The Difficulty of Self-Control Huan, today we are going to talk about a boy named Philip who is non-speaking and uses RPM and a letter board to communicate. He is 11 years old and writes a blog with his Mom. What is the name of the boy we are talking about? PHILIP How old is Philip? 11 How old are you? 17 How much older are you than Philip? 6 YEARS What is a blog? WORDS ON THE INTERNET A month ago I asked Philip, “What is the essential feature of your autism?” Philip replied by spelling on his board, “I CANNOT MAKE MY BODY OBEY MY BRAIN.” This sentiment has been repeated over and over by autistic people, especially by those who are non-speaking but have found a way to communicate alternatively by spelling on a letterboard or typing. Yesterday Ariane Zurcher, mother and author of Emma’s Hope Book, wrote a terrific post entitled “When the Body Does not Obey the Mind” (click here to read the entire post). The post quotes several young people about their experiences living in a body that does not listen to its mind. Can you relate to Philip's statement? MY BODY DOES NOT OBEY MY BRAIN EITHER. I DON'T KNOW WHY MY BODY WON'T LISTEN TO MY BRAIN. YOU CAN NEVER KNOW HOW FRUSTRATING IT IS TO LACK CONTROL OF YOUR BODY. I read the post to Philip this afternoon. I wanted him to know there are many others like him and that he is not alone. Then I asked if he wanted to share his experiences. “Y,” he pointed. I am in a body that does not obey my brain. I am open minded but my actions are each day searching the peace of mind. Tons of each day I am so tired from making my body obey my brain. I am always estimating to overcome an impulse. Impulses come in many different forms. I may see food and out of the blue it makes me wholly tuned into it. I am really too slow in my thinking to stop myself from taking the food. I feel bad after. I think I really need to readdress understanding real need to control my body. I am most in control when I take some words and try to get me to follow it. I understand a lot of verses from the Bible. They help me touch mountains of depression and tossed wind of seeking out help. (“What do you mean by tossed wind?” I inquired). It means help is like tossed wind because it is hard to grasp. The adamant art of each day is addressing my self-control by praying to God. Each day I am eager to accept myself more. I’m each day seeking others to friend me to let me be myself and not let me accept loneliness. One day I want to dare myself to be friends with normal kids. Philip talks about his impulses. What is your experience with impulses? I HAVE IMPULSES ALL THE TIME. MY BODY TAKES OVER MY BRAIN AND I AM LEFT OUT IN THE COLD. WHEN THIS HAPPENS I AM TOTALLY SURPRISED. IT IS LIKE A STRANGER HAS TAKEN OVER MY BODY. Each day I am totally stressed about teaching myself to stop impulses. Impulse to tear teachers apart is the worst. I get that impulse when I am tired. Tiredness each day to eat neatly in the cafeteria. I am tired from noise. Tired from accepting hard teaching. I need rest and a break when I get in a meltdown. I am letting God help me more. I pray to Him when I am getting tired. He answers me with a teaching. It is an understanding of a token verse. I had the impulse to tear at Dad because I was tired from trying to type on the iPad. In a rage I do not know how to stop. One thing to keep in mind each day is to leave me alone when my body is lashing out so I can pattern my solace to keep calm. (“What do you mean by ‘pattern my solace’?” I asked). Ask on bended knee for God’s help. I am tired from each day telling myself to stop stims. It is too onerous to analyze right behavior. It is hard to coordinate all the things I need to do. I need to listen. Then I need to plan my action. I am tons of work to move appropriately. I need help to stay on task. Tired and stressed all the time. Someone makes leaps to have to reach me. To better help me one should keep topping me. (“Can you clarify?”) They should interest me doing new things. They should accept no excuses from me, except if I am sensory overloaded. Philip talks about being tired. What makes you tired? JUST GETTING THROUGH MY DAY IS EXHAUSTING. TRYING TO CONTROL MY ACTIONS EACH TIME MY BODY TAKES OVER WIPES ME OUT. THIS HAPPENS ALL DAY LONG. I NEED A VACATION FROM MY BODY. YOU LAUGH, BUT IT IS TRUE. **At the end of the session, I read the comments that people wrote in response to the blog featuring Huan. I gathered these from the blog, my Growing Kids Facebook page, and my personal FB page. I have been blown away by the support and the enthusiastic belief of so many. Here are the comments and here is Huan's response to them. BTW, he was BEAMING when I read them to him. So powerful Elizabeth! Thank you for the new lives you are giving your clients. I have experienced many times in my life where I felt different. I've never been challenged in even the smallest ways that these kids have. I am moved and excited to hear more!! Amazing work! Please note that her use of "non-speaking" is quite intentional. As she is rapidly discovering and contrary to conventional usage, they are anything BUT nonverbal. (Words matter!) I LOVE the two photos you shared in the blog! You and Huan look so chill in the sunny window working with the letter board... great illustrations to accompany the story! This is incredible! I absolutely love it. I Growing Kids Therapy Center, Soma, AEA and your wonderful kiddos/young adults! Huan wrote a beautiful essay... he has so much to give in this world! Thank you for sharing! Huan has so much to say - thank you for sharing this Elizabeth! I am so very excited to see your confidence as a practitioner of RPM grow as your kiddos (and young adults) find roots and wings ... and VOICE using this method. My thoughts are with Ben and Huan as their applications and essays are evaluated! Here is Huan's response to these comments: I AM SO TOUCHED BY THOSE COMMENTS. I AM PROUD TO HAVE BEEN HEARD AND AM DELIGHTED WITH THIS FEEDBACK. I NEVER WOULD HAVE BELIEVED SO MANY PEOPLE WOULD HAVE CARED ABOUT WHAT I HAVE TO SAY. I AM GRATEFUL. *I plan to post Huan (and Ben's) responses to the reader feedback in a blog entry later today! I LOVE that Huan had the opportunity to see how his words affected people! Beautiful work today! I love seeing that he is comfortable on the board that he is really playing with his language - "wiped out" and "you laugh but it is true" are just two examples. I think he describes impulses so well! Have a great week! Elizabeth |