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Elementary School Age Children with Fragile X Syndrome

What Does the Individuals With Education Act (IDEA) Offer to School-Age Children (Kindergarten Through High School)?

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) for children through age 21, or until they graduate from high school. For children and adolescents with fragile X syndrome, a variety of services and programs should be available.

What Happens After Early Childhood Programs End?

Once most children enter kindergarten, they leave the early childhood system for their kindergarten through high school programs. If children have been in early childhood for three years, they will need a reevaluation before placement decisions are made for elementary school. For children entering special education programs for the first time, an initial evaluation is required.

Are the IEP Requirements Different for Early Childhood and School-Age Children?

No, the IEP still includes the same components. 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 Assessments Will a Child Need for Elementary School?

The purpose of assessment is to accomplish two things: To determine if the child is eligible for special education services (based on current levels of performance, strengths and weaknesses, and rate of learning), and if, so, to determine his or her educational needs and the services that should be provided through regular and special education. If the child has been in early childhood special education programs, the assessment might consist of a progress report and update. If a child is new to special education, a complete case study evaluation will be conducted

What Might be Included in the Assessment?

This initial or reevaluation may include observations, checklists, and other informal measures, in addition to, or in place of, formal standardized tests. The assessment should be multidisciplinary, with team members from a number of disciplines participating.

Parents will be asked to fill out questionnaires concerning their children's behaviors, skills, and needs, as seen from the home. Parents can provide vital information, as well, about their children's interests, as an educational plan that includes the interests and hobbies of a child with fragile X can be very effective. Parents should also plan on providing information about fragile X syndrome, as many times they know as much or more than other team members about fragile X and its effect on their child.

School psychologists may want to administer individualized intelligence (IQ) tests at this time. Some IQ tests are more appropriate than others for children with fragile X. For example, the Kaufman Assessment Battery for Children (K-ABC) includes both simultaneous and sequential tasks. Since children with fragile X are often better at simultaneous processing, the Kaufman may be a way to show some of their strengths as well as weaknesses. Some achievement testing may be given, to see where the children's readiness levels are. Many children with fragile X show strengths that are not tapped by formal, standardized tests, so informal testing and other forms of information gathering are vital.

What Happens With the Results of the Evaluation?

After the child is evaluated, the team meets in a multidisciplinary staffing to discuss the results. Often, the IEP is also developed at the 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. 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 who qualify for special education services may be labeled other health impaired (based on the genetic diagnosis), speech or language impaired, mentally retarded, or learning disabled, or they may have multiple designations (e.g. other health impaired as the primary diagnosis, and speech-language impaired as the secondary). The multiple labels can help assure that the child will receive all the services to which he or she is entitled.

What is an Individualized Education Plan (IEP) for an Elementary School Age Child?

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

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. These terms are expanded upon in the section titled Intervention. The importance of the services of a speech-language pathologist and an occupational therapist will be discussed in the that 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.
   
• 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.

What Special Considerations Should the IEP Include for an Elementary School Age Child?

It is very important that the IEP, particularly for boys with fragile X syndrome, be developed and implemented by a multidisciplinary team with a multidisciplinary approach. The occupational therapist and speech-language pathologist should be able to work together to design programs, such as social-motor groups.

Considerations about the setting for education are important, not only in thinking about the least restrictive environment, but also in addressing sensory needs. Boys with sensory overload characteristics need to be in settings that allow for quiet spaces, time to pull back from the entire class, and materials for calming. (See the section on occupational therapy for more complete descriptions of needs and intervention strategies).

In choosing inclusion classrooms, parents and school personnel need to seek out those regular education teachers who are calm, structured, and attuned to individual needs. A teacher who follows a regular schedule and provides visual cues for transitions may be very helpful to the child with fragile X.

A language-rich environment is also important for boys with fragile X syndrome. Such boys may be able to imitate good role models for conversational skills. 

Girls with fragile X may require resource room services for assistance in math skills and work with a speech-language pathologist for pragmatic (conversational) goals.

What Kinds of Goals are Appropriate for Elementary School Age Children?

Goals should be designed for all areas of need: academic, social, behavioral, communication, and sensory-motor. Each of these may be affected by the others, such that a multidisciplinary approach will be the most effective.

Goals that emphasize the child's learning style and strengths are also vital. The recognition of the etiology of the child's special education needs will help teachers and therapists design a plan that fits the individual child. 

Academically, many children with fragile X syndrome learn better when material is presented in a holistic (or simultaneous) manner, rather a sequential one. For example, they learn to read better with a whole word approach than with a phonics method. Logos and pictures are also helpful visual cues for word identification.

Children with fragile X may learn spelling words better as entire units, then perhaps in syllables, rather than sound by sound. Math goals should also be presented in very visual and tactile manner, with real object counters, size and shape manipulatives, touch math, and concrete examples.

The IEP goals must also address the social-emotional needs of the child with fragile X syndrome. Speech-language therapists can work on pragmatic (conversational) skills in social groups, and the social worker can help other children with strategies to be friends with the child having fragile X syndrome. Social-emotional development may be enhanced by careful consideration of the learning environment. 

Occupational therapists can be sure there are appropriate settings and equipment for a calm, structured learning environment. Behavioral plans can include goals, rewards, and consequences for appropriate behavior. Visual cues (e.g. hand over the mouth for "Quiet mouth") and calming activities can lessen the inappropriate behaviors of children with fragile X syndrome.

