Early Childhood Developmental and Educational Guidelines for Children with Fragile X Syndrome

The early intervention (EI) program for families with infants and toddlers (birth to 3 years) with disabilities is Part C of the Individuals with Disabilities Education Act (IDEA) of 2004. The services in this federal law may include occupational therapy, speech-language therapy, and developmental, play, and behavioral interventions. Other services related to feeding, vision, or hearing may also be available. Services may occur within the child’s natural environments, which include the family home, child care program, or community settings (i.e., library, play group, playground). Services may be delivered by a transdisciplinary team, meaning that one primary provider will deliver all the services and then consult or collaborate with other team members with different areas of expertise as needed. The team members release their role to the primary provider so that the family is not inundated with many different providers at different times. The family and other care providers are an integral part of the team as the primary provider works closely with those individuals that spend the most time with the young child. The primary provider works with the family and other care providers to implement the strategies within the child’s daily routines. The primary document for families enrolled in their state’s early intervention program is called the Individualized Family Service Plan (IFSP). This document identifies the child and family’s strengths, needs, and functional outcomes and is reviewed every six months [4].

Also see: What is the Individuals with Disabilities Education Act (IDEA)?

Early childhood special education (ECSE) services are for preschool-aged children (3–5 years) with disabilities and implemented by public school systems. This program is Part B (Section 619) of IDEA. These services typically occur in preschool or child care environments with licensed teachers and an interdisciplinary team (e.g., early childhood special education teacher, speech-language pathologist, occupational therapist, school psychologist). The individualized education program (IEP) is the legal document that guides the child’s educational program and services. The IEP is developed by an interdisciplinary team including teachers, parents, and other professionals based on the child’s needs. Constructed on the regulations set forth in IDEA, the plan must be revised annually (parent or school personnel may request an IEP review meeting at any time). Critical components of the IEP include parent involvement, goals, and objectives related to the child’s current development and next steps, and intentional accommodations and modifications. Accommodations are strategies used by the teacher to “level the playing field” for children with disabilities and provide equitable access to the curriculum, meaningful participation, and adequate support. Examples of accommodations may include providing a visual schedule, extra adult or peer support, or breaks for movement [4]. Modifications are changes to the curriculum or expectations for the child, which may include simplification of tasks or altered schedules that are important for the success of children with FXS. [See IEP checklist at the end of this document].

The heart of the individualized program is a determination of need based on formal (standardized and norm-referenced) and informal (observations, play-based, authentic) assessments. The assessment and individualized plan or program provide the basis for goals, objectives, accommodations, modifications, and subsequent services that are necessary to meet the child and family’s needs and next steps [12, 13].

“Child find” activities are an IDEA requirement to locate and identify children (birth to 21) with disabilities. The screening and assessment processes associated with child find activities are at no cost to families and intended to be responsive to families’ needs and schedules. Some school districts have child find teams that are responsible for identifying and evaluating children birth to 5 years. They have the responsibility to use appropriate assessment methods to identify children and families’ strengths and needs. Child find teams are often transdisciplinary teams that use authentic play-based assessment methods to evaluate the child’s holistic development. Authentic assessment methods include a process to collect information about the child’s development through a variety of methods, including family interviews, direct observation, and facilitated play with the child with familiar toys, materials, caregivers, and during daily routines. Standardized and norm-referenced assessments are also used with young children to determine if they are eligible for early intervention or early childhood special education services.

Early Childhood Assessment

Assessments for young children with FXS should be an authentic process that happens over time, with familiar caregivers, in familiar environments (see previous two paragraphs). There are diverse types of assessments that can be used to measure the developmental progress of children in the following developmental domains: cognition, physical & sensory motor, communication-language, and social/emotional. Information may be obtained from a variety of sources, such as parents, teachers, and other professionals (e.g., speech therapists, occupational therapists, physical therapists) to understand the whole child. The assessment may include a developmental history, observational checklists, and specific formal assessment instruments. Some assessments are play based, others may be more formal. The purpose of assessment is to promote children’s learning and development, identify special services, and monitor progress [12].

Types of Assessments

• Observation: Watching children to know more about their development, learning, and behavior.
• Assessment: Ongoing process of observing, recording, and documenting a child’s actions, skills, and behaviors.
• Evaluation: Comparison of information gathered against a standard set of criteria.
• Interview: Information about how the child performs, strengths and needs as perceived from the parent or a provider can help round out the overall assessment and are sometimes formal interviews as part of Evaluation, or are used to supplement the Observation and Assessment.

