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Education Supports

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

What you need to know

Children with PKU may need a 504 plan to accommodate their dietary needs.

Click here for our indepth IEP/504 page.

  • A child may need special arrangements for lunch and for drinking formula during the school day.
  • Starting a PHE restricted diet early has eliminated large cognitive delays. 
    • However, in spite of early and continuous treatment, children and adults with PKU may experience symptoms. These include cognitive, emotional, and behavioral differences.
  • Careful evaluation of any behavioral or learning differences is always important as they may not be related to PKU.
In general, children and adolescents with PKU are more likely than their non-PKU peers to have academic differences. They may need an IEP to be successful in school.

Click here for our indepth IEP/504 page.

  • Some studies show children PKU may differ from controls on full scale IQ, processing speed, attention, inhibition, and motor control.
  • Abstract reasoning, executive function, and attention may be areas of weakness. 
  • PKU that is treated early is associated with average intellectual performance.  
  • IQ Development is variable.
    • Some individuals with early well controlled diet attain an IQ within an average range. Others may perform within the range of mild to moderate intellectual disability. 
Some children with PKU may have difficulties in working memory, motor speed, motor control, sustained attention, and executive function.
  • Executive function challenges affect planning, thinking flexibly, and understanding abstract ideas. Children may struggle to remember, process, and organize information efficiently. This can lead to problems in mathematics and reading.
  • Executive function is based on a group of interrelated cognitive and behavioral skills. They are responsible for goal directed activity including:
    • Attention
    • Short term memory
    • Planning and organization
    • Behavioral inhibition
    • Social interactions - differences in this area may be due to lack of focus.  
  • Executive function difficulties may be subtle but present in early and well treated individuals with PKU.
  • Executive function and activity levels are affected by PHE levels.
  • Cognitive profile is affected by processing speed.
  • 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.
  • Poor executive function can lead to difficulties in calculations requiring more than one step.
  • Word problems may be challenging.
Reading comprehension may become an issue as a child grows older.

  • This is often due to executive function difficulties and sustaining attention and focus.
  • The lack of these skills can interfere with new knowledge and the ability to master new skills.
Global processing problems and mild mental processing speed may be present.
  • Slower processing speed leads to difficulty with comprehension, the ability to complete tasks, and school performance.
  • Social relationships may be more difficult so monitor need for any extra support in developing friendships. 
Fine motor speed may be decreased.
  • Even early treated children may have awkward pencil grasps and poor handwriting.
Math difficulties may be present.
  • Math scores are consistently lower than overall achievement scores.This is thought to be due to a combination of visual spatial or perceptual deficits and executive functioning deficits.
Visual spatial difficulties may be present.
  • In addition to problems in math, these can lead to difficulty with spelling rules. 

What you can do

Executive functioning
  • Be flexible and patient
  • Help with organization
  • Provide information in brief, organized, and specific manner.
  • A step-by-step approach is most effective, paying attention to the student’s abilities.
  • Involve adolescents in interventions and foster an atmosphere that enhances independence.
Motor issues
  • Allow enough time for tasks like copying letters and figures, which take longer.
  • Consider having child work with an occupational therapist.
Language / communication
  • Consider using verbal explanations, which are often more effective than visual demonstrations, diagrams and models.
  • Enhance verbal information with written materials.
  • Word problems may be challenging.
Visual-spatial issues
  • Allow time for tasks that may take longer or be difficult.
    • Copying letters, figures and geometric shapes
    • Math fractions and formulas
  • Individuals need help lining up numbers to do calculations.
Accommodations and modifications
  • Present information in concrete manner.
  • Repetition will help children remember basic facts.
  • Simplify information presented on worksheets.
  • Written homework may need to be modified.
  • Computers may be helpful.  
  • 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.