ONCE UPON A GENE - EPISODE 196

A Rare Collection - School’s Out for the Summer

There's power in storytelling- for the listener and the storyteller. A Rare Collection is a monthly series featuring people from the rare disease community, sharing a story with a common theme. 

EPISODE HIGHLIGHTS

Karen Pratt

When school lets out for the summer, it's stressful and I have to prepare in advance because I depend on school care for my sons so I can work. I recently received a call that my son Jack would be getting a nurse. Unfortunately, we have been through several nurses who weren't well suited for my son's care. It's been frustrating to not have the help that's desperately needed. My oldest son Luke doesn't qualify for nursing, despite not being able to walk or talk, depending solely on adult care. It's been another stressful summer without sufficient help, balancing all the demands of caring for them at home, working and doing the other things I need to do. 

Julie Anderson

While other families are opening their pools and planning getaways, my husband and I are planning for our daughter's summer and navigating the effects of CTNNB1. Summer has become synonymous with stress and anxiety for our family. We've noticed that our daughter's meltdowns increase in frequency during school breaks, particularly over summer break. She thrives on structure and the stimulation school provides. We can't provide the same structure, stimulation and attention she receives from aids and teachers at school. We've learned to plan ahead, feel our feelings, adapt and move forward. We found ways to make the summer enjoyable and we've even planned time for ourselves.

Jennifer Spina 

When I think back to my carefree childhood summers, I recall swimming, running through the woods and exploring with friends. Summer break looks different now. The world is generally inaccessible for a child with physical and cognitive disabilities. The uncertainty and planning for a parent is intimidating and isolating. It's hard to be different and stared at. It can be painful to be surrounded by the able-bodied comparison of your child. For a long time, I avoided situations and places that would trigger me. During a neighbor's backyard gathering, I realized that I didn't want to be the reason Nora couldn't experience true inclusion and relationships with our neighborhood children. 

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