Children diagnosed with disabilities or medical needs require unique care. This care must go beyond the support typically provided during daily routines.
Due to these special and sometimes complex needs, it is critical that all caregivers understand how to best support the development of these children while still offering essential relationships that are positive, attentive and caring.
Below you can find important background information on some of the more common disabilities found among children who are adopted.
Cleft lip and palate are birth defects that affect the upper lip and the roof of the mouth.
A cleft lip may be a small split in the lip or a complete split in the lip that goes all the way to the base of the nose. The cleft can be on one or both sides of the lip.
A cleft palate causes an opening in the roof of the mouth (palate). It can be on one or both sides of the roof of the mouth. It may go the full length of the palate.
Cleft lip and palate can occur together or separately.
<strong>Causes</strong>
There are many potential causes of cleft lip and palate such as:
Family history of cleft lip or palate
Exposure to viruses, toxic substances and environmental pollutants
Maternal nutritional imbalances
Association with several syndromes
<strong><strong>Complications</strong> </strong>
Cleft lip and palate provide no connection or cognitive delays but can complicate talking, feeding and eating. If you are caring for a child with cleft lip or palate, watch for the following possible problems:
Failure to gain weight
Poor growth
Feeding problems due to malformation of the face, delayed oral-motor development or behavioral issues
Flow of milk through the nose during feeding
Dental problems
Repeated ear infections that may cause hearing loss
Speech difficulties
<strong><strong><strong>Challenges Before Surgery</strong> </strong></strong>
Cleft lip and palate provide no connection or cognitive delays but can complicate talking, feeding and eating. If you are caring for a child with cleft lip or palate, watch for the following possible problems:
Cleft lip and palate will likely affect bottle-feeding and may affect breastfeeding, although infants with a cleft lip or palate can often still successfully breastfeed.
An opening in the lip or palate interferes with the suction or vacuum needed to pull milk from the nipple.
Milk may come out of the infant’s nose during a feeding due to the opening in the lip or palate.
The infant may swallow too much air while feeding, leading to discomfort and inadequate intake.
Longer feedings can make an infant very tired and cause them to burn too many calories.
Though a child with a cleft has normal sucking and swallowing reflexes, they may need a special bottle to allow milk to flow without suction.
<strong><strong><strong>Challenges After Surgery</strong> </strong></strong>
A cleft lip or palate can be successfully treated with surgery, especially if corrected soon after birth or in early childhood. Ideally, children with a cleft lip and/or palate should be followed from birth through adolescence by a team that designs an individualized treatment plan.
If you are caring for a child with a cleft lip and/or palate, discuss a treatment plan with your pediatrician and director. The treatment plan should be based on the needs of the child and should include:
Surgery to correct malformation
Speech and occupational therapy to address feeding issues for the infant and child, and speech issues for the child
Adaptive equipment, such as specialized bottles, spoons and cups that can improve feeding
A dental checkup
An ear and hearing checkup for children with cleft palate
<strong><strong>Care and Treatment </strong></strong>
After the palate is surgically repaired, any problems with mealtimes should be resolved. Sometimes, a small hole may remain or develop in the roof of the mouth at the site of the original cleft. Food or liquid may come through or get lodged in the hole. Most children adapt and clear any liquid or food particles on their own. If leaking or reflux through a fistula is frequent, discuss the concern with the child’s doctor.
Cerebral Palsy
Cerebral palsy (CP) is a disorder that impairs body movement, muscle tone and coordination. It is caused by brain damage before or during birth, or in the first 3 to 5 years of life.
Problems arise because of abnormalities in parts of the brain that control muscle movements, not the muscles themselves. CP can affect the body in different ways (right or left side, arms or legs or both), depending on the severity of the disease. The brain damage that leads to CP can also lead to other health issues, including mental delays, seizures, vision, hearing and speech problems, and learning disabilities. The condition does not worsen over time. There is no cure for CP, but treatment, therapy and special equipment can greatly improve a child’s capabilities. The earlier treatment begins, the better chance a child has of overcoming developmental disabilities and learning new ways to accomplish daily tasks.
<strong>Causes</strong>
During Pregnancy
Genetic conditions
Limited blood or oxygen supply to the brain before or during birth
Infections
Bleeding in the brain
Severe jaundice
Premature birth, very low birth weight, multiple births (twins, triplets)
Maternal smoking, alcohol and/or drug use
During Infancy and Early Childhood
A small number of children might have brain damage that leads to CP during infancy or early childhood. Causes include:
Brain infections (bacterial meningitis)
Malnutrition
Car accident
A fall
Child abuse
Lead poisoning
<strong><strong>Signs</strong></strong>
Cerebral palsy is usually detected before a child turns 3 years old. Signs may include:
Inability to control muscles in the body; arms and legs might move suddenly and involuntarily
Problems with balance and coordination
Stiff or tight muscles and exaggerated reflexes
Walking with one foot or leg dragging
Walking on the toes, a crouched gait or a “scissored” gait
Muscle tone that is either too stiff or too floppy
For a child with CP, poor muscle development and coordination of arms, legs, lips, tongue, jaw and throat can lead to several feeding problems and other complications. If you are caring for a child with CP, watch for the following possible problems.
