Molly McNeill is eight, and was diagnosed with NF1 four years ago. She was born with several café-a-lait spots, so we began to watch for development of a second NF symptom. Her pediatric ophthalmologist observed Lisch nodules on her irises when Molly was four, and a diagnosis of NF1 (spontaneous mutation) was confirmed by Dr. David Gutmann at the Washington University NF Center soon thereafter.
Molly loves to read, and other than some mild attention issues, hasn’t struggled much in the classroom. However, she has had both physical and occupational therapy to improve her gross and fine motor skills. One of the more obvious struggles Molly has had is in the area of balance. From a young age, walking up and down stairs and running have both been difficult for her. A physical therapist suggested dance classes to help with Molly’s balance issues, but I, as her mom, was hesitant. I didn’t want her to have a frustrating experience or stand out in a negative way because of her delays. But she was willing to try and I could see the potential benefit, so I enrolled her in a tap/ballet combination class. She’s done both styles of dance for the last four years, and we’ve tried other types of activities, as well: acrobatics, volleyball, basketball, swimming, tee ball, soccer, cheerleading, drawing/painting, pottery, piano and theatre.
Now, before you think we live in our car, I need to stress we’ve tried all these things; we don’t do them all at once! A great way to try stuff, we’ve found, is through camps and short workshops. There is a volleyball camp, for example, at a local college that lasts two days each summer, and a one-day pottery workshop Molly loves. When trying out new activities, we check local park and recreation centers, Molly’s school, other schools and colleges, and arts organizations (many classes are reasonably priced at all these places with scholarship offerings for many of them). We look for activities that target different areas, like a swimming class that helps with the development of gross motor skills, a theatre workshop for focus, and piano lessons for fine motor engagement.
If I sense a new interest is going to be a struggle, I speak privately with someone in charge before Molly tries it. I explain what NF1 is, how it can affect children, and where I could foresee some possible issues with this particular endeavor. Most people understand if I contact them well before the activity starts (not trying to catch them five minutes before class). When Molly pursues a new activity, we do a short “debriefing” after each session. We talk about what she enjoyed and went well, and what she didn’t enjoy and didn’t go well. Then we talk about our achievable goal for each session: for Molly to participate the whole time and do her best.
There are times Molly can’t do some things that others in the class can do. For example, she can’t do a cartwheel in her acrobatics class. She notices when others can do cartwheels, and sometimes it bothers her. So we think about the goal: Did she stay involved in the class the whole time? Did she try her best to learn how to do a cartwheel? Still, there are times of frustration for her. But there are also times of joy. Because Molly is small for her age, it was easier for her to do a tripod (a headstand with knees balances on the elbows) than others in the class. In theatre class, because she isn’t always socially attentive, she’s willing to throw herself fully into a character, without fear of what others think, while still learning to focus on her lines.
Not all activities stick. I think we’re probably done with tee ball and basketball. But all kids, NF1 or not, can try things and find out they’re not the right fit. Molly’s the second of four kids, and the only one in our family with NF1. But her siblings have varied interests, just like she does; one brother plays basketball and bass guitar, while another likes soccer and drums. And just like Molly, her brothers have tried multiple endeavors to find their best fits.
Participation in this myriad of pursuits has led to some positive changes in our daughter. On a social level, she feels good to be a part of a group or team and has made new friends and acquaintances. Her focus is better, because her consistent goal is to participate in and finish each session, having done her best. As she succeeds in this goal, her self-esteem increases, as does her willingness to take on other interests. On a very practical level, Molly’s balance and gross and fine motor skills are better than they were even a year ago. In fact, she was released from physical therapy, because she is now at grade-level in this area.
My husband and I are learning daily what it means to be the parents of a child with NF1, and I know our family still has much to learn. But like we do with all of our kids, we observe what we think Molly can handle, let her try what she’s willing to tackle, and work to keep our expectations reasonable for her abilities. She may miss a step or two in her tap dance routine at the yearly recital, but when her dance teacher and I cry “happy tears” together because she’s on the stage, it feels like we’re going in the right direction.
– Written by Stacy McNeill