What you need to know
It is important to have HIGH LEARNING EXPECTATIONS for children who have Fragile X. Encourage use of the core educational curriculum and modify it in order to meet the individual needs of the child.
People who have Fragile X syndrome vary in their learning needs and cognitive abilities. Challenges vary between boys and girls.
Children who have Fragile X can be included in their neighborhood schools. They may do well when extra supports are provided. Being with their peers is good for developing social and communication skills. Their team can make decisions about the need for specific teaching and pace.
Complete developmental and educational assessments (including speech and language evaluation and occupational/physical therapy evaluation) are recommended for planning. A multidisciplinary team and approach is helpful.
- Integrated teaching approach
- Support for developing friends
- Occupational therapist and speech therapists work together to design programs such as social-motor groups.
- Special education and anticipatory management. For example, avoidance of too much stimulation may prevent behaviors.
- Goals that emphasize the child’s learning style and strengths
- Concrete, high interest examples and materials
- Recognize need for individual attention, small class size, and avoidance of sudden change
- Modeling and imitation for both behavioral and communication goals
- Highly structured, predictable routines with visual cues for changes in expected events
- Inclusion of functional skills, along with the academic skills
- Self-help goals integrated with language and motor skills (i.e. eating, dressing, toileting).
- Occupational therapists ensure appropriate settings and equipment for a calm, structured learning environment. Use of special chairs, postural supports, etc. may be helpful.
- Cognitive abilities range from typical, to learning disabilities, to intellectual disability. Males with a full mutation may have more pronounced cognitive issues than females with a full mutation.
- Fragile X Syndrome had been associated with delays in various aspects of language including: phonology (speech sounds), semantics (word meaning and vocabulary), syntax (word structure and grammar), and pragmatics (the functional use of language). (Roseberry-McKibbin & Hedge).
- They may have difficulty with social language skills including phrases, sentences, and staying on topic.
- Speech production may be fast or have a disordered rhythm. Verbal dyspraxia can result in unintelligible speech.
- Language rich environments are important. They provide good role models for conversational goals.
- Communication and sensory motor goals may be addressed together. Speech-language pathologists and occupational therapists have ideas for oral-motor stimulation and may work well together
- They may have difficulty with social language skills including phrases, sentences, and staying on topic.
- They may have difficulty with motor planning (praxis) and sequencing oral motor, gross motor, fine motor, and visual motor skills. Verbal apraxia can result in unintelligible speech.
- Children with Fragile X may have difficulty with gestures, eye contact, and symbolic play skills. These aspects, along with difficulties in making transitions, topic maintenance, and turn taking during conversation impact social pragmatic abilities. Intense speech and language therapy to remediate and focus on these skills is recommended.
- Speech may be difficult to understand due to errors in making the sound of speech and rapid rate of speech. Children have also been noted to have unusual rhythm and volume while speaking. Speech may sound “cluttered” as the child experiences difficulty planning the sequence of intricate movements needed to produce sounds and words.
- Language rich environments are important. They provide good role models for conversational goals.
In boys who have fragile X syndrome full mutation, there may be:
- A strength in verbal and memory for meaningful information in context (i.e. pictures)
- Difficulty with the pragmatics of conversation. This is affected by physical, oral motor attention and behavioral issues.
Girls with fragile X syndrome full mutation:
- Have many good verbal skills. However, they may have difficulty in pragmatic speech with anxiety and shyness affecting social interaction.
- May need to work with speech pathologist for conversational goals.
- May be beneficial to work in small groups on social language.
- People who have fragile X syndrome have executive function difficulties.
- Executive function difficulties affect planning, thinking flexibly, and understanding abstract ideas.
- This causes a struggle to remember, process, and organize information efficiently.
- This can lead to problems in mathematics and reading.
- Children who have fragile X syndrome often struggle to hold information in their short term memory.
- Executive function difficulties affect planning, thinking flexibly, and understanding abstract ideas.
- This causes a struggle to remember, process, and organize information efficiently.
- People who have Fragile X syndrome have significant visuospatial dysfunction, poor math attainment, and executive dysfunction.
- Difficulties can be seen in areas of nonverbal processing, visual-spatial skills, complex verbal memory, attention, working memory, visual-spatial memory, and math.
- Math learning difficulties include difficulty understanding and representing quantities, and getting the numerical meaning from symbolic digits.
- Individuals show adequate fact retrieval. Development of procedural strategies is delayed.
- Word problems are a weakness. They are challenging due to their procedural nature and difficulty in reading comprehension.
- Important to emphasize: math skills for achieving independence.
In males who have fragile X syndrome full mutation:
- Processing sequential information is a weakness and may affect math performance (i.e. counting).
- They have difficulty with one to one correspondence when counting, sequential processing, inhibition, selective and sustained attention.
Females with fragile X syndrome full mutation:
- May require special education supports in developing math skills.
- May have challenges with visual perceptual skills, such as recalling location.
- May have executive function difficulties including: working memory, inhibition, and/or sustained attention.
What you can do
- Keep distraction to minimum
- Use visual aids
- Teach using several short periods of time
- Use music, singing, and movement in instruction.
- Help with organization.
- Present information in concrete manner.
- Repetition will help children remember basic facts.
- Whole language based approach with high interest material has been successful for reading and spelling.
- Individuals may learn better when material is presented in a holistic manner rather than sequential one.
- Visual cues, including logos, pictures, and sign language are helpful.
- Use visual and tactile examples.
- Break down word problems to help with reading.
- Help children apply information they have learned to new situations.
- Use concrete examples.
- Help 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.
- Board games and computers might be used for turn taking, communication, and fine motor skills.
- Assistive technology
- For children with fragile X syndrome 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.
- Using a computer may help decrease frustration when writing.
- Foster association between numbers and quantities. This could include playing number board games.
- Communication and sensory motor goals may be addressed together. Speech-language pathologists and occupational therapists have ideas for oral-motor stimulation and may work well together.
- Otitis media may be common and ear infections should be monitored.
- Ensure the child is followed by a speech-language pathologist to assist with communication.
- help increase clarity of message
- help increase rate of speech, rhythm, volume, and articulation
- Early intervention is very important.