Educational Recommendations for Fragile X Syndrome: Elementary School

Attending elementary school may be the child’s first encounter with school. This experience can be difficult especially when separating from a parent for the first time. If the child was identified with special needs early, the child may have already learned a number of classroom behaviors necessary to access instruction. Others will be learning a variety of skills necessary to be successful at school. The emphasis at the elementary level is learning academic skills, which can be particularly frustrating if best practices are not incorporated into the process. This document lists a number of strategies and supports that have proven to be successful.

Much of the child’s day will be in a classroom with other students. The placement and interaction with neurotypical peers will be determined by the team at the staffing. Because children with FXS are often social and enjoy being included if only on the periphery, this time can be especially meaningful. For the individuals with Fragile X syndrome (FXS), that can include placement in a center-based program, resource program, or in a general education classroom with support staff, i.e., paraprofessional, speech-language pathologist (SLP), occupational therapist (OT), physical therapist (PT), or psychologist. (If needed, you can reference a glossary at the end of this page.)

The following provides information regarding legal educational policies and recommendations as well as promising practices for academic and adaptive functioning. It is important to note that school districts across the country vary in their interpretation and application of federal guidelines and policies. As such, it is important to use the contents of this document as recommendations.

Individualized Education Program (IEP)

An IEP is a legal document that guides a child’s specially designed educational program and services. The IEP is developed by a multidisciplinary team, which includes teachers, parents, and the student (if appropriate based on age). Based on the regulations set forth in the Individuals with Disabilities Education Act (IDEA), the plan must be reviewed and revised annually. However, parents or school personnel may request an IEP review meeting at any time.

The primary principles and components of an IEP are:

• Involvement of parents and meeting at a mutually agreed upon time.
• Parents receiving and understanding their procedural safeguards (parental rights).
• Providing children with disabilities a free appropriate public education (known also as FAPE).
• Collaborating with a multidisciplinary team that includes families.
• Determining a child’s individual strengths and needs through assessment and evaluation.
• Determining the child’s eligibility for special education based on one or more of the 13 disability categories from IDEA 2004 and individual state criteria (autism, deaf-blindness; deafness; developmental delay, emotional disturbance, hearing impairment, intellectual disability, multiple disabilities, orthopedic impairment, other health impairment, specific learning disability, speech or language impairment, traumatic brain injury, visual impairment (including blindness), and also children aged three through nine experiencing developmental delays).
• Establishing goals and objectives to meet the child’s individual needs.
• Identifying individualized accommodations and modifications so that the child can meet their goals and objective.
• Placing and educating the child in the least restrictive environment with their same-age, neurotypical peers to the greatest extent possible.
• Identifying special factors of the child that may include communication and language-based interventions for children who are emergent bilingual learners; children with visual impairments, including blindness, who may need Braille instruction; and/or the communication needs of the child who has hearing impairments, including deafness. Additionally, the child may need an assessment to determine if they require assistive technology services.
• Outlining the specific services that the child will receive that includes the type of service, service provider, start and end dates, and frequency of services.
• Prior written notice is a summary of the decisions made at the IEP meeting and given to the parents at the end of the meeting. It is the school districtʼs responsibility to ensure that parents understand the childʼs special education and related services.

Behavior Intervention Plan (BIP)

A behavior intervention plan (BIP) is an individualized plan designed to address behavior(s) based on the results of a Functional Behavior Analysis (FBA) (more on FBA below). The plan should include specific techniques and strategies that should be included in the IEP. Various components of these interventions may include changing the environment or setting events, increasing predictability and routines within the classroom, providing the child with choices, providing positive reinforcement for desired behaviors, and the use of social stories and visual schedules.[3]

Progress monitoring, data collection, and crisis intervention plans are important components of the BIP. Ongoing data analysis by a psychologist or behavior analyst should be conducted to evaluate if there is progress toward an increase in positive target behaviors or a decrease in challenging behaviors and to ensure that an ineffective plan does not continue.

Adaptive Physical Education (PE)

Adaptive physical education can assist students who experience fatigue or mobility issues and can help them develop leisure time interests. This may be in additional to physical education classes.

Counseling Services

School psychologists and counselors, and in some cases social workers, work with students to improve their behavioral adjustment and self-control. Counseling or psychological services often includes social skills development by creating opportunities for children with FXS to be included in with their neurotypical peers during small group lessons, lunch, recess, or other times during the school day.

Evacuation Plan

This is a written plan for staff to follow in times of emergency such as weather-related disasters, fires, and acts of violence. This plan directs each staff member to use procedures to evacuate individuals who are non-ambulatory, nonverbal, hearing and vision impaired, and/or emotionally stressed by the process. The plan should include procedures for people with intellectual disabilities who may respond in unpredictable ways during an emergency. Individuals should have an opportunity to practice the evacuation plan during a calm time.

