Just Keep Swimming!

It’s officially summer and time to head to the pool! While a day at the pool can be a relaxing day of fun for all, it can also be an excellent opportunity for your children to work on a variety of gross motor, fine motor and social skills commonly delayed in children with NF1. Just be sure to remember the sunscreen and sunglasses!

Ping Pong Retrieval – Similar to collecting pool rings that sink to the bottom of the pool, this game works on the same gathering principle, but above the water. Toss some ping pong balls in the pool and let players swim after them to see who can collect the most. For an added challenge, let them decorate five balls each and have them gather only their balls from the pool.

Skills Required: endurance, coordination, graspimage

Ping Pong Toss – An extension of the ping pong gathering game, you can put a circular inner tube in the pool and have them toss the ping pong balls they gathered into the tube for points.

Skills Required: finger isolation, motor planning, visual motor

Octopus – Essentially Red Rover adapted for the pool, the objective of this game is to swim across the pool without getting tagged by “it”. As children are tagged, they join “it” to act as an octopus with tentacles and assist in tagging the other swimmers.

Skills Required: endurance, coordination, social skills

Pool Whack-a-Mole – Similar to the on-land Whack-a-Mole game, this pool modification involves one “it” person on the side of the pool and multiple other children acting as “moles” bobbing up and down. The “it” person uses a pool noodle to “whack-a-mole” until all the moles are out.

Skills Required: motor planning, visual motor, social skillsimage

Water Hose Limbo – Don’t have access to a pool? Don’t let that stop you from playing fun water games with your children this summer! Hook up the water hose and use the stream of water as a limbo stick. Whoever stays dry the longest wins!

Skills Required: balance, motor control, motor planning, trunk stability

Just Keep Swimming!: Playing in the Water as Therapy

image

 

It’s officially summer and time to head to the pool!

While a day at the pool can be a relaxing day of fun for all, it can also be an excellent opportunity for your children to work on a variety of gross motor, fine motor and social skills commonly delayed in children with NF1. Just be sure to remember the sunscreen and sunglasses!

 

 

  • Ping Pong Retrieval – Similar to collecting pool rings that sink to the bottom of the pool, this game works on the same gathering principle, but above the water. Toss some ping pong balls in the pool and let players swim after them to see who can collect the most. For an added challenge, let them decorate five balls each and have them gather only their balls from the pool.

Skills Required: endurance, coordination, graspimage

 

  • Ping Pong Toss – An extension of the ping pong gathering game, you can put a circular inner tube in the pool and have them toss the ping pong balls they gathered into the tube for points.

Skills Required: finger isolation, motor planning, visual motor

 

  • Octopus – Essentially Red Rover adapted for the pool, the objective of this game is to swim across the pool without getting tagged by “it”. As children are tagged, they join “it” to act as an octopus with tentacles and assist in tagging the other swimmers.

Skills Required: endurance, coordination, social skills

 

  • Pool Whack-a-Mole – Similar to the on-land Whack-a-Mole game, this pool modification involves one “it” person on the side of the pool and multiple other children acting as “moles” bobbing up and down. The “it” person uses a pool noodle to “whack-a-mole” until all the moles are out.

Skills Required: motor planning, visual motor, social skillsimage

 

  • Water Hose Limbo – Don’t have access to a pool? Don’t let that stop you from playing fun water games with your children this summer! Hook up the water hose and use the stream of water as a limbo stick. Whoever stays dry the longest wins!

Skills Required: balance, motor control, motor planning, trunk stability

Nicole’s Nook: To Write or Not to Write?

Child Smiling on Computer

Technology is everywhere these days. We are constantly syncing, posting, downloading, messaging, emailing and typing. As such, the term cut and paste no longer refers to the scissors and glue of yesteryear. Beyond their use for keeping in touch, technology can be used to assist children with special needs.

In this month’s blog, I thought I’d take a moment to reflect on how technology can play an important part in education. Here are some of what I consider to be key benefits of using technology as an educational tool:

  • Technology can prevent fatigue and delayed motor skills from negatively impacting on academic performance, leveling the playing field and eliminating the need for shortened assignments. It empowers those children with motor delays as well as those with organizational and processing problems. With some simple adaptations, technology can be used to complete classroom and homework assignments.
  • Keyboarding and typing are practical alternatives to written communication. While writing is a very functional skill, keyboarding is quickly becoming just as important. Hence, both traditional and technology-based modes of communication should be learned and utilized to enable success in the classroom.
  • Technology is typically portable, thereby, encouraging inclusion. In addition, it also results in decreased dependence on scribes or others for assistance, boosting independence.
  • Not only can technology provide augmentative, expressive and written communication, online books offer many accessibility features for those with physical and vision impairments, as well as for those who struggle with reading.

As an occupational therapist (OT), I often encourage other OTs to redefine our role. We are not quite the “handwriting specialists” we are so often narrowly defined as being. Rather, we are “written communication specialists,” which involves so much more than traditional writing. Our role is comprehensive, encompassing the invention, support and equipment training necessary to transform children’s lives and increase their ability to communicate via traditional and technology-
based written communication.

