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Early Intervention for Down Syndrome

National Down Syndrome Society

The first years of life are a critical time in a child's development. All young children go through most of their rapid and developmentally significant changes during this time. During these early years, they achieve the basic physical, cognitive, language, social and self-help skills that lay the foundation for future progress, and these abilities are attained according to predictable developmental patterns. Children with Down syndrome typically experience delays in certain areas of development, so early intervention is highly recommended. It can begin anytime after birth, but the sooner it starts, the better.

What is early intervention?

Early intervention is a systematic program of therapy, exercises, and activities designed to address developmental delays that children with Down syndrome or other disabilities encounter. These services are mandated by a A federal law called the Individuals with Disabilities Education Act (IDEA) requires that states provide early intervention services for all children who qualify, with the goal of enhancing the development of infants and toddlers and helping families understand and meet the needs of their children. The most common early intervention services for babies with Down syndrome are physical therapy, speech and language therapy, and occupational therapy.

When should early intervention start?

Early intervention should begin shortly after birth, and usually continues until the child reaches age three. An amendment to IDEA in 2004 allows states to have early intervention programs that continue until the child enters, or is eligible to enter, kindergarten. The sooner early intervention begins, the better, but it's never too late to start.

How can early intervention benefit a baby with Down syndrome?

Development is a continuous process that begins at conception and proceeds stage by stage in an orderly sequence. There are specific milestones in each of the four areas of development (gross and fine motor abilities, language skills, social development and self-help skills) that serve as prerequisites for the stages that follow.

Most children are expected to achieve each milestone at a designated time, also referred to as a "key age," which can be calculated in terms of weeks, months, or years. Because of specific challenges associated with Down syndrome, babies will likely experience delays in certain areas of development, but they will achieve each of the same milestones as other children, just on their own timetable. In monitoring the development of a child with Down syndrome, it is more useful to look at the sequence of milestones achieved, rather than the age at which the milestone is reached.

MILESTONE: GROSS MOTOR

Sits Alone
Range for Children with Down Syndrome: 6 to 30 Months
Typical Range: 5 to 9 months

Crawls
Range for Children with Down Syndrome: 8 to 22 months
Typical Range: 6 to 12 months

Stands
Range for Children with Down Syndrome: 1 to 3.25 years
Typical Range: 8 to 17 months

Walks Alone
Range for Children with Down Syndrome: 1 to 4 years
Typical Range: 9 to 18 months

MILESTONE: LANGUAGE

First Word
Range for Children with Down Syndrome: 1 to 4 years
Typical Range: 1 to 3 years

Two-Word Phrases
Range for Children with Down Syndrome: 2 to 7.5 years
Typical Range: 15 to 32 months

MILESTONE: SOCIAL/SELF-HELP

Responsive Smile
Range for Children with Down Syndrome: 1 to 5.5 months
Typical Range: 1 to 3 months

Finger Feeds
Range for Children with Down Syndrome: 10 to 24 months
Typical Range: 7 to 14 months

Drinks from Cup Unassisted
Range for Children with Down Syndrome: 12 to 32 months
Typical Range: 9 to 17 months

Uses Spoon
Range for Children with Down Syndrome: 13 to 39 months
Typical Range: 12-20 months

Bowel Control
Range for Children with Down Syndrome: 2 to 7 years
Typical Range: 16-42 months

Dresses Self Unassisted
Range for Children with Down Syndrome: 3.5 to 8.5 years
Typical Range: 3.25 to 5 years

What are the types of early intervention therapies? How does each type address specific aspects of a baby's development?

infant is expected to gain head control and the ability to pull to a sitting position (with help) with no head lags and enough strength in the upper torso to maintain an erect posture. Appropriate physical therapy may assist a baby with Down syndrome, who may have low muscle tone, in achieving this milestone.

Before birth and in the first months of life, physical development remains the underlying foundation for all future progress. Babies learn through interaction with their environment. To do so, an infant must have the ability to move freely and purposefully. The ability to explore one's surroundings, to reach and grasp toys, to turn one's head to follow a moving object with one's eyes, to roll over, to crawl in pursuit of a desired objective--all of these behaviors are dependent upon gross as well as fine motor development. These physical, interactive activities foster understanding and mastery of the environment, stimulating cognitive, language, and social development.

Another long-term benefit of physical therapy is that it helps prevent compensatory movement patterns that individuals with Down syndrome are prone to developing. These patterns can lead to orthopedic and functional problems if not corrected.

Speech and language therapy is a critical component of early intervention. Even though babies with Down syndrome may not say first words until 2 or 3 years of age, there are many pre-speech and pre-language skills that they must acquire first. These include the ability to imitate and echo sounds; turn-taking skills (learned through games like peek-a-boo); visual skills (looking at the speaker and objects); auditory skills (listening to music and speech for lengthening periods of time, or listening to speech sounds); tactile skills (learning about touch, exploring objects in the mouth); oral motor skills (using the tongue, moving the lips); and cognitive skills (understanding object permanence, and cause-and-effect relationships).

A speech and language therapist can help with these and other skills, as well as help the mother breastfeed. Because breastfeeding employs the same anatomical structures used for speech, it can help strengthen a baby's jaw and facial muscles and lay the foundation for future communication skills.

Occupational therapy helps children develop and master skills for independence. It can also help with abilities that include opening and closing things, picking up and releasing toys of various sizes and shapes, stacking and building, manipulating knobs and buttons, experimenting with crayons. Therapists help children learn to feed and dress themselves, and teach skills for playing and interacting with other children.

Early intervention can prevent a child with Down syndrome from reaching a plateau at some point in development. The goal of early intervention programs is to enhance and accelerate development by building on a child's strengths and by strengthening those areas that are weaker, in all areas of development.

How can parents benefit from early intervention programs?

Programs of early intervention have a great deal to offer to parents in terms of support, encouragement, and information. The programs teach parents how to interact with their infant and toddler, how to meet their child's specific needs, and how to enhance development.

How do I sign up for early intervention services?

Each state has its own set of laws governing early intervention services. Parents can get a referral from their baby's doctor or find a local agency by visiting nectac.org. Once a referral has been made, the program staff must schedule and complete an initial evaluation within a specified time. Once the assessment is done, a caseworker is assigned to coordinate the various services for which the baby and family qualifies. Early intervention services are individualized to meet the specific needs of each individual baby. The caseworker, therapists, and family will determine the areas of focus and set goals based on the developmental milestones. These will be recorded in a document called the Individualized Family Service Plan (IFSP).

Who pays for early intervention?

The evaluation to determine whether your child is eligible for early intervention is free if performed by a state authorized entity. No child deemed eligible can be denied services based on ability to pay, but insurance companies may be billed and/or a sliding scale payment may be required, depending on what state you reside in. Check with your state's early intervention center for information about authorized service providers and financial obligations. Frequently, there is little or no cost to parents for these services.

What happens after age 3?

The Individuals with Disabilities Education Act (IDEA), which regulates early intervention, also mandates that local school districts provide a free, appropriate, public education for preschool-age children with disabilities starting at age 3, unless that would be inconsistent with state law or practice, or the order of any court, respecting the provision of public education to children between the ages of 3 and 5.

Originally featured on the National Down Syndrome Society (NDSS.org) and reprinted with permission. Copyright © 2012 Meredith Corporation.