... And What Do We Do?
I have a short-term goal and a long term goal for this website. The short-term goal is to share what were doing with others. I think this model has value to the community. I'd like to let other parents/caregivers see how it this can be done. My longer term goal is to turn this into a non profit that helps support other young adults looking to build their skill set by working in the community.
Spring of 1999, at two, Alex was diagnosed with Autism. Any parent of a child with autism knows what happened next. Panic, doctors, therapists, exhaustion, grief... and slowly, focus and understanding.
In 2005 I took over as my son's ABA Programmer.
"Applied Behavior Analysis focuses on the principles that explain how learning takes place. Positive reinforcement is one such principle. When a behavior is followed by some sort of reward, the behavior is more likely to be repeated. Through decades of research, the field of behavior analysis has developed many techniques for increasing useful behaviors and reducing those that may cause harm or interfere with learning." - Autism Speaks
I taught myself how to write programs, hired some motivated college students and started what would become my new full time job.
If you're interested in my story you can read more about it here on the blog.
Things progressed until puberty hit. When Alex turned 12 I noticed a hard shift. Alex wanted independence, he wanted less hovering but didn't have the skill set to be independent. "How do I navigate this?" I thought.
Jennifer (Alex's lead therapist) wanted to try finding Alex a job. "That's really outside the box thinking, but OK, we can try." I said. I remember thinking, this kid will spontaneously run across the room singing a song, so how is he going to fit into a workplace?
Cut to 3 years later, Alex is already on successful job number 7, and this website gets created.
My short term goal is to show you how we achieved this great result. If it resonates with you, steal my ideas! My long term goal to create an organization that matches local young people living with disabilities into volunteer jobs. The community has been overwhelmingly open to the idea, and I've watched Alex blossom.
An artist that became an independence specialist.
Jennifer started working with Alex in 2003.
Jennifer is passionate about children facing challenges. She is also a working artist and on the board of directors of Urban Art Network.
She was trained as an Art Therapist and has a background working with children in institutional settings.
I hired Jennifer as a therapist in 1999. Initially Jennifer's first and only job duty was "pairing". Pairing is a fancy word for getting to know each other and hopefully, liking each other. I invested many weeks in Jennifer while she learned what Alex loved, and how to deliver it to him. It often looked like Jennifer and Alex just watching TV together or walking to the video store to rent the same movie every day (which I had to then return every night after he went to bed). It was only after we established trust between them did we set expectations. The goal was to create a relationship. I wanted Alex to feel safe and heard.
We have built all of our work on the foundation that Alex has a say in all decisions. Eleven years later those principals are still at the center of Alex's program. Today Jennifer and Alex have an unshakeable relationship that is deeply meaningful to both of them, and Jennifer has become Alex's biggest advocate.
Do you want an old vending machine? "
Alex's 6th grade special ed teacher asked me. "Um, I guess, OK." I responded.
We cleaned, fixed and stocked the machine. We wrote some basic programs for restocking and counting the money, and jumped in.
6 months later, I was blown away. Counting change? Fluent. Stocking independently? Yep. Filling out the inventory sheets? No problem. Going to the machine independently and doing the entire job himself? Yep.
"What's going on here?" I said to myself.
For the past year we had been struggling. After years of intensive therapies and 1:1 work Alex was getting resistant. Is this puberty, am I programming incorrectly, is his classroom wrong? I was rethinking everything. Then Jennifer suggested we look for more jobs (the one we had was working well), OK I said, lets give it a try.
3 years later, I can't quite believe it. Alex is in his community, doing meaningful work. He is working on his language and social skills in real environments. The people around him are learning about what Autism does and doesn't look like. Most of all, Alex seems proud of himself.