(In March Dillan was asked to speak at a gala for an agency that supported him for many years and has a special place in all of our hearts – following is a CDI blog post found at http://www.cdikids.org/dillans-message/ – Dillan’s typed words are in bold)
Dillan Barmache, age 15, recently gave a speech at CDI’s 20th Anniversary
Gala on March 21, 2015. Dillan has autism and uses a letter board and keyboard to type his communication. His words were spoken via his iPad.
Mom: In preparing for the Gala, Dillan had some conversations during which time he reflected on his journey with CDI, and how far he has come over the years. He spoke to Tessa, who was his CDI Floortime therapist when he was 2 years old, and who continues to be an important part of our lives to this
day. Tessa knows that for Dillan, the relationship comes first. She asked him to speak a bit about relationships and being treated with respect:
“Therapists have allegiance to certain approaches that may limit them in their ability to heal. A relationship-based approach that deals with emotions in a patient and connected way is a far cry from what many autistic people experience. A really intimate and messy relationship is by far the most liberating and healing of all approaches.”
What do you remember about those relationships – the good and the struggles?
“A lot of therapists tried to help my family and me. It was not easy though. I was so overrun by my sensory and emotional feelings that all the work was hard to integrate into my mind and experiences. My family also tried almost every moment. I am a way better person all around because they loved me even if I could not integrate the risk of connecting with others.”
Mom: Our family was better able to be there for Dillan because we were so well supported by our team at CDI. Dillan shared with Debbie, his school communication partner, a bit about how the therapists from CDI worked with him:
“It was really nice. They sensed that I needed a lot of movement.
Getting calm was impossible. Can’t keep a desperate to move child still enough to do a gaining a skill activity.
Hard to get my attention.
Hard to hold me.
Hard to keep me engaged.
And getting me to stay was so hard.
And really sad each time they left.
Reality that I laid in massive autistic pit.”
Mom: You’ll notice that Dillan’s response is a bit choppier here. The fluidity of his thoughts and communication may vary depending on his internal and external environments. Nevertheless, his words are powerful.
When asked more about his CDI memories, Dillan shared:
“A lot of sensory going to attractions that pummeled my ability to connect to others. When I was eating and tasting much of my world some people saw a child who was not able to connect, but the people at CDI entered my experience with respect and did amazing work with the child I was. Remember I am single-minded and so much of my early experience was tasting my world, and sometimes I could be really difficult to engage with. The therapist had a lot to do with whether or not I could build a neural connection with them. A few therapists deny much of what has been said before by other autistic people, not cause they are being stubborn, they have no relationship theory to help them find a real way to connect with a sensory child. The therapist with a total developmental approach and a relationship mind has all the tools they need to get a connection with the child. People really need to know how much I wanted to connect, but it was impossible.”
Lastly, Tessa asked Dillan what he would like people to hear.
“Am really not sure people can get it.”
Tessa encouraged Dillan to keep saying it and planting the important seeds!
“A really huge message is sometimes impossible to allow words to even describe it fully. Hard to put words to a life that has transformed. Let me say that gaining a really healing relationship is rare and hard to find.”
“A level of understanding that I am whole in mind and that having autism is hard enough. Attitudes are based on theory and what people see. I am quite autistic, appearing as if all I can feel is bad behavior and limited ability to feel for others. A hard thing keeps people convinced that we don’t want love. Autism feels like a person is on the outside who has been made out of props and is controlled and influenced by every sensory need. Inside of my mind I am in control with the rest of the world, but most of the world is oblivious to make the most of my efforts. Yes, really hard to believe us that we can have an effort to connect. I needed a group of people who had an ability to see my efforts to connect and who could do the same. I am sad I had so many people in my life trying to make me learn, when all I ended up with was harm. Feel I needed help with my sensory system and emotional regulation. All the people at CDI cared and I felt understood. Anytime I am allowed a total use of sensory integration with communication, I am peaceful.”