A delay or inability to physically grow in a way that is considered normal for that age. Children with FASD exhibit one or more forms of growth retardation, such as low birth weight, weight loss over time (not related to malnutrition), and/or low weight in proportion to height. Growth retardation is a diagnostic indicator of FASD.

An area deep in the brain that has critical responsibility for translating information into new memories. It also transfers short-term memories to more “permanent” memories. The hippocampus may be smaller than usual in people with FASD. This may be one reason why people with FASD are impaired in learning from one situation and applying it to another. To see a picture of the parts of the brain that are susceptible to prenatal alcohol damage, click here.

A general term that describes constant overactivity, distractibility, impulsiveness, inability to concentrate, and aggressiveness. If hyperactivity becomes serious and harmful to the person and others, it may be classified as a medical disorder.

A general term for being unusually excitable, easily over-excited, or easily over-stimulated.

Under-development of a tissue, organ or other body structure. Many body structures may be under-developed in people with FASD. In the brain, the cerebellum, corpus callosum, hippocampus, and basal ganglia are all decreased in size in people who were exposed to alcohol prenatally. To see a picture of the parts of the brain that are most susceptible to prenatal alcohol damage, click here.

International Classification of Diseases, 9th Revision, Clinical Modification. Guidelines for coding and reporting diseases-established by two departments within the U.S. Federal Government's Department of Health and Human Services.

IDEA 2004
Individuals with Disabilities Education Act.

Individuals with Disabilities Education Act
A federal law that guarantees all children with disabilities access to a free and appropriate public education in the “least restrictive” environment possible. The law was enacted in 1975 and was most recently amended in December 2004. It updates the definition of eligibility for special education services and spells out what should be included in an IEP. It also strengthens the role that parents have in their children’s education. Part C provides early intervention for children up through age 3. This is important because it allows a “presumptive diagnosis” to identify “at risk” children without meeting more rigid eligibility criteria.

Individualized Education Plan (IEP)
An Individualized Education Plan is a roadmap for ensuring that a child with special needs gets the assistance needed for his or her education. An IEP is usually developed after a team of professionals confirms that the special needs require interventions beyond the regular classroom experience. Parents are a critical part of this team. The IEP should identify the support services needed, as well as specify measurable educational goals. IEPs are reviewed annually but can be changed any time as needed. An IEP is called a “service plan” in private schools.

In utero
Within the uterus.

IQ test
A general term for several kinds of tests for general intelligence. An IQ of 70 or lower indicates some form of mental retardation, which can qualify the person for various disability benefits. Children with FASD may have a normal IQ; but their learning, reasoning and problem-solving abilities are below normal. Additional assessments that target those skills are needed to get a full picture of the person’s abilities.

Limbic system
Includes numerous brain structures that regulate moods, emotions, motivation, pain/pleasure/fear, and emotional associations with memory. The limbic system influences memory formation by integrating emotional states (that person made me laugh) with stored memories of physical sensations (I met her at a party; her hair was brown). Damage to any portion of the system causes problems in children with FASD. For example, damage to the amygdala, which controls fear, is part of the reason children affected by FASD often seem to be fearless. The limbic system also regulates the release of many hormones. This can be impaired in children with FASD. As a result, they don’t have normal “stress responses” or the “fight-or-flight” feeling because release of those hormones does not happen as it does in other people.

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