The Spirit is Willing But the Flesh is Weak

This morning Jeremy said he wanted to go to church. I checked a couple of time to make sure that that is what he really wanted to do as he had been up a good part of the night in a hyper happy state. This was following a period of three weeks where he was happy, but calm and relaxed.

We got to the church, but he didn’t want to get out of the car. I convinced him to get out and we head up to the service (Unitarian Universalist) which is held outdoors in a beautiful setting under pine trees. Jeremy really likes this place.  But today, Jeremy could not or would not sit still;  looking at a book did not help. Finally he started foraging in his backpack for a ‘toy’ – any kind of string, ribbon or piece of rope. And he sat there and stimmed. Then he got up and stated to prance away as if to leave. I convinced him to go back to sit down. Then, an elderly woman sat down next to him and pulled out a cookie and started to eat it. Of course I didn’t know this till I heard a commotion next to me and realized that Jeremy had grabbed  the cookie out of her hands (but really – why was she eating a cookie during church service? I wasn’t looking out for that). Then he left running towards the parking lot. I had no alternative but to follow him.

Many times Jeremy has problems controlling his body or organizing himself and he needs his “rules” or help from us. His spirit is willing but his flesh is weak is how I describe it. This time I think perhaps he just wanted to go for the ride in the car to church and hear Dave Matthews in the car.  It doesn’t matter that he has a high school diploma or that he can communicate by typing or that his mom is supposed to be knowledgeable when it comes to autism stuff – sometimes he is just not himself and he seems unable to communicate about it. We used to blame  behavior changes  on the full moon because it would happen once a month for a couple of days, but it appears to be a different cycle now. Maybe he is sick? I just had the flu, maybe he is coming down with it. Maybe he is nervous  because we have been interviewing new support staff, and even though he helps interview and loves the people we have found, it is still a change.   At any rate, these moments are frustrating. As a professional, my brain is taking notes and comparing data, trying to find the ABC’s of the behavior, looking at possible causes for the behavior. Meanwhile, the parent in me is tired and worried and hope he will go back to his usual pattern of sleeping through the night and wake up his usual sunny self tomorrow.

I’m hoping tonight is going to look like this :

Jeremy and Handsome sleeping.

How the Rapid Prompting Method Gave Me A Voice

My son, Jeremy Sicile-Kira, wrote the article below about the Rapid Prompting Method (RPM) which appeared in the January 2010 issue of The Autism File. If you watch the HBO movie on April 2, A Mother’s Courage: Talking Back to Autism, you will see  Soma Mukhopadhyay teaching a child using RPM.



How the Rapid Prompting Method Gave Me A Voice

Having Autism is hard enough, especially when it comes to communication for people who are non-verbal like myself. The Rapid Prompting Method (RPM) is not only a learning method but a door to open-ended communication for different people with autism. It is my good fortune to have been taught by Soma  Mukhopadhyay, who pioneered  RPM.

Soma, originally from India,  has a son with autism named Tito, who is the mighty inspiration  behind RPM.  Soma needed to create a method that would help him not only  to learn, but to communicate as well. Soma was frustrated with the schools in India, where they lived, because they wouldn’t accept Tito as a student. Just like they told my parents in France, where I was born, they told Soma that Tito was mentally retarded. I was “diagnosed” with mental retardation too, yet here we are both using RPM to discuss our similar past experience.

RPM is a method that  can be used with different people as it is adapted to the needs of each individual. Some are auditory learners, some are visual learners and the RPM teacher uses the learning channel that is best for that person.  RPM uses a “teach and ask” paradigm for eliciting responses through intensive verbal, visual and or tactile prompts.  RPM starts with the idea that all students are capable of learning. Despite behaviors, the academic focus of every RPM lesson is designed to activate the reasoning part of the brain so the students becomes distracted and engaged in the learning. The prompting competes with student’s self-stimulatory behavior. Continue reading »