Glossary of "Special Needs" Terminology
Special needs
SPECIAL NEEDS refer to those characteristics and circumstances (environmental and biological) that make it difficult to find homes for children.
Of all the special needs, age is often the most significant for adoptive families. And finding families for girls over the age of 12, boys over the age of 10, and for African American boys over the age of 2 can be especially challenging.
Most waiting children are between the ages of 6 and 18. Some have developmental, physical, or medical conditions requiring ongoing interventions. Some are siblings needing to be placed together. Others are children of color who would benefit from being placed with families of similar heritage.
For the majority of waiting children, however, their most challenging special needs are those rooted in early childhood experiences.
Most are from families where parental alcohol and drug abuse were prevalent. Many have been physically and sexually hurt. And often, their basic care and their intellectual, emotional, and spiritual needs were unmet.
These are children for whom fear of abandonment is very real. They are children who have difficulty trusting and need time to form genuine attachments.
Some children also have biological special needs associated with hyperactivity, attention deficits, and learning problems. Fetal alcohol syndrome and fetal alcohol effect also are organic conditions.
NWAE confronts the challenges of special needs adoption through a variety of services and programs.
The following are common terms in special needs adoption which appear in the children's stories featured on this web site and other waiting child sites.
Because the children's stories are "summaries" and not intended to provide the detailed information necessary for placement decisions, we encourage prospective adoptive parents to find out as much as possible about various special needs through advocacy organizations, physicians, and schools.
As you read, you will notice that many different "disorders" have similar symptoms. Generally, a specific diagnosis is made by a qualified specialist only when a cluster of several symptoms or characteristics are present over a minimum period of time, such as six months or so.
It is important to know, too, that the degree of severity among children with the same condition varies greatly: the impact on some is barely discernible; others may be moderately affected, and some will be severely affected.
The presence of therapeutic supports and nurturing, permanent homes with parents willing to be their child's best advocate can make significant differences in the lives of children with special needs!
ABUSE
Many children waiting for permanent families have been victims of abuse -- physical, emotional, and/or sexual abuse. Sometimes past abuse is not immediately known and may be revealed later by the child. The impact of past abuse can leave children with emotional and behavioral problems that need to be worked through with the help of knowledgeable professionals. (See alphabetical listing below for information on Sexual Abuse.)
ADOPTION SUBSIDY AND PURCHASE OF SERVICE
Adoption Subsidy (Adoption Support) - The NWAE member states - Oregon, Washington, Idaho and Alaska - all have adoption support programs that subsidize and encourage the adoption of children who have special needs -- needs that require on-going or greater levels of services and financial support.
The needs of the children who are eligible vary (sometimes greatly), as will the resources available within the different states. Each adoption support agreement is based upon a review of an individual child's needs and the ability of the prospective adoptive family and its community to meet those needs.
Adoption support agreements must be developed before finalization and can include: medical coverage, counseling services, non-routine maintenance, and nonrecurring cost reimbursement for eligible children and families.
Purchase of Service (POS) means that a private agency can get reimbursed for some of its costs in placing a child who is POS eligible with a family represented by the agency. This helps to defray the cost of the home study and other services the family has incurred by working with a private adoption agency.
ADVOCACY
Much of the general public sees adoption of older children in fairly simplistic terms -- abused or neglected children are placed with stable, loving parents and love makes everything alright. The complexities of the children's lives and effects of separation and loss are often invisible.
Therefore, it falls to the adoptive parents to work with schools, counselors, physicians, and a variety of others who maybe naive about adoption to make sure their children's needs are understood and being adequately met. The adoptive parent(s) are often their children's best advocates.
ATTACHMENT
Attachment is the ability to form significant emotional connections with other people. Any of the following conditions, especially occurring to a child under 18-months of age, may place a child at risk for developing attachment problems:
- neglect
- frequent moves and/or placements
- abuse (physical, emotional, sexual)
- birth conditions or illnesses that force a separation from primary caretaker
- multiple care takers
Attachment problems vary in severity, and the term Attachment Disorder generally refers to children who have been deprived of early opportunities to make a primary attachment.
Children with attachment problems may be quite charming and outgoing, yet their relationships with others are often superficial. Some signs of problems may be difficulty maintaining appropriate boundaries, an intense need to be in control, displaying indiscriminate affection, difficulty reciprocating, a poorly developed sense of cause and effect, and poor conscience development.
ATTENTION DEFICIT/HYPERACTIVITY DISORDER (ADHD)
ADHD is a condition that affects a child's ability to concentrate. It impacts school performance, since it is difficult for the child to concentrate, "stay on task," and sit quietly. This disorder is thought to be more common in boys than girls. Treatment to manage the symptoms of ADHD may include Ritalin (or other medications) in conjunction with behavioral counseling. ADHD may also be a symptom of other special needs, such as "Drug Exposure In Utero" and "Fetal Alcohol Syndrome/Effect."
AUTISM
Autism affects a child's mental, social, and emotional development. The essential characteristics are a significant lack of responsiveness to others, impairment in development of language and communication skills (both verbal and non-verbal), and unusual responses to the environment (difficulty with any change in routine, attachment to odd objects, such as rubber bands, etc., and repetitive behaviors).
DEVELOPMENTAL DISABILITIES (DD)
This term generally describes any chronic physical or mental condition which inhibits the normal development of a child and requires on-going support services, including special educational and/or therapeutic interventions, life skills, etc. Many individuals with developmental disabilities can live semi-independently as adults if they have good support services.
