As we are now well into the school year and parent/teacher conferences have just been (or will soon be) held, many families may be reevaluating their student’s progress and ability to accomplish their school-related tasks. The iPad may play a key role in your child’s school day, but printing and sharing work is often a challenge. Many school districts are working to minimize printing requirements and move toward cloud-based sharing of documents with services like Google Drive.
Google Drive is a free app that allows you to share files that were created in a different app. To utilize this document sharing app, you will need to download it first and sign in or create a Google account. Once you are in My Drive, you may want to create separate folders for each class (separate folder for Language Arts, Math, Science, etc.). Then, go into each folder and Add People, making sure to also add the affiliated teacher for each class by using his or her email address. For elementary school children, you may still want to create separate subject folders even though there is only one homeroom teacher. This will encourage organization and keep all subject-related documents together. Another helpful suggestion is to name your documents with your initials, the date and subject, which will allow you to opening each document individually to identify it. Fortunately, many of my favorite productivity apps allow sharing via Google Drive.
SnapType: When sharing a worksheet, share as a PDF, then select the Google Drive app (Copy to Drive). The document/worksheet will then upload into your drive and will be listed under your Files. If you would like to put it in a specific folder, hold and drag the file to the folder you want.
iAnnotate PDF: In order to share via Google Drive, one of your toolbars must include the tool Open in External Application. Select this option and select the Flattened version of your worksheet. Then select the Google Drive app (Copy to Drive). It will then upload to your files and you can hold and drag it to the folder you want. While SnapType is a bit easier to use, iAnnotate offers many more annotation tools such as the pencil, highlighter, stamp, etc.
Co-Writer: This app works a bit differently with Google Drive as it uploads its own ‘Co-Writer’ folder vs. your files. If you would like to move it to a different folder, simply open the Co-Writer folder, select your document on the far right side where the three vertical dots are located and select Move from the menu. Then select the folder you want to move it to.
myMemoir: Documents in this journaling app can be shared as a PDF, then exported to the Google Drive app. To do so, select the arrow icon in the upper left corner and select Share, then select PDF. Scroll to the bottom and select Export. Once the export is complete, select Open In and choose the Google Drive app (Copy to Drive). Save and upload the file and then hold and drag it to place it in a folder.
I hope this information will make your iPad even more functional and productive this school year!
-Nicole Weckherlin, OTR/L
Wrapping Up Another Successful Beat NF Session!
Harold and Dorothy Steward Center for Jazz
The fall Beat NF session wrapped up this past Wednesday with our toddler participants, both new and seasoned veterans to the program, enjoying five weeks of play-based motor-music therapy in the Centene Education Center classroom on the top floor of the Harold and Dorothy Steward Center for Jazz.
A typical Beat NF class begins with the children picking a spot in a circle while Skyler Brussee, Master of Music Therapy Program at Maryville University Student, starts the class by leading our “Hello Song,” one of the many program elements focusing on development of appropriate social skills. During this song, the group welcomes our friends and leaders: Pops on the piano, St. Louis Children’s Hospital Physical Therapists Courtney Dunn and Sarah Hickey, and our mystery musical guest (a local musician who accompanies the piano). Throughout a series of songs and carefully planned fine and gross motor activities, our team then leads the children on a journey of play, planned social interactions, motor therapy work and music education.
The therapeutic goals of the program are so carefully woven throughout each 75 minute class that the children are all smiles even when being challenged and pushed to their limits by the physical therapists. When St. Louis Children’s Hospital Physical Therapist Courtney Dunn, PT, DPT asks a participant to walk across a balance beam on tip toes, it might be more difficult for a child with NF1 for a variety of reasons, including decreased muscle tone throughout the body, balance issues or a bone abnormality within the leg. Each child with NF1 presents their own expression of this genetic disorder, and each child has his or her own set of struggles. By integrating therapeutic goals into a new song or game and frequently redirecting the class to focus on new activities, the kids stay focused and engaged.
Resting after the musical thunderstorm
The children also learn about a variety of musical instruments, getting the chance to pluck an upright bass string, push the valves of a trumpet and bang on a drum. During our last class, Skyler led the children in creating a musical thunderstorm, producing the sounds of howling wind, pounding rain and blasts of thunder on their own individual drums.
No one ever leaves a Beat NF class without a smile on their face. That’s the common feature we all share on our way out the door after each class. Every activity is thoughtfully woven into a song, and every song is fun and catchy, easy to learn but updated for each class by switching out various motor movements.
Our long-term plan is to grow this program by adding new activities, songs, instruments and friends! Please join us for our Spring 2016 Beat NF session (specific dates in March-April 2016 to be determined). To learn more about Beat NF, check out our informational video introduction to the program.
