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 Birth-Three: Early Intervention for Infants and Toddlers With Fragile X Syndrome

What Does the Individuals With Disabilities Education Act (IDEA) Offer if the Child is in the Birth-Three Age Range?

The Early Intervention for Infants and Toddlers with Disabilities and Their Families program was added as an amendment to IDEA to encourage states to set up programs for very young children and their families. Services are jointly selected by parents and service providers and may be offered in the home, school, hospital, or center. Intervention at this early age can prevent many problems in later years and can provide a good foundation of early learning.

How are These Programs Found?

A call to the local public school principal or special education coordinator can help parents find the programs and services in their community. If the child is already diagnosed with fragile X syndrome, the family will likely bypass the first step (1) the screening process, and move to the second step (2) the assignment of a temporary service coordinator.  This selection of a service coordinator must be accomplished within two working days of the time the child is referred. Once possible eligibility is determined, a multidisciplinary evaluation takes place.

What is a Multidisciplinary Evaluation, and How Does it Proceed?

In order to determine the child's eligibility for services, a multidisciplinary evaluation takes place.  This must be completed within forty-five days of the referral, and an Individualized Family Service Plan (IFSP) must be put in place. The purpose of the evaluation is to determine the child's strengths and needs. It includes various procedures/observations, tests, interviews, play-based screenings, checklists, and other means. The evaluation must be multidisciplinary, which means there must be people from various backgrounds to evaluate the child.

What Preparations Should Families Make for the Evaluation of Their Child With Fragile X?

A multidisciplinary team assesses the infant or toddler. For the child with fragile X syndrome, this team may include speech-language pathologists, audiologists, occupational therapists, physical therapists, psychologists, social workers, and early intervention specialists. there may just be two or three team members, along with the parents, on the multidisciplinary team.

Preparation for the evaluation by parents and caregivers of children with fragile X syndrome is essential. Parents can prepare for the process by learning as much as they can about unfamiliar concepts and terminology, talking to other parents about the process, and writing down their questions and concerns.

It is important for parents to realize that they know the most about their own child and may know much more about fragile X syndrome than some of the professionals on the team. Parents may wish to bring brochures about fragile X, web-site address, and other materials to share with and educate team members.

In planning the evaluation, parents might consider the following:

• When is my child at his or her best? How should the evaluation be scheduled?
• Will my child be overwhelmed by strangers in strange places? Would the evaluation be better conducted at home?
• Who will be conducting the procedures, and what are their roles?
• Are formal tests the best way to see my child's strengths and weaknesses?  Would more informal, play-based assessments be more effective?
• What calms my child the best, so that he or she can participate in the assessment?
• What should I bring to the assessment? Favorite foods, toys, videos of my child in various situations?

What Will be Included in the Assessment?

A variety of areas will be assessed, and the methods may vary. Parents will be asked to fill out checklists and provide much of the information.  They may wish to gather this information in advance and to bring their child's baby book to the assessment. A social worker may interview the parents about their concerns.

Play-based assessment consists of the parent and perhaps one of the professionals (an early intervention specialist) playing with the child, while other team members record observations and perhaps videotape the play.  Specific toys are brought out in order to observe the child's exploration, problem solving, pretend play, curiosity, and general reaction to the toys.

Formal tests might be used to measure areas such as: the child's receptive vocabulary (how many pictures he or she can point to as words are named) or developmental milestones he or she has achieved (crawling, walking, etc.).

An audiologist may perform a hearing test, an important component of the evaluation of the child with fragile X, as ear infections are common.

Occupational therapists may observe chewing and swallowing, grasp, states of alertness and overload, reactions to sound, light, and touch, and other sensory-motor and fine-motor areas.

Physical therapists may be watching for balance, gait, posture and movement.

Speech pathologists will be trying to determine both receptive (listening) and expressive (speaking) language levels.

What Happens After the Evaluation?

Following the evaluation, the multidisciplinary team, including the parents, meets to decide if the child is eligible for services.  If the child meets any one of the following three criteria, then he or she is eligible for services:

• Developmental delays in cognitive development, physical development, communication development, social or emotional development, or self-help/adaptive skills; Children with fragile X syndrome may have a variety of delays, ranging from mild to more severe. Many young children with fragile X have age-appropriate development in some areas.  They do not have to show delays in all areas to qualify for services. Knowledge of these delays and strengths will help in the planning of the child's program;
• A record of a diagnosed physical or mental condition which has a high probability of resulting in delay of development; If the child is already diagnosed with fragile X syndrome, he or she will qualify under this criteria. The family might also be referred for genetic testing, if the team suspects fragile X at this point;
• The child is regarded as being at risk for developmental delays if early intervention services are not provided.

The child does not have to be labeled as mentally retarded, speech-language impaired, or any of the other categories mentioned in IDEA.  The term "developmentally delayed" can be used until age nine, if a more specific label is not appropriate at this age.

What Happens After Eligibility is Determined?

