How a Support Group Just for Kids Works
Melody and Ryan Sandell are nothing if not busy. In addition to being Legislative Liaisons, the pair also leads the Minneapolis Support Group for kids. Here Melody describes how her group works and the way it differs from a traditional support group:
“I’m Melody Sandell, and I and my husband, Ryan, lead the Minneapolis Support Group for kids and teens. We have a daughter, Kayleigh, who is 10 and has had alopecia areata since she was 18 months old, and a son, Ty, who is 12 and is her biggest advocate. Our group is a subset of the larger Minneapolis Support Group led by Heidi Odmark. Heidi and I work together to help support those with alopecia areata in the Minneapolis area; Heidi coordinates the larger group activities where everyone is invited and I coordinate activities specifically aimed towards kids. When our daughter, Kayleigh, was diagnosed with alopecia areata we heard about the support group from our dermatologist, Dr. Maria Hordinsky. We were thrilled to meet others with alopecia areata, but we quickly noticed the issues we were experiencing with our young daughter were not quite the same as those the adults in the group were facing. We loved to hear their perspectives, listen to them share their knowledge, and receive the love and support they offered. However, we wanted our daughter to be able to meet children her age with alopecia areata to form relationships and friendships that would be fun for now, but really set the stage for support in the future.
“The kids that first met years ago through this group have grown to know one another better and also have opened their arms to welcome new children as the group continues to expand. The kids have become great friends and love spending time together. We intentionally plan activities to supplement regular support group meetings with time for the kids to play and have fun together. We have met at several park playgrounds, gone ice skating, had a pizza party, swam at a pool party, and are planning to go snow tubing next month. This is in addition to the larger support group meetings that include regular meetings, sporting events, bowling, picnics, fundraisers run/walks, and more.
“We know the kids are young and are not really interested in talking about their feelings—yet. Our hope is that they form these relationships now, and then when they need a supportive shoulder, the framework will be in place. What has really surprised us, though, is the support that is needed by parents. We started off thinking this was for our kids, but found that as parents we benefited, too. It has been great to share school experiences, discuss medical options and decisions, share hair piece and hat tips, talk about diet and nutrition, learn how others have dealt with bullying, and talk about our feelings around alopecia areata and our children. It also has been a great way for siblings to learn about alopecia areata and see others with the same condition as their brothers and sisters. All around, it really has been a joy for our family to be involved in this group.
“Through NAAF, we have also become more active in advocacy efforts. Kayleigh and I have been to Washington, DC, and have met with local congress members to advocate for alopecia areata. I am honored to have had this opportunity to raise awareness and am thrilled that Kayleigh has had the opportunity to join in on the advocacy, too.
“My hope is that through NAAF, our local support group, our kids and teens group, and our advocacy opportunities, we are able to raise a daughter who is bright, bold, confident, smart, funny, happy, and loving—and who just happens to have alopecia areata. I hope to share this goal with other parents, especially when they are first embarking on this journey of navigating raising a child with alopecia areata.”