Communication and sensory motor goals may be addressed together at times. Speech-language pathologists and occupational therapists have ideas for oral-motor stimulation and may work together, helping the child to chew on gum, fruit snacks, and hard, crunchy foods, rather than his hands, clothes, or backpack straps. Social-motor groups can be designed to incorporate movement into role-playing activities. Board games and computers might be used for turn taking, communication, and fine motor skills.

For girls with fragile X syndrome, both social-pragmatic and math goals may need to be addressed. Speech-language pathologists and learning disabilities teachers may be part of the team to work in these areas.

What are Some Important Teaching Strategies?

Teaching strategies, which should be built into the IEP for school-age children, include:

1. Awareness of learning style: Use of simultaneous processing activities;

2. Whole word methods for reading and spelling;

3. Visual cues, including pictures, sign language, logos, and words;

4. Concrete, high interest examples and materials;

5. Modeling and imitation, for both behavioral and communication goals;

6. Integration of self-help goals with language and motor goals (eating, dressing, toileting);

7. Inclusion of functional skills, along with academic;

8. Highly structured, predictable routines, with visual cues for changes in expected events;

9. Opportunities for calming.

What Related Services are Available for Elementary Age Children?

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.

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 speech and language, refer for medical assessment when necessary, and provide therapeutic services;

14. 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.

What Kinds of Service Delivery Models are Available to Elementary School Age Children?

Special education services for children in elementary, junior high, and high school may be delivered in a variety of locales by a team of teachers and therapists. Each child's IEP should state that the placement is the least restrictive environment for that particular student.

A school district should offer a continuum of placements, from regular classrooms, through resource and self-contained special education classrooms, to special schools. At the high school level, the placements might include vocational training or work-study settings in the community.

With any setting, placement decisions are discussed at the annual staffing, and more often if needed. Placement at one level during a particular academic year does not mean that the child will always be in that placement type. Parents should visit settings that are offered as options, in order to be ready to advocate for the setting they believe is most appropriate for their child.

What is Available and Appropriate in the Continuum of Services?

For children with mild to moderate needs, the general education classroom may be appropriate, with modifications for the individual needs of the child. Service delivery in a general education classroom might include speech and occupational therapy with small groups of students in the room, academic modifications and behavioral goals by the special education teacher, and implementation of the goals and strategies by a paraprofessional or aide.

Some children with fragile X syndrome benefit more from small classroom settings and more intensive special education service. If a child attends a special education room for 50% or less of the day, he or she is considered to be in a "resource" room setting. Some speech-language pathologists and occupational therapists like to pull children out of their larger classes for a period of intense one-on-one work or small group intervention. The occupational therapist might be able to use special equipment or provide calming time in a setting other than the regular classroom. Speech-language pathologists may role-play conversational strategies in small settings, with "assignments" back in the regular classroom. Reading or math might be taught in a resource room by a special education teacher.

If children are in a special education room for more than 50% of the day, the setting is called a "self-contained special education" class. Children might be grouped with others by disability level and might rejoin their regular education peers for such subjects as art, music, gym, and lunch. All of the children in a "self-contained" room would have IEP goals, and the teacher, aides, and therapists would work with the implementation of those individualized goals. Children with fragile X syndrome might be recommended to self-contained settings because of behavioral issues, intense academic needs, or lack of comprehension in the regular education classroom.

Sometimes self-contained rooms offered by a public school district are not in the neighborhood school, but rather in another within the district. The district might fund only one classroom for those with moderate mental impairments or social-emotional needs, and that classroom may not always be housed in the local, neighborhood school. The multidisciplinary team must always justify why such a setting is still in the "least restrictive environment" for a particular child.

Finally, children may be taught in separate, private schools. For some children with fragile X syndrome, the public school setting does not offer an "appropriate" educational setting. In order for a child to be placed in a private school, the IEP must state why neither the local public school nor the district level special education options are appropriate.

With any setting, placement decisions are discussed at the annual staffing, and more often if needed. Placement at one level during a particular academic year does not mean that the child will always be in that placement type. Parents should visit settings that are offered as options, in order to be ready to advocate for the setting they believe is most appropriate for their child.

How Does an Inclusion Model Work?

While IDEA mandates the "least restrictive environment" and inclusion with children in regular education as much as possible, it does not mandate "full inclusion" for every child. Full inclusion is usually defined as the delivery of services in the regular classroom. Children with fragile X syndrome would receive their adapted curriculum work, speech-language therapy, occupational therapy, and other therapies within a regular education classroom. They might have a paraprofessional or aide sit with them to help implement the goals of the IEP. Special educators and therapists come to the regular education classroom to provide services, sometimes teaching small groups of regular and special education students.

Those who advocate for "full inclusion" believe that the social interactions with regular education students are vitally important. They believe that special services can be provided in the context of the regular classroom. For children and adolescents with fragile X syndrome, this setting provides the opportunity to model the behaviors and actions of others.

Those who see "full inclusion" as inappropriate for some children with fragile X syndrome cite the need for small, calm spaces with one-to-one or small group contact. A resource room may provide a needed break from the level of noise, light, and intensity of the regular education classroom. A special-education room, whether in the public or private school, may provide more intense, multidisciplinary intervention. If a child is placed in one of these settings for part or most of the day, opportunities to interact with regular education peers must be provided as much as possible. The IEP must state how this will occur or why it is impossible.

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

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.

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

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