Carlos was already an independent 9-year-old
when his prospective adoptive parents saw
him at an adoption picnic. This boy with cerebral
palsy said, "No, no, I can do it," when they
offered to pick up his crutches which had
dropped while he was playing a game. Adopted
by them shortly thereafter, Carlos has shown
rapid improvement emotionally and physically
in the year he's been with his new family.
At first, he had to wear his braces 5 to 7
days a week. He is now down to 3 days a week.
Initially shy and oversensitive, Carlos delights
in playing with his siblings. He encourages
them and plays big brother when they argue
with each other. His mother says lovingly,
"He's a precious jewel. I wouldn't give him
up for anything."
By the age of 10, Christy had experienced
13 foster placements. She was microcephalic,
had a polycystic kidney, and was born with
extra toes on each foot. Educably mentally
retarded, Christy also had emotional problems
as a result of her physical condition and
unstable home life. Now 17, Christy is part
of a large family of "homemade" and adopted
children. In the 7 years since she was adopted,
she has improved dramatically. She is in eleventh
grade in a special education program within
a mainstream vocational/technical high school
food-services program. Her parents consider
the success of the adoption due to Christy's
enormous desire to be part of a family.
Joseph became sick with kidney failure when
he was 6. He also had a malfunctioning heart
and spleen and liver problems. All of these
ailments made him extremely weak. His parents
relinquished him for adoption at that time
because they couldn't handle his condition.
After two adoptions failed, Joseph was placed
in an orphanage.
Ray and Chris were childless. Ray, too, suffered
from kidney failure. He had had a transplant
and was on dialysis. Chris was head nurse
of a kidney unit. They heard about Joseph,
then age 10, and adopted him. Three years
later, when he was 13, Joseph had a successful
kidney transplant. His physical condition
improved greatly, and he was no longer delayed
in school. His father believes the success
of the adoption reflects more than father
and son sharing the same physical condition.
He considers the crucial factor Joseph's immense
desire to have a family.
After numerous foster homes, children's homes,
and unsuccessful placements, Keith came to
his new family 6 years ago at age 15. This
boy with mental retardation could not read,
write, or speak in complete sentences. The
fear of never remaining long in any one place
thwarted his development. His new parents
kept telling him he would stay, even when
he got into trouble, and hugged him and reinforced
him constantly. Such stability, they believe,
turned Keith's life around. When his adoption
papers came through he said, "Finally, I'm
going to be a person."
At 18, Keith received a certificate of completion
in a special education high school. At 19,
through the assistance of an agency that places
persons with developmental disabilities, he
obtained a full-time regular job as a lawn
maintenance worker. Now, at 21, he reads,
writes, and talks in complete sentences.
Mark, 4, is autistic. He was adopted 2 years
ago by a family who realized he would ultimately
have to be institutionalized. They wanted
him to receive the love and care of a family
as long as he was manageable.
All of these children have developmental
disabilities. But they are lucky. They are
part of families and are reaping the benefits
that come from stability and security.
[back to top]
What Is a Developmental
Disability?
According to the Federal
Developmental Disabilities Act of 1984,
P.L. 98-527, Sec. 102(7), a developmental
disability is a severe, chronic disability
which:
- is attributable to a mental or physical
impairment or combination of mental and
physical impairments;
- is manifested before age 22;
- is likely to continue indefinitely;
- results in substantial functional limitations
in three or more of the following areas
of major life activity:
- self-care
- receptive and expressive language
- learning
- mobility
- self-direction
- capacity for independent living
- economic sufficiency
reflects the person's need for a combination
and sequence of special, interdisciplinary,
or generic care, treatment, or other services
which are of lifelong or extended duration
and are individually planned and coordinated.
Within each disability there is a range in
conditions from mild to severe. Several handicapping
conditions are most associated with developmental
disabilities—two of which, mental retardation
and cerebral palsy, affect the most children
with the greatest severity.
[back to top]
Developmental Disabilities
and Adoption
About half of the 50,000 children available
for adoption in this country have developmental
disabilities. All of them can benefit from
the love and stability that come from belonging
to permanent families. And families who have
adopted such children talk about the "incredible
joy" the children bring to them. They describe
them as having enriched their families in
ways they could never have imagined.
