What you need to know
Mobility problems, hearing loss and vision difficulties are the major medical complications in MPS that may need the special attention of school personnel in program planning. Each child with MPS may need specific education supports, some are physical and some are learning. It is important to discuss the child’s individual’s needs. Many of these conditions are progressive. It is important to have high but realistic expectations for each child.
Consider therapists and specialists to consult and support classroom teacher:
- Physical therapy
- Occupational therapy
- Speech therapy
- Vision therapy
- Musculoskeletal support
- Treatment for prevention of scoliosis related complications
- Alternative communication and supports
- Paraprofessional support may be needed
- Nursing support as needed
What you can do
Vary support to meet the needs of the individual child who has an MPS disorder.
- Incorporate typical language skills in social, work, and life skill areas.
- Children with speech and motor difficulties often benefit from speech and occupational therapy.
- Teach learning strategies for non-verbal communications.
- Consider new technology, computers, and sign language. Incorporate early use of augmentative communication aids such as picture cards or communication boards.
- Communication should work with child’s desire to socially interact with others in natural settings.
- Make sure children have opportunities for choice and control in their lives (choose colors, clothing, play, work partner, etc.)
- Consider multiple means of communication paired with the knowledge of when to use one method vs. another.
- Find AAC system that allows for maximal social reciprocal communication.
- Encourage finger pointing early to help with device use as they age.
- All persons interacting with the child should have education and training on how to encourage reciprocal communication with the device.
- Model, model, model use of the AAC device to encourage its use
- Continue with strategies that improve oral control to maximize their potential as oral speakers.
- Consider a team approach, such as an OT or PT to consultant to work with the SLP for optimal positioning to get the most benefit from hand use for communication.
- Consider vision specialist to gain insight into best visual field for communication devices.
- Seat child close to board
- Use a larger font
- Appropriate amplification and/or assistive technology
- Hearing aids
- Cochlear implants
- FM systems
- A favorable acoustic environment where noise is eliminated or reduced
- It is important to find the balance between providing help and fostering autonomy.
- Individuals should be encouraged to the maximum extent possible to live independent productive lives with adaptive or adjustments assistance.
- An IEP or 504 plan may be in place for safety and comfort in the class and school.
- Adaptive aids in school may be required for:
- Heavy doors
- High doorknobs
- Reaching for blackboard
- Extenders
- Stools (if safe)
- Desk size
- Bathroom
- Encourage use of regular bathroom with adaptations as necessary
- Use nurse’s office with a permanent step only if necessary
- Carrying books may be challenge
- Two sets of books; one for home one for school
- Friend helper
- Low locker
- Rolling back pack
- Allow extra time to travel between classes/use elevators
- May need stool to rest legs on
- Ensure best fit of desk and chair
- Legs may fall asleep if left to dangle
- Upper legs are too short to allow back support pillow for back support
- Occupational therapy and/or accommodations for writing
- Individuals may have small fingers and joint hypermobility due to stiffness
- May not be able to write at a quick enough speed
- Consider tape recorder for class
- Use computers/iPads
- Additional time for tests or provide oral exams
- Patients who begin to lose mobility due to weakened muscles may also benefit from physical therapy.
- A customized exercise and/or physical therapy program may help to preserve range of motion and strength
- Use of assistive devices such as orthotics, canes, or walkers may help with ambulation.
- A wheelchair may be indicated.
- Ataxia (difficulty coordinating smooth motor movement)
- Unstable or non-walking children may benefit from physical supports in the classroom.
- They may need extra supports/people to help them in their academic program and inclusion.
- Individuals with motor issues may need extra space and/or minimal obstructions to be safe.
- Physical therapy
- Adaptive chairs or positioning support may be helpful
- Occupational therapy
- May help with fine motor and oral motor control