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.
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.
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.
Amazing, Lisa. Philip is so insightful. Thank you for sharing this with us. I remember his captivating smile from Miami. A very special person to be willing to express deeply personal thoughts and reflections for the benefit and understanding of others. And with an exceptional mom, too<3. Thank you.
ReplyDeleteHello, I enjoy reading all of your post. I wanted to write a little comment to support you.
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