[back to top]
Types of Disabilities
Mental Retardation
Mental retardation is impaired or incomplete
mental development. Usually a lifelong condition,
occurring at or near birth, it may be treated
through educational techniques, but is not
cured. More than 200 specific causes of mental
retardation have been identified; together
they account for less than half of all cases,
underscoring the need for greater knowledge
in this field.
There are four classes of mental retardation:
mild, moderate, severe, and profound. People
who have mild mental retardation and function
in the educable range can achieve competitive
employment on a semiskilled or unskilled level
with minimal support. They may need guidance
in crisis situations but can participate in
the mainstream of community life with jobs,
independent living, cars and their own families.
People who have moderate mental retardation
and function in the trainable range may achieve
self-maintenance in unskilled or semiskilled
work under sheltered conditions. They need
supervision and guidance when under mild social
or economic stress and must live in group
homes or family situations.
People who have severe mental retardation
may contribute partially to self-maintenance
under complete supervision. They can develop
self-protection skills to a minimally useful
level in a controlled environment.
People who have profound mental retardation
have some motor and speech development. They
may achieve limited self-care and need nursing
care.
Down Syndrome
Down syndrome is a form of mental retardation
in which the child is born with an extra chromosome.
It occurs in approximately 1 of every 800
births. There are more than 50 characteristics
that identify a child with Down syndrome—the
most prominent being slanted eyes, short stature,
and poor muscle tone. No child has all 50
characteristics, and, contrary to popular
thinking, very few have severe mental retardation.
Children with Down syndrome exhibit a wide
range of mental development with most in the
mildly to moderately delayed category. They
commonly have respiratory infections and congenital
heart disease. Fortunately, many heart defects
are treatable now; some even can be corrected
without surgery.
Current research with computers shows that
children with Down syndrome understand more
than they verbalize. This may mean that there
is a vast, untapped potential that can be
explored and nurtured, since it is known that
learning in these children continues through
adolescence. In addition, there is evidence
that as more children with Down syndrome are
raised in families where they receive individual
attention, they will accomplish more than
once thought possible.
Cerebral Palsy
A catch-all term, cerebral palsy refers to
a group of conditions resulting from brain
damage before, during, or shortly after birth.
It is not hereditary and is often attributed
to a lack of oxygen to the brain. The most
obvious symptom is an inability to coordinate
or control muscles; children with cerebral
palsy lack muscle control in one or more parts
of their bodies. Children whose conditions
are more serious may experience other symptoms,
such as convulsive disorders, limited general
intelligence, and problems in thinking, expressing
thoughts, speaking, hearing, and seeing. Most
children who have serious limb involvement
attend orthopedic schools (part of the public
school system) where occupational and physical
therapy are part of the curriculum.
While cerebral palsy is a permanent disability
that cannot be cured, many people with the
condition experience no limitation to their
abilities to achieve. Many have risen high
in the fields of medicine, law, education,
and writing. Some people with cerebral palsy
have completed the New York Marathon race.
These are cases in which mental function has
not been impaired.
Autism
Autism is a severe disturbance of mental
and emotional development. Its cause is still
unclear, although the most widely accepted
explanation is a combination of genetic factors
and damage affecting the part of the brain
that processes and interprets information.
Autistic youngsters are extremely withdrawn
and they show little or no interest in other
people or in the normal activities of childhood.
They are often described as being "in a shell"
or "living in a world all their own." Specialists
generally regard their behavior as a device
for avoiding reality. As more varied approaches
to intelligence testing are tried, results
indicate that most autistic children function
at a severely retarded level.
While autism is considered a life-long condition,
good educational training and programs reduce
the severity of its symptoms. In the cases
where retardation is accompanied by normal
or superior skills (as in arithmetic, music,
or memory), these skills can be expanded.
Epilepsy
There are many definitions of epilepsy. Generally,
the term, which comes from the Greek word
for "seizures", is applied to a number of
disorders of the nervous system centered in
the brain. Seizures of one kind or another
are the primary characteristics or symptoms
of all forms of epilepsy. Not all seizures,
however, are epileptic in nature. Seizures
are characterized by convulsions of the body's
muscles, partial or total loss of consciousness,
mental confusion, or disturbances of bodily
functions which are usually controlled automatically
by the brain and nervous system.
