Back to School: Time Management

The 2014 – 2015 school year is fast approaching!

Time can be difficult to come by during the school year for parents and students alike. Add time constraints to the fact that children with NF1 often struggle to stay on task and it may feel like it is impossible to fit everything your child needs to do into a single day. Teaching your child about time management is a great way to empower your him or her to take responsibility and focus throughout the day.


A key element of time management is learning how to prioritize. Help your child not only by discussing what tasks need to be completed throughout the day, but also through explaining which tasks should be completed before other tasks. For instance, if your child has a math test the next day, let him or her know that studying for math should be first on her to-do list after school.

Create a Responsibility Chart

Some children may benefit from having a visual representation of what they need to do throughout the day. Responsibility charts can be as simple (all the “to do” responsibilities on one side and “completed” responsibilities on the other side) or as involved (all the “to do” responsibilities in order of when they should be completed) as you like. The goal is to make the tool as useful for your individual child as possible. Check out the image to the right for an example or join us at Club NF this weekend where we will make responsibility charts.

Use a Timer

You can set a timer to help your child move between tasks. For example, if you are letting your child take a break from homework, set a timer to alert him or her to when the break has ended. Additionally, the iPad has a lot of ways you can set timers to help your child move between fun activities and school related activities.

Time management is a valuable skill in all facets of life. Helping your child to grasp the concept now will help him or her be better prepared for his or her future.

Back to School: Getting Organized

The 2014 – 2015 school year is fast approaching!

Children with NF1 often experience difficulties in the academic environment due to attention deficits, learning disabilities and social delays. It can be frustrating for both students and families if they feel there are significant roadblocks to success in school. Fortunately, there are many ways you can help your children stay on target this year.

Set Expectations

When children have a goal to achieve, they will typically rise to the occasion. Set expectations for how you expect the school year to go. For example, what time of day do you expect your child to complete his or her homework? When is it appropriate to play on the computer or watch TV during the school year? provides Toolkits designed to help you and your child answer these questions and can be used as a starting point for setting reasonable goals for the year.

Get Organized

One of the biggest school related struggles for children with NF1 is organization. Help your children by initiating some simple organization rules. For example, color code different subjects. Maybe the child’s math book is blue so it is paired with a blue folder and blue notebook. Maybe English is red. Color coding will help the child keep track of different notes and assignments associated with each subject.

Make sure that everything has a place where it belongs both at school and at home. For example, have the child place his or her backpack in the same place when he or she gets home from school every night and have him or her put notes from teachers in the same folder every day.

Help your child by checking in daily or weekly to make sure that all his or her items are organized. Keeping things organized on a regular basis will lessen how often your child forgets and/or loses something.

Have a Schedule

Having a regular schedule will help your child know what to expect day in and day out and help him or her prepare adequately for each day. It can also help you ensure that your child is getting enough sleep and practicing good sleep hygiene. Children can use organization apps to track their daily schedule and stay on task.

Consider Services

Some children with NF1 may benefit from having an Individualized Education Plan (IEP). An IEP provides supports in the school setting allowing children access to education in a “least restrictive environment.”  These supports can include specialized teaching techniques, access to technology, occupational therapy, physical therapy, speech therapy, and modifications to the environment (preferential seating, a second set of books for home, extended passing periods).

If you feel your child would benefit from having one or more modifications to the educational environment, talk with your school. They will perform standard screenings to determine if your child qualifies. In the event that your school says your child does not qualify, please review our handout.

You may also want to consider contacting your NF Specialist to request a formal Neuropsychology Evaluation. A Clinical Child Neuropsychologist can complete the evaluation on your child which will provide you with a large amount of information on how your child thinks and learns which you can then bring to your school to support your request for services.

School should be an engaging and meaningful experience for every child. Through support, you can help your child have a full and successful year.

If you are looking for more information about NF related academic concerns, please review our educational brochures.

UPDATE: Clinical Research Studies at the Washington University NF Center – Summer 2014

Curious how our current clinical studies are going?

NF1 Genome Project (NF1GP)NF 1 Genome Project- Washington University Neurofibromatosis Center/ St. Louis Children's Hospital- NF DNA Bank- NF

We have obtained 405 blood samples from individuals with NF1 and have begun using some of the samples in new studies. These include a study looking at the differences in DNA between people with NF1 who develop brain tumors and people with NF1 who do not develop brain tumors as well as a study looking at how DNA might affect the number of dermal neurofibromas a person with NF1 develops.

NF1 Patient Registry Initiative (NPRI)NPRI- NF 1 Patient Registry Initiative- Washington University Neurofibromatosis Center/ St. Louis Children's Hospital- NF1

1750 individuals with NF1 have registered and completed questionnaires for the NPRI. Individuals from all 50 states, the District of Columbia and 47 countries have participated. We are still recruiting! If you are interested in participating, or you know someone who is interested, please go HERE.

Social and Behavioral Health in NF1ASD logo 3

110 individuals have participated and data is being prepared for analysis.

