What Are "Special Needs"?
"Special Needs" is an umbrella underneath which a staggering array of diagnoses can be wedged. Children with special needs may have mild learning disabilities or profound mental retardation; food allergies or terminal illness; developmental delays that catch up quickly or remain entrenched; occasional panic attacks or serious psychiatric problems. The designation is useful for getting needed services, setting appropriate goals, and gaining understanding for a child and stressed family.
"Special needs" are commonly defined by what a child can't do -- by milestones unmet, foods banned, activities avoided, experiences denied. These minuses hit families hard, and may make "special needs" seem like a tragic designation. Some parents will always mourn their child's lost potential, and many conditions become more troubling with time. Other families may find that their child's challenges make triumphs sweeter, and that weaknesses are often accompanied by amazing strengths.
Pick any two families of children with special needs, and they may seem to have little in common. A family dealing with developmental delays will have different concerns than one dealing with chronic illness, which will have different concerns than one dealing with mental illness or learning problems or behavioral challenges. This Parenting Special Needs site devotes sections to the following specific issues: medical, behavioral, developmental, learning, and mental health.
Medical issues for children include serious conditions like cancer and heart defects, muscular dystrophy and cystic fibrosis; chronic conditions like asthma and diabetes; congenital conditions like cerebral palsy and dwarfism; and health threats like food allergies and obesity. Children with medical issues may require numerous tests, long hospital stays, expensive equipment, and accommodations for disabilities. Their families have to deal with frequent crises, uncertainty, and worry.
Children with behavior issues don't respond to traditional discipline. With diagnoses like ADHD, Fetal Alcohol Spectrum Disorder, Dysfunction of Sensory Integration, and Tourette Syndrome, they require specialized strategies that are tailored to their specific abilities and disabilities. If those strategies are not developed and used, kids with behavior issues throw their families into chaos and are seriously at risk for school problems. Their parents need to be flexible and creative.
Developmental disabilities are some of the most devastating for a family to deal with, changing visions of the future and providing immediate difficulties in caring for and educating a child. Diagnoses like autism, Down syndrome and mental retardation often cause children to be removed from the mainstream, and parents must be fierce advocates to make sure their children receive the services, therapy, schooling, and inclusion they need and deserve.
Children with learning disabilities like dyslexia and Central Auditory Processing Disorder struggle with schoolwork regardless of their intellectual abilities. They require specialized learning strategies to meet their potential and avoid self-esteem problems and behavioral difficulties. Parents of learning-challenged kids need to be persistent both in working with their reluctant learners and with the schools that must provide the help these children need.
Mental Health Issues:
A child's problems with anxiety or depression can sneak up on parents; problems with attachment may smack them right in the face. Living with a child with mental health issues can put family members on a roller coaster of mood swings and crises and defiance. Parents have to find the right professionals to help, and make hard decisions about therapy, medications, and hospitalization. The consequences of missed clues and wrong guesses can be significant.
Although every special-needs child is different and every family is unique, there are some common concerns that link parents of challenged kids, including getting appropriate care and accommodations; promoting acceptance in the extended family, school and community; planning for an uncertain future; and adjusting routines and expectations. Parents of children with special needs are often more flexible, compassionate, stubborn and resilient than other parents. They have to be.
Down syndrome, or Down's syndrome (primarily in the United Kingdom), trisomy 21, or trisomy G, is a chromosomal disorder caused by the presence of all or part of an extra 21st chromosome. It is named after John Langdon Down, the British physician who described the syndrome in 1866. The disorder was identified as a chromosome 21 trisomy by Jérôme Lejeune in 1959. The condition is characterized by a combination of major and minor differences in structure. Often Down syndrome is associated with some impairment of cognitive ability and physical growth, and a particular set of facial characteristics. Down syndrome in a fetus can be identified with amniocentesis during pregnancy, or in a baby at birth.
