Early Intervention for Infants and Toddlers with Fragile X Syndrome

The Early Intervention Process

The Early Intervention Program for Infants and Toddlers with Disabilities is the program known as Part C of the Individuals with Disabilities Education Act (IDEA). It is also known as Child Find.

Part C is a federal grant program that encourages states to set up programs for young children with disabilities and their families. Currently, every state has a Part C program.

To find a program near you, talk to your child’s doctor or call your local public school.

Every state is set up a little differently. The National Early Childhood Technical Assistance Center (NECTAC) maintains a list with the contact information for State Part C Coordinators by state.

Referral to Part C

Parents can request a free evaluation if they are concerned about their child’s development. Other people can also make this request on behalf of parents, but no evaluation or services can take place without parental consent. This aspect is optional for states.

 

Screening of the Child

This is a quick look at how your child is developing. Your child’s doctor can do this. This is an optional activity for states.

 

Assignment of a Service Coordinator

The service coordinator is responsible for implementing the IFSP and will work with the family while they receive Part C services.

 

The Multidisciplinary Evaluation and Assessment

The evaluation and the assessment are often done at the same time.

 

The Multidisciplinary Evaluation

  • In order to determine the child’s eligibility for services, a multidisciplinary evaluation takes place by a team that may include speech-language pathologists, audiologists, occupational therapists, physical therapists, psychologists, social workers, and early intervention specialists.
  • A variety of procedures are used to determine if the child is eligible for services. They include observations, tests, interviews, play-based assessments, checklists, and other items.
  • A diagnosis of Fragile X syndrome may enable the child to receive services without an evaluation.

 

The Multidisciplinary Assessment

  • Once eligibility is determined, a multidisciplinary assessment is completed that may include the same people who did the evaluation.
  • An audiologist may perform a hearing test, as ear infections are common in this population.
  • Occupational therapists may observe fine motor areas such as the grasp, states of alertness and overload, reactions to sound, light, and touch, and other sensory-motor areas.
  • Physical therapists may watch for balance, gait, posture and movement issues.
  • Speech pathologists attempt to determine both receptive (listening) and expressive (speaking) language levels. If the child is not yet talking, the speech pathologist may try to determine language comprehension using augmentative language devices (picture boards, etc.).

 

Parent Preparation

  • Parents are an integral part of the team, and their input is vital. Parents need to make the team aware of conditions that will help lessen anxiety— such as making the environment calm and free of distractions and sensory overload.
  • The assessment may take place in the child’s home, where the team member brings toys and test materials for administration in a familiar environment. It can also take place in a school or special education center, with the parents and professional team members participating.
  • 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 more about Fragile X syndrome than some of the professionals on the team. Parents may wish to bring brochures about FXS, the website address of the NFXF, and other materials to share with and educate team members.

 

Questions to consider prior to the assessment

  • What time of day is your child at his or her best?
  • Will your child be overwhelmed by strangers in strange places? Might it be preferable to conduct the assessment in your home?
  • Who will be conducting the procedures, and what are their roles?
  • What types of tests will they use, and what do they measure?
  • Are formal tests the best way to determine your child’s strengths and weaknesses? Would more informal, play-based assessments be more effective?
  • How long will the assessment take?
  • What helps calm your child to ensure his or her participation?
  • What should you bring with you? Favorite foods, toys, videos of your child in various situations?

 

The Individualized Family Service Plan (IFSP)

This is a written plan that details the early intervention services.

  • The IFSP must be created within 45 days of the referral, be reviewed every six months or more often if needed, and formally evaluated on an annual basis.
  • No services are provided without the written consent of the parents.

 

Preparing the IFSP

  • After the assessment, a meeting is held with the parents and all the professionals involved. The team will present test results, including scores, observations, and recommendations for services.
  • Parents may be surrounded by a variety of special educators and may be intimidated and hesitant to contribute to the discussion. However, given that parents know their own child better than anyone and may extensive knowledge of Fragile X syndrome, should approach the meeting as partners in decision-making, not as recipients of the special education team’s decisions.
  • Parents should also bring their lists of concerns for their child and ideas for goals.
  • The team, including the parents, will write a plan for addressing the unique needs of the child and family. This document is the Individualized Family Service Plan.

 

IFSP Content

  • Description of the child’s current development.
  • The family’s resources, priorities, and concerns.
  • Outcomes expected, and how the family might make progress toward reaching them.
  • Services needed to help the child and family reach the outcomes discussed, including length, duration, frequency, intensity, and method of delivering the recommended services.
  • Statement that the service is provided in the natural environment to the extent possible.

 

Possible Early Intervention Services

  • Assistive Technology
  • Audiology
  • Family Training, Counseling, and Home Visits
  • Health Services
  • Medical/Nursing Services
  • Nutrition Services
  • Occupational Therapy (OT)
  • Physical Therapy (PT)
  • Psychological Services
  • Respite Care
  • Service Coordination
  • Social Work
  • Special Instruction
  • Speech-Language Pathology (SLP) Services
  • Transportation
  • Vision Services

 

Types of Goals for Infants and Toddlers

  • Physical therapy goals might include those that help with low muscle tone, including posture and feeding.
  • 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 help with a variety of sensory issues such as over- sensitivity to touch, noise, crowded rooms, and certain lights. They can also help with sleep issues.
  • Occupational therapists and speech-language pathologists may contribute ideas for oral-motor stimulation to help sucking, chewing, and swallowing.
  • 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.

 

Where Services Are Provided

  • The services should be provided in the child’s natural environment, including the home and community environments that are typical for infants and toddlers of the same age who do not have a disability.
  • The family can provide information where their everyday activities occur. For example, natural environments can include the home, neighborhood, parks and recreation centers.
  • When services are offered in the home, various professionals can teach activities to parents and/or caregivers and have them practice with the child between sessions (speech games, feeding ideas, massage, exercises, etc.).
  • For services not provided in natural environments, the IFSP must state why.

 

How Services May Be Provided

  • 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 delayed in learning to talk.
  • For children with Fragile X syndrome, it is important to establish a routine with all provided services. This helps greatly in reducing their anxiety.
  • The various therapists and teachers should also provide visual cues to help children anticipate and follow the sequence of their visits. If the speech/language pathologist comes to the home every week, it can be helpful if she or he always brings a bag of toys or a certain stuffed animal. This helps your child identify and anticipate the visit. When the therapist maintains a specific visual schedule, the child learns to adapt and participate more readily.

 

Family Rights

  • Parents should be provided with written copies of their rights under Part C.
  • Parents should receive copies of all written reports and records.
  • Parents must give written consent for the child’s evaluation and prior to the child receiving services.
  • If parents have a concern or complaint, they should talk to their service coordinator and the service provider.
  • If resolution cannot be reached at the informal level of discussion, then the parents or professional involved have formal remedies of mediation, including the filing of complaints and an administrative hearing, if needed.

 

Additional Information

Download the model IFSP form published by the U.S. Department of Education.

Model IFSP Form

Additionally, the NECTAC provides a listing of State Examples of IFSP Forms and Guidance.

 

Transition Plan at Age 3

 

Requirements

  • A transition plan must be developed for the child as part of the IFSP no later than 90 days prior to the child’s third birthday to ensure the smooth transition into Part B services.
  • At age 3 the services a child with a disability receives are provided by the preschool programs through the local school district—also known as Part B of IDEA. There is also an eligibility process at this stage if parents want their child to start or continue receiving services.

 

Ideas for Parents

  • At the time of this transition, families need to explore and visit available options for their child’s educational services. 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 FXS, 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 FXS.

 

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