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Early Childhood/Preschool for Children With Fragile X Syndrome

What Does the Individuals With Disabilities Education Act (IDEA) Offer Once a Child Turns Three?

At age three, children with special needs are eligible for early childhood programs. The Individuals with Disabilities Education Act (IDEA) provides for a free, appropriate, individualized education in the least restrictive environment (that is, as much as possible with children in regular education classes). Children with fragile X syndrome may receive services from special education team members in a preschool designed for children without such needs, or they may attend special early childhood programs, designed specifically for children with developmental delays.

Children who are moving from early intervention programs may already have up-to-date assessments completed.  Those who have not been in early intervention programs need an assessment (evaluation) before entering early childhood programs.

What is a Multidisciplinary Evaluation for a Preschool Age Child?

A multidisciplinary evaluation of a child age three through kindergarten consists of a variety of measures to determine eligibility for special education and the needs of the child.  All school districts must offer screenings for all children at age 3. The screening might consist of a hearing test, vision test, and language, cognitive, gross motor, and fine motor tasks.  A child who fails one or more of these areas is referred for a full evaluation.

If a child already has the diagnosis of fragile X and is coming from an early intervention program, he or she will likely skip the screening stage.  If he or she brings up-to-date assessment information, no further evaluation needs to be done, and the family can move on to the establishment of the Individualized Education Program.

If the child is first referred for special education at age three, either by failing some part of the screening, or by request from a parent, then a complete evaluation needs to be completed. 

What is Included in the Assessment?

As with infants and toddlers, an assessment does not necessarily include formal diagnostic tests in school settings by strangers.  Evaluation may consist of interviews with and checklists filled out by parents, play-based observations of the child, and standardized and more informal tests, given by a variety of professionals.

As with the infant/toddler testing, 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. If the child is not yet talking, the speech pathologist may try to determine language comprehension using augmentative language devices (picture boards, etc.).

Parents are an integral part of the team, and their input is vital. Parents of children with fragile X syndrome need to make the team aware of conditions that will make the assessment the most successful for their child.  This may include working with the team to structure calm, distraction-free situations, to avoid sensory overload, and to lessen anxiety.

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.  The assessment may take place in a school or special education center, with the parents and professional team members participating.

What Happens After the Assessment at the Early Childhood Level?

After the assessment, a meeting is held with the parents and all the professionals involved. This is called a multidisciplinary staffing. Everyone who tested the child contributes his or her results. 

Parents may be surrounded by a variety of special educators and may be intimidated about their contributions.  However, parents have more knowledge of their own child than any of the professionals and may have more knowledge of fragile X syndrome. They should bring their lists of concerns and ideas for goals, as well as literature about fragile X syndrome. Whether they come with a parent who has been through the special education process, a friend who can serve as an advocate, or simply information about fragile X to share, they should approach the staffing as partners in decision making, not as recipients of the special education team's decisions.

At the multidisciplinary staffing, the team will present test results, including scores, observations, and recommendations for services. They may recommend a label that they believe fits the child's learning and behavior profile. 

IDEA includes the following special education categories: autism, mental retardation, hearing impairments, deafness, visual impairments, speech or language impairments, serious emotional disturbance, orthopedic impairments, traumatic brain injury, specific learning disabilities, or other health impairments. A child may be defined as simply developmentally delayed until age 9, when a more specific category must be determined. Children with fragile X syndrome may be labeled other health impaired (based upon the genetic diagnosis), speech or language impaired, mentally retarded, or learning disabled, but they do not need to have these labels at the age of three, as test scores with such young children should not be seen as "set in stone".

What is Done With the Results of Testing?

Following the assessment and the multidisciplinary staffing, and once eligibility for special education services is determined, a meeting to write the Individualized Educational Program (IEP) is held.  This may be held at the same time as the staffing following the diagnosis or may be days later (within 30 days of the determination of eligibility for special education).

What is an Individualized Education Plan (IEP)?

The IEP is the foundation of the child's educational program and must be developed with care.  Parents are vital team members in writing the IEP and should bring with them to the meeting their priorities for their child's goals and objectives.

IDEA requires that each IEP have:

• Description of the child; Present level of functioning
• Goals and Objectives
• Related services to be provided
• Special education placement
• Time and duration of services
• Evaluation of the IEP

What are the Components of the IEP?

Each of these will be defined briefly:

• Description of child: Present level of functioning:  The first section of the IEP includes both demographic information about the child and a description of the child's strengths and needs.  Parents should be sure to include information about what the child can do, what his or her strengths are, and what learning style he or she presents (e.g. He needs visual cues for directions; he works best in small, quiet spaces). This section also includes results of the initial observations and testing.
   
