Help Spencer Spread Hope
Organized by: Jill Creter Harte
“The birds of hope are everywhere, listen to them sing.”
I would like to ask, if I may, that you spend a few moments with me. There is a story I want to share with you. It’s one I don’t often discuss and it is a story that has, at times, been difficult to tell. But it is, in its essence, a story of hope.
My sixteen-year old daughter, Spencer has autism. Diagnosed at age five, it has been a long and difficult road. Kids with autism face so many challenges that we “neurotypicals” take for granted. Their senses are out of sync. Ordinary sights, sounds, smells, tastes and touches can literally be painful. Social interactions like making friends, simple conversation, and for some, the ability to even speak, are incredibly difficult and can lead to isolation, loneliness and bullying. Sometimes, it feels like you are drowning in a raging sea of despair. But every once in a while, the sea calms and there, floating softly in the distance, is a lifesaver.
For Spencer, that lifesaver came in the form of music and the arts. And now, Spencer has been given an opportunity to share that lifesaver with others in the autism community. This time, in China, her birthplace. She has been invited to perform at the Worldwide Collaboration in Arts Therapy Conference being held in Beijing at the end of August 2015.
Spencer was born in Jiande, China and at three days old was found swaddled in a cardboard box. She spent the first 11 months of her life in an orphanage, with little nurturing or stimulation, until, she came to live with my ex-husband and I in the U.S. As the months passed, it was becoming clear that Spencer had significant delays. She was not meeting the developmental milestones that my friend’s children were sailing through. The doctors kept telling me that she was delayed because she had spent those early months in an orphanage. It seemed logical to me, and truth be told, I wanted so desperately to believe it because the alternative, that something could be “wrong” with my beautiful baby girl, was terrifying.
Finally, when she was five, the diagnosis came: Autism Spectrum Disorder. I was devastated but quickly set about researching and studying everything I could find about autism. We spent the next three years participating in intensive therapies and treatment protocols.
And then, our lifesaver appeared. I heard about the Miracle Project, a non-profit music and theater program for children with autism and featured in the Emmy winning documentary, “Autism, The Musical”. Spencer loved music. It was her love of music that helped her acquire speech. She would learn new words by singing them. So, I signed her up. She wasn’t much interested, at first. She was over all this therapy and the therapists and the constant work they demanded of her. Little by little, she began to relax and Elaine Hall, the creator of the Miracle Project along with her amazing staff, were using the expressive arts to draw her out. She was given a solo in the end of year performance. I couldn’t believe it! She was beginning to step into the world and even better, participate in it. Every year she made greater strides. She loved performing, being on stage, acting and singing. She became more and more confident, she made friends, her language improved and she was happy.
Three years ago, while watching Phantom Of The Opera, Spencer began to sing along to the arias, and a love of opera was born. Since that time, Spencer has performed at the Pantages Theater, the Nokia Theater, the Los Angeles Coliseum, appeared on the NBC television show, Parenthood, and has been working tirelessly as a self-advocate for herself and others with autism. The power of the arts to transform, provide healing and a greater sense of wellbeing to children on the autism spectrum has been scientifically proven. Spencer is one of many for whom the arts has been transformative and life changing. Elaine Hall’s Miracle Project is an example of one of these programs. Elaine will be joining us and will be leading a Miracle Project workshop at the conference in which Spencer will also be participating.
In China, people with autism are for the most part, dismissed and ignored. This is not to say that the Chinese people are uncaring or unkind, but rather that they are somewhat uneducated about autism and its treatment. They do not understand that with therapy and intervention, outcomes are changed significantly and lives are transformed. I am haunted by the fact that if Spencer had never left China, that might have been her future. She was one of the lucky ones, who through the arts programs and therapies that she’s had here in America, has been able to meet her potential. Now, she has the opportunity to go back to the country of her birth and show people what’s possible for someone with autism and bring a message of hope along with her.
This conference brings together experts from around the world who use the expressive arts to help those with autism and other disabilities. Initially, we were very excited at the opportunity to go back to her birth country however, we were disappointed when we learned that they were unable to cover our expenses, as we knew the cost would be prohibitive. Raising a child with autism is extremely costly as the price of therapies and interventions mount and that will always be the priority in our house. As I began to regrettably decline the honor, the conference director who had extended the invitation, grabbed my arm and said, “You don’t know how much it would mean for the Chinese people to hear Spencer sing. Life, for people with autism in China, is most often hopeless and desperate. Spencer can show them what is possible. She can give them hope.” With those words, this trip took on a life of it’s own—it became a mission.
We will need to raise approximately $10,000 dollars to get to China. This will cover the cost of travel. Because of Spencer’s sensory issues she can not spend longer than six hours on a plane. Flight time from Los Angeles to China is 15 hours. Her body would be in major sensory overload. She would be in physical pain and would be “crawling out of her skin”. So, this means we have to make 2 or possibly 3 stops along the way.
Sounds cliche, but truly, every little bit helps. Any amount is a step closer to our goal.
If you can, please help us spread hope. The journey with autism is difficult enough. I can’t imagine traveling this road without hope as a constant companion.
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