– Written by Kirsten Brouillet, Team NF Coordinator
Beat NF is a play-based, motor-music therapy program for toddlers with NF1. NF1 is a set of complex genetic disorders that affects almost every organ system, causing a predisposition for tumors to grow on nerves in the brain and throughout the body. Kirsten Brouillet is the Team NF Coordinator at the Washington University Neurofibromatosis Center and has been involved with Beat NF since its inception in 2013. Contact Kirsten at email@example.com for more information about this and other Washington University NF Center complementary care programs.
Nicole’s Nook: Handwriting Made Easier
Handwriting can be difficult, fatiguing, and frustrating for many children, especially in children with NF1. Often times it adversely affects their schoolwork and overall academic performance. While handwriting is a very functional skill, minimizing such fine motor demands can be a reasonable accommodation to increase productivity and success. The iPad features several options to ease handwriting struggles, many of which are even built into iOS8 and can be found in SETTINGS, GENERAL, KEYBOARDS.
Dictation: As long as you are able to connect to Wi-Fi, you can dictate any time your keyboard comes up. Just hit the microphone key on the bottom left and start talking!
Predictive Text: This is a word prediction feature that will minimize typing.
Auto Capitalization, Auto Correction and Enabling Caps Lock will also make for quicker typing and fewer keystrokes.
Shortcuts: Create custom phrases by using abbreviations or acronyms to type the full phrase or sentence.
There are also a variety of apps out there that can benefit children who have a hard time with handwriting by encouraging them to work on skills such as directionality, letter formation and overall accuracy:
Handwriting Without Tears
Dexteria iPad App
Other apps can convert handwriting to more legible text:
MyScript Smart Note
So, while handwriting is a very important skill, it does not have to be a source of frustration, nor become a penalty in the classroom. Utilizing these features and apps can contribute to more efficient and productive students.
– Nicole Weckherlin, OTR/L
Washington University NF Center Fall 2015 Newsletter
Check out the fall 2015 newsletter (pdf) for some of our most popular research articles, patient stories and details about upcoming events this fall!
Some of the highlights in this issue include:
Researchers Separate NF1/RAS Function in Brain Stem Cells
Patient Spotlight: Molly McNeill
Washington University NF Center to Hold Research Symposium
The Washington University NF Center, in collaboration with the St. Louis Children’s Hospital Foundation, is excited to announce our October 2015 Club NF event – Club NF Goes to FuNFest!
Please join us on Saturday, October 3, at the Walk Family’s 5th annual FuNFest, which will also include Club NF. FuNFest is an annual fundraiser sponsored by the Walk family at Gatch Lake — near Vandalia, Illinois. FuNFest includes games, bounce houses, face painting, a silent auction and a bake sale along with the infamous Cow Patty Bingo! Food and drinks are available for purchase.
All proceeds from the event are donated to St. Louis Children’s Hospital Foundation/Washington University NF Center. To help support this exciting event, Club NF will travel to FuNFest. Team NF Therapists will lead games and activities that reinforce fine and gross motor skills, which are frequently delayed in children with NF1.
If your family would like to ride a free charter bus from the Washington University Danforth Campus (leaving campus at 9:30 a.m. and returning to campus at about 5:30 p.m.), please contact Kirsten Brouillet no later than September 30.
Nicole’s Nook: Back to School Apps
Heading back to school in the fall is a very exciting time, but it can also bring about anxiety and stress for children with NF1 who frequently struggle with fine motor skills, organization and/or executive functioning. However, the use of technology can alleviate many of these concerns and assist children and adults in becoming more productive, functional and independent individuals.
With its variety of accessibility features, the iPad provides many ways to increase efficiency in your everyday life. In addition to the built-in features, the availability of a large selection of quality third party apps turn the iPad into a powerful educational tool.
While I have often showcased my favorite productivity apps, I think they are worth mentioning again with the start of a new school year upon us.
SnapType: This simple and easy-to-use app takes a picture of a worksheet and allows a student to complete it on the iPad by creating text boxes. It also gives the option to print or turn into a PDF that can be exported and shared.
JotNot Scanner Pro: This app takes a picture of a worksheet and turns it into a PDF. It can then be used with another app, iAnnotate, to modify and complete the worksheet. This app enables a student to get started on their work immediately, eliminating the need for work to be scanned/emailed.
iAnnotate PDF: This app allows a worksheet or document to be marked up using a variety of tools such as a marker, highlighter, stamp, text box and more. You can create customizable toolbars and annotate multiple pages. The final product can be shared via email or printed. Together, JotNot Scanner Pro and iAnnotate can complete the same function as SnapType but feature many more tools and options.
Co-Writer: This app has extensive word prediction and text-to-speech features which can speed up typing and productivity. The finished product can be shared via email or exported to cloud-based sites, including Dropbox or Google Drive. It has a main dictionary but also allows topic web-scraped dictionaries, which search the web to find relevant words.
