Paetra in 9 years old and lives with her parents, Fritz and Charlene, her grandparents, Jo and Bob, and her 5-year old brother, Fulton. Paetra has a number of conditions including intractable epilepsy, dysphasia, chronic bronchitis, microcephaly, and developmental delay, but no formal diagnosis. Doctors call this "Syndrome Without a Name" or SWAN. Paetra attends Southeast Elementary School and has an associate with her at all times. The school keeps communication lines open by sending a tablet and communication notebook home with her every day. "Paetra is very much aware of her surroundings," said Charlene. "She loves to be included and loves to be with her friends. Her face is her voice."
Six years ago, Paetra's parents made the decision together for Charlene to stop working so she could attend Paetra's appointments and be available when one of her frequent seizures or illnesses occurs. The family moved into Charlene's parents' home in Shell Rock, which has been remodeled to meet Paetra's changing needs and to accommodate multi-generational living.
Paetra and her family and have been active in their community, participating as a mentor family for Wartburg College students enrolled in a Working with Different Abilities class and moderating parent sessions for Up with Families. Fritz and Charlene say they don't seen a lot of people with different abilities out in the community and are always looking for opportunities to include others. "Advocating for accommodations, like accessible parking, is not done just for Paetra," said Charlene. "There are other people who will need this now and in the years to come." Paetra's family has also learned the importance of taking time for themselves. "We find that exercising and taking moments alone or as a couple is one of the best medicines we can give ourselves," said Charlene. "Respite care lets that happen and without a double is one of the most important supports that we have found and use it almost every day."