Extended School Year (ESY)

ESY, or summer school, is intended for students with disabilities who have shown a significant regression of skills over school breaks and have not regained or recouped those skills after an extensive period of time. The providers must collect data over school breaks to determine if the child is eligible for ESY. ESY programs are typically implemented over a 4–6 week period of time over the summer school break. The child’s goals and objectives are addressed during the ESY program, but the teachers may not be the same teacher that they had the previous year or the teacher that they will have the next year.

Health Care Plan

The school nurse usually develops this plan by incorporating medical information provided by outside medical providers. Typically, the health care plan includes medication names, dosages and side effects. In addition, the plan usually lists treatment strategies for specific medical conditions such as seizures, blood disorders, or allergic reactions.

Occupational Therapy (OT)

Occupational therapy can be utilized to address adaptive functioning or self-help skills such as dressing, grooming, or feeding. Occupational therapy may be recommended to address fine motor difficulties related to handwriting. The occupational therapist will often consult to the team to help determine the need for compensatory tools and strategies (e.g., use of the computer and keyboarding skills) to optimize functioning.

Students with FXS may have sensory seeking and/or sensory avoidance behaviors, which can interfere with their ability to access the curriculum and learn in the environment. The OT will evaluate and may provide sensory processing intervention to address the symptoms of children experiencing hyperarousal and hypersensitivity to light, touch, sound, and movement. Sensory issues may also be addressed through environmental supports at school (e.g., adjusting the lighting in the classroom, reducing noise level).

Physical Therapy (PT)

Physical therapists generally focus on gross motor functioning, postural control, sitting, standing, and walking.

Social Skills Training

Social skills training and support may be incorporated into the curriculum through modeling and turn-taking with an adult or through structured peer group activities such as lunch buddies. Using a triad to contrive conversational exchange can be effective. In addition, using video modeling strategies has also been proven effective.

Speech-Language Therapy

Speech therapy may aid in the development of functional communication skills in order to improve a child’s pragmatic (functional) use of language. Communication skills may facilitate the building of improved peer relationships. Sometimes, students with FXS have oral motor delays, which can affect their ability to produce certain sounds and sequences of sounds. This can interfere with their speech production and intelligibility or articulation.

Augmentative and Alternative Communication (AAC): Alternative method of communication used for individuals with speech and language disabilities. AAC refers to all tools and strategies that are used to supplement or replace speech when it is not sufficient for the child’s needs. AAC includes high tech tools, such as tablet technology and low-tech strategies, such as picture communication, gestures, and sign language. Assistive technology (AT) refers to the technology tools, e.g., voice generated communication devices.

Pragmatic Language: Children with FXS may benefit from explicit instruction in social language. For example, they may need assistance using language for different purposes, adjusting language to meet the needs of the listener or situation, or following the rules of conversation.

Transportation

IDEA requires schools to provide transportation to and from school for children eligible for special education. Children are eligible for this related service if it is determined that the child’s disability affects their capacity to get to school or the child is placed in a school other than their home school.

Applied Behavior Analysis (ABA) Therapy

ABA is not a specific program but rather a behavioral framework from which specific therapeutic interventions (e.g., Lovaas therapy, verbal behavior, discrete trial, etc.) have been developed. As such, there may be wide variability from one ABA program to another. It is important to keep in mind that systematic instruction, careful ongoing assessment, positive reinforcement, and attention to the ABCs (antecedents, behaviors, and consequences) of behavior are essential aspects of any successful therapeutic program, regardless of whether or not it is designated as “ABA.”

Decisions about the appropriateness of ABA services for a child with FXS should be made after careful evaluation of the individual. Discrete trial training (DTT) and intensive table teaching (ITT) procedures may need to be less direct and may include another student to utilize peer modeling or turn taking. Staff working with these students should continue to glean ideas and potential strategies from well-established programs while keeping in mind the syndrome-specific characteristics associated with FXS (see Educational Strategies below).

Developmental Multidisciplinary Assessment

This refers to the assessment of developmental progress in the following areas: cognitive, physical and sensory motor, communication and language, adaptive, and social emotional skills. Information may be obtained from parents, teachers, and other professionals (e.g., speech therapists, occupational therapists, physical therapists). The assessment may include developmental history, observational checklists, and individual standardized assessments.

Functional Behavioral Assessment (FBA)

A problem-solving evaluation, typically conducted by a behavior specialist or school psychologist, designed to determine the underlying cause or function of a specific behavior as well as maintaining consequences. An FBA can be used to determine the best approach for reducing or eliminating undesirable behavior(s) and to increase prosocial desirable behaviors. A PBIS (positive behavioral interventions and supports) plan or BIP (behavior intervention plan) may be developed utilizing the results of the FBA.

Psychoeducational Assessment

Administered by certified licensed school psychologists, licensed psychologists.

