By Irma Velasquez
Our journey began when our son Aaron was diagnosed with autism in 1997, at the age of three. On a foggy winter morning my husband Sherman and I sat in the psychologist’s office eagerly awaiting instructions, medication and a map to follow. Instead, we were told that “there is nothing you can do; there is no cure.”
In the next three years, the words that Aaron learned, both in Spanish and English, started to disappear. Each day another word was lost, until one day, no words came. Twirling to the beat of Chopin’s sonatas became his mode of “play.” Flapping his hand in front of his face was his way of engaging with his world. We did not know how to help him, but knew instinctively that we had to somehow enter Aaron’s world.
Grandparents, aunts, uncles, therapists, teachers and friends were ready to join our journey through the unknown. Our home became a school, a therapy center and a think tank. To connect with Aaron was the primary goal. In Aaron’s room each of us; sang and read books to him, jumped when he jumped, laughed when he laughed, twirled when he twirled.
Our efforts started to bear fruit within a few months. Aaron began to pay attention to others, to follow directions, to point and to request his favorite things — to look at our face, in short, to connect with his world around him. Our optimism began to be infectious as we learned ways to reach him. His social world expanded and his team began to grow. He started pre-school, joined play groups and in his own way, interacted tentatively with children his own age.
Then it was time for elementary school. That’s when we hit a dead-end. Autism was not a recognizable syndrome in the late 1990’s. Traditional schools were just not ready for children like Aaron. That’s when we decided to start a school that could meet his needs. The school became Wings Learning Center, a child-centered school that provided Aaron and children like him a community of peers and enthusiastic teachers.
Puberty brought on more challenges. The most difficult to manage was the onset of epilepsy. Neurologists became part of his team. Ongoing supervision became a new necessity.
He entered adulthood with communication skills for independent living and strategies to cope with the world around him. But constant support was necessary. When Aaron left Wings Learning Center we created for him a home-based day program where he engaged with others while staying active in his community.
Sherman and I remained the main caregiver and the center of Aaron’s life. We know that this cannot continue indefinitely. It became clear that, in the long term, Aaron has to live in a supportive living community that provides social engagement and, at the same time, provides the supervision and support that he needs. We discovered quickly that finding such a place is not easy.
Then one day we met the Grotte family, they too were in their own journey and looking for a long-term supportive living arrangement for their son Peter. We joined hands and started to build a community for Peter and Aaron, and others like them.