What you need to know
It is important to have HIGH LEARNING EXPECTATIONS for children who have Sotos Syndrome. Encourage use of the core educational curriculum and modify it in order to meet the individual needs of the child.
Individuals with Sotos have a wide degree of variability in cognitive and adaptive function with the majority of individuals in the mild to moderate range of intellectual disability. Individuals often have difficulties with speech and language, particularly in expressive language and articulation. The level of intellectual impairment remains stable throughout life. Individuals with Sotos often look older than their age, therefore it is important to remember their age and treat them as such.
Most individual with Sotos have a delay in developmental milestones. This includes delays in walking and talking. Clumsiness, lack of coordination, low muscle tone (hypotonia) and lax joints are common. Physical and occupational therapy may help gross motor and fine motor skills. Activities that require good hand eye control (i.e. writing, drawing, and painting) may present difficulties.
Mathematics often causes difficulties for children with Sotos, as they are unable to understand abstract concepts and have problems with spatial awareness, sequencing, proportions, and time.
What you can do
- Help with organization.
- Present information in concrete manner.
- Repetition will help children remember basic facts.
- Verbal explanations are often more effective than visual demonstrations, diagrams and models.
- Provide information in brief, organized, and specific manner.
- Simplify information presented on worksheets.
- Tasks like copying letters and figures takes longer.
- Geometric designs may be difficult.
- Written homework may need to be modified.
- Consider having child work with an occupational therapist.
- A step-by-step approach is most effective paying attention to the student’s abilities.
- They may have difficulty remembering locations of objects in space (i.e. number lines may be ineffective).
- Math fractions, geometric shapes and formulas are hard.
- Individuals need help lining up numbers to do calculations.
- Poor executive function can lead to difficulties in calculations requiring more than one step.
- Word problems may be challenging.
- Ensure the child has a reliable way to communicate
- Speech and language therapy and supports that is individualized to the child may be helpful
- Develop gross motor abilities
- Improve strength
- Assess modifications and adaptive equipment for school and home
- Fine motor
- As needed, to help with emotional support
You may want additional information about your child’s disability, early intervention, school services, therapy, local policies, transportation, and much more. Every state in the USA has at least one Parent Training and Information Center (PTI) to offer families just this kind of information. To find your state’s center, go to the Center for Parent Information and Resources.