Autism Awareness Month
My Son, Autism and Hope
Learning to communicate
A couple of days ago I received an e-mail from my autistic son’s speech therapist. “OH MY GOODNESS! Just found out that Jeremy PASSED the language arts CAHSEE!!!!!!!! Start pouring the wine!!! Congrats.”
Up until five years ago, we did not know how much or how little Jeremy understood about what was going on around him. Jeremy is severely impacted by autism and has very little speech. When he was little, I was told he was profoundly mentally retarded, and that I should institutionalize him. Yet, he has just passed the California High School Exit Exam (CAHSEE) that is one of the requirements for graduating from high school. Students can have up to six tries to pass both the math and language arts. Jeremy passed each section on his first attempt.
Everyday life is difficult for Jeremy, because all his sensory processing is out of whack, which means lights are too bright. His vision processing doesn’t ‘see’ right, and noises are too loud and can be excruciatingly painful. He has very poor fine and gross motor skills. Because of his motor challenges, it is really hard for him to speak. He needs help with most of his functional living skills, although he is improving in some areas.
But my son has a brain. He can communicate. These two factors make all the difference in his quality of life and plans for the future. When I got the excellent news that he had passed the final portion of the CAHSEE, I told him the family was going to celebrate, and asked him where he would like to go for dinner. “The nice restaurant with the beautiful view of the beach where you do your book signing fundraisers,” he spelled out. Five years ago, he would not have been able to tell us where he wanted to go. That he can do so now is not a miracle, it is the result of much effort on many people’s part, but especially Jeremy’s.
Jeremy spent most of his school years sitting in classrooms for the severely handicapped, when he wasn’t home schooled. I insisted that he be mainstreamed in general education classes for some time every day and for two classes a day once he got to junior high. I figured at least he would learn to sit quietly with his peers, which is a necessary skill to learn if you are going to participate in certain activities such as going to the movies.
About five years ago, I met Soma Mukhopadhyay, who developed The Rapid Prompting Method to teach academics and communication skills to her son, Tito. For more than a year Jeremy had lessons with Soma, and we practiced at home. First, Jeremy learned to point to words to make choices, then to spell by pointing to letters and then, eventually, by typing on a keyboard. Jeremy’s teacher at the time came over one day and saw what we were doing. She tried the same method at school, and pretty soon Jeremy was learning both at home and at school. We hope that that using a letter board or keyboard will help Jeremy initiate more speech, but because of his motor difficulties it is hard for him to string more than three words together.
For many, autism is a depressing topic. Yet, when I think about autism, I think about my son and I feel optimistic about his future because he has the ability to communicate and enjoys learning. There are advances in technology such as lighter, smaller computers and voice output programs that are making it easier for Jeremy to communicate and do his schoolwork. Jeremy plans on continuing to learn by attending college, but he is also thinking about what he can do to earn a living. Recently his teacher and I helped Jeremy develop a few simple self-employment projects including a sandwich delivery service for teachers, and Jeremy has more money-making ideas he wants to try out.
Jeremy has hope, which he did not have before he came “out of the darkness” as he describes his life before learning how to communicate. When I think about autism, I think about how happy my son is now that he has a voice. I think about all the good people out there who have worked with him over the years to give him that voice, and I know we will continue to find good people to help Jeremy achieve his goals and dreams. Life is good.
Chantal Sicile-Kira, is an autism advocate and the author of award-winning books on autism. Her latest book is Autism Life Skills: From Communication and Safety to Self-Esteem and More – 10 Essential Abilities Every Child Needs and Deserves to Learn. Her other books are: Adolescents on the Autism Spectrum and Autism Spectrum Disorders. Chantal hosts a radio show on Autism One Radio, and moderates webinars for Momsfightingautism.com. For more information, visit www.chantalsicile-kira.com.