Developmental Delays and Disabilities
Advice for families and caregivers
Can you give advice for parents and caregivers new to this situation?
How does a developmental disability differ from a developmental delay?
What is Fetal Alcohol Syndrome?
What is a pervasive developmental disorder?
What is Rett's syndrome?
What is childhood disintegrative disorder?
How can I adjust to being the parent or caregiver of a child with developmental disabilities?
Do you have advice for parents and caregivers of children with developmental disabilities?
How can I maximize the growth of a child with an intellectual disability?
Are support groups helpful?
What will my child's future be like if he has a developmental disability?
How do I care for an adult with developmental delays or disabilities?
How can I find someone to care for my child with special needs?
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.
- 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.
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.
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:
- Social interaction
- Repetitive patterns of behavior, interests and activities
- 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.
- 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.
- 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.
To find parent support groups in your area, contact:
- The Arc
- Easter Seals
- Autism Speaks Family Resources