A few weeks ago I received a paper in Mark’s preschool folder with two of the most anxiety-provoking words for a special needs parent, field trip. Mark’s class would be visiting the theater on campus where I work for a kinder concert. I couldn’t imagine sending him anywhere outside of his routine without one of us going along so I requested to meet them at the theater; after all, he was literally in the building next to my office. So when I found myself waiting for the bus inside the lobby a pit of worry set in and I quickly questioned my chaperoning choice. Mark is getting larger and more difficult to handle, and I’m a very petite person. Then a deep feeling of sadness took over as I began to think about how my presence doesn’t seem to really fix anything. Unlike when the baby falls and quickly recovers at the sight of my face, for Mark, seeing me may be a novelty for a moment but it doesn’t appear to change much.
Mark did better than I anticipated, adjusting to the new setting as we followed along to our seats in the theater, but then when the expectation was to remain there and be quiet, it was clear that I had a fight on my hands. Just as soon as I began counting the minutes until we could leave I realized that I needed to change his diaper. Fully aware that there were no places to change him in the building that wouldn’t freak him out I took his hand and lead him to my SUV in the staff parking lot. It was cold, raining and I had very little space in the back hatch area thanks to the boxes of clothing that needed to be dropped off at Good Will.
He cried, we wrestled and I prayed that none of my co-workers would pull in next to me to see me struggle.
Once I finished the diaper change we headed back into the building and I prayed that he wouldn’t grow upset once he realized we weren’t leaving. I just kept telling him that once we got inside we could listen to music. We made it back into our respective row and our previous physical altercation resumed as I fought to keep him from escaping. At first, he was subtle, pretending to cuddle in my lap in an attempt to spin into the aisle, and then he resorted to trying to body slam me. My jaw and nose absorbed some of the force and then I looked up and realized that an entire row of kindergartners and their teachers were staring at us. Mark’s vocal stims, loud noises and attempts to overtake his mother not surprisingly distracted them from the musical selection on stage. I also started to worry about not being able to handle him in the presence of his teacher and assistants. They handle him everyday and here is his mom unable to do so. Feeling the familiar sense of anxiety and dread, I decided to practice my newly discovered self talk. I began to silently say “I know this is really hard, don’t worry about people staring, just continue to love on him. You’ll both be OK, and this will pass soon.” I felt myself relax and my silent internal monologue was right. With the help of showing Mark photos of his little brother and telling him to listen to the music, I kept him in our row and it was over relatively quickly.
A few days before the field trip I listened to a Ted Talk by Kristin Neff who explained that she was a self-compassion evangelist, spreading the good news of treating ourselves kindly. Being nice to yourself probably seems like a given but for me it was foreign. And I didn’t realize just how foreign until the end of her Ted Talk when she told the story of her own autistic child throwing a wicked tantrum on a transatlantic flight. Knowing that there wasn’t much she could do to stop it mid air, she paused, focused, placed a hand over her heart, and in a sweet, compassionate voice said to herself “This is so hard right now… I’m so sorry you have to deal with this, but I’m here for you.” Upon hearing such inward-focused gentleness the tears that I’ve held back for months burned my eyes. And it was in that moment and during the subsequent therapy session when I realized just how awful I had been to myself.
My therapist had asked me to go deeper and to think about what was beneath the fears that I had unpacked. It took me some time but I realized that though I feared that my children would die, even more so I feared that it would be my fault. I would be responsible. I truly believed that every challenge we faced was my fault.
And it was this assignment of blame that plagued me and lead to the constant berating that has become the norm in my head. Common inner sayings would be,
“Why are you so tired? Now that you put the kids to bed go back downstairs and clean the kids’ playroom. You know that Mark thrives in a clean space. What if he or the baby chokes on a Barbie shoe?”
“Mark needs more variety in his diet. His restricted eating will only worsen if you don’t figure out how to work in new foods.”
“Mark isn’t talking because you don’t work with him enough.”
A lazy, incompetent failure is the message I had been sending myself on a daily basis for quite some time and deep down I had also adopted the idea that I was ultimately to blame for Mark’s diagnosis.
Clearly, I have some work to do. Blame doesn’t need to be assigned to everything and I need to work through why I assume responsibility for it all.
So when I was introduced to the idea of speaking so sweetly to myself I ran toward it with open arms because I had been so parched for kindness that I forgot what it was like to be treated this way. So in that theater, wrestling my sweet boy, I decided to make a small choice to be loving and gentle to myself. And in doing so, I made it through a challenging moment and was able to see that I didn’t fail Mark, and in fact, I may have actually been comforting to him.
Later that evening I said to him “Mark, it was so special for Mommy to go with you today.” And surprisingly he responded and said “special”.
He’s pretty special, and I’m trying to work toward embracing that his mom might be too.