Adopting Children with Developmental Disabilities : Part 3

by Child Welfare Information Gateway

(Page 3 of 3)

Acquired Immune Deficiency Syndrome (AIDS)

Acquired Immune Deficiency Syndrome (AIDS) is a disorder that slowly destroys the body's immune system, leaving it incapable of fighting off disease. It is caused by the Human Immunodeficiency Virus (HIV). Both children and adults can contract the virus from blood transfusions. AIDS is not transmitted by casual contact. Because there is no cure yet, AIDS is the most serious disease a child can acquire. Because of new drug treatments, however, children who are HIV positive can live for a number of years.

The HIV virus can be transmitted to the infant from the mother during pregnancy, birth or breastfeeding. About 20 - 25% of infants born to HIV infected mothers run the risk of contracting the virus. Mothers can reduce the risk of infection by: using AZT or other antiviral drugs during the last six months of pregnancy; keeping the delivery time short (the possibility of a cesarean section (C-section) birth); and not breast feeding the baby. When AZT is used during pregnancy, the risk of transmitting HIV drops from 25% to 8%. Recent evidence also suggests that the newborn be given AZT for six weeks after birth. Even if the mother does not take AZT during the pregnancy, the risk of transmission is less if the baby is given AZT within two days of birth. Most babies born to infected mothers test positive for HIV at birth. However, testing positive means the HIV antibodies are found in the blood. Babies get HIV antibodies from their mother even if they are not infected with the virus. If babies are infected with HIV, their own immune systems will start to make antibodies and they will continue to test positive. If they are not infected, the mother's antibodies will gradually disappear and the babies will test negative after about 6 to 12 months (New Mexico AIDS InfoNet). Even though an infant has two or more negative HIV antibody tests, the National Pediatric HIV Resource Center recommends a final HIV antibody test at 24 months of age for the HIV-exposed infant (American Academy of Pediatrics).

Fetal Alcohol Syndrome/Fetal Alcohol Effect

Fetal Alcohol Syndrome (FAS) refers to a set of physical and mental birth defects found in babies whose mothers drank alcohol regularly and heavily during their pregnancy. Fetal Alcohol Effect (FAE) is a milder version of birth defects found in some babies of women who drank less during pregnancy. Some effects of alcohol in pregnancy are small size/low birth weight, brain damage, mental retardation, behavioral problems, facial abnormalities, and heart, lung and kidney defects.

A great deal of neurological development occurs after birth, and if child care, nutrition, and environment are adequate, it is likely that FAS/FAE children can make considerable progress. However, FAS/FAE related neurological damage is not curable. Early intervention, education, training and treatment from family members, community organizations and professionals can increase later success. But, adoptive parents need to be prepared, educated and supported through services before, during, and after the placement in order to overcome the special challenges that these children will face as they age.

Challenges of Adopting a Child with Developmental Disabilities

Those who have adopted children with disabilities feel that they receive more from the experience than they give. Adoptive parents need a special awareness to understand that parenting children with developmental disabilities can require a different kind of lifetime commitment in terms of the amount of continued care and support the child may need as an adult. The challenges don't go away, rather they shift at different developmental ages and stages. Nonetheless, it takes a person with specific abilities and an optimistic attitude to help a child with developmental disabilities reach his or her full potential.

Joan and Bernard McNamara, authors of The Special Child Handbook, are the parents of six children, five of whom have special needs. Of these, four are adopted. The McNamaras suggest that some combination of the following qualities is helpful in parenting a child with developmental disabilities.

You like children and enjoy the challenge of raising a family. If you are not a parent already, you may have had other kinds of exposure to children, through volunteer work, teaching, or your own extended family, that have given you an insight into the daily realities of parenting.

You are a flexible person. You usually deal with frustration with patience and are open to changes in your expectations and lifestyle.

You are able to view people for what they can accomplish, not what they cannot, and you value them according to their own potentials.

You have had contact with people who have disabilities.

The task of finding resources in terms of services and support is added to the challenge of finding out who you are and who the child is. Adoptive parent groups assist with all of these issues. They provide a unique setting to help parents share, understand, and manage the complexities they face. The groups offer educational, social, and support services, sometimes including respite care. They can refer to other information systems in the community, such as specialized organizations like the National Down Syndrome Congress or the United Cerebral Palsy Association. In addition, more adoption agencies and adoptive parent groups are providing post-adoption and counseling services.

Financial assistance is available to most families who adopt children who have disabilities and can include monthly cash payments, medical costs, some specialized services and adoption-related expenses. This assistance is available through State Departments of Public Welfare and is usually arranged before the adoption occurs. More information is available in Child Welfare Information Gateway publication "Subsidized Adoption: A Source of Help for Children With Special Needs and Their Families" or via North American Council on Adoptable Children's NAATRIN program information on adoption subsidy.

What Parents Say

The McNamaras sum up this special type of parenting when they say, "...most parents who have adopted children with special needs agree that the positive growth of their whole family through adoption has been a cherished opportunity and one they would enthusiastically repeat. Adopting children with special needs means opening yourself to a loving challenge and to the gifts they bring".

About the Author

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Formerly the National Clearinghouse on Child Abuse and Neglect Information and the National Adoption Information Clearinghouse, Child Welfare Information Gateway provides access to information and resources to help protect children and strengthen families. A service of the Children's Bureau, Administration for Children and Families, U.S. Department of Health and Human Services.