Inspire Hosts “Summertime Life Hacks: Kids with Special Needs”

Author: NF Network, Breanna Bronowski-Stutsman

Published On: 07/16/2020

Inspire is a global online support community that connects individuals affected by neurofibromatosis. As a part of their summer discussion series, Inspire turned to the community for tips, tricks, and ideas for caring for our children with special needs.

Now that it's summer and so many camps and other in-person activities have been canceled, Inspire wanted to hear strategies or 'life hacks' from parents and caregivers of children with special needs. Together, individuals learned new ideas from each other for helping children with special needs to socialize, stay active, and continue to learn during these unprecedented times.

Carrie Wylie, caregiver, advocate, and mom of 17-year-old Kaitlyn with neurofibromatosis and our #NFStrong Event Chair in Memphis, helped facilitate this discussion in a number of Inspire rare disease support communities. Using her story and sharing her own personal successes and struggles with Kaitlyn, Carrie encouraged others to remember that we are all in this together:

“I am a mother of a 17-year-old special needs child with neurofibromatosis (NF). She has moderate learning delays and poor muscle tone. It's been hard to adapt to the restrictions and still find ways to provide for her needs such as exercise, mental stimulation, social activity, motivation to avoid depression, therapy, and education - just to name a few.

We have had to think outside of the box to overcome the challenges COVID-19 has put us in. We were able to shift many activities to virtual, including cheerleading, dance, and speech therapy. We also arranged virtual meetings with family and friends, including educational sessions with her grandmother, but it’s just not the same. Kaitlyn fights constant pain and needs to be distracted to tolerate the pain. Kaitlyn started to fall into depression from the lack of socialization and activities.

One thing that helped her a lot was a video game that she can safely play with friends and family, while also helping her with hand-eye coordination and problem-solving skills. The most drastic measure that has helped Kaitlyn’s depression included adopting our one-year-old puppy, Curly. Kaitlyn and Curly are constantly in the yard playing and getting exercise. Other activities that have helped her stay active have included riding her adult trike, jumping on her trampoline, and going on walks.

The world is changing, and it’s very difficult for special needs children and their families. Please remember you are not alone.”

While Carrie connected with several rare disease support communities, Inspire is proud to offer an online support group specifically for neurofibromatosis. Join in on Carrie’s discussion here, or check out other posts in the Neurofibromatosis Network Inspire Community here.