People often ask me how we know how Alex is feeling or what he's thinking. It's a fair question, one with an answer that is both complicated and uncomplicated. He doesn't speak, so it takes detective work on our part. At the same time, how do you know how your infant is feeling? How do you know your partner is upset or pleased with you without them saying a word? There's an old adage, "being unable to speak is not the same as having nothing to say." We're learned to pay attention.
Which brings me to the Lion King. A day like this was many years in the making. It is the culmination of years of work helping Alex with his many sensory issues and with self-regulation. Many therapists and teachers have helped him, and us, to learn how his brain and body work and what he needs. It involved intention and practice.
More than 10 years ago, I'm not sure exactly when, Alex attended his first traveling Broadway production. The show was Wicked, and he'd listened to the cast album dozens of times. This was the show we felt would be perfect to capture his attention, and we felt he was old enough and had acquired the skills to attend a performance. This was years before special sensory performances for people with autism on Broadway, and years before the kind of publicity that exists today to help the public be aware of individuals like Alex.
There is nothing spontaneous about taking Alex to the theatre, or about trying a brand new experience. That was even more true 10 or 20 years ago. We prepared for Wicked by continuing to listen to the cast album and talking about the upcoming trip to the theatre. We drove by the theatre. I contacted the theatre to find out about handicapped seating. (Accommodations for physical handicaps were much better understood than for so-called "invisible" disabilities.) I created a social story that we practiced for about a week before the event. A social story is basically a script, with text and photos, that helps someone rehearse for an event. The story described what Alex would be doing and contained photos from the show and photos of the theatre. We also learned over the years that preparation had to be early enough before an event, but not too early. Starting too early - more than a few days or a week - created anxiety as well. We got box seats. The movable chairs that are perfect if you are in a wheelchair so the chair can be removed are also perfect for Alex. If he rocks a bit, there is no one immediately around him that would be bothered. John and I can physically draw our chairs nearer to Alex to provide some comfort in proximity. We had an escape route to the bathroom planned. We had a bottle of water. (This was when they were just beginning to allow water in the theatre and before wine, snacks, and drinks of all kinds went in with people.) We brought noise -cancelling headphones, because Alex's hearing is so sensitive he can hear everything he needs to while wearing them. We were also prepared for the fact that all of this preparation might fail, and Alex would be unable to stay for the performance, that he would need to leave mid-way. We tried to predict every aspect of that day for him.
That first trip to Wicked was a rousing success. Alex loved the show. John and I loved watching Alex love the show. It was the beginning of many trips to the theatre. Alex has seen Wicked multiple times, and one of the times through he even got to meet the actress who was playing Glinda and she gave him a backstage tour.
More than10 years of preparation went into our attendance at Lion King. Our entire day is orchestrated to help him have the internal resources he needs to enjoy the show. We brought him home for the weekend, so that we could have a quiet day leading up to the performance. Going to the PAC is now familiar to him, so there is no longer the need for a social story. We had been talking about the show for awhile, though, and the way he repeated "Lion King" indicated he understood what we were talking about. We watched a few YouTube videos of scenes from the musical just before leaving home for the theatre.
Now when we got to a show we have an established routine, which helps Alex (and all of us, I suppose) immensely. Once again, I experienced the joy of the performance, and the joy of watching Alex enjoy something that I love so much. He did an amazing job sitting still without rocking, and watching without vocalizing - two things he does to self-regulate. He watched intently, taking everything in. There is no doubt that he was enjoying everything about the show.
It was all quiet easy, really, or seemed easy. It was after the show when Alex showed us just how much effort it takes for him to do something like this. Once the performance ended and we got to the car, the vocalizations started. One way he self-regulates is by making vocalizations. If he is tired, sick, or anxious, they can be quite loud. He did not seem agitated in any way - his body language was not agitated - but he had to vocalize. He had to do some rocking as well. We went for food after the show, to a familiar restaurant where we knew he would be comfortable because going out to eat in itself is something he enjoys but that requires a lot of effort on his part. The contrast made it so clear to us that he used all the effort he could for the performance. It showed us how much he's learned and how much control he's gained.
At that point, he had done all he could. We apologized to the server, but at that point we knew Alex was going to have to do what he needed to do. Food helped (there was surely a bit of "hangry" going on, or as we call it with Alex, "hanxious") and within a couple of hours he was able to relax. The amount of time it takes him to regulate after a big event has decreased tremendously over the years as well. When he was little, going to a movie took a day or more to recover from. Now, going to the theatre took a couple of hours to re-regulate everything.
It really was a wonderful day. It made me glad that we've invested the effort over the years to give Alex these experiences, and it made me appreciate how far he's come. I can't wait to take him to his next show.