Individuals with Down syndrome tend to have a lower than average cognitive ability, often ranging from mild to moderate developmental disabilities. A small number have severe to profound mental disability. The incidence of Down syndrome is estimated at 1 per 800 to 1,000 births, although it is statistically much more common with older mothers. Other factors may also play a role.
Many of the common physical features of Down syndrome may also appear in people with a standard set of chromosomes, including microgenia (an abnormally small chin), an unusually round face, macroglossia (protruding or oversized tongue), an almond shape to the eyes caused by an epicanthic fold of the eyelid, upslanting palpebral fissures (the separation between the upper and lower eyelids), shorter limbs, a single transverse palmar crease (a single instead of a double crease across one or both palms, also called the Simian crease), poor muscle tone, and a larger than normal space between the big and second toes. Health concerns for individuals with Down syndrome include a higher risk for congenital heart defects, gastroesophageal reflux disease, recurrent ear infections, obstructive sleep apnea, and thyroid dysfunctions.
Early childhood intervention, screening for common problems, medical treatment where indicated, a conducive family environment, and vocational training can improve the overall development of children with Down syndrome. Although some of the physical genetic limitations of Down syndrome cannot be overcome, education and proper care will improve quality of life.
Autism is a disorder of neural development characterized by impaired social interaction and communication, and by restricted and repetitive behavior. These signs all begin before a child is three years old. Autism affects information processing in the brain by altering how nerve cells and their synapses connect and organize; how this occurs is not well understood. The two other autism spectrum disorders (ASD) are Asperger syndrome, which lacks delays in cognitive development and language, and PDD-NOS, diagnosed when full criteria for the other two disorders are not met.
Autism has a strong genetic basis, although the genetics of autism are complex and it is unclear whether ASD is explained more by rare mutations, or by rare combinations of common genetic variants. In rare cases, autism is strongly associated with agents that cause birth defects. Controversies surround other proposed environmental causes, such as heavy metals, pesticides or childhood vaccines; the vaccine hypotheses are biologically implausible and lack convincing scientific evidence. The prevalence of autism is about 1–2 per 1,000 people; the prevalence of ASD is about 6 per 1,000, with about four times as many males as females. The number of people diagnosed with autism has increased dramatically since the 1980s, partly due to changes in diagnostic practice; the question of whether actual prevalence has increased is unresolved.
Parents usually notice signs in the first two years of their child's life. The signs usually develop gradually, but some autistic children first develop more normally and then regress. Although early behavioral or cognitive intervention can help autistic children gain self-care, social, and communication skills, there is no known cure. Not many children with autism live independently after reaching adulthood, though some become successful. An autistic culture has developed, with some individuals seeking a cure and others believing autism should be tolerated as a difference and not treated as a disorder.
Cerebral palsy (CP) is an umbrella term encompassing a group of non-progressive, non-contagious motor conditions that cause physical disability in human development, chiefly in the various areas of body movement.
Cerebral refers to the cerebrum, which is the affected area of the brain (although the disorder most likely involves connections between the cortex and other parts of the brain such as the cerebellum), and palsy refers to disorder of movement. Cerebral palsy is caused by damage to the motor control centers of the developing brain and can occur during pregnancy, during childbirth or after birth up to about age three.
Cerebral palsy describes a group of permanent disorders of the development of movement and posture, causing activity limitation, that are attributed to nonprogressive disturbances that occurred in the developing fetal or infant brain. The motor disorders of cerebral palsy are often accompanied by disturbances of sensation, perception, cognition, communication, and behaviour, by epilepsy, and by secondary musculoskeletal problems.
Of the many types and subtypes of CP, none of them have a known cure. Usually, medical intervention is limited to the treatment and prevention of complications arising from CP's effects.
A 2003 study put the economic cost for people with CP in the US at $921,000 per individual, including lost income.
In another study, the incidence in six countries surveyed was 2.12–2.45 per 1,000 live births, indicating a slight rise in recent years. Improvements in neonatal nursing have helped reduce the number of babies who develop cerebral palsy, but the survival of babies with very low birth weights has increased, and these babies are more likely to have cerebral palsy.