DRUG EXPOSURE IN UTERO
Cocaine and other drugs used during pregnancy can significantly increase the risk of damage to the developing fetus. Affected infants during the first several weeks of life may appear stiff and rigid, have prolonged and piercing crying episodes, be easily over stimulated, have difficulty feeding and sleeping, and face an increased risk of Sudden Infant Death Syndrome (SIDS).
Some children have delays in their overall development; others have delays in one of more of the following areas -- cognitive, motor, behavioral social, behavioral, emotional, and speech and language. Some children may continue to have behavior and learning difficulties. All have an increased risk for ADHD.
EMOTIONAL DISABILITIES
Because of their environmental history and/or biological background, including genetics, some children display multiple emotional difficulties: mood swings; tantrums; impulsiveness and difficulty considering the consequences of their actions; a lack of respect for authority; problems in school; the inability to handle change easily; and interpersonal problems with other children.
FETAL ALCOHOL EFFECT/SYNDROME (FAE/FAS)
ALCOHOL RELATED NEURODEVELOPMENT DISORDER (ARND)
FETAL ALCOHOL SPECTRUM DISORDER (FASD)
Birth mothers who drink alcohol during their pregnancies expose their unborn children to FAE/ARND/FASD -- a form of organic brain damage.
Before a qualified specialist can diagnose FAE, ARND or FASD, a cluster of several symptoms and characteristics must be present, including knowledge of the birth mother's history of drinking alcohol during pregnancy.
The primary characteristic that differentiates FAE from ARND is the presence of physical anomalies: most frequently distortions in the development of head and face.
Judith Kleinfeld (University of Alaska at Fairbanks) uses the analogy of a computer to talk about FAE/ARND/FASD. "Bathing the fetal brain in alcohol," she writes, "is a lot like spilling a drink on a computer -- the electrical circuitry gets scrambled in unpredictable ways. And much of the behavior that is so difficult can be understood as problems the brain is having in processing information. In essence, the child has organic brain damage that makes it difficult to take in information, distinguish signals from background noise, organize information in an integrated or sequential fashion, and respond to signals with the right routines."
The most challenging characteristic associated with FAE/ARND/FASD is the inability children have in associating cause and effect, and hence learning from experience. This inhibits their ability to use good judgment purposely. Other common characteristics are difficulty handling changes in their daily routines (even fun changes can be stressful without adequate preparation in advance); impulsiveness; ADHD and other learning impairments; birth defects, and mental retardation. Although FAE/ARND/FASD is a major cause of mental retardation, there are many FAE/ARND/FASD children who have average and above average intelligence.
LEARNING DISABILITIES (LD)
Many children with learning disabilities are of average or above average intelligence, but they have difficulty in sorting and storing information. Some children have visual perception problems and learn best by having directions told specifically to them. Others have auditory perception problems and learn best by seeing things, rather than having things told to them out loud. A classroom designated for children with LD can help them reach their educational potential.
LEGALLY FREE AND LEGAL RISK
"Legally free" means that the parental rights of a child's birth parents have been terminated in a court of law (sometimes parental rights are voluntarily relinquished by birthparents) and the child is now legally free to be adopted.
"Legal risk" means that the termination of parental rights is in process, and the child is not yet legally free. Most of the waiting children in this publication are legally free; for the few who are legal risk, there is a signed "consent to search" for an adoptive family.
NEGLECT
It is only quite recently that many childhood specialists have come to understand neglect, especially in early childhood, as among the most devastating experiences a child can suffer. More so than abuse, neglect erodes the very core issues of a child's emotional, cognitive, social, behavioral, spiritual, and/or physical well-being and development. With it's components of indifference and deprivation it undermines the primary needs and care which are essential to the healthy development of a child.
OPPOSITIONAL DISORDER
Children (and adults, as well!) all exhibit some oppositional behaviors at one time or another. And some developmental stages are especially known for oppositional behaviors, such as the" terrible twos" and adolescence.
But for Oppositional Disorder to be diagnosed, there has to be a cluster of at least five of the following behaviors present over at least a six-month period of time. The behaviors include: temper tantrums, arguing, opposing authority, purposely pestering and annoying others; blaming others (for his/her mistakes); being especially touchy; being easily annoyed; being angry and resentful; being spiteful and vindictive; and swearing and using obscene language.
SEXUAL ABUSE
Sexual abuse of children is an age-old transgression, yet it has been just during the last decade or so that the prevalence of abuse, the breadth and range of emotional trauma and behavioral problems, and the long-term residual effects have become known.
National statistics cite that one out of every three girls and one out of every five boys are exposed to sexual abuse before age eighteen. Those are frightening figures, but in the field of special needs adoption, the numbers are even more devastating. It is estimated that 85-95 percent of children were sexually abused or compromised prior to adoption.
There are many ways children who have been sexually abused may present challenges in adoptive families. They may be fearful of adults. They may act out towards others aggressively or sexually. They may misinterpret the innocent behaviors of others as sexual or violent. They may behave like much younger or much older children. They may lack a sense of safe boundaries and be extremely vulnerable to being victimized again. They may exhibit a limited or skewed sense of conscience. And they may be indiscriminate and superficial in relationships. (Adoption and the Sexually Abused Child, by Joan and Bernard McNamara).
Essential tasks for adoptive parents are to provide structure that promotes stability and safety and acceptance, such as well-defined family roles and boundaries; and to have counseling resources available.
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