There is no known cause of epilepsy. Scientists
generally agree that epilepsy can result from
defects in the brain; brain injury before,
during, or after birth; head wounds, chemical
imbalance, poor nutrition, childhood fevers,
some infectious diseases, brain tumors, and
some poisons. But sometimes the cause cannot
be found.
Strictly speaking, epilepsy is not curable,
but it is highly treatable. It can be controlled
in varying degrees by careful use of medicines
(up to 50 percent of those affected can achieve
complete control, and 30 percent partial control
of their seizures).
In most cases, people with epilepsy have
the same general range of intelligence as
other people. Only occasionally do uncontrolled
seizures during childhood affect mental capacity.
A brain injury or disorder of the central
nervous system, which caused epilepsy, may
also cause other conditions that affect mental
development, for example, mental retardation
or cerebral palsy.
Spina Bifida
Spina bifida is a birth defect involving
the nervous system. It occurs when the vertebral
bony units that cover and protect the spinal
cord do not develop fully. The spinal cord
fails to form a tube and send out enough nerve
fibers to the muscles below. As a result,
the lower extremities and the lower half of
the tube are affected in various ways. A child
may not be able to move his legs, may not
feel heat, touch, or pain, and may not be
able to achieve bowel and bladder control.
Many children, however, are able to walk
unaided. Others require braces and crutches;
still others are restricted to wheelchairs.
The bowel and bladder function, but are commonly
susceptible to infection.
Frequently, a problem called hydrocephalus
accompanies spina bifida, which is an abnormally
rapid and excessive enlargement of the head
caused by fluid backup. Immediate treatment
calls for insertion of a shunt or tube to
drain fluid off the brain. Once a shunt has
been properly inserted, the hydrocephalus
seldom causes further problems. Shunting has
also proven effective in preventing hydrocephalus.
This procedure is critical—not only for
cosmetic purposes, but also to prevent brain
damage which often is a result of the increased
pressure. Early damage can result in mild
or even severe retardation. Many children
with spina bifida are of average or higher
intelligence.
AIDS
AIDS (Acquired Immune Deficiency Syndrome)
is a disorder that slowly destroys the body's
immune system, leaving it incapable of fighting
off disease. It is caused by the HIV virus.
Most affected children contracted the HIV
virus from their mothers in utero. 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, children who
are HIV positive can live for a number of
years. However, with the onset of full-blown
AIDS, the children's life expectancy diminishes
to less than 2 years.
[back to top]
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. 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
handicapping conditions.
A
Reader's Guide for Parents of Children With
Mental, Physical or Emotional Disabilities
states that "Raising a child who is handicapped
requires more knowledge and understanding—of
the child, of oneself, and of others—than
does raising a child who is not handicapped."
Herein lie many of the challenges and rewards
of this special kind of parenting.
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 Down
Syndrome Association or the National
Cerebral Palsy Foundation. In addition,
more adoption agencies are offering postadoption
services and providing counseling services.
Financial assistance is available to families
who adopt most children who have disabilities
and can include monthly cash payments, medical
costs and adoption-related expenses. This
assistance is available through State Departments
of Public Welfare and is arranged before the
adoption occurs. (More information is available
in the National Adoption Information Clearinghouse
publication "Subsidized
Adoption: A Source of Help for Children With
Special Needs and Their Families").
What Parents Say
Florence and Sam have adopted three children
with Down syndrome and say that their lives
are fuller and more joyous as a result. "When
a child without a disability accomplishes
something like making her first Valentine
or tying his shoe laces for the first time,
it is a wonderful feeling. But when our children
do these things, we are ecstatic. We know
how hard they worked to get there, and we
are so thrilled we cry and laugh and hug them
and celebrate all at the same time."
Debbie, whose 9-year-old daughter is mentally
retarded, says, "When Jenny came to us, she
was so shy and so withdrawn. Now she laughs
and plays with our other children. She even
reads—an accomplishment we did not anticipate."
Another parent who adopted a severely disabled
child speaks to an experience that is not
uncommon. "After we adopted Melissa, we were
so thrilled with her progress and she brought
us so much happiness that we thought about
it and decided to adopt another child. The
kids get along so well—our birth kids
and our adopted kids. They really relate and
bring each other a lot of happiness, and they
bring the whole family a lot of fulfillment."
Indeed, Jules Abrams, a nationally recognized
child psychologist, says that even children
with serious limitations often make remarkable
gains when they feel the love and stability
of a permanent family.
