Saturday, November 29, 2014

Living and Learning

Each year since he entered the public school sytem at age three I've been asked the same question: "What are your educational goals for Daniel?" One of my answers is unchanging. Communication.

In 2004 the speech language therapist at Daniel's elementary school sent me a flyer about a workshop for kids with multiple disabilities. She went to the first session, I attended the second. The program, Every Move Counts, was thrilling to me. Finally, a substantial plan to help Daniel with communication.When I got back to town and touched base with the SLP I was over the moon with excitement. She, seeing how much work would need to go into the implementation of the program, was not. She basically said that the school would never be able to accomplish what EMC promised because it would be too much work. Too complicated. I was deflated, but not deterred.

I finished the workshops without the speech therapist's support, and pushed to have Daniel assessed by the EMC experts at the elementary school he was attending. When the creator of the program watched the videotape of the evaluation she said, "Daniel has the perfect assistive devices. His hands."

He points, he reaches, he grabs, he pushes away. He can snatch a glass of water from across a table. He doesn't use sign language because his fine motor skills and vision are poor, and he has motor planning challenges. Every Move Counts uses objects instead of pictures to help non-verbal kids make choices. I bought a miniature toy toilet. A tiny bed made for a dollhouse. It's shifting from one dimension to three. You get the idea.

For a lot of reasons, EMC never got off the ground for Daniel. His schools didn't use the method, and without their support, I was wailing in the wind. He continued with basic pictures (hard for him because of his vision impairment) and choice buttons for yes and no.

In 2010 I watched the documentary 'A Mother's Courage: Talking Back to Autism'. The film covers a lot of information about autism, including the Rapid Prompting Method. The genius of the program struck me hard right away. I bought the first manual and studied it. I didn't think I could afford to travel to Austin, Texas for a chance to work with the developer of the method, but I did believe I could do it on my own. I got another instructional book and watched a lot of videos to learn by observing.

I used some of the ideas in the textbooks. I added my own. We started doing spelling apps on the iPad. He is, pun intended, spellbound when we do this. I bought huge red and green YES NO buttons for him to use at home, and at school he began to do very well with his basic communication. Still, I needed to do more to get things off the ground in a meaningful way for him.

Last year I decided to schedule a camp in Texas for Daniel to work with Soma, the creator of Rapid Prompting. It fell through when there was a glitch with their online system (these sessions fill up fast), and it turned out to be a good thing I didn't get to reserve a spot because I got a cancer diagnosis and the surgeries and recovery time would have necessitated my cancelling. This year we're on. I've already booked a week in April for our camp at RPM headquarters.

Making a non-refundable down payment was a good thing for me. It helped me work harder at helping Daniel with the basics of the method so that he'll be ready to get going when we see Soma. We work at least a half an hour a day with making choices from two words on paper. I read the books again and ordered a third. The curriculum is brilliant. It's simple, but requires time and dedication. The only equipment I need is paper and pencil. I'm teaching him to spell, make choices and encouraging a sense of accomplishment to keep trying.

Soma's method recognizes that kids with neurological issues learn differently. You have to work around the repetitive actions known as stims, not try to eliminate them. Stims calm, or they distract a person from other things going on and become obsessive. They can assist with or block learning. She outlines how to address each kind of stim. Daniel puts his hands in his mouth. It calms him. I have never felt the need to force him to stop, although others have. This is where her professional opinion differs from most schools of thought. She suggests engaging a student's reasoning ability in order to distract from the stim. I find when we're going over a lesson the hand mouthing slowly stops without me saying a word or physically removing them. The interest he has in the subject, even though we're in a very basic stage right now, engages him completely.

I set up an account to help with the expenses of camp, and I'm deeply grateful to the family and friends who have helped so far. I believe that this is the education/communication piece I've been looking for all of his life in order to give him a voice. The fundraising link is here:

Once Daniel gets past the initial desensitization stage of learning what to do and how to do it (he's coming along well) the program focuses on real academics. He'll get the chance to learn about all subjects instead of focusing on how to feed himself, walk and make simple choices. We'll still do those things, because motor skills are important. They just won't be the centerpiece of his life anymore. Rapid Prompting's philosophy is to presume competence. Instead of seeing a person's deficits and working to fix them, let them learn. Teach them literature, science and math. Help them show you what they're capable of, even if their disabilities have always relegated them to the low functioning classrooms.

I want him to break out of that mold. If Dan is able to learn to point consistently and precisely (and he's almost there) we focus hard on spelling. While he's learning that he'll also learn about the lifecycle of a butterfly, or the names of the constellations. He's a sponge. Everything I've read and taught him since learning of RPM puts light in his eyes. It's not about grooming him for a career. It's about giving him the chance to learn and communicate. It's pretty basic, really, but it's more than many kids with profound differences are given. It opens up a world. Right now it's consuming my mind, and I will do whatever it takes to expand his.