Meet a Child with NF1

Alex's Story about School

GEMSS would like to thank Alex and his mother for their generosity in sharing this story with us. You have made the site come to life with the addition of your thoughts and feelings. Thank you so much!


stock image of an apple on top of a stack of books
A boy with Neurofibromatosis 1

Alex is in 4th grade and is now in a school in his town that can offer him the opportunity to be included with peers who have and do not have disabilities. He loves his new teacher and one-on-one paraprofessional! A good day at school means he has been using his Alpha Smart and can breeze through his math problems. He also has a smoother day when he has used the computer for writing and math, two things that are made easier with the support of this welcome technology.

He is mild mannered and tends to keep a distance if he does not know other children well, preferring to observe from the side than to jump into the fray. It is a bit difficult to mix in since he is new at his school. He has some very good friends, one from his old school. He enjoys playing his tablet, learning new games, internet surfing, and becoming privy to the world of technology. 

At home, Alex is working on being more independent with his homework, although his mom or grandmother or teens in the family are there to support him to understand and break-down the instructions. Once he understands the instructions, he can do the work! At school, sometimes he might pretend to know the instructions so he can seem to “fit in” with his typical peers but may not quite get the meaning. For example, he came home one day with a question about the word “incentive” and he needed help to understand that word.

Alex was diagnosed with NF when he was 4 years old. He doesn’t talk about NF at school but will talk about it at home where he is much more expressive. 

His mother hopes to help others with their story. Her strongest piece of advice is not to wait too long if you think a school setting is too restrictive or is not providing adequate support. In hindsight, she wishes she had helped Alex have the opportunity to be included in typical classes earlier so that he might possibly have gained more skills socially and further develop his vocabulary.