Down Syndrome: For Parents

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What help is available for children with Down syndrome?

Studies show that early intervention - working to enhance your baby's development and overcome developmental delays - pays enormous dividends. Some of the children with Down syndrome who were involved in early intervention programs developed faster than even the average "normal" child! Most dramatic is the difference between children with Down syndrome who were part of an early intervention program and those who did not participate.

- French McConnaughey, M. Ed. and Patricia O. Quinn M.D., Babies with Down Syndrome - Edited by Karen Stray-Gundersen

Where can I go for help?

Under federal law, states are required to provide early intervention services to infants with disabilities from birth to age three. After age three, federal law requires states to provide appropriate special education services. Help can be received from either public or private sources. Public services can be obtained by contacting your state Health or Education departments. Private services may be covered by health insurance.

What types of professionals will provide services?

Depending on the programs available in your area and the specific needs of your baby, you may work with some or all of the following professionals

A Developmental Pediatrician is a doctor with specialized training in childhood development.

An Infant Educator is a teacher trained to work on your child's cognitive ability. The Infant Educator will focus her attention on your baby's development and determine if that development is proceeding typically. Areas of concentration for the Infant Educator might be responsiveness to stimulation, social development, and ability to understand concepts. The Infant Educator may work with you to help you learn the techniques to improve your baby's abilities.

A Physical Therapist will work on improving your baby's gross motor skills. She will be concerned with muscle tone, reflexes, stability, and motor development.

An Occupational Therapist concentrates on fine motor skills. She will be concerned with your baby's ability to reach and hold objects. The Occupational Therapist will also be concerned with your baby's processing of information through vision, touch, hearing, and movement.

A Speech Therapist will concentrate on how your baby uses the muscles of the mouth and face to eat and to make sounds. The Speech Therapist can be a resource for problems dealing with feeding. As your baby grows, the Speech Therapist will help your baby properly make sounds and words.

Mental Health Professionals include social workers, counsellors, and others who can provide counselling and emotional support to your family. Many early intervention programs include parent support groups which give parents an opportunity to share information and seek advice from other parents.

What is an IFSP?

The Individuals with Disabilities Education Act (IDEA) requires that an Individualized Family Service Plan (IFSP) be completed for every child eligible for early intervention services. The IFSP must be completed by either a state or local government agency. The IFSP will include your child's strengths and needs, your family's resources and concerns, and the services to be provided. Whatever services your child is to receive must be outlined in the IFSP. The IFSP must also include family services such as:

helping parents learn how to teach their child with Down syndrome
helping siblings learn to cope with their new baby brother or sister

The IFSP must be reviewed every six months.

Where do we start?

As soon as the diagnosis of Down syndrome is received, you should contact an early intervention program in your area. Information about early intervention programs can be received from your doctor, your local school district, your state or county health or education departments, other parents of children with Down syndrome, or your local chapter of ARC. Once you have contacted an early intervention program, they should do a preliminary evaluation of your baby and provide you with initial recommendations. This preliminary evaluation can be of great help when it is time to complete the IFSP. Remember, the program you choose can be changed if you decide a better program is available.

Important things to remember:

You are the consumer of a service provided by the early intervention program. The therapist works for you and your baby.
If you do not understand something about your child or the services your child is receiving, ask the therapist to explain. The therapist should answer all your questions in a way that you can understand.
Keep copies of everything and get notes from every therapist after every visit. These notes will help you track your baby's development.
Write down every question you have before the session with the therapist and write down every answer. No one can be expected to remember everything.

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