Over the past few days, I had the opportunity to read various Facebook and email comments about children being newly diagnosed with the dreaded Neurofibromatosis disease. I have also spoken with mothers who worry about the effects of this disease. This is certainly understandable.
Tumors–one ugly word; and I am not kidding–a very ugly disease. The tumors that present themselves can be seen under the skin; visible to the naked eye and so incredibly persistent–not to mention painful!
These tumors are only one part of this disease though. There are so many challenges for these kids and the tumors are only cosmetic. While this is still terrible, consider the idea that most kids with NF1 get through puberty with very few nodules. At the onset of puberty, many children have already shown as many nodules as they will get until they are about 40 years old.
At first, it might be difficult for parents to understand the challenges their child will face, but there will be many. It’s important for parents to realize that, although thier child will most likely have a learning disability, they should continue to concentrate on education and making their child’s life as normal as possible. For example, parents can help their children advocate for themselves by including them in simple day to day outings and errands and to be as independent as possible; everyday can be a learning opportunity.
Parents who work together with the teachers and school administrators might also find community support groups and counseling if needed.
Teach the school administrators that just because NF1 falls under the “Other Health Impaired” area, it doesn’t mean the student has ADHD, ADD, or some other unexplained behavior; therefore, the school should not treat this as such. This disease has some very real processing and language development delays; early intervention is imperative.
It is important to keep your student motivated and attentive. Try not to focus on the tumors. Focus on what your child can do, is able to do, and wants to do.
Picture Credit: Children’s Tumor Foundation
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