As the school year wraps up, so does the predictable routine that comes with it. We understand that for many Rett families, the long summer break requires additional planning and helping hands. To support families as they prepare for the season ahead, we have put together a few tips to help make the transition into summer a little bit easier.
#1: Sign Up for My Rett Ally
In 2023, IRSF partnered with the team at mejo to create the My Rett Ally app. The app allows users to keep all of their child’s important information – from medication lists and tracking to insurance cards and phone numbers – in one safe place.
Whether enlisting the help of additional family members or sending a child to a new camp or program, care teams often expand in the summer. With My Rett Ally, these additional care team members can be quickly and safely added to the app for access to the child’s most up-to-date information.
For Rett mom, Katy, the app helped her organize everything related to her daughter’s care in one platform. She admits to having a helter-skelter way of keeping track of medication records and important contacts before adopting My Rett Ally. In addition to feeling more organized, being able to have someone pick up where she left off provides her with a great sense of relief.
Read more about Katy and the My Rett Ally web application
#2: Take Care of Yourself & Look for Support
As the caregiver of an individual with Rett syndrome or any chronic disease, it can be difficult to prioritize yourself and your own health. However, maintaining your health is a key aspect in providing the best possible care for your loved one.
In an analysis of data collected through the Rett Syndrome Natural History Study, researchers looked at the different factors that impacted the physical and mental health of caregivers. One factor they found to adversely affect the physical health of the caretaker was limited personal time (source).
During the summer months, personal time can be even more limited than during the school year. While it can be challenging to take time away to recharge your batteries, utilizing tools like My Rett Ally, connecting with other Rett families in your community, and reaching out for support can help to make this critical time away doable.
#3: Attend the RettAway!
A destination vacation with other families who understand the joys and challenges of Rett syndrome? Sign us up! At IRSF, we are committed to helping families with Rett syndrome thrive and our RettAway events are held in locations that allow just that.
This year’s RettAway event will take place July 9-12 in the San Diego Area in Southern California. From beach days at Oceanside Pier to a visit to the San Diego Zoo, we have it all covered. Attendees will also have access to a private Facebook group where they can meet other families and do some planning before arriving in San Diego. All we ask is that participants show up ready to have some fun.
Learn more about the event and register today
#4: Maintain a Flexible Schedule
Every individual with Rett syndrome has distinct needs that evolve over time, so it is impossible to create a one-size-fits-all care plan for the summer. However, if there are routines – like mealtimes and sleep times – that are already established, it can be helpful to maintain them into the summer months. While the schedules won’t be as rigid as the school year, they can help to provide predictability and reduce anxiety for the individual with Rett as well as the carer.
While families can be faced with challenges over the summer, the break in the typical school routine can be a good time to explore different therapy options as well as fun activities. From adapted swimming to visits to the library to family movie nights, focus on the activities that the individual with Rett enjoys.
For those families looking to take their summer adventures on the road, consider spending some time updating the My Rett Ally app before taking off. Rare disease dad and mejo CEO, Ryan Sheedy, offers this advice:
“Traveling with someone who has Rett syndrome isn’t as simple as packing a bag, it means bringing meds, schedules, emergency plans, and a hundred ‘what-ifs.’ That’s exactly why we built My Rett Ally. It’s not just an app, it’s your go bag, your backup, your voice when you’re exhausted. This summer, don’t just hope things go smoothly—prepare for it. My Rett Ally gives you one place to organize, share, and advocate wherever you go.”
The web app is free and available here.
What are your summer plans? Do you have any tips on making the most of your summer that you’d like to share with the Rett community? Let us know!