The McNamaras sum up this special type of
parenting accurately 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."
This article was written by Joan Leof
of the National Adoption Center, 1989; revised
in June 1994.
Internet links added by Adoptions.com
2000 - 2003
[back to top]
Listed below are some resources and information
sources for families with children with developmental
disabilities.
1. National Associations (some have monthly
newsletters and state or local branches)
The Alliance of Genetic Support Groups
4301 Connecticut Avenue, NW
Suite 404
Washington, DC 20008-2304
(202) 966-5557
Helpline: (800) 336-GENE (4363)
Fax (202) 966-8553
E-mail: info@geneticalliance.org
Website: http://www.geneticalliance.org
Cystic
Fibrosis Foundation
6931 Arlington Road
Bethesda, MD 20814
(301) 951-4422
Epilepsy
Foundation of America
4351 Garden City Drive
Landover, MD 20785
(301) 459-3700
March
of Dimes
1275 Mamaroneck Avenue
White Plains, NY 10605
(914) 428-7100
Muscular
Dystrophy Association
3561 East Sunrise Drive
Tucson, AZ 85718
(602) 529-2000
The
ARC (formerly Association for Retarded
Citizens)
500 East Border Street, S-300
Arlington, TX 76010
(817) 261-6003
(817) 277-0553 (TT)
National
Down Syndrome Congress
1605 Chantilly Drive, Ste. 250
Atlanta, GA 30324
(800) 232-NDSC (232-6372) or (404) 633-1555
National Association for Family Addiction
Research and Education
200 N. Michigan Ave., Ste. 300
Chicago, IL 60601
(312) 541-1272
National
Easter Seal Society
70 East Lake Street
Chicago, IL 60601
(312) 726-6200
NOTE (by Adoptions.com):
This organization does not seem to exist any
more:
National Society for Autistic Children
1234 Massachusetts Avenue, N.W., Suite 1017
Washington, DC 20005-4599
(202) 783-0125
Instead, try:
Autism
Society of America (ASA)
7910 Woodmont Avenue, Suite 650
Bethesda, MD 20814
(800)-3AUTISM
Spina
Bifida Association
1770 Rockville Pike, Suite 540
Rockville, MD 20852
(800) 621-3141
United
Cerebral Palsy Association
7 Penn Plaza, Suite 804
New York, NY 10001
(212) 268-6655
2. The
Exceptional Parent (a monthly magazine
for parents of disabled children)
209 Harvard Street, Suite 303
Brookline, MA 02146-5005
(617) 730-5800
3. Local Special Education Centers
These may be identified through the local
school system.
4. State Resources
Every State has both a Developmental Disability
Planning Council and a Protection and Advocacy
Agency for Developmental Disabilities.
These organizations make sure that developmentally
disabled individuals receive the services
to which they are entitled. Call the State
Government information number in your State
capital for referral to the appropriate agency
in your area.
5. North
American Council on Adoptable Children
(NACAC)
NACAC is a coalition of Canadian and U.S.
adoption groups that advocates for all children
who need permanent families. NACAC can provide
information and support to families, children,
and agencies. Its address is 970 Raymond Ave.,
Ste. 106, St. Paul, MN 55114-1149, (612) 644-3036.
6. Clearinghouses and Government Information
Sources
Department of Health and Human Services
Administration for Children and Families
200 Independence Avenue, S.W.— HHS Building
Room 336D
Washington, DC 20201
ATTN: Developmental Disabilities
(202) 245-1961
Directory of National Information Sources
on Handicapping Conditions and Related Services.
U.S. Department of Education, Washington,
DC, 1986. This publication is available from
Harold Russell Associates, 8 Winchester Place,
Suite 304, Winchester, MA 01890, (617) 729-9090.