ModMath: This app allows students to create and complete math problems on virtual graph paper. It helps with organization, sequencing and legibility. Once completed, it can be printed or shared.
myMemoir: This is a journaling app allowing you to include a picture or photo. Journal entries can be shared as a PDF, EPUB or TEXT. Many elementary students will journal as a part of their morning or daily routine, and this app can help serve that purpose.
Wishing you a productive and successful school year!
– Nicole Weckherlin, OTR/L
Patient Spotlight: Molly McNeill
Molly McNeill is eight, and was diagnosed with NF1 four years ago. She was born with several café-a-lait spots, so we began to watch for development of a second NF symptom. Her pediatric ophthalmologist observed Lisch nodules on her irises when Molly was four, and a diagnosis of NF1 (spontaneous mutation) was confirmed by Dr. David Gutmann at the Washington University NF Center soon thereafter.
Molly loves to read, and other than some mild attention issues, hasn’t struggled much in the classroom. However, she has had both physical and occupational therapy to improve her gross and fine motor skills. One of the more obvious struggles Molly has had is in the area of balance. From a young age, walking up and down stairs and running have both been difficult for her. A physical therapist suggested dance classes to help with Molly’s balance issues, but I, as her mom, was hesitant. I didn’t want her to have a frustrating experience or stand out in a negative way because of her delays. But she was willing to try and I could see the potential benefit, so I enrolled her in a tap/ballet combination class. She’s done both styles of dance for the last four years, and we’ve tried other types of activities, as well: acrobatics, volleyball, basketball, swimming, tee ball, soccer, cheerleading, drawing/painting, pottery, piano and theatre.
Now, before you think we live in our car, I need to stress we’ve tried all these things; we don’t do them all at once! A great way to try stuff, we’ve found, is through camps and short workshops. There is a volleyball camp, for example, at a local college that lasts two days each summer, and a one-day pottery workshop Molly loves. When trying out new activities, we check local park and recreation centers, Molly’s school, other schools and colleges, and arts organizations (many classes are reasonably priced at all these places with scholarship offerings for many of them). We look for activities that target different areas, like a swimming class that helps with the development of gross motor skills, a theatre workshop for focus, and piano lessons for fine motor engagement.
If I sense a new interest is going to be a struggle, I speak privately with someone in charge before Molly tries it. I explain what NF1 is, how it can affect children, and where I could foresee some possible issues with this particular endeavor. Most people understand if I contact them well before the activity starts (not trying to catch them five minutes before class). When Molly pursues a new activity, we do a short “debriefing” after each session. We talk about what she enjoyed and went well, and what she didn’t enjoy and didn’t go well. Then we talk about our achievable goal for each session: for Molly to participate the whole time and do her best.
There are times Molly can’t do some things that others in the class can do. For example, she can’t do a cartwheel in her acrobatics class. She notices when others can do cartwheels, and sometimes it bothers her. So we think about the goal: Did she stay involved in the class the whole time? Did she try her best to learn how to do a cartwheel? Still, there are times of frustration for her. But there are also times of joy. Because Molly is small for her age, it was easier for her to do a tripod (a headstand with knees balances on the elbows) than others in the class. In theatre class, because she isn’t always socially attentive, she’s willing to throw herself fully into a character, without fear of what others think, while still learning to focus on her lines.
Not all activities stick. I think we’re probably done with tee ball and basketball. But all kids, NF1 or not, can try things and find out they’re not the right fit. Molly’s the second of four kids, and the only one in our family with NF1. But her siblings have varied interests, just like she does; one brother plays basketball and bass guitar, while another likes soccer and drums. And just like Molly, her brothers have tried multiple endeavors to find their best fits.
Participation in this myriad of pursuits has led to some positive changes in our daughter. On a social level, she feels good to be a part of a group or team and has made new friends and acquaintances. Her focus is better, because her consistent goal is to participate in and finish each session, having done her best. As she succeeds in this goal, her self-esteem increases, as does her willingness to take on other interests. On a very practical level, Molly’s balance and gross and fine motor skills are better than they were even a year ago. In fact, she was released from physical therapy, because she is now at grade-level in this area.
My husband and I are learning daily what it means to be the parents of a child with NF1, and I know our family still has much to learn. But like we do with all of our kids, we observe what we think Molly can handle, let her try what she’s willing to tackle, and work to keep our expectations reasonable for her abilities. She may miss a step or two in her tap dance routine at the yearly recital, but when her dance teacher and I cry “happy tears” together because she’s on the stage, it feels like we’re going in the right direction.
– Written by Stacy McNeill
Courtney’s Corner: Improving Leg Strength
Continuing my focus on increasing strength and endurance to enable your child with NF1 to participate in sports and other activities, this month I will be taking things from the core down to the ground. If the core is solid, the next place for strengthening to improve balance and agility are the legs. The legs can be broken down into three key areas: ankle/foot, knee and hip. Each of these critical joints benefits from specific exercises to progress motor skills.