After the infant or toddler is determined to be eligible for early intervention services, the team, including the parents, will meet to write a plan for addressing the unique needs of the child and family.  The plan is called the Individualized Family Service Plan (IFSP) and must include the following:

• Information about the child's current development;
• Information about the family's resources, priorities, and concerns;
• Outcomes expected, and how the family might make progress toward reaching the outcomes;
• Early intervention services needed to help the child and family reach the outcomes discussed;
• Statement about the natural environment in which services will be provided (home and community setting);
• Other services (such as speech therapy and occupational therapy);
• The dates and duration of services;
• Naming of the service coordinator;
• Transition plan for the child (into early childhood or preschool programs at age three).

The IFSP must be reviewed every six months, or more often if needed, and a formal evaluation of the IFSP is completed each year, as the infant or toddler grows and progresses. No services will be provided without the written consent of the parents.

For children with fragile X syndrome, team members need to be sure the IFSP involves collaboration among the persons who will work with the infant or toddler. For instance, speech pathologists need to work with occupational therapists to ensure that the child's sensory needs are considered when addressing feeding and talking. Speech therapists and early intervention specialists may work together to create augmentative communication devices (picture boards, etc.) for children who are slow in learning to talk

What Kinds of Intervention Services are Offered to Infants and Toddlers?

 Early intervention services may include:

• Family training, counseling, and home visits to help families help their babies and toddlers learn and grow;
• Assistance in getting services, such as medical assistance and social services, that will help the child and family;
• Social work, nutrition, nursing, or psychological services for the child or family;
• Occupational, physical, and speech therapy for the child;
• Parent/infant programs to encourage language, play, and sensory development;
• Planning and assistance as the child moves on to early childhood programs at age 3.

How Might Services be Offered to an Infant or Toddler?

Services for infants and toddlers and their families are designed with the families' lifestyles and needs in mind. Services may be offered in the home, where various professionals teach activities to the parents and/or caregivers and have them practice them between sessions (speech games, feeding ideas, massage, exercises, etc.).  Services may be provided in a center, where parents and children with a variety of special needs come together for goal oriented "play groups" or a variety of therapies.

For children with fragile X syndrome, it is important to establish a routine.  As a means to help anxiety of the child with fragile X and to make intervention most successful, the child needs to know what to expect.  The various therapists and teachers should establish a routine and provide visual cues to help children anticipate and follow the sequence.

For example, if the speech/language pathologist comes to the home every week, she may always bring a bag of toys. She may have a picture chart of her schedule to use with toddlers, providing a sticker after each activity.  The child learns to anticipate the games involved in bringing out and talking about each toy, looking at books and pointing to pictures, blowing bubbles (for oral motor strength), and eating a cookie or cracker (to work on chewing and swallowing).

What Types of Goals are Appropriate for Infants and Toddlers?

Goals vary greatly, depending upon the individual levels of development of each child. Goals are to be reexamined every six months with an infant or toddler and revised as necessary.

Physical goals might include those that help with low muscle tone, including posturing and feeding. Physical and occupational therapists may both provide services in this area.

Occupational therapists and speech-language pathologists may contribute  ideas for oral-motor stimulation to help sucking, chewing, and swallowing.

Speech-language pathologists will help with receptive and expressive language goals, working on comprehension of language and means of expression, whether verbally or with augmentative devices (such as pictures, language boards, or signs).

Occupational therapists will help with a variety of sensory issues that face many children with fragile X: sleeping problems, irritability, and over sensitivity to touch, noise, crowded rooms, and certain lights.

Early intervention specialists can help design goals to stimulate early play and cognitive development. 

Social workers and psychologists should be available to help the family cope with the diagnosis and intervention needs.

What if a Parent Disagrees With any Aspect of the Early Intervention Services?

Parents and family members should be provided with written copies of their rights under early intervention law.  Parents should have copies of all written records and must give written consent for assessment and placement of their child. Parents and professional may first try informal problem solving, if a placement does not seem to be effective in helping the child make progress. If agreement cannot be reached at the informal level, then the parents or professional involved may seek mediation to help guide the parties on resolution of the dispute. If mediation is unsuccessful, then parents and service providers have the option of seeking a due process hearing.

What Happens When the Child Turns Age 3?

As the child with fragile X nears the age of 3, parents and professionals must be sure the IFSP addresses a transition plan. Children become eligible for early childhood education or move into preschool programs at age three.  New evaluations must be completed to help make decisions regarding most appropriate placement, but the existing IFSP can be used for goal setting, if the parents agree. At the time of this transition, families need to explore and visit the options available. School systems may offer a variety of services for preschoolers with special needs.  They may offer some special education within a regular preschool class. They may also have early childhood special education classes, where all of the children have some type of developmental delay or disability. For the child with fragile X, parents need to look at the setting, services, and personnel involved in the early childhood program.  Multidisciplinary services offered in a structured, calm setting, with an established routine, many visual cues, and provision for calming places and activities are all important for the preschooler with fragile X.

Gail Harris-Schmidt, Ph.D., CCC-SLP
Saint Xavier University
Chicago, Illinois

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