NF not only causes issues in terms of tumors on the body and other medical ills, but also learning issues. Please read the following interview with
Department of Psychology's Kelly Janke, M.S., of the University of Wisconsin-Milwaukee 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.
4. Discuss some of the medical drug studies that are being done.
Our research lab is not involved in medical drug studies, but please see http://www.ninds.nih.gov/disorders/neurofibromatosis/neurofibromatosis.htm for more information.
5. Have you found NF families having issues with the school in regards to learning issues?
The success that families have in getting services needed is variable based on the school system and the severity of difficulties the child has. NF-1 is associated with more mild difficulties compared to some other genetic disorders; however, children may qualify for an Individualized Education Program (IEP) under the Other Health Impairment category. This category is used when children have an identifiable medical condition (like NF-1), and have learning difficulties associated with the condition that require extra support in school. Children with NF-1 who are also diagnosed with ADHD may also qualify for a 504 plan. Generally, a 504 plan is used instead of an IEP when supports in the classroom alone (without additional special education supports like therapies) can help children succeed. Sometimes the learning or attention difficulties seen for children with NF-1 are a bit subtle. Parents may see them clearly, while schools see only mild differences from peers. In those cases, it can be challenging to show the school that the child needs extra supports.
6. Name some ways that parents can help their NF children who may have some learning issues.
Parents can help their children be successful by getting them a comprehensive assessment at an early age. These assessments are used to identify strengths and weaknesses so appropriate interventions can be put in place. This can help families get the services needed at school and direct parents about how to give their children extra practice with academic-related tasks at home. For example, if their children are having difficulty with early learning skills, it will be important for families to spend time playing rhyming games and reading together, and to talk about numbers and math-related concepts in everyday contexts. Parents can also help their children improve their attention and learn strategies to complete tasks by building up the amount of time their child can spend working in a structured setting.
7. Are parents reluctant to tell the teaching staff NF kids may have learning issues, if so why?
Some parents choose to not tell teaching staff about their child's NF-1 diagnosis to ensure that (s)he is not treated differently than other children. However, awareness of the diagnosis and the types of interventions that may help children with NF-1 is necessary if these children are going to get the services needed. We have found that most of the time, parents find it helpful for teachers to know that their child has NF-1.
8. Can NF kids also have attention issues such as ADD or ADHD in addition to any issues with NF, if so how often does this happen?
ADHD with or without hyperactivity is very common in the NF-1 population, with rates ranging from 30-60 %. For some, there are milder attention problems or organizational difficulties that don't reach the level for diagnosis, but nevertheless have some effect on the child's ability to do their best at school.
9. Name some of the behavioral issues that NF kids might have.
Given that attention problems are so common in NF-1, children with a diagnosis of both NF-1 and ADHD may be at risk for social difficulties. It will be important for parents to teach their children socials skills if any difficulties are noticed, and to give their children opportunities to practice these skills in social situations.
10. Explain the psychological issues that NF kids with learning issues have.
It is possible that children with NF-1 may experience anxiety or self-consciousness related to their physical symptoms and learning problems. There is not currently a lot of research looking at how common feelings of anxiety or withdrawal are in children with NF-1.
11. How and in what ways do the NF learning disorder differ and can they be confused for other disorders?
There is not yet enough research looking at whether the learning problems that children with NF-1 experience are very different from the learning problems of other children with learning disabilities but do not have NF-1. Learning problems in NF-1 are currently assessed in the same way that they would be for other children.
12. Explain some ways that NF kids with learning issues are helped. Are there special programs for them to help them succeed?
Children with NF-1 often have fine-motor difficulties and some have language difficulties. Depending on their pattern of strength and weakness, they may benefit from physical, occupational, and/or speech/language therapy services. Participation in extracurricular activities can give them opportunities to practice social skills. It may also be beneficial to attend NF-1 camps or find a local group to provide social support and show children with NF-1 that they are not alone. Local groups can be found at http://www.nfnetwork.org/
