Back to School and NF Kids

With the new school year well underway, many kids are excited to go back. At the same time, some NF kids may face some social and behavioral issues. Let's revisit our interview with the University of Wisconsin-Milwaukee Psychology Department's Kelly Janke, M.S., to learn more about learning issues and NF children.

1. Discuss some of the learning issues that you have seen with NF children in school.

Children with NF-1 are more likely to have learning difficulties than their siblings or same-age classmates who do not have NF-1. The rates of learning disabilities range from 30%-65%. Difficulties have been seen in all academic areas including word decoding (sounding out words), reading comprehension, math calculation, math problem solving, and spelling. We really see a lot of variability in the learning profiles of children with NF1.

2. I understand you’re doing a study on NF kids and their siblings, could you discuss that a bit further?

For our study, we recruit children with NF-1 and their siblings between the ages of three and six, and plan to follow them annually up until the age of 10 if possible. The goal of the study is to examine the cognitive and behavioral characteristics of NF-1 in young children to determine if we can see early signs of learning and attention problems. We are also hoping to learn more about the development of cognitive skills over time, and determine if this development differs from their siblings or other typically developing children.

3. What are some of the preliminary results you are finding?

We have found that learning and attention problems can in fact be identified in the preschool age range. There is no clear pattern to these difficulties. For example, some children have difficulty with verbal tasks (e.g., naming pictures, following directions), but do well on spatial tasks such as building with blocks. For other children, the opposite pattern is seen. Regardless of the pattern, most children with NF-1 have some difficulty in at least one area, although it may be mild. It is important that these difficulties can be identified at this young age because that allows interventions to be put in place earlier and prevents more pronounced learning and attention problems. 

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A Little NF Talking Circle

On March 11, 2012, the Littlest Tumor Foundation held its first quarterly “NF Talking Circle” at the Medical College of Wisconsin in Milwaukee, Wis. Present were adults, kids and families that are impacted by NF.

In the circle, people discussed their NF journeys with each other. It is powerful to talk with others who understand your situation. Meanwhile the children did activities such as painting, thank you card writing and game playing. Healthy snacks such as apples, blackberries, pita chips and hummus were provided. Beverages such as coconut water, along with pineapple and orange juice was served. At the conclusion, many of the attendees enjoyed the circle and it was decided by LTF leadership the “ NF Talking Circle” was a success and will be held again in early summer 2012.