Last night, I had the privilege of attending Pangdemonium’s production of “Falling”, a play about a family struggling with autism, and participating in the post-show dialogue on stage with the cast. Saying that it was an emotionally charged evening would be an understatement.
Although I had initially questioned whether I needed to watch a play that was akin to what I already lived in real life, I soon got really excited about the prospect of watching a play that has been moving the audience to tears and motivating them to support the painting exhibition of Sebastien, my autistic son. A Mother's Wish had been given the opportunity to sell Sebastien's original water colour paintings and silk scarves derived from the photographs of his paintings during three-week production.
However, juggling work, caring for Sebastien, and manning the painting exhibition at the show has been taking a toll on us. Severely sleep-deprived, both my boyfriend, Jerome, and I fell sick over the weekend. And just when I thought that things couldn’t get any harder, Sebastien attacked me just the day before the performance. After a sleepless night with my face stinging from the scratches and the bruise on my forehead, I got up thinking that the “stage was set for disaster” for an evening that I had looked forward to, albeit with a tinge of nervousness.
There was a part of me that did not want to speak about the attack that was uppermost in my mind. I felt as though both Sebastien and I had let down all the people who had been doing their part to raise awareness about autism and support Sebastien’s painting exhibition.
However, I got inspired by Pangdemonium’s raw and heartfelt performance that was power-packed with threatening and violent meltdowns of a severely autistic youth. I needed to build on what they had done to tell people about the truth of my life with my autistic son.
So I bared my soul onstage and said out loud all the things that had been coursing through my mind earlier in the day. I told them about a painting by Sebastien that I had named "Resurrection" because each time Sebastien attacked me, I would die and have to pick myself up again to continue taking care of him. I spoke about how hard it was not to see Sebastien as a monster and let this aspect of him take centerstage to negate his better and more beautiful side that was represented by his beautiful paintings. This is why I continue to show up for the painting exhibition and the show despite the hurt and pain. I wanted people to recognize the co-existence of the two irreconcilable sides of Sebastien and understand the toughness of loving such an individual who is causing hurt even as he is doing his best to cope with this life…
In my darkest hour, when I had felt doomed about my existence with Sebastien, the refrain that had often recurred in my mind was that it is important for someone, anyone, to bear witness to how hard I have fought to raise Sebastien and how much he has been loved. Because the outcome is often far, far from being good enough in the eyes of most people.
So big thanks to the passion, commitment, and courage of the Pangdemonium cast, for many in the public have now borne witness to this terrible beauty of a life that we parents lead with the autistic kids whom we love so much. And by the tears that were shed in the theater and the outpouring of support, I think that our hopeless, valiant, and heartbreaking love might have grazed the souls of the audience.