site logo

Education Supports

What you need to know

It is important to have HIGH LEARNING EXPECTATIONS for children who have Neurofibromatosis 1. Encourage use of the core educational curriculum and modify it in order to meet the individual needs of the child.

The information below comes from the Children's Tumor Foundation. Please see their pamphlets for more information:

Intelligence is usually within the normal range. However, about 50-60% of children with NF1 experience learning disabilities. A variety of learning problems including visual spatial performance and attention difficulties can be seen. Children with NF1 may require special education for learning, speech, motor, or psychosocial problems. Learn more.

Executive functioning and memory

Executive function (skills needed for purposeful, goal-oriented activity) is a common cognitive difficulty in individuals with NF1.

  • Working memory, planning, organization, and complex problem solving may be difficult.
  • Intellectual development, academic achievement, personality, social skills, relationships, and communication with others may be effected.
  • These difficulties impact all areas of learning, sometimes subtly.
  • Planning and organization difficulties may make it hard to decide on a starting point at school/home.  Children may be overwhelmed with projects.  They might be described as inflexible and concrete thinkers.

Attention:

  • Attention is one of the most frequent concerns of parents and poses significant challenges in academics and a child’s achievements.
Math learning difficulties

Math challenges can result from difficulties in reading and languages, visual perceptual problems, confused arrangement of numbers and letters, and difficultly with abstract information.

  • Word problems can be an area of weakness. Problems with many steps may place a heavy load on working memory (algebra, long division), comprehension, and language.
  • Difficulties can lead to math illiteracy later in life. This can affect daily living and vocational skills.
Motor and sensory abilities

Gross and fine motor skill delays are found in many children with NF1.  These may impact a child’s everyday life.  For example, it may be difficult to keep up with their peers on the playground, in sports, or in written tasks.

  • This can lead to coordination problems that can persist into adolescence.  They may find it hard to perform tasks that require skilled control of movements.
Communication

Language skills may also be an area of weakness. There can be difficulties with both receptive and expressive language. 

  • Some expressive language  difficulties may include difficulty:
    • Coming to a point, organizing speech, or finding the right word
    • Having a conversation
    • Recalling or retelling information
    • Completing oral and written assignments
  • Some receptive language difficulties may include:
    • Following directions
    • Understanding complex sentence structure
    • Understanding meaning and/or content of speech
    • Discriminating between sounds, understanding word meanings, and understanding lengthy or complex speech
  • Children may appear to be ignoring directions. They may not be able to keep up with classmates (academically or socially).
Reading

Children who have NF1 may have difficulty in reading (literacy).  This may lead to problems in math as well.

  • They may have difficulty with reading skills (i.e. letter recognition). 
  • Many children who have NF1 have a weakness in their ability to sound out words when reading. This is known as Developmental Phonological Dyslexia.  They may find it hard to learn phonics or rules about which sounds correspond to letters.
  • This can lead to lack of motivation, confidence, and self-esteem.
  • Subtle aspects of language, such as phonological awareness, can lead to problems with learning rhymes, or hearing sounds properly. This can cause difficultly in separating words into syllables and making individual units of sound.
Spelling
  • Children with reading difficulties often have spelling problems. 
  • Those with phonological dyslexia have problems with spelling because of the challenge of sounding out words.
Visual perceptual
  • Children who have visual perceptual problems have a hard time processing visual information.  They may struggle with spatial awareness tasks. These problems often go unnoticed.
  • They may have problems coordinating what they see with their motor skills (visual motor integration).
  • Visual perceptual problems may lead to problems with comprehension, following task instructions, copying, and handwriting. 
  • Copying text is difficult because coordination and holding information in memory for the short term is needed.

