Developmental Delay

What is developmental delay?
Developmental Delay is when your child does not reach their developmental milestones at the expected times. It is an ongoing major or minor delay in the process of development. If your child is temporarily lagging behind, that is not called developmental delay. Delay can occur in one or many areas—for example, gross or fine motor, language, social, or thinking skills.

Developmental Delay is most often a diagnosis made by a doctor based on strict guidelines. Usually, though, the parent is the first to notice that their child is not progressing at the same rate as other children the same age. If you think your child may be “slow,” or “seems behind,” talk with your child’s doctor about it. In some cases, your pediatrician might pick up a delay during an office visit. It will probably take several visits and possibly a referral to a developmental specialist to be sure that the delay is not just a temporary lag. Your child’s doctor may use a set of screening tools during regular well-child visits. boy riding on dad's shoulders

The first three years of a child’s life are an amazing time of development…

…and what happens during those years stays with a child for a lifetime. That’s why it’s so important to watch for signs of delays in development, and to get help if you suspect problems. The sooner a delayed child gets early intervention, the better their progress will be. So, if you have concerns, act early.

What causes developmental delay?
Developmental delay can have many different causes, such asgenetic causes (like Down syndrome), or complications of pregnancy and birth (like prematurity or infections). Often, however, the specific cause is unknown. Some causes can be easily reversed if caught early enough, such as hearing loss from chronic ear infections, or lead poisoning.

What should I do if I suspect my child has developmental delay?
If you think your child may be delayed, you should take them to their primary care provider, or to a developmental and behavioral pediatrician or pediatric neurologist. An alternative to seeing a specialist is to work through your local school system (see below). If your child seems to be losing ground—in other words, starts to not be able to do things they could do in the past—you should have them seen right away. If your child is developmentally delayed, the sooner you get a diagnosis, the sooner you can begin connecting to developmental services and a medical plan if needed—and the better your child’s progress will be.

If you have concerns, act early.

What can the school system do for my child?
Ask your school system in writing for an evaluation of your child, even if your child is a baby, toddler or preschooler. They are required to provide it, at no cost to you. The purpose of an evaluation is to find out why your child is not meeting their developmental milestones or not doing well in school. A team of professionals will work with you to evaluate your child. If they do not find a problem, you can ask the school system to pay for an Independent Educational Evaluation (IEE). There are strict rules about this, so you may not get it. You can also have your child tested again privately, and pay for it yourself. But check with your school district first to make sure they will accept the private test results. By law, the school system must consider the results of the second evaluation when deciding if your child can get special services.

What is early intervention?
Every state has an early intervention program that you will want to get your child into right away. If you live in Michigan, your doctor may refer you to the Early On Program in your local school district. (Outside Michigan, you can find your state’s early intervention services through the NICHCY website.) Early On (and all states’ early intervention programs) offer many different services and will help set up an individualized program for your family. It is called an Individual Family Service Plan (IFSP).

It is most important to start a care plan as soon as you can, and make sure it includes lots of one-on-one interaction with your child.

What is special education?
Special education means “educational programming designed specifically for the individual.” It can really help your child do better in school. If your school-aged child qualifies for special education, they will have an Individualized Education Plan ( IEP) designed just for them.

What happens as my child grows up and eventually becomes an adult?
Transition planning is planning to get your child ready to lead a rewarding life as an adult. As your child gets closer to adulthood, they will need an IEP transition plan. Transition planning begins at age 14. It is part of the IEP every year after that. At age 16, planning will begin for how your child will transition from school into the community. The goal is for your child to become as independent as possible. Your child should take part in the planning, because their input will help make the plan more successful. For a thorough discussion (37 pages when printed) of the transition plan, see Transition Services in the IEP, from NICHCY.

What do I need to know about the laws that have to do with early intervention and special education? What are our rights?

What are some recommended books?

  • Teaching the Young Child with Motor Delays: A Guide for Parents and Professionals , by Marci Swanson and Susan Harris. This book is a useful guide in choosing development tasks to work on with your delayed child. It contains a lot of detail on breaking down large developmental goals into small, attainable steps. There is a large section devoted to outlining “objectives”, giving suggestions on how to attain them, and examples of rewards. Uses clear and detailed examples.
  • When Your Child Has a Disability: The Complete Sourcebook of Daily and Medical Care , Revised Edition, by Mark Batshaw. A useful book to read and keep as a reference. Covers a wide range of medical and educational issues, as well as daily and long-term care requirements of specific disabilities. Discusses parent concerns like behavior, medication, and potential complications. Also addresses issues such as prematurity, early intervention, legal rights, attention-deficit/hyperactivity disorder, learning disabilities, genetic syndromes, and changes in health.

What are some other resources for information and support?
Related topics on YourChild:

Other resources:

Spanish Language Resources:

Organizations:

  • NICHCY (National Information Center for Children and Youth with Disabilities) publishes free, fact-filled newsletters, arranges workshops and speakers, and advises parents on the laws entitling children with disabilities to special education and other services. They also offer Spanish language resources. Their state resource sheets have listings of government programs, disability organizations, and more. Call 1-800-695-0285 FREE.
  • Early On Michigan is the state of Michigan’s early intervention service. Call 1-800-EARLY-ON FREE. If you live outside Michigan, NICHCY can help you find your own state’s early intervention service.
  • Parent Centers provide training and information to parents of children with disabilities—babies through young adults. This assistance helps parents better meet the educational needs of their children with disabilities. Find the Parent Training and Information Center near you.
  • The CDC has information on child development, developmental screening and early intervention. And remember: If you have concerns, act early.
  • Zero to Three is the nation’s leading resource on the first three years of life, with a mission to strengthen and support families, practitioners and communities to promote the healthy development of babies and toddlers.
  • CAUSE (Citizens Alliance to Uphold Special Education), based in Michigan, provides free services to families of children with special needs and the professionals who work with them. Find out more about CAUSE in English, Spanish or Arabic. CAUSE offers free workshops and information to anyone who needs assistance. Call 1-800-221-9105 FREE.
  • The Pathways Awareness Foundation offers resources for parents of children with physical movement developmental delays.  Find out where to turn when you need more answers, and get information (available in multiple languages) that will help if you’re concerned about your baby.
  • The Vanderbilt Kennedy Center for Research on Human Development strives to better understand human development, prevent and solve developmental problems, and enable persons with developmental disabilities to lead fuller lives in their communities.
  • The ARC is a national organization of and for people with intellectual and developmental disabilities and their families. It is devoted to promoting and improving supports and services for people with intellectual disabilities and their families.
  • The Council for Exceptional Children is a professional organization dedicated to improving educational outcomes for individuals with exceptionalities, students with disabilities, and/or the gifted. Call 1-703-620-3660.
  • NAPSEC (National Association of Private Schools for Exceptional Children) provides referrals for private special education programs. Call 1-202-408-3338.
  • The American Association on Intellectual and Developmental Disabilities (AAIDD) promotes progressive policies, sound research, effective practices, and universal human rights for people with intellectual disabilities. Call 1-800-424-3688 FREE.
  • Best Buddies is dedicated to enhancing the lives of people with intellectual disabilities by providing chances for one-to-one friendships and integrated employment. Call 1-800-89-BUDDY FREE.

Written and compiled by Kyla Boyse, RN.  Reviewed by Layla Mohammed, MD.
Updated February 2010