Complications
Possible Results
Chewing and swallowing difficulty
Lengthy feedings, aspiration
Poor posture and head control
Lengthy feedings, aspiration
Easily distracted
Lengthy feedings
Limited hunger cues
Underweight and failure to thrive
Limited food intake
Underweight and failure to thrive
Texture and other food aversions
Underweight
Gastroesophageal reflux disease
Underweight and failure to thrive
Limited fluid intake
Constipation, dehydration
Limited mobility
Constipation, overweight
Poor dental health
Difficulty chewing
Medication-nutrient interactions
Nutrient deficiencies
Some feeding problems may also lead to the need for tube feeding. Tube feeding is a therapy that provides nutrients through a tube for individuals who cannot obtain adequate nutrition through eating.
<strong><strong>Care and Treatment </strong></strong>
If you are caring for a child with CP, discuss a treatment plan with your pediatrician and social worker. The treatment plan should be based on the needs of the child and include:
Regular follow-up by a pediatrician, neurologist, breastfeeding counselor or feeding specialist
Speech, occupational and/or physical therapy to help develop skills such as walking, sitting, swallowing and using the hands; and to address feeding issues for the infant and child, and speech issues for the child
Adaptive equipment, such as specialized bottles, spoons and cups that can improve feeding
Training of nurses and caregivers on feeding an infant and child with CP using adaptive equipment, daily exercises as recommended by doctors and therapists, and growth monitoring
Dental checkups
Check out additional parenting resources!
View our expanded list of recommended parenting websites, books and other resources organized by topic.
Fetal alcohol spectrum disorder (FASD) is a birth defect that causes a pattern of physical, developmental and functional problems.
<strong>Causes</strong>
FASD is caused by the consumption of alcohol during pregnancy. Alcohol damages the baby’s cells and has an impact on development. There is no cure for FASD. Its associated problems must be managed throughout a child’s life. However, early intervention can improve a child’s growth, development and well-being.
<strong><strong>Complications</strong> </strong>
Damage to the fetus can result in physical and mental complications. These problems can affect each child in different ways and can range from mild to severe. They may include:
Abnormal facial features
Smaller eye openings
Flattened cheekbones
Smooth ridge between the nose and upper lip
Delayed growth
Small head circumference
Shorter than average height
Low birth weight
Underweight and failure to thrive
Behavioral problems
Hyperactive or aggressive behavior
Difficulty paying attention, including at mealtimes
Social withdrawal, stubbornness, impulsiveness and anxiety
Learning difficulties
Poor memory
Speech and language delays
Poor problem-solving and judgment skills
Distorted hunger perception
Vision or hearing problems
Sleep and sucking problems as an infant
Decreased muscle tone
Poor coordination
Problems with the heart, kidneys or bones
<strong><strong>Care and Treatment </strong></strong>
If you are caring for a child diagnosed with FASD, discuss a treatment plan with your pediatrician and social worker. The treatment plan should be based on the needs of the child and include:
Regular follow-up by a pediatrician. Ask the doctor about developmental milestones you should watch for and how to encourage the development of those skills.
Speech, physical and/or occupational therapy to address feeding issues for the infant and child, as well as speech and language issues for the child
Training of nurses and caregivers on feeding an infant and child with FASD
To hear the story of two siblings with Fetal Alcohol Syndrome check out this video.
Congenital Heart Disease
Congenital heart disease (CHD) is a problem that is present at birth and can affect the structure of a baby’s heart and the way it works. In some cases, the heart can become enlarged to make up for its limited function.
Congestive heart failure (CHF) may be a result of CHD because the heart must work harder than usual. CHF is a serious condition in which the overworked heart does not pump blood efficiently. As the heart works harder, metabolism and energy requirements increase. At the same time, blood flow decreases, resulting in small stomach size and slow gut motility. In addition, the heart’s inefficient pumping causes fluid to back up into the lungs, liver and other organs. Therefore, children with CHF often require fluid restriction and/or a diet low in salt. This makes it difficult to provide the child with adequate energy intake.
Signs and symptoms for CHD depend on the type and severity of the disease. Contact your doctor if the child:
Has bluish tinted nails, lips or tongue
Has fast or difficulty breathing
Sweats, especially during feeding
Tires easily when feeding
Is very sleepy
CHF can affect either the right or left side of the heart. Right-sided CHF is the most common in children with CHD.
The child may show different signs and symptoms based on the side affected:
Left
Right
Rapid breathing Rapid heartbeat Sweating Tires easily Shortness of breath while feeding
GI malabsorption Vomiting Diarrhea Tires easily Shortness of breath while feeding
Possible result of symptoms above: Slow weight and height gain
Possible result of symptoms above: Slow weight gain
<strong><strong>Complications</strong> </strong>
Children diagnosed with CHD are at nutritional risk and often demonstrate slow growth, which becomes apparent early in life. Depending on cardiac status, many factors may cause poor growth and malnutrition.
