Every other Wednesday, I take my sister to the gym with me. We have a routine of 20 minutes on the treadmill and then 20 minutes on the bike. Usually this time together runs pretty smoothly and we complete some exercise while enjoying some time together. My sister is very schedule oriented. When there is something to be done, she will do it and do it all until it is done whether she wants to or not, because damnit, that is what is on the schedule.
On this particular gym Wednesday, things were not going so smoothly. I was running later than I usually am. When I got to her house, I suggested that we JUST do the treadmill today since we were running late and I had another appointment to still get to. So far, she was taking all of the change in relative stride. There was some slight humming on the way to the gym, but nothing major. When we pulled up to the gym, the bracelet she had made at her program that day fell off. As she tried to retrieve that and her ID for the gym, her scarf fell off. The humming got a little louder. We got into the gym and the very sweet girl at the desk helped Julie tie her bracelet back on (sidenote: sometimes you have no idea how much a little act of kindness like that goes for us families!). We searched for 2 treadmills together and could only find singles, so I set Julie up on one with an elliptical in front of it that I could use. Of course, the TV on her treadmill wasn’t working…of course!! However, she was still doing ok. I hopped onto my torture device, I mean exercise equipment and about 2 minutes later I heard it. The noise. The noise that Julie makes that I am sure many of my fellow family members are familiar with. The noise that goes through every fiber of your body like nails on a chalkboard. This noise is so emotionally insulting to me for 2 reasons: 1. Because it is such a tone and pitch of humming and whining and quiet screaming that it’s physically uncomfortable to hear. 2. But mostly because it means my sister who I love so much is getting upset, and I won’t know for sure why or how to help her because she can’t tell me. I turn around and her treadmill has stopped. She must have accidentally pulled the emergency stop button. By this time, of course the 2 treadmills on either side of her have cleared (hmmm, I wonder why?) so I set her back up and get onto the one next to her. It’s too late. She is beyond upset. She is making the noise, biting her fingers, crying, trying to take deep breaths, shouting “ I want to stay on the treadmill!!” and responding to every verbal bid I throw her way with a very loud “NO THANK YOU!”
Common sense would say, well let’s just end this activity, right? She clearly is uncomfortable and doesn’t want to do it. She would be more comfortable at home or in the car with less sensory distraction. I would be more comfortable with less eyes casting judgemental stares and questioning looks. However, you must remember, that no matter what…Julie must finish what was on the schedule. That means 20 minutes on the treadmill. She is no longer hearing my language when I say “let’s just do 5 minutes”, “let’s just be all done”, “20 minutes is all done!” (lie) and every time I talk she responds with “NO THANK YOU!!” This is the point where as a sister I start to panic, I lose all semblance of being the Autism Consultant that I am, because this is not a student or consumer, this is my sister. And then it hits me…SHUT UP! Stop talking, she is not hearing you and you are just adding more stress to her system. So I pull out my cell phone and open the Memo app and type this:
I place the phone so that Julie can read what I’ve typed. She looks at me with wild eyes and says “I want to go Jen’s house for dinner” She stops the treadmill and heads towards the locker room. Oh my God! Phew! Relief washes over both of us and we head over to Jen’s house for dinner.
I say this in my professional world all the time: Sometimes we need to change the communication mode. We know that when people with Autism become upset and dysregulated that they can no longer access their language – expressive and receptive. By writing something down, a person is able to slow down the processing necessary for understanding what is being communicated. Spoken language is transient…you say it and it’s gone. When you write something down or draw it out, it becomes static and a person can reference it for as long as they need to process it.
I learn some of my biggest lessons from my mistakes, and Julie has been my greatest teacher.