Used to analyze the underlying cognitive processes that may influence a child’s educational performance. Children with FXS are often better at simultaneous processing than sequential processing; thus, instruments that assess both types of processing will provide helpful information regarding the student’s strengths and weaknesses. Educational testing is required every three years; however, the educational team may decide that further testing is not required. Using accommodations will enhance the validity of standardized measures by decreasing anxiety and hypersensitivity while simultaneously increasing engagement.[7] Please see the work of Thompson and colleagues (2018) for an in-depth discussion of using accommodations during standardized assessments for children with intellectual disabilities.

The following checklist and strategies may be useful to consider when planning a child’s educational future.

IEP/IFSP Checklist

Download this checklist.

• Include developmental, functional, academic, and non-academic goals (if needed). These goals are based on the needs defined in the narrative of the IEP/IFSP.
• Limit the number of goals (maximum of five is recommended) because too many can be overwhelming for children, parents, and teachers.
• Use strengths-based language and emphasize the positive, i.e., talk about what the child should do — “use a soft touch” — as opposed to what they should not do — “stop hitting.”
• Write functional, observable, and measurable goals in plain language (i.e., jargon-free) that focus on age appropriate activities that are generalizable across environments, people, and situations.
• If an augmentative communication device or assistive technology is provided, indicate that the equipment will be available for home use and that training should be provided for parents.
• Request that all service providers be present at the IEP meeting. The attendance of a general education teacher is mandated by IDEA (if inclusion services are provided).
• Include all services on the IEP (e.g., speech therapy 30 minutes per week).
• Ask for a draft of the reports prior to the meeting.
• Double-check for inconsistencies within the report.
• Make sure to document who is responsible for both implementing the interventions, as well as who will be responsible for monitoring the progress.
• Provide procedural safeguards, as required, to the parents at the time of the staffing.

Developmental and Educational Strategies for Children with FXS

Download this strategies list.

• Talk, talk, and talk to your child about what is happening during daily routines.
• Follow the CAR Activity:
  • Follow their lead in play or storybook reading
  • C—Comment on what they are doing/playing
  • A—Ask open ended questions
  • R—Respond by adding a little bit more
  • Wait time—count to yourself up to 10 seconds in between each of these steps
• Incorporate a holistic or simultaneous learning approach (i.e., use a whole word technique rather than a phonics method).
• Include visual cues to help children follow the daily routine in the classroom.
• Teach early math and science concepts using visual and tactile strategies, real object counters, size and shape manipulatives, and concrete examples.
• Teach early literacy skills through everyday literacy tools such as storybooks, environmental print, writing and drawing utensils, pictures, magazines, and oral story telling.
• Incorporate high-interest materials into all areas of the curriculum as needed.
• Use evidence-based interventions within a MTSS framework. These interventions should be based on the phenotypic profile of children with FXS as well as the individual profile of the child. This should include visually based interventions with limited language.
• Use routines based and relationship-based approach. Meaning that predictable routines and positive interactions between adults and children are imperative for healthy development.
• Utilize a family-centered approach.
• Avoid forcing eye contact or using “look at me” prompts.
• Use more commenting than questioning. Reduce direct questions and utilize a fill-in-the-blank format when possible.
• Model and teach play skills. Many children with FXS have dyspraxia, making it challenging to ideate, motor plan, and execute actions. This makes the development of play skills difficult.

Books Referenced in this Article

For more sources, see Notes and References.

• Early Childhood Assessment: Why, What, and How
• Essential Elements for Assessing Infants and Preschoolers with Special Needs, Pearson eText with Loose-Leaf Version — Access Card Package
• Transdisciplinary Play-Based Assessment: A Functional Approach to Working with Young Children
• Prevent-Teach-Reinforce for Young Children: The Early Childhood Model of Individualized Positive Behavior Support
• Dec Recommended Practices: Enhancing Services for Young Children With Disabilities and Their Families

ABA — Applied behavioral analysis

ABC chart — Antecedent, behavior, consequence chart

APE — Adaptive physical education

ASD — Autism spectrum disorder

AT — Assistive technology

BCBA — Board certified behavior analyst

BOCES — Board of Cooperative Education Services

BIP — Behavior intervention plan

BSP — Behavior support plan

DTT — Discrete trial training

EI — Early intervention

ESA — Educational Service Agency

ESY — Extended school year

FAPE — Free and appropriate public education

FBA — Functional behavioral assessment

IDEA — Individuals with Disabilities Education Act of 2004

IEP — Individualized education program

IFSP — Individualized family service plan

ITT — Intensive table teaching

LEA — Lead education agency

LRE — Least restrictive environment, a continuum of placements considered, beginning with the general education classroom with neuro-typical peers

MTSS — Multi-tiered system of supports

OT — Occupational therapist

Part B — Federal grant to states under IDEA for children aged 3 to 21 years

Part C — Federal grant to states under IDEA for children aged birth to 3 years

PBIS — Positive behavioral interventions & supports

Procedural safeguards — Parental and child rights

PT — Physical therapist

RTI — Response to intervention

SLP — Speech-language pathologist

UDL — Universal design for learning