Nicole Weckherlin, OTR/L

Washington University NF Center Trainee Defends Dissertation on Understanding NF2-Associated Spinal Cord Tumor Formation

cindy graduation

On Wednesday June 11, 2014, Cynthia Garcia, PhD, a previous graduate student in the laboratory of  David H. Gutmann, MD PhD, defended her dissertation as the final step in achieving her PhD in Neuroscience.

Dr. Garcia’s dissertation focused on understanding why spinal tumors, or ependymomas, form in individuals with NF2. Using a combination of methods, she has identified a promising drug target for potential treatment of NF2-associated ependymoma.

After her presentation, members of the Washington University NF Center celebrated this momentous occasion and wished Dr. Garcia good luck in all her future endeavors.

Courtney’s Corner: Encouraging Physical Activity

swimming

As we hear more and more about the importance of activity to combat childhood obesity, we need to encourage our children to remain active. Increasing a child’s activity level can be challenging, especially when competing with video games, iPads, and other on-screen entertainment options.

For children with NF1, we have an even greater challenge because physical activities can be harder.  Children with NF1 often report fatigue, pain with increased activity and difficulty keeping up with their peers during sports and other physical activities.

So how do we increase a child’s activity?  The best approach is to ensure success by following some general recommendations:

  • Select sports that offer each child the opportunity to succeed at their own pace.  Often times, these sports are not the ones that commonly come to mind and are typically individual, rather than team, sports.
  • Expose your child to a wide variety of sport activities, including tennis, golf, swimming, gymnastics and martial arts.  Have you tried rock climbing, cycling, running or fencing?
  • Improvise! Activities do not have to be organized – playing tag with friends, having a dance party after dinner, or taking the dog for a walk all work on endurance, strength, balance and coordination.

Sometimes getting children engaged in physical activity simply takes a reminder that TV, movies, iPads, tablets and computers all have time limits. Establishing a reward program where your child can earn time on these devices by participating in physical activity is a great way to motivate them to get moving!

Rock Climbing2 Rock Climbing3 Rock Climbing

Beat NF – Together!

During tphoto 1-8he months of May and June, the Washington University NF Center, the St. Louis Children’s Hospital Foundation, Jazz St. Louis and Maryville University Music Therapy Department are partnering together for their second six week session of Beat NF, Beat NF–Together!

Like the previous session, Beat NF–Together features songs written by our music therapist that are designed to develop skills commonly delayed in toddlers with NF1 including gross motor skills, attention skills and social skills. Each week highlights a different motor activity and walks parents and children alike through the steps necessary to become proficient in the motor skill. Families and therapists have been excited to see rapid growth in each child from week one to week three. Some children who could not jump with two feet together on week one are now hopping around the room.

As before, a definite favorite for the children is playing the Orff Instruments, an instrument similar to the xylophone. During this session we are working with the children on bilateral coordination by teaching them to either strike the instrument with both mallets simultaneously or to alternate their strikes in rhythm with the music. This also encourages the children to focus and attend to the leader of the group in order to hear and follow directions.

Another major goal for this session is to encourage parent-child interactions. By getting parents involved in the motor activities and music playing we hope to foster social skills as well as give parents the tools they need to practice these skills at home on a regular basis.

The Washington University NF Center is very excited for the final three weeks of Beat NF. If you are interested in attending, please contact Kirsten Brouillet at brouilletk@neuro.wustl.edu.

photo 1-22 photo 1-19 photo 2

For more pictures, please visit the Washington University NF Center Facebook Page.

Club NF Zoo Adventure!

On June 7, 2014, the Washington University NF Center in collaboration with the St. Louis Children’s Hospital Foundation hosted our June 2014 Club NF Event! The program focused on sensory integration, gross motor skills and social skills.

Club NF met at the Saint Louis Zoo. The morning began with families meeting a professional zookeeper to learn about animals. Each child worked on sensory processing and integration as he or she touched different animals including a hedgehog, an owl and a turtle. Children learned about the appropriate ways to handle an animal as well as practiced being quite around animals with sensitive hearing.

After meeting with the animals, families teamed up to go on a scavenger hunt throughout the zoo. Children worked together to locate facts about different animals such as where a certain animal lives in the wild or what the average height of a specific animal is. Despite the sudden downpour, families had a great time walking through the park and learning together.

photo 2-7 photo 1-7 photo 5

For more pictures, please visit our Facebook page.

Washington University NF Center Summer 2014 Newsletter

Summer 2014

Check out our Summer 2014 newsletter!

Inside this issue:

Governor Nixon and Mayor Slay Proclaim May 2014 NF Awareness Month

New Study Uses the Fruit Fly to Understand NF2 Gene Function

Courtney’s Corner

And More!

Check out our previous newsletters as well!

Washington University NF Center Family Raises NF Awareness

Recently, Peggy Dohkle partnered with The Louvre Salon & Spa in order to raise awareness about NF.

The Louvre, which supports up to six local causes annually, was excited to take on the NF Cause. Mrs. Dohlke, who works at the establishment and who regularly attends Club NF events with her family, organized the fundraising activities including employee dress down days and a community raffle. Together, these events helped to get people excited and talking about NF.

The Washington University NF Center extends it’s gratitude to Mrs. Dohlke and The Louvre for their generous support.