• Goals and Objectives: Goals are written for the results that the team would like to see the child achieve during that year (annual goals). They are to be written in a positive, measurable way  (e.g. Given a picture board, Sean will make his needs clear to his teachers). Objectives are shorter-term benchmarks, designed to measure progress along the way to the goal.  They may include how much assistance the child is to be given, how accurate the child must be, how often a behavior is to be shown, etc.
   
• Related services to be provided: Related services supplement the activities provided in the classroom. These may include: Assistive technology (e.g., communication boards, computerized language devices, padded supportive chairs), audiology, counseling services, medical services (limited to certain diagnostic services), occupational therapy, parent counseling and training, physical therapy, psychological services, recreation, rehabilitation counseling services, school health services, school social work services, speech-language pathology, and transportation.
  
  For children with fragile X syndrome, a number of these services are often vital. All of these terms are defined in the Glossary and expanded upon in the section titled Therapy. The importance of the services of a speech-language pathologist and an occupational therapist will be discussed in the Therapy section.
   
• Special education placement: The most appropriate placement in the least restrictive environment (that is, as much as possible with regular education peers) for the child must be determined after the goals and objectives have been set up. Many school districts provide a range or continuum of placements, and the team's goal is to decide which is the most appropriate, in the least restrictive environment. The IEP must state how much time the child will spend in the general education classroom.
  
  At the preschool/early childhood level, placements can range from a nursery school designed for children in "regular education" with supportive services, to a classroom with a mixture of non-disabled children and those with special needs, to a classroom made up entirely of children with special needs. Besides children with fragile X syndrome, there might be children with a variety of speech and language delays and disorders, hearing losses, Down syndrome, autism, and other developmental delays.
   
• Time and Duration of Services: A date must be determined for the beginning of each of the child's special education services.  Each state has a limitation on the time allowed before services must begin. Duration of the services and the amount of time allotted to each must also be included (e.g., two hours of speech and language therapy weekly). Many services will be set up on an annual basis, but some might be for a short term (e.g. six weeks of social work assistance with the entire class in order to help with peer understanding of the child with fragile X syndrome).
   
• Evaluation of the IEP: If goals and objectives have been written in measurable ways, then regular evaluation can be carried out to learn how the child is progressing toward those goals. The law requires an annual meeting to review progress and goals, but most states now use "benchmarks" as often as four times a year to let parents know of the progress being made. If goals need to be adjusted, then the parents must be called in for an IEP update meeting.
  
  Reevaluation does not need to mean the administration of another battery of formal, standardized tests.  Evaluation may be through teacher observation, the development of a portfolio of the child's work, the use of checklists, and other descriptive means.

How is the IEP Implemented at the Early Childhood Level for a Child With Fragile X Syndrome?

For preschool aged children with fragile X syndrome, an IEP might include goals in any of the following areas: Language (for both comprehension and expression), self-help (toileting, dressing, eating), play skills, readiness (colors, numbers, letters), math (counting, sorting, recognition of sizes and shapes), behavior (cooperation, listening, following routines and directions), sensory-motor development (calming), fine-motor control (coloring, cutting), and gross-motor development.

The minutes mandated in the IEP may be provided in a number of ways. For example, an occupational therapist and a speech-language pathologist might come into the early childhood room twice a week and provide joint activities for the entire class (e.g., language and movement activities that tie in with the current story or theme in a classroom). Then, the speech pathologist might pull one child to the side of some specific work on a particular IEP goal.  The occupational therapist might provide deep pressure before the child begins writing and cutting activities and might show the early childhood teacher or aide how to provide calming techniques. All of these would be counted as "minutes" for the child.

It is important for parents to realize that the choice of service delivery model at the early childhood level does not mean the child will always be in that setting.  Some families may opt for an intensive language program designed for children with language delays at the early childhood level, with the plan that a more inclusive setting will be more appropriate at the elementary level.

What Related Services are Available for Children With Fragile X Syndrome?

The IEP should describe what Related Services are needed by the child in special education in order to benefit from the educational services.  These are supportive services that supplement the educational program. They can include such services as:

1. Assistive technology: Assistive technology is defined as equipment that helps the child improve his or her functional capabilities. For children with fragile X who are not yet speaking, the assistive technology might be picture cards, a language board, or a computerized, talking device.  For a child with low muscle tone, the assistive technology could be a special chair to help with positioning and posture. The school is responsible for both the purchase of the appropriate devices and the training of personnel to use them;

2. Audiology: Audiologists provide assessments to determine hearing loss in children, make referrals for medical intervention regarding hearing issues, provide auditory and speech/language services for those with hearing impairment, and determine the need for amplification. Because children with fragile X syndrome often have a history of middle ear infections (otitis media), their hearing should be carefully monitored. For children with fragile X syndrome, audiologists might also provide advice regarding amplification to improve attention and concentration;

3. Counseling services: School counselors work with students to improve their behavioral adjustment and self-control and may work with career awareness;

