What do you remember about Otto’s early childhood?
“He developed normally and did everything my older boys did. His growth and development were right on par. He babbled and engaged like any other infant. As a toddler he had words and word approximations for his wants and needs. He climbed a rock wall or a ladder and slid down a slide and could cross the monkey bars and did all the normal stuff. But then he started obsessing about different things. It was all about the repetition and the routine. He needed to climb up the slide and go down the ladder. It was Otto’s way or no way. If anyone disrupted the routine or got in his way or told him he could not climb up the slide… nuclear meltdown. I just thought, “Oh, it’s just his entrepreneurial spirit!” Then, he did not play with toys the way other children did. He needed to climb to the highest point in the room or the park and drop toys or parts of a toy off the summit and I thought, “Oh, maybe he’s testing gravity.” It never occurred to me his unusual idea of play was a problem.
When Otto would do unusual things I just didn’t think about it at first because everyone’s unique to their own degree. But he never slept. And then he needed to watch the same three-minute loop of a video or movie. He couldn’t watch the movie the whole way through anymore. And then he stopped being able to go places. Even a simple trip to the grocery store was too overwhelming. And then he just stopped listening to me. He would just run – no fear – just run away from me, laughing and running. I’d shout, “Otto, stop!” and he never even turned his head. All those little things just started escalating into where I just couldn’t take him anywhere or do anything. All that was annoying but it was the loss of language that was devastating. By the time he turned two he just stopped trying to verbally communicate. He was trapped.”
What led you to work with the team at Cortica?
“A friend of mine told me that she met a doctor who had come from New York and she had a reading program for nonverbal children. This was a novel concept because in special education it is a common misconception that a nonverbal child is incapable of learning to read. Then I started hearing more from other people, too. It all sort of came together and happened all at once. So at Cortica, we started integrating therapies and Otto felt a sense of ownership in his plan of care, in his goals. He was regulated and empowered to dictate what he needed and wanted and the team listened to him. The clinic is amazing! I wish it would have been around 10 years ago when I was driving all over town. That was really hard. The care was so fractured. There was nobody that would oversee anything. There was nobody to coordinate any of the care, and we were in the car all the time.”
What’s been the biggest change, or the biggest surprise?
“He types now, and he’s amazing and insightful. When he senses he is losing his audience he will type, “My mind is good, my hands are slow.” That is his polite way of saying, “Stay with me, I’ve got some important information to share.” There are no PECS card for that! The fact that he purely does stuff for a laugh is the best. He told me the other day he wants to be a stand-up comedian because he makes the kids at school laugh all the time. He can bust up the room and then everyone’s laughing and no one is doing work anymore. He’s the class clown. Surprising, right? Who would have thought? Who would have thought that was even possible?”