Maya thoroughly enjoyed herself last night. After seeing her second play, “Charlotte’s Web” a few months ago, she decided she wanted to give theatre-going another try and see “Rapunzel”. So, yesterday evening we headed to the theatre and as soon as we got into the building another parent asked Maya if she was excited. She said, “No, I am nervous.” Apparently the woman didn’t hear her or expected a different answer because the woman said, “Yes, it’s going to be great.” It’s hard for many people to understand how something like a play could overwhelm a person’s nervous system. Sensory integration seems to be an issue for many kids these days, but it definitely isn’t the norm. Maya has to prepare herself for an adventure like this. She is afraid when the lights go down, she has trouble following the quickly changing scenery, and the music and noise often startle her.
When I took her to her first play last year she barely paid attention. She looked around and focused mainly on what her friend beside her was doing. I tried to point out different parts of the stage scenery and help narrate what was going on, but she didn’t seem interested. Perhaps there was too much information for her to process at once. Fortunately, we are much better prepared now for the variety of responses Maya may have to new experiences: fear, boredom, being overwhelmed, screaming, etc.
We try not to fill ourselves with expectations when planning activities because it creates pressure for everyone. We do what we can to help Maya negotiate new experiences. However, it’s difficult to find the balance between helping her learn and experience being successful by moving through her fear, versus reinforcing it further. As she gets older we see Maya pushing herself to work through her nervous system sensitivities without our input. Sometimes she is able to navigate challenges on her own, but other times she ends up retreating from a circumstance feeling too overwhelmed to continue. We don’t always know which outcome is likely so each new activity requires collective patience, creativity and sensitivity.
We have found that on vacations (territory ripe with new experiences) it’s been her older cousin who has given her the courage to push through with success. Other times we have found ourselves in the middle of a tornado of emotions and overstimulation, where our words and intentions just add to the chaos she feels and expresses. In these cases it isn’t until much later or even the next day that Maya is able to piece together what she was feeling and discuss it with us. It’s like a storm that needs to pass in order for her to achieve any clarity.
With all of this background, you now can understand my joy as I watched Maya during the play last night. She not only listened to the dialogue and paid attention, but she also integrated the music, the plot, the sounds, her fears, her toileting, her hunger, her vision, her wheelchair, her tone, and on and on. I wanted to give her a standing ovation. At the end of the play she turned her wheelchair around full circle and started wheeling herself out of the theatre. In the last week she has been eager to try and push herself in her chair whenever possible. Gosh, have we come far from six months ago when everyone wondered if she would be able to propel a wheelchair!
After leaving the theatre we went to get Maya a sweet treat that she asked for several times during the play. We found a nearby coffee shop that also had a gift store. She said she wanted private time and wheeled herself away from us. As we both watched her I thought to myself that her body language said, “I got this one guys.” At one point when she crashed into something in the store she yelled to her father, “I’m OK Dad,” a clear signal that she knew he was watching and didn’t want him coming closer (we were watching her from a little distance away). She said she was in “cute heaven” because everything in the store was so cute and she wanted to stay there and enjoy it (alone). I think more than anything else she felt excited about being able to enjoy the play and her newly found freedom in moving through space without her parents’ interference. I can only imagine how wonderful that must feel to her. Keep going Maya; we are behind you, beside you, and we are here to guide you whenever you need us. We know it isn’t easy, but your rare blend of self-acceptance and self-confidence are leading you and us to new places.