Hypotonia and Brain Tumors

10 children with NF1 have participated in this study. We are still recruiting! Children between the ages of 0 and 7 will be evaluated for hypotonia in clinic and those eligible will be approached to consider participating.

NF1 Brain Trust Project (NBTP)NF1 Brain Trust

15 individuals have donated skin samples to this study. We are still recruiting!

Maternal Folate Metabolism and Brain Tumors

60 families have completed this study and data is currently being analyzed.

Nicole’s Nook: Back to School Apps

As summer is winding down and school is right around the corner, some great educational (and fun) apps include those that target fine motor, visual motor and visual perceptual skills. The apps included below target development of skills which play a significant role in academics, so here’s your chance to get a head start for school!

Fine Motor Skills Apps

  • Dexteria Dots, $1.99
  • Dexteria, $3.99
  • Dexteria Jr., $3.99
  • Bugs and Buttons, $2.99
  • Bugs and Bubbles, $2.99
  • Bugs and Numbers, $2.99
  • Learning to Draw is Fun Lite, Free
  • Kids Doodle, Free
  • Neon Mania, Free
  • ABC Easy Writer Combo HD Lite, Free
  • Abby Pal Tracer, Free
  • Handwriting Without Tears: Wet, Dry, Try; $6.99

Visual Perceptual Apps

  • Little Things, $2.99
  • Doodle Find, Free
  • Rush Hour, Free
  • Unblock Me, Free
  • Monster Hunt, Free
  • Find It: Look and Find Hidden Objects for Toys, Free
  • Find-It, Free
  • What’s the Difference, Free
  • Sam Phibian, Free
  • Puzzle Planet, Free
  • Mouse Maze, Free
  • Crazy Feet, Free
  • Shelby’s Quest, $4.99
  • iMazing, Free
  • Crazy Valet, Free
  • Animal Hide and Seek, Free
  • P.O.V. Spatial Reasoning Game, $3.99
  • Alien Buddies, $2.99
  • Abby Monkey Animated Puzzle, Free
  • Find 50, Free
  • Gofun, Free

Also check out our extensive list of other apps which focus on organization and behavior, classroom productivity, visual perceptual skills, fine motor skills and academics!

Nicole Weckherlin, OTR/L


Empowering Parents to Detect Potential Delays in their Children with NF1


Children with NF1 commonly experience a range of developmental delays that can negatively impact their daily lives. Early detection and treatment of these delays provides children with NF1 their best chances of success.

In order to help families detect potential delays as early as possible, we have created child development checklists of expected developmental milestones for children between the ages of 6 months and 6 years. Families can easily track the developmental progress of their children.

If you notice your child has not reached a milestone by the expected age, please notify your child’s pediatrician or NF Specialist in order to implement an appropriate care plan.


Courtney’s Corner: Back to School Shoe Shopping

As the kids head back to school, new shoes often top the shopping list. With the cost of new shoes sometimes reaching upwards of $100, we want to pass on some basics regarding shoe selection from a physical therapist’s perspective.

First, shoes for early walkers are primarily for protection. Shoes are not required to learn to walk nor are they needed to form an arch. Actually, time spent walking without shoes is far more important for balance, strength and development of the feet.

As children become more adept walkers, shoes become primarily a fashion statement. The most important thing to remember is to buy shoes that are economical enough to throw them out as soon as they are outgrown. A properly sized shoe is far more important than a “supportive” shoe or a trendy shoe. For the 2-3 year old child, shoes do not need large arch supports, as the arch isn’t developed yet. Since the arch is not yet developed, most toddlers have a wide foot. With this in mind, most toddler-sized shoes are already wide.

If your child does seem to have a very wide foot, discount shoe stores generally have wider shoes available (and at a bargain price!). If your child seems to have a very flat foot, discuss it with your physician and consider having their feet evaluated by a physical therapist. Excessively flat feet can cause long term hip and knee pain. Some children with NF1 also develop a “progressive flat foot” which can require surgery. Shoe orthotics can help align the foot properly, hopefully decreasing the risk of pain in the teen and adult years.

Having a pair of sturdy tennis shoes is a must. While trendy, flip-flops, clogs and loose fitting sandals are a trip-and-fall hazard. Tennis shoes with snuggly tied laces or Velcro straps provide additional stability when playing soccer, riding a bicycle or chasing a Frisbee.

Post-Doc Profile: Joe Toonen – Understanding NF1-Associated Vision Loss

Joe Toonen, PhD, is interested in understanding how optic gliomas cause nerve cells in the eye to malfunction and lead to vision loss. Using novel Nf1 mouse strains, Dr. Toonen’s research is focused on defining the mechanisms that control nerve cell function in the eye (retina) relevant to the development of better treatments for the visual decline resulting from NF1-associated optic glioma.

NFL thickness Blogpost



The Washington University NF Center in collaboration with the St. Louis Children’s Hospital Foundation is excited to announce its August 2014 Club NF event – Club NF Swims!