What you can do

Interventions for attention and memory
  • Help with organization
  • Present information in concrete manner
  • Use manipulatives to show concepts
  • Simplify verbal information and explain concepts clearly
  • Provide visual cues and instructions
  • Repeat information and use positive reinforcement.
  • Ask child to repeat instructions. Help the child find a starting point, especially on complex tasks. They often have a hard time with multiple step tasks and lose track of what they are doing.
  • Select relevant task goals.
  • Use a calendar to track important events.
  • Organize a means to solve complex problems.  
  • Monitor and evaluate behavior and emotions.
  • Help organize everyday needs at school and at home.  For example, have a place for all things, use different colored notebooks for different subjects, etc.
Interventions for learning math
  • Foster the development of quantity representations. Teach the association between numbers and quantities.  Playing number board games may help.
  • Break down word problems and help with reading.  Have child verbalize each step of the problem and explain their work.  Make sure math terms are understood.
  • Line up calculations. Graph paper may be useful.  Group similar problems together. Encourage child to double-check all work.
  • Encourage child to look at the question with their answer to see if it makes sense.
  • Help children apply information they have learned to new situations.
  • Begin with concrete examples. Proceed to the abstract once the concrete examples are mastered or understood.
  • If individuals have difficulty remembering basic number facts, use concrete aids. Help them make up memory strategies or use mnemonic devices.
  • Encourage frequent repetition and practice of math concepts.
  • They may be overwhelmed by complex diagrams and graphs. Use verbal explanations instead.
  • Encourage use of calculator or other assistive devices if needed.
Interventions for motor and sensory development
  • Occupational and physical therapy may be helpful. 
  • Visual instruction may work better than verbal.
  • Limit written homework.
  • Use manipulate activities (Legos, play dough)  
  • Practice cutting
  • Allow longer time to write
  • Write on every other line
  • Allow tracing
Interentions for communication challenges
  • Individuals with speech and motor difficulties often benefit from speech and occupational therapy
  • Promote language understanding by using simple short sentences. Visual prompts and pictures may help.   
    • Use a child’s experiences and interests to engage child in learning
    • Allow extra time
    • Repeat directions
    • Provide lesson summaries
    • Record lesson so child can listen again
  • Promote language development by:
    • Providing ample time for responding
    • Increasing the child’s self confidence by calling on them when they know answer
    • Encouraging a child to repeat the questions before responding
    • Allowing a child time to rehearse and respond 
Interventions for reading
  • Children with phonological dyslexia (difficulty sounding out words when reading) can benefit from explicit instructions in learning concepts like phonological awareness (the ability to perceive and manipulate the sounds of language).
  • Individuals must be taught that words can be simplified into smaller units of sounds and that letters represent those sounds. 
  • Identifying rhyming and non rhyming words
  • Playing games like “I spy”
  • Computer-based phonics training programs may help.
  • Avoid having a child read aloud to class.  Save this for one-on-one teaching or small group. Allow the child time to practice ahead of time.
  • Practice reading stories and provide extra reading time
  • When needed, offer more than multiple choice or oral based tests.  Offer a separate or quiet space for tests.
  • If word recognition is a problem, consider flash card reading or the use of mnemonic devices.
Interventions for spelling
  • Teach common irregular words (words that don’t follow normal spelling or sound rules).
  • Encourage the child to keep a file of frequently misspelled words when writing.
  • Encourage proof reading.  Underline misspelled words and allow correcting before turning it in.
  • Encourage activities that involve building printed words with letter tiles or other manipulatives.
Interventions for visual perceptual difficulties
  • Modify copying.  For example provide a copy of teacher’s or other student’s notes.
  • Provide simple overview or summary before lesson.
  • Provide clear tests that are as simple as possible with only a few problems on a page. Graph paper may help especially in math problems.
  • Use lined paper as they may have trouble figuring out where to place written responses on a sheet of paper.
  • Allow extra time on work.
  • Practice tracing shapes and copying pictures.
  • Provide feedback. Individuals may not be aware of mistakes.
  • Use verbal descriptions to reinforce the visual.
  • Practice folding and cutting with scissors.
  • May have difficulty matching shapes and sizes. 
  • Puzzles may be challenging
  • May have difficulty reading words in correct order.  Mark desk with left and right.
  • 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.