OARacle Newsletter

“Gotta get up, gotta get going…” This beginning of The Many Adventures of Winnie the Pooh theme song often plays in my head. My response is usually “Ugh, I’m tired and not ready.” It can be hard as an autistic parent to not start the day feeling daunted, but my bright-eyed autistic child is definitely ready and has little patience for my slow rising. If either of us waits too long, dysregulation starts to set in. So the routine starts with the same breakfast of champions of the past year and a half: Stonyfield yogurt and cheese or, sometimes, we add a smoothie and Cheerios.

Everyday Living

When it comes to everyday living, each day is full of an ever-evolving toolbox of strategies and supports for myself, my child, and my family as a whole. This school year seemed to require even more strategies as my child is in one school program in the morning and another in the afternoon to meet her IEP needs. In addition, my hours at work had increased, and I was doing morning drop off, midday pickup and drop off, and afternoon meetup to get my daughter off transportation. That was just the school routine. We also had to make time for speech and occupational therapy meetings, my therapy appointments, IEP meetings, and check-ins with her teachers. What we’ve learned so far is:

• Routines can look different for different people. For my family, the core of our routines look the same, but the intricacies often change day by day.
• Over-scheduling is a real thing. We had to cease all after-school activities and schedule sports, social events, and recreation on the weekends.
• Reducing my work hours is best for me and my family’s everyday living this year.
• Having a morning school backpack and an afternoon school backpack helps keep things organized for both me and my child.
• Building in a lot of decompression, such as meditation music and box breathing, for my child after school and for me after drop-offs helps keep us centered.

The Plight of Executive Functioning

One aspect of everyday living that is essential and yet feels like a roller coaster is executive functioning. As an autistic parent of an autistic child, I sometimes feel we are running in circles and getting nowhere. I remind myself that we are not alone. It is the daily plight of parenting in general. Our strategies are not foolproof, but they do help keep us afloat. Here are some of the strategies we use to manage executive functioning challenges:

• Advance notice: This allows us enough time to make sure we all have what we need for work, school, and family time. We can set up accommodations or changes if needed, and we are prepared to be successful in the sense of having the greatest chance of being present in the fullest way that works best for us.
• Time management: Using timers or visual timers to manage time is helpful for me and my child. I struggle with the perception of time and how much time I actually have. So I use the alarm system on my phone for high-priority tasks, such as getting in the carline to pick up my child. I have one alarm to close out work tasks, another for getting items to leave, and a third for when I should be getting in the car. These help me to keep track of time and not get lost in one aspect of transitioning.

For my child, time is attached to transitions. She likes the visual countdown timer on my phone. This allows her to see how much time she has left, and she gets to pick which interactive image is revealed when time is up, such as a fish tank. We let her know when she has a minute left to pick one last thing to wrap it up. If it is something she isn’t finished yet, she can use a bookmark or choose where she wants to leave it to come back to later.

• Organizational tools: Using organizational tools, such as planners or checklists, helps both of us. My child’s morning and wake-up routines are available to her on a visual board and through the ChoiceWorks This helps her with the routine and the two hardest transitions for her: getting ready for school and getting ready for bed. My partner and I use a combined Google calendar, and I use the Clear app to break down my day or make shopping lists, etc. This helps me also break tasks down into smaller steps.

Learning Curves

One of the biggest learning curves I’ve encountered is the difference between capable and capacity. It is important to remind myself that I am capable of the everyday living required of a dad and a spouse, because stigma-based messages have told me otherwise. Capacity, on the other hand, is fluid. Every task of everyday living has a different energy requirement and cost depending on the day. Some days I need to use the Instacart shopping service for help with household grocery shopping. Having a simple crockpot meal can help with dinner and a meal for the next day. ChatGPT can help me construct an email response when I am having trouble putting words together. These strategies and more conserve my energy so that I don’t burn out.

We have also learned how to help our child get the input she needs for her body. We now have a trampoline, a scooter, and a The scooter also helps her when she needs a movement break or moving from one task to another such as getting ready for school. She can get her shoes on, ride her scooter around the kitchen twice, then get her coat on. This also helps me as an autistic parent to stay regulated because it doesn’t become a power struggle, and we are still making progress toward getting out the door to school.

No matter how much we prepare, how many strategies are in the toolbox, how much we love a specific routine, life requires pivoting. Pivoting for me is an unexpected transition in which my child looks to me to navigate the sail that I had no idea was going to shift. For example, the road is closed on her way to school, which means we need to take a different route, and I need to help calm her heightening anxiety. Or we leave the house for school, I turn to shut the door behind me for 20 seconds, and she is gone. Panic sets in as I search, then find her on the other side of the neighborhood going for a walk to see a dog. That was not the only time she disappeared. In addition to pivoting in the moment, my partner and I had to learn about eloping.

The Many Layers of Advocating

As an autistic parent to an autistic child, I have discovered the many layers of advocacy within everyday living. For example, I advocate for my child by helping her to take off clothes when she communicates that she needs a sensory break when she gets home from school. Other ways I advocate for her are getting the water temperature right for bath time and finding the stuffed animal she needs for the car ride to school and ensuring it is buckled safely too. She gives me the opportunity to support her in meeting her needs as well, for example, when she needs deep pressure therapy, such as me pushing down on a cushion on her body, or she wants to play the movement challenge game—picking different cards we made that have movement-based activities on them.

I, on the other hand, have to check-in with myself each morning to see if I will need to advocate for my needs to meet the tasks of the day. I use a color zone system:

• Green means I’m good to go, and I am functioning at full capacity with the ability to handle unexpected moments if they occur.
• Yellow means slow down and proceed with caution. I might use my headphones and low light to block out some external stimuli. I might use the calm strip on my laptop when completing work with a cup of ice chips to chew on next to me. These things help keep me regulated and connected to my body when I am in the yellow zone.
• Orange means I am struggling, overwhelmed, and overloaded. Everyday tasks take extra energy. I have energy for parenting and nothing else, and parenting requires me to tap in to extra support, like my partner. In this zone, I also have the work accommodation of reduced hours and workload. These strategies are important to me as they support me from going into a red zone.
• Red means I am in intense burnout with suicidal ideation. If I am in this zone, I use the support of my therapist, my partner, my safety plan, and other support networks. I take a sick day from work, and I try to engage in a high-impact activity for a short time to help release some of the boiling pot energy in my body, such as a cold shower or boxing, and then try to rest.

Take Away

As an autistic parent of an autistic child, I sometimes feel like we are on our own island in the midst of a large community. However, when I get the opportunity to listen to a podcast, read a blog, or connect with other parents, autistic adults, or adults with disabilities, I am reminded that we are not alone because we are all navigating ups and downs. Whatever your household or window into your everyday living looks like, we’re all on this journey of everyday living together.

Kris McElroy is a biracial Black autistic transman living with multiple disabilities. He is a human services professional, public speaker, writer, artist, and advocate living in Maryland with his wife and daughter. He earned his bachelor’s degree in psychology from the University of Maryland and his master’s degree in multidisciplinary human services from Capella University. Since 2009, he has been a dedicated human services professional serving in many different capacities to support various communities. Additionally, he has been a cast member of the Telling This Truth Theatrical Production for trauma survivors and has self-published several books and workbooks.