Tim Papalu (above) has owned his own flower business, “Flowers by PapaLu” for about 7 years now. He was selling flowers along with his job coach, Hope Fowlkes at The 2014 APSE (Association People Supporting Employment First) Convention