The days are long and I can barely remember the days when I had a break. It’s amazing how caregivers adapt and I wonder what toll it’s fully taken on me. I never sleep well, because Allen doesn’t. I definitely don’t eat as well as I used to and forget about real exercise. As a single mom with no family nearby or able to visit, my support system is dwindling. Everyone is suffering in their own way and self-preservation seems to be priority one for most.
I think about how structure and routine is so important to my autistic son but realize how important it also is for the caregiver, making time during the schedule and routine to take care of me and teach Allen that not only am I “Mommy” but I’m a person too. I struggle with how to manage his wants/needs throughout the day with distance learning, work, his daily care, errands and self-care for me, which always comes last.
Every day I wonder what I can do differently, how I can come up with new techniques. One of several things the pandemic has taught me is that I have to accept that things can change one day to the next. How do I manage it all? I decided to come up with a list of what would make managing the care for my son (and myself) easier every day no matter what came our way. Enter…technology.
First, I would love reminders for feeding. Often, activities or tasks take longer than expected and my picky eater sometimes takes time to get a proper meal in. Hunger can lead to mood problems and meltdowns. I would also like the capability of adding in last-minute changes in the schedule, a therapy appointment, opportunity for a play date or scheduled and needed “quiet time” for both child and mom. Also, set reminders so I can make the transitions easier. If I know, we will need to leave the house or have a distance-learning or therapy session, a particular amount of time to prepare for the transition. This can be particularly stressful for both of us and often leads to a meltdown, (i.e. a desired toy needs to be found, a more verbal or visual explanation needs to be made with enough time, a sensory diet prior).
Speaking of that, reminders of sensory diet times are essential. If I could be reminded of those best times and before certain tasks that require concentration to keep Allen regulated would be incredibly useful. One thing that the pandemic has taught me is that Allen is not the only one that craves schedule and routine and predictability, I do too. It has truly helped med understand Allen even more and empathize with how difficult these transitions can be. Caregivers like me need support and I do need the help of something that only technology can provide…pandemic or not.