ERIC Clearinghouse on the Handicapped and
Gifted Council for Exceptional Children
1920 Association Drive
Reston, VA 22091
(703) 620-3660
National
Adoption Information Clearinghouse
330 C Street, SW
Washington, D.C. 20447
(703) 352-3488 or 1 (888) 251-0075
National
Information Center for Children and Youth
with Disabilities (NICHCY)
P.O. Box 1492
Washington, DC 20013
(703) 893-8614 (TT)
(202) 416-0300
National
Rehabilitation Information Center
1010 Wayne Avenue, Suite 800
Silver Spring, MD 20910
800/346-2742 (V)
301/562-2400 (V)
301/495-5626 (TT)
National
Resource Center for Special Needs Adoption
16250 Northland Drive, Suite 120
Southfield, MI 48075
(810) 443-7080
7. Sports Organizations by and for Disabled
Persons
American
Wheelchair Bowling Association
6264 North Andrews Avenue
Ft. Lauderdale, FL 33309
Phone/Fax: (954) 491-2886
International
Special Olympics
1350 New York Avenue, N.W.
Washington, DC 20005
(202) 628-3630
8. Adoption Exchanges and Support Networks
for Children with Developmental Disabilities
Children
with AIDS Project of America
P.O. Box 23778
Tempe AZ 85282-3778
(602) 973-4319
Children Awaiting Parents, Inc.
700 Exchange Street
Rochester, NY 14608
(716) 232-5110
Deaf
Adoption News Service
Attn: Jamie Burke
7981 Northumberland Road
Springfield, VA 22153-2934
Fax (703) 644-1827
E-mail: sberke@netcom.com
A K.I.D.S. (Knowledge and Information on
Down Syndrome) Exchange
56 Midchester Avenue
White Plains, NY 10606
(914) 428-1236
National Adoption Exchange
1500 Walnut Street, Suite 701
Philadelphia, PA 19102
(215) 735-9988
National
Federation of the Blind
Network on Adoption and Blindness
1800 Johnson Street
Baltimore, MD 21230
(410) 659-9314
Short Stature Foundation and Information
Center
17200 Jamboree Road, Suite J
Irvine, CA 92714-5828
(714) 474-4554
Bangsund, Rebecca. "Advocating in the Schools
for a Child Affected by Fetal Alcohol Syndrome/Effect,"
The Roundtable, vol. 6 no. 2, 1992,
pp. 3- 4.
Brown, Sara L. and Brown, Don L., Illustrator.
Profile: Permanency Planning Assessment
for Children With Developmental Disabilities
and Special Health Needs. Southfield,
MI: Spaulding for Children, National Resource
Center for Special Needs Adoption, 1989.
Callanan, Charles R. Since
Owen: A Parent-to-Parent Guide for Care of
the Disabled Child. Baltimore, MD:
Johns Hopkins University Press, 1990.
Chasnoff, Ira J., M.D. "Guidelines for Adopting
Drug-Exposed Infants and Children." Chicago,
IL: National Association for Perinatal Addiction
Research and Education, 1992.
Dorris, Michael. The
Broken Cord. New York: Harper and
Row, 1989.
Glidden, Lorraine Masters, Editor. Formed
Families: Adoption of Children with Handicaps.
New York: Haworth Press, 1990.
Groze, Victor et al. "Families Adopting Children
With or At-Risk of HIV Infection," Child
and Adolescent Social Work Journal, vol.
9 no. 5, Oct 1992, pp. 409-426.
Rosenthal, James A. and Groze, Victor K.
Special-Needs
Adoption: A Study of Intact Families.
New York: Praeger, 1992.
Rosenthal, James A. et al. "Adoption Outcomes
for Children With Handicaps," Child Welfare,
vol. 70 no. 6, Nov-Dec 1991, pp. 623-636.
Schaffer, Judith. "Cocaine Use During Pregnancy:
Its Effects on Infant Development and Implications
for Adoptive Parents." Ithaca, NY: New York
State Citizens Coalition for Children, 1990.
Selfridge, Gail et al. "For the Love of Toni
and Joanne, Tenci, Kristi, Wayne, Robie and
Ricky," Children Today, vol. 20 no.
2, 1991, pp. 10-12.
Taylor, Steven J. et al, Editors. Life
in the Community: Case Studies of Organizations
Supporting People with Disabilities. Baltimore,
MD: Paul H. Brookes, 1991.
Welch, Sheila Kelly. Don't
Call Me Marda. Wayne, PA: Our Child
Press, 1990.
Wimmer, Jane S. and Richardson, Sharon. "Adoption
of Children with Developmental Disabilities,"
Child Welfare, vol. 69 no. 6, Nov-Dec
1990, pp. 563-569.
For more information, contact the National
Adoption Information Clearinghouse at naic@calib.com.
