The lady grabbed me by the shoulder as I had turned around to gather up our belongings after church. “Your son dropped his cards,” she said. I went to look to see where she saw the cards. She grabbed my shoulder again, “How do you do it every day?” I thought she was being friendly and helping out a fellow mom. Then there it was the awkward moment. It was obvious she wanted to ask about P with the fake empathetic question “How do you do it?” There was kind of a standoff of awkwardness trying to fumble around with a polite response somewhere between telling her to mind your own business, and you don’t have enough time to listen to truly understand how we do it. I had to make an exit out of the church by saying “Thank you so much. You know we’d be lost without those cards.”
Let me tell you how we do. It is work. A lot of work. Every morning when we wake up at 4:45 am, my husband and I talk about things going on during the day. Did you talk to P about his appointment? Or did you remind P about his lesson, therapy, etc.? That is getting our thoughts together and able to do the prep work to help P prepare for his day. We spend a lot of our time front-loading information with P so he can have the time to process the appointment, the lesson, or therapy. It needs to be on his radar, so he knows what to expect in his day. We are watching him looking for signs for understanding.
P relies on a visual schedule at home and school. Can we predict the timing for every day? No, because plans change. We call that life happening around us and sometimes schedules change. We remind me that sometimes schedule changes can mean something fun for him. Yet, we are always watching hoping to stay a step ahead.
At school, teachers, counselors, secretaries, principals, therapists, janitors, and lunch ladies all know us. We show up to advocate for P and his additional needs. We passionately talk on behalf of our son to make sure he is getting what he needs throughout the day. Sometimes that is reminders for a sensory break to include heavy work, update on meds, questions about academic standards and accommodations. If we aren’t watching, then who will?
Oh, the appointments we keep. Doctor appointments for each specialty needs. Additional therapies + counseling dot our calendar weeks. We talk about sleeping, eating, pooping, peeing, social skills, social cues, and emotional regulation. We talk about academic standards, workloads, heavy work, sensory needs, fear, and anxiety. We never know precisely why worry pops up in P’s life, but someone is asking, so we are watching.
At the end of the day, as we collapse into our bed, we wonder did we watch closely enough for changes in mood, anxiety, and behavior? Do we know what caused these changes? We will be able to answer the questions tomorrow? We drift off to sleep knowing that this is our life. We wouldn’t have it any other way. We don’t know any other way than to be a fierce advocate, a precise schedule and timekeeper, the never miss an appointment maker and the most enthusiastic cheerleader that both of our children need. So, to the lady at church and to all the other nosy busy-bodies that ask families of autistic children “how do you do it?” That is exactly how we do it. We are no different than your family. We are putting one foot in front of the other just like you loving our children without conditions.
All my best to you,