4. Medical services: Medical services under IDEA are limited to diagnostic services for the determination of whether medically related disabling conditions necessitate special education and related services;

5. Occupational therapy: Occupational therapists assess and treat disabilities in children that affect their daily life functioning. They work with sensory-motor, fine motor, oral-motor, and other skills to aid in academic, play, and daily living skills.  Occupational therapists are vital components of the team for children with fragile X syndrome; their role will be expanded upon in a separate section entitled Therapy;

6. Parent counseling and training: Counselors provide information about the child's disability, and provide referrals for support groups, financial assistance, and professionals outside the school system;

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

8. Psychological services: School psychologists are part of the multidisciplinary team and often administer the individual IQ test and other measures. They also consult regarding placement.  They may also provide psychological counseling for children and parents;

9. Recreation: Some children require adapted physical education or recreational therapy to assess and work with leisure and play skills;

10. Rehabilitative counseling services: For older children and adolescents, rehabilitative counselors provide assessments and advice regarding career development, vocational choices, achievement of independence, and integration into the workplace and community;

11. School health services: School nurses provide services such as the administration of medication, supervision of hearing and vision screenings, and monitoring of children's health;

12. School social work services: School social workers may prepare the social or developmental history of the child, provide counseling to the child or family, work with problems in the child's living situation, and coordinate community services for the child. School social workers may also work with classmates to help them understand the child in special education's disability;

13. Speech Pathology: Speech and language pathologists are part of the multidisciplinary team working with a child who has fragile X.  They assess receptive and expressive language, refer for medical assessment when necessary, and provide therapeutic services;

4. Transportation: IDEA requires that the schools provide transportation, with specialized equipment as needed, for children in special education.

15. Orientation and mobility services: This may include special chairs, posturing devices, etc.

How Might Services be Offered to Children in the Early Childhood Age Group?

At the preschool/early childhood level, placements can range widely. A child with fragile X syndrome might attend a nursery school designed for children in "regular education" with supportive services available to those with special needs.  A speech-language pathologist, occupational therapist, and special education aide might come to the preschool and provide services there. Some public school systems team with private preschools to offer "least restrictive" settings for children with special needs.

Another option might be a classroom with a mixture of non-disabled children and those with special needs.  Some public school systems may offer preschool classes to those with developmental delays and other special needs, and then include neighborhood children who have no such delays.

Some children with fragile X make the most gains in a classroom made up entirely of children with special needs. Besides children with fragile X syndrome, there might be children with a variety of speech and language delays and disorders, hearing losses, Down syndrome, autism, and other developmental delays. The classroom might be staffed by a team, including an early childhood special education teacher, speech-language pathologist, and occupational therapist.

Parents may visit the programs that are being recommended to them to see if they are "most appropriate" for their child. For children with fragile X syndrome, a structured, calm atmosphere, with a predictable routine is vital.  Visual cues and calming spaces (e.g., corners with bean bag chairs and audio tapes) are necessary for many children with fragile X. Children with fragile X benefit from modeling other children, so a setting that includes children at a variety of levels, including some at a higher functioning level than one's own child, may be most appropriate.

It is important for parents to realize that the choice of one type of placement at the early childhood level does not mean a child will always be in that type of classroom. A parent and multidisciplinary team members might opt for an intensive language stimulation program in a special education setting at the preschool age, with the plan that a more inclusionary setting may be appropriate in elementary school

What Rights do Parents and School Personnel Have if They Disagree With Each Other Regarding Assessment, Placement, or Services?

As with all levels of education covered under IDEA, both parents and school district personnel have the right to seek mediation or due process if they do not agree with each other regarding placement or IEP goals and services. Each state has specific policies to follow to request mediation, a process in which an impartial, trained third party reviews all records and interviews relevant personnel in order to find an agreeable solution to the disagreement. The mediator works with both the family and the school personnel to encourage their communication with each other. Mediation is usually quicker and less costly than a due process hearing.

If mediation is not successful, then families or school personnel may call for a due process hearing.  IDEA describes the due process hearing procedure for resolving conflicts regarding special education. It also describes the specific conflicts that may be resolved by this process. A due process hearing officer, chosen by both parties from a list provided by the state board of education, conducts the hearing. Parents and school districts may have lawyers and other witnesses present. Each state has its own rules and regulations regarding how a due process hearing is to proceed.  Parents should request copies of these regulations from the school or the state board of education.

If parents and schools continue to disagree after a ruling is made by the hearing officer, then either side may appeal to the state board of education.  The decision at this appeal level is final, unless either the parents or the school system bring a civil action in court.

What Happens When the Child Leaves the Early Childhood Program for Kindergarten?

Children may remain in early childhood programs for three or four years, usually until they are five to six years old. Then, they usually are reevaluated for kindergarten and elementary level programs, and the team must once again develop goals and decide upon the most appropriate placement in the least restrictive environment.

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

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