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. The tumors that present themselves with this horrible disease are ugly; 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 is hard for parents to understand the challenges their child will face. There will be many, but it is important for parents to concentrate on education and making their child’s life as normal as possible. Help them advocate for themselves so they are able to get a job and fit into society. When they get to high school they can take the classes needed to get to college. When they get to college these children will be young independent adults.
Parents who work with the school might also find outdoor 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
Let's Talk!