Though too much routine can become humdrum, a plan for days, weeks and months can help families dealing with chronic illness impose at least a little order on what can otherwise be pretty chaotic lives. I know it well! As the mom of a young man with autism and Type 1 diabetes, routines and schedules play a big role in our everyday lives. So I knew it was trouble this morning when we turned on PBS, expecting to see Clifford at 7:30am and Sesame Street at 8:00am, and instead found a whole new programming schedule.
Not only was this upsetting to me (I LOVE Sesame Street!) but it turned the morning routine on its ear. Alex wandered around the house a little bit aimlessly, and several times returned to the TV to search for his familiar shows. While there weren’t any meltdowns or difficult behaviors, we both felt the disruption.
See, routines have been an essential tool in helping us to teach Alex skills from self-care and hygiene to household chores, and we use routines to manage the necessities of diabetes. Longer term, we fill our calendar with details including weekly chores, appointments, vacations, and even when we will buy plants for the garden. If something is on the calendar, it really exists.
Routine helps me, too. Every morning, I get up and have coffee and read the newspaper and do my puzzles and take the dogs for a walk. If something intrudes on this predictability, I can feel a little off much of the day.
For families with challenges that we never anticipated and over which we may have little control, these little schedules give us a “home base” that allow us to more successfully deal with the unexpected. These embedded routines allow us to find a bit of calm amid the daily chaos.
Now, I wonder if I can persuade PBS to restore their schedule so we can watch Sesame Street before heading out the door into whatever today brings?
Joanna Jaeger is the mother of two young adults, one with autism, both with Type 1 diabetes. All along her journey, Joanna has found ways to connect with other families both seeking and providing support. She has been a long-time volunteer with Parents Helping Parents in Santa Clara, CA (www.php.org) providing help to families of children with a wide range of special needs as a mentor parent, advocate, fundraiser and Board member. She is passionate about food, travel, and baseball.