The foot consists of 26 bones, all held together with ligaments. When foot muscles are weak, balance is decreased and the risk of pain and injury is increased. Despite the intricate inner workings of the foot and ankle, strengthening exercises for this area may actually be the easiest to sneak in throughout the day.
Try out the following foot and ankle strengthening exercises with your child:
Switch from walking on tip toes to strengthen the back of the ankle to walking on heels to strengthen the front of the ankle.
Strengthen the small muscles within the foot by standing on unsteady surfaces (such as a core yoga disk or memory foam pillow) while brushing teeth or doing dishes.
Next, we have the knee, which can be a problem spot for children with NF1. Many of the children I treat experience a great deal of “end range” weakness at the knee, which means they experience difficulty in getting the knee totally straight and holding that position. Leg lifts (with really straight knees) can help alleviate this weakness. Also, a variety of fun, daily activities like riding a bike and jumping rope will strengthen and stabilize the knee.
Finally, we have the hip, which connects the leg to the core. The hips do get some benefit from core strengthening activities (detailed in the June Courtney’s Corner blog), but specific hip strengthening exercises are more beneficial to improve overall strength. Perform the following exercises with your child to improve hip strength:
If you believe leg weakness and pain are preventing your child from engaging in daily activities, completion of a brief burst of physical therapy may help. In as little as four weeks of therapy, we can identify which muscles are weak and create a specific strengthening program for your child. Increasing strength to improve your child’s ability to participate in sports and other activities not only has a big impact on motor skills, but also aids in further development of cognitive and social skills.
-Courtney Dunn, PT, DPT
Nicole’s Nook: iPad Accessibility Features
With each new operating system release, iPads have become increasingly more powerful, yet have also remained extremely user-friendly. Adults and children alike are able to browse the web, access content, play games and more through a simple swipe, pinch or tap. With a pinch in different directions, the pressing of a button, rapid double-tap or press and hold, users have complete control over the device. But what if you are physically unable to execute all of those gestures? What if your fine motor skills prevent you from performing the actions that many of us take for granted?
Apple has always strived to make the iPad accessible to everyone, even those with motor impairments, and their recent operating system releases don’t disappoint. With the switch control feature, users can utilize an external switch or even the iPad itself to make choices, open apps and navigate their iPad. Bluetooth wireless switches are available to use, or you can use a Bluetooth switch interface. Some of my recommendations include:
Once you have the Switch, you must first pair the Switch with the iPad. To do this, go to Settings, then select Bluetooth and select the device. After connecting the Switch to the iPad, you will need to turn on Switch Control and add the Switch.
Go to Settings, then General, then Accessibility
Select Switch Control (do not turn Switch Control on yet)
Go to Switches, Select Add New Switch, Select External
Activate Switch by pressing it
Name the Switch
Choose the Switch Action (typically Select Item)
Go back to Switch Control and Turn On
The iPad will now begin Auto Scanning, use the Switch to select when it is highlighted. It will also give you other options to choose from.
To Turn Switch Control Off, Triple Click the Home Button
You can also Triple Click the Home Button to Turn On Switch Control.
-Nicole Weckherlin, OTR/L
YOU’RE INVITED: Club NF Plays at the Lodge!
The Washington University NF Center, in collaboration with the St. Louis Children’s Hospital Foundation, is pleased to announce our upcoming August 2015 Club NF event – Club NF Plays at the Lodge!
Please join us at The Lodge Des Peres in Des Peres, MO on Saturday, August 1, from 9:30 a.m. – noon for an action-packed morning of indoor sports and gym activities. During this event, children will participate in a variety of motor activities led by St. Louis Children’s Hospital therapists, Courtney Dunn, PT, DPT and Amy Westfall, ODT, OTR/L. While the children are working on their motor skills, parents will learn about utilizing technology for increased productivity in the classroom from Occupational Therapist, Nicole Weckherlin, OTR/L.
After the event, families will receive day passes to enjoy the Lodge’s aquatic center with indoor and outdoor pools, so be sure to bring your swimsuits, towels and sunscreen! To learn more, check out our flyer, or contact Kirsten Brouillet at firstname.lastname@example.org. Be sure to RSVP by Friday, July 31 to save your spot!
The Washington University NF Center, partnering with the St. Louis Children’s Hospital Foundation, is proud to provide Club NF — a FREE, bi-monthly, play-based therapy program for children with NF1 in kindergarten – 8th grade. Our St. Louis Children’s Hospital therapists directly interact with the children and use everyday activities to work on skills often delayed in children with NF1. From swimming (motor skills) to theatre (attention skills), Club NF is designed to give children with NF1 the tools they need to be successful.