Whether you grew up around children or never held a baby in your life, becoming a new parent can be overwhelming. In the blink of an eye your entire life has changed, and you now need to figure out how to care for this little, tiny human. Then, just when you think you might be getting the hang of the parenting gig, a curve ball is thrown your way, and your child has been diagnosed with Neurofibromatosis Type 1 (NF1). Flooding your brain are thoughts of “am I doing this right, will they be okay, how do I help them do x-y-z, how do I know if they are developing appropriately”.
It is common for children with NF1 to have some developmental delays. However, the best way to keep your child on track and ensure success is through early detection. Developmental milestones are skills that most children accomplish at by certain ages. For example, by 18 months of age, we are looking to see if your child can walk without any assistance.
The Washington University NF Center has compiled a list of key milestones for the first 6 years of life.
As a parent, I encourage you to keep the milestone tracker available as your child ages. Not only can you use this to plan activities that focus on specific skills, but it can also open a line of communication between you and your child’s NF doctor.
Lastly, always remember that your healthcare providers are here for you! We want to see your child succeed and help in any way we can.
Madeline Scherr, MS, OTR/L