Poor appetite
Fatigue during feeding
Oral feeding challenges
Food and oral aversions
Suboptimal hunger cues
Early fullness
Nausea and vomiting
Reflux
Fluid restriction
Possible outcome:
Decreased food intake
Increased metabolism
Heart working hard to pump blood
Increased susceptibility to infection
Frequent illnesses
Possible outcome:
Increased energy and protein needs
Impaired nutrition absorption in the gut
Medications
Possible outcome:
Decreased nutrient utilization
A combination of the possible outcomes listed above may lead to poor growth and malnutrition.
<strong><strong>Care and Treatment </strong></strong>
Infants diagnosed with CHD can receive corrective surgery in the first days to months of life. Good nutritional status is important before surgery; some infants will not be able to receive the operation until they are at a healthy weight. If you are caring for a child with CHD, discuss a treatment plan with your doctor. The treatment plan should be based on the needs of the child and include:
Regular follow-up by a pediatrician
Follow-up by a pediatric cardiologist as needed
Speech and/or occupational therapy, or breastfeeding counseling to address feeding issues
Training of nurses and caregivers on feeding an infant and child with CHD
Training of nurses, caregivers and cooks on measurement of liquids and limiting salt in cooking in case of fluid and salt restrictions
Down Syndrome and General Low Tone
Down syndrome (DS), also called Trisomy 21, is a condition in which extra genetic material causes delays in the way a child develops, both mentally and physically.
Medical problems may vary from child to child. While some children diagnosed with DS need a lot of medical attention, others lead lives where the disease has less of an impact on their daily functions. Low tone or hypotonia is when children’s muscles may be floppy.
<strong>Cause</strong>
At the time of conception, the child inherits extra genetic material that causes the physical features and developmental delays associated with DS. The exact cause of why this happens is unknown. Women who become pregnant after the age of 35 have a significantly higher risk of having a child diagnosed with DS.
<strong><strong>Signs</strong></strong>
Common physical features include:
Flat facial profile
An upward slant to the eyes
Small ears
A protruding tongue
Excessive drooling
Low muscle tone (babies, in particular, may seem especially “floppy”)
Delayed developmental milestones (sitting up, crawling and walking)
Toddlers and Older Children
Difficulty learning
Delays in speech
Delays in self-care skills (feeding, dressing, use of toilet)
Slow metabolism that may result in being overweight
Thyroid problems
Seizure disorders
Respiratory problems
Vision or hearing problems
Problems with the heart and lungs
Increased susceptibility to infections
Low tone can and often does improve over time. Most children diagnosed with DS typically reach developmental milestones later than other kids. Children diagnosed with DS can and do learn and are capable of developing skills throughout their lives. They simply reach goals at a different pace, which is why it is important not to compare a child diagnosed with DS with a child who is developing at a typical rate.
<strong><strong>Care and Treatment </strong></strong>
If you are caring for a child diagnosed with DS or a condition characterized by low tone, discuss a treatment plan with your pediatrician and social worker. The treatment plan should be based on the needs of the child and should include:
Regular follow-up by a pediatrician. Ask the doctor about developmental milestones you should watch for and how to encourage the development of those skills.
Evaluation by a cardiologist, eye doctor and ear, nose and throat doctor
Speech, physical and/or occupational therapy or breastfeeding counseling to address feeding issues for the infant and child, as well as speech and feeding issues for toddlers and older children
Training of caregivers on feeding an infant and child with DS
Low Birth Weight
Low birth weight (LBW) is defined as a birth weight of less than 2.5 kg (2,500 grams) or 5.5 pounds. It is associated with chronic diseases or disabilities later in life and a higher risk of infant or childhood death.
<strong>Causes</strong>
Causes of LBW may include:
Congenital abnormalities
Premature birth (birth at less than 37 weeks of gestation)
Maternal factors such as:
Small size
Infections
Poor nutrition
Problems with placenta
Exposure to drugs, alcohol, smoking
<strong><strong>Complications</strong> </strong>
If you are caring for a low birth weight child, watch for the following possible problems:
Slow weight gain and growth during infancy
Subtle and delayed hunger cues that are difficult to recognize
Nutrient deficiencies (i.e., iron deficiency anemia)
Poor cognitive development
If the child is premature:
Diminished or absent gag and cough reflex
Decreased muscle tone
Difficulty sucking
Constipation
<strong><strong>Care and Treatment </strong></strong>
If you are caring for a low birth weight child, watch for the following possible problems:
Slow weight gain and growth during infancy
Subtle and delayed hunger cues that are difficult to recognize
Nutrient deficiencies (i.e., iron deficiency anemia)
Poor cognitive development
If the child is premature:
Diminished or absent gag and cough reflex
Decreased muscle tone
Difficulty sucking
Constipation
Receive Post Adoption Coaching & Education
All parents encounter challenges as their children grow up. And sometimes, issues may arise that leave you uncertain as to how best to respond. But not every issue requires therapy or counseling. The PACE program is here to help during those times.
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