Developmental Delays and Disabilities

If you notice that your child does not seem to be progressing at what is considered a normal level of development, you should first consult your pediatrician and then perhaps a developmental pediatrician. There is a normal range of development and some children begin slowly but then catch up. But if your child is not progressing "normally" it helps to intervene as fully and early as possible.

There are many possible causes of a developmental delay, ranging from severe developmental disorders such as autism, to cerebral palsy, to intellectual disabilities, to relatively minor learning disabilities, to hearing or vision impairments. Also, chronic illness and long-term hospitalization can result in developmental delays. The diagnosis of a developmental delay is more common, and can be less severe, than that of a developmental disability.

Often, a diagnosis of a developmental delay is preliminary, until specialists can make a definitive diagnosis. It may take more time for your child's disorder to fully manifest itself. In order to get a specific diagnosis, you may need to consult with a developmental pediatrician who specializes in working with patients who have developmental disabilities.

Here are some pointers:

• Act quickly to try to learn what is causing your child's delay and then intervene to get as much help as possible to overcome it.
• If you feel that something is wrong, but your pediatrician doesn't agree, get another opinion from a developmental pediatrician.
• Once you have a diagnosis, learn as much as your can, and be active in seeking therapy to overcome the delay.
• See if the diagnosis qualifies your child for Early Intervention services or Special Education.

A developmental disability is a chronic problem resulting from mental or physical impairments, or both. People with developmental disabilities may find it difficult to perform major life activities such as moving, learning, communicating with language, taking care of themselves and living independently. The disabilities begin between birth and age 22 and last throughout a person's life. Examples include autism spectrum disorders, brain injuries, cerebral palsy, and intellectual disabilities caused by Down syndrome, fragile X syndrome, or any other significant cognitive impairment. A developmental delay, on the other hand, refers to the fact that a child is not meeting expected milestones, but the cause of the delay has not yet been determined.

Fetal Alcohol Syndrome (FAS) refers to physical and mental birth defects caused by the mother consuming too much alcohol during pregnancy. The syndrome can include intellectual delays, inadequate growth, problems with the central nervous system, abnormalities in cranial structure, and behavioral issues.

A pervasive developmental disorder is one in which a person is delayed in socialization and communication skills. Some people's delays are clear from birth, while others can appear any time until the age of 3.

The most common pervasive developmental disorder is autism spectrum disorder, a developmental disorder of the brain that is characterized by problems in social interaction and communication skills, and limits in range of activities and interests. Other pervasive developmental disorders are Rett's syndrome and childhood disintegrative disorder. Unfortunately, there is no known cure for these problems, although some symptoms can be treated with medication and certain interventions may be helpful.

Rett's syndrome is a developmental disorder in which a girl develops normally at first, then loses the ability to control hand motions, has slowed growth of the brain and head, and develops seizures and mental retardation. The first symptom is usually loss of muscle tone, then loss of the ability to control hand movements, and then speech. Gradually there are problems with crawling and loss of eye contact. The girl may then develop compulsive hand movements such as washing or wringing, then becomes unable to move at all, including moving her eyes and the ability to speak. Initial symptoms usually appear between 6 and 18 months of age. There is a wide variability in the severity of the syndrome. Unfortunately, there is no known cure.

Children with childhood disintegrative disorder usually develop normally until the age of 3 or 4, and then undergo a severe loss of skills in at least two of the following areas before the age of 10:

• Ability to say words or sentences
• Ability to understand communication, whether verbal or nonverbal
• Social and self-care skills
• Bowel and bladder control
• Play skills
• Movement skills, such as the ability to move one's body as planned

A person with childhood disintegrative disorder lacks the ability to perform normally in two of these areas:

• Communication
• Social interaction
• Repetitive patterns of behavior, interests and activities

The loss of abilities may be sudden or gradual, and the cause isn't known.

It's normal to go through a painful period of adjustment upon learning that your child has a special need. Here are some guidelines that may be helpful:

• Grieve the loss of the child you expected or dreamed about and begin to develop new dreams for the child you have.
• Recognize your child's strengths, as well as his limitations.
• Educate yourself about your child's condition.
• Focus on helping your child to be "the best he can be." Avoid comparing your child with others.
• Seek help -- with emotional issues, finding a caring physician, and creating a therapeutic and educational program that meets your child's needs.
• In addition to health care professionals and various therapists, other parents in your situation may be wonderful resources, either by providing one-on-one support, participating in support groups, or through personal stories that many have written about their adjustments and coping strategies.

Here are some pointers from one parent who is also a pediatrician:

• Love your child as you would any other. Focus first on the fact that this is your child, and then on the special need.
• Play with your child.
• Get therapy -- speech, occupational, physical, and educational -- as soon as possible.
• Follow through if your pediatrician recommends that your child see medical specialists.
• When professionals come to your home to work with your child, learn as much as you can from them, such as about other helpful resources, and how you can implement some of the techniques they use to challenge your child.
• Say your child's name often, especially when you are giving praise.
• Create an environment that suits your child's needs and abilities. Encourage movement and exploration.
• Accept that your child will develop at her own speed and in her own way.
• Understand that you may have to repeat an activity many times before your child can do it well.
• Keep careful records of date, time of day, location, who was present, and any other characteristics you can think of to indicate what your child can do and any changes in your child's level of ability. Also record what was happening at the time of any problems that occur to see if you can identify any triggers.

Here are some suggestions:

• Educate yourself about your child's disability.
• Encourage as much independence as possible in your child, even if this greatly slows down your day.
• Take advantage of Early Intervention programs in your area, and then meet with your child's school to develop a Special Education program that will stimulate and challenge your child.
• Teach your child responsibility through giving her chores. Break down each chore into small steps, such as how to set the table, doing one part at a time. Praise her frequently when she does something right.
• Be in touch with your child's teacher at school and try to give your child a chance to apply any lessons learned at school.
• Try to find opportunities for social activities for your child in your community.
• Share information with other parents of children with intellectual disabilities. If you call National Dissemination Center for Children with Disabilities at 800-695-0285, they can give you a support group in your area.

Many parents find it useful to join support groups that provide both information and understanding. These groups often offer support for other family members, too. Becoming involved in educational activities through playgroups or Early Intervention programs can also be a source of support.

To find parent support groups in your area, contact:

• The Arc
• Easter Seals
• Autism Speaks Family Resources

A diagnosis of developmental disability means that your child has a significant problem. But you can still have a close and loving relationship with him. Once you adjust your expectations based on your child's specific abilities, you may be much happier. People with developmental disabilities have a broad range of abilities, so your child's prognosis will depend on his specific diagnosis and degree of impairment.

For information on how to arrange future care plans, what to do when your child with special needs lives independently, choosing doctors, life after high school, trusts, and arranging guardians or conservators, see the Care.com Caregiver Guide for Special Needs article on When Your Child Turns 22.

Care.com is a website that lists caregivers throughout the United States who provide assistance to people with special needs. You can search for caregivers near you and review caregiver profiles including photos, references and background checks, and work history. For specific listings of special needs caregivers, go to Care.com.