Please join us at The Lodge Des Peres on August 2, 2014 for a back to school-themed day focusing on organizational skills, gross motor skills and social skills.

As children work with therapists on gross motor skills, parents will enjoy an educational talk from Julie Hough, owner of The Ordered Home, focusing on creation of a family friendly program to prepare for the new school year. Families are encouraged to stay after the event to enjoy swimming and socializing in the indoor and outdoor pools.

To learn more, check out our flyer or contact Kirsten Brouillet at

HOLIDAY SPECIAL: Therapy Activities for the 4th of July

Happy 4th of July from the Washington University NF Center!

Summer is here and it is time to celebrate! Get outside and enjoy Independence Day weekend as a family. While you’re at it, consider trying out these 4th of July themed therapy activities.

Occupational Therapy – Fine Motor Skill Development

“Fireworks” in a Jar

This science experiment will get your child thinking as well as practicing important finger skills. Fill a clear jar with water and 2 tbsp of oil. Then add a few drops of multiple colors of food coloring. Watch as the colors mix and separate just like fireworks!

What this activity works on: grasp, finger isolation, pre-writing skills

This activity can be found on

Physical Therapy – Gross Motor Skill Development

Build a Flag Relay Race

Have your child and his or her friends build a giant flag together out of materials from home. Here’s the catch, put the materials in different places around the yard and make up different rules for how to get to each item. Maybe they have to skip to get to the stripes. Maybe they need to frog jump to get to the stars. The possibilities are endless!

What this activity works on: coordination, motor control, balance, visual motor integration

This activity, and other great play-based therapy activities, can be found on the blog The Inspired Treehouse.

Speech Therapy – Language Skill Development

Watch Fireworks

Sounds simple, right? It is! Doing something as simple as watching fireworks together can be an excellent opportunity to work on language development. Have your child describe what he or she sees. What colors? What sizes? What shapes? Have little ones describe the sounds such as “boom” and “pop” to develop those tricky b and p sounds.

What this activity works on: articulation, language comprehension, expressive language

This activity, and other great speech therapy activities, can be found on the blog Chicago Speech Spot.

Beat NF: Understanding How Music Therapy Helps Children with NF1

cbriggsWelcome to a special guest post from Beat NF Music Therapist, Dr. Cynthia Briggs!

Cynthia Briggs, PhD, is a licensed Music Therapist and faculty member at Maryville University. She has collaborated with the Washington University NF Center and Jazz St. Louis to create Beat NF–a jazz music therapy program for toddlers with NF1.

Music Therapy for Children with NF1

The components of music include rhythm, tonality, meter, phrasing, accent, melody, harmony and lyrics. In music therapy, these components become the tools used to address specific therapeutic needs and to facilitate skill development. As a music therapist, my goal is to understand what types of skills a person in therapy is seeking to attain and then to find a way to integrate the potential for skill development into music. During Beat NF, we looked at multiple skills that are commonly delayed in children with NF1 and found ways to integrate those skills directly into jazz music.

Learning and AttentionBeatNF_Sess6_11

Many children with NF1 experience challenges with learning and attention as well as processing and retrieving information. Because the structure of music organizes information and facilitates memory and retrieval, it is the perfect tool for developing learning skills. One of our many goals during Beat NF was to create songs that required children to follow specific steps and actions in order to learn a new skill. By breaking skills down into simple steps, children had the opportunity to better process and retrieve new information.

Executive Function

Executive function, or the ability or plan, problem solve and execute solutions, is also an area that is often delayed in children with NF1. Music relies on components such as rhythm and meter in order to exist. These components readily lend themselves to sequencing activities. A child learns that a pause in the music means you wait and that in order to stay on the beat with your peers you must attend to your surroundings. At Beat NF, children had the opportunity to play a special instrument called an Orff Instrument, similar to a xylophone. We challenged children to play on a beat rather than simply playing randomly. By practicing this skill, children worked on planning and managing impulsive behaviors.

Language SkillsBeatNF_Sess6_04

Children with NF1 also experience delays in expressive (spoken) and receptive (heard) speech. Because music is built from the same elements as speech (rhythm, tonality, inflection, accent), it is an excellent way to practice language skills. When words are set to music, it can help children to attain more fluid speech. Encouraging children to sing a phrase and then speak the same phrase can help them transfer the fluidity of music into their spoken language.

Motor Skills

Motor skills, both fine or finger-based and gross or whole body-based, can be delayed in children with NF1. Music can be used to encourage movement in multiple ways. First, it can be written directly into a song. At each Beat NF session, we played an original Motor Song which encouraged children with NF1 to practice specific motor skills such as jumping and balancing. Even without writing the specific movements into a song, music can still be used to encourage motor development. Setting music as a background to movement can encourage fluidity. Changing the meter of the music from slow to fast can encourage children to change the rate of their movements. There are endless ways to encourage motor development through music.

We were so thrilled to have so many children participate in Beat NF this session and even more thrilled to see each child’s personal growth. We hope to see you all in the Fall!

Cynthia Briggs, PhD