I was in TJ Maxx with my elderly friend, Nora, last Wednesday when I got a call from Paradigm, Aaron’s day group. I was tempted not to answer it, figuring it was Aaron just wanting to tell me about his day. That could wait. But I wasn’t sure, so I did answer and I immediately knew that the news was not good. Aaron was on the other end, his voice thick and choked with anger and tears. Here we go, yet again, I thought. How I wish that Aaron could stay happy!
I picked him up as soon as I got Nora settled back at her apartment. Aaron was asleep, so I had time to talk to the staff, all of us scratching our heads as to what caused his angry outburst that morning……and what the solution could be. I found out from Aaron later what happened. He tried to give his good friend two McDonald’s coupons and she didn’t want them. She wasn’t being mean to Aaron, just honest, but Aaron felt rejected and very hurt, so he just had a total meltdown.
Thursday was a better day for Aaron. Then came Friday…..
I told Aaron that we would go out to eat when I picked him up at the end of his day. His choice. So he chose Denny’s, of course. He does love Denny’s. On the way to Paradigm, I talked to him about being nice…..being kind with both his words and his hands. About talking to someone if he was angry or hurt. He agreed with everything I said……until he walked into Paradigm.
I was waiting in the van after I dropped him off, waiting for him to come and tell me if they were going to a movie. But instead, out the door came one of his staff. She told me that Aaron had become verbal instantly with another client when he walked in the door. Then out came Aaron, yelling at this staff as he stood on the sidewalk. He eventually got in the van and off we drove. My anger and disappointment and great frustration spilled out in harsh words as we drove toward home. I was so mad at Aaron and mad at myself for being mad, and it just all boiled over.
I pulled into Denny’s, deciding that it might do us both good to be in a neutral place. Aaron sat on the curb before going in, saying that maybe he just shouldn’t go in to eat. I told him to come on and he did, but for most of the meal I just sat silent. I was exhausted and defeated and still battling my anger. Aaron was scared……scared because of all the people from whom he fears rejection, he fears it the most from me. He kept telling me that he loved me……kept trying to share his salad with me…..his crackers, French fries, chicken strips……even reached over, took my hand, and kissed the back of my hand. Yes, he really did that. I wonder who saw it, and what they thought of my lack of emotion?
We ran into WalMart after our meal, where I picked up food for Thanksgiving bags for church, and Aaron tried to help. I still felt numb, tired. After I checked out, I looked toward the bench where Aaron was sitting, and this is what I saw.
Then my heart did stir with sorrow for Aaron as this picture of him was a picture of dejection, and his own tiredness. Oh Aaron, how I wish your life wasn’t so difficult and hard! And how I wish you could understand that you so often make it that way, and yet so often you can’t control the impulses you have that make you make it that way. It’s so complicated!
Aaron went right to bed when we got home. I went to the patio, baby monitor and my Bible in hand. I could listen for seizures while I spent some time unwinding and processing……reading my Bible and praying. I could hear Aaron’s steady breathing on the monitor as I breathed out my prayer to God, asking Him for wisdom to know how to deal with these constant ups and downs from Aaron.
I called my friend, Wendy, who walks this road that I walk. She understands and doesn’t judge. She offers counsel and advice, empathy and understanding. And I know that she prays for us, for Aaron……prays with love and care.
Aaron was awake then, coming outside to test the waters……to see if Mom was still distant and angry. He relaxed some when he could tell that I was better. He smiled when I said that we could take Jackson for a walk around the yard.
We walked down to the back of our yard, around the huge evergreens that hide the very back loop of our property. It’s an area that is hidden from view as you stand on our patio or look out our windows. You would never know it’s there until you walk behind the thick trees that keep it hidden.
I stood looking at the eerie sight. Branches of the old trees there hang low, gnarled together as they bend toward the ground. A finger of the neighborhood lake curls around under the limbs, still holding water since we’ve had such a wet summer. It’s a shadowy and dark place, a little creepy even. It’s interesting, but not warm and welcoming……not a place I want to linger for long.
As we stood there, Aaron talking and Jackson sniffing the bushes and tall grass, it hit me that this is so much like our life with Aaron. Anyone who lives with a person who has autism…..or multiple seizures…..and takes tons of meds to help them…..knows what I mean.
Aaron is funny and smart and often kind. But he is also prone to angry outbursts where he is hurtful and unreasonable. For days we may mostly see the pleasant side of Aaron, but we know that hidden inside him is still the anger and the frustration that he feels, and sometimes releases. It is not a fun place, and it is not a place where we desire to linger. Yet sometimes Aaron makes us linger there as his brain is going through whatever his brain goes through at those times.
I know that mentally and emotionally I must walk away from the shadows that threaten to engulf me when I am overwhelmed by Aaron’s behaviors. He needs me, for one thing. And I need to stay whole and strong, loving and forgiving. It’s not easy, but I must. Friends and family help. A good staff at Paradigm helps. Gary is my biggest help, taking over when I can’t. And definitely, crying out to God helps the most.
Aaron and I turned from that scene, finally, and went back out into the open yard…..to the sunshine and grass……to the full view of our welcoming house. Likewise, given a little time, he and I returned to our normal relationship. I love him dearly. I know he needs me. He needed me when he had three hard seizures during the night on Friday. But he also needed me even more when he was out of control emotionally that day. He needed me to believe in him…..to discipline him……to try to help him even when he pushes me away……to care for him and to love him.
Behaviors are perhaps the hardest part of Aaron’s disability. They are frustrating, embarrassing, and exhausting at times. Families who deal with this need extra love and prayer. Staff who deal with this need the same, as well as frequent thank-you’s for what they endure.
Aaron’s behaviors hold him back in many ways…..and could easily hold us hostage in many ways, as well. But Gary and I know that we can’t let the dark times be our focus. Like the staff at Paradigm says, today is a new day and we start all over.
We don’t always get to choose our view on any given day, but we don’t have to stay forever where the view is scary and dark.
“Today is the day that the Lord has made! Let us rejoice and be glad in it!” (Psalm 118:24)