Eligibility of Services

To determine the child’s eligibility for services, a multidisciplinary or transdisciplinary evaluation must first be administered by a team that may include speech-language pathologists, audiologists, occupational therapists, physical therapists, psychologists, social workers, and early intervention specialists. The disability category that most children with FXS may qualify for is called Child with a Developmental Delay. This disability category is for young children up to 9 years with a delay in one or more developmental delays. A diagnosis of Fragile X syndrome may enable the child to receive services without an evaluation because FXS is a diagnosis that has been shown through research to be associated with developmental delays and disabilities. Although, the team may want to complete a play-based evaluation to determine the child’s strengths, needs/next steps, likes and dislikes so an individualized and meaningful plan can be developed. Each state may have different criteria for disability categories and families should be aware of their state’s criteria.

Families are an integral part of a child’s development and the active participation of families in decisions related to their children’s assessment, intervention, and ongoing services are crucial. Each family’s culture, customs, and priorities should be met with trusting and respectful partnerships. Parents are considered a child’s first teacher, and therefore are an integral part of each step of the process. The DEC Recommended Practices (2014) identify three themes related to families that include:

1. Family-Centered Practices: Practices that treat families with dignity and respect are individualized, flexible, and responsive to each family’s unique circumstances; provide family members complete and unbiased information to make informed decisions; and involve family members in acting on choices to strengthen child, parent, and family functioning.
2. Family Capacity-Building Practices: Practices that include the participatory opportunities and experiences afforded to families to strengthen existing parenting knowledge and skills and promote the development of new parenting abilities that enhance parenting self-efficacy beliefs and practices.
3. Family and Professional Collaboration: Practices that build relationships between families and professionals who work together to achieve mutually agreed upon outcomes and goals that promote family competencies and support the development of the child.

These practices and themes should be intentional and ongoing.

Inclusive early childhood environments refer to any natural setting in which children without disabilities play, learn, interact with others, and develop relationships. These environments could be families’ homes, private child care programs, public or private preschools, or family child care homes. Community organizations are also identified as natural environments for all children, which include playgrounds, libraries, play groups, and community centers.

Recently, the U.S. Departments of Education and Health and Human Services released a policy statement about including young children with disabilities in early childhood environments. This policy supports the notion that children with and without disabilities benefit from interacting and playing together.

Inclusion in early childhood programs refers to including children with disabilities in early childhood programs, together with their peers without disabilities; holding high expectations and intentionally promoting participation in all learning and social activities, facilitated by individualized accommodations; and using evidence-based services and supports to foster their development (cognitive, language, communication, physical, behavioral, and social-emotional), friendships with peers, and sense of belonging. This applies to all young children with disabilities, from those with the mildest disabilities, to those with the most significant disabilities.

(U.S. Department of Health & Human Services and the U.S. Department of Education, 2015, p. 3).

Within all early childhood environments, it is important for teachers and families to think about strategies within the physical, social, and temporal environment so that young children with FXS have meaningful access, participation, and support in their environments. Quality inclusive environments start with a universal design for learning that means early childhood environments should be designed and planned for children with the most significant needs first and those accommodations will benefit all children. Research supports inclusion for children with and without disabilities.

The transition process indicates a change in services and environments for young children with disabilities and can be a very stressful time for families. There are many unknown factors because families have yet to experience this process. There are two transition processes that are relevant to early childhood. The first process is from early intervention (infant-toddler) services to early childhood special education (preschool) services. The primary change of this transition is the shift of focus from the family to the child and the delivery of services within natural environments (i.e., family home) to an educational setting. The second process is from preschool to kindergarten (school-age). The primary change of this transition is from play-based interventions to academic interventions. While these shifts are evident in many programs and communities, it is best practice to continue family-focused and play-based interventions throughout the preschool and early school-age years [4]. The following are some strategies that may help the transition process for children and families.

1. Visit the new school or program — Play on the playground, walk through the halls (with and without other children), check out the classroom, bathrooms, cafeteria, etc.
2. Collaborate with providers — Set up a meeting between the sending and receiving programs.
3. Collaboratively develop a transition plan — The team (i.e., families, teachers, and providers) discusses the child’s current skills, next steps, expectations, health, and safety factors within the new environment.

ABA — Applied behavioral analysis

ABC chart — Antecedent, behavior, consequence chart

ASD — Autism spectrum disorder

BCBA — Board certified behavior analyst

BOCES — Board of Cooperative Education Services

BSP — Behavior support plan

EI — Early intervention

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

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

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

RTI — Response to intervention

UDL — Universal design for learning

The following may be useful to consider when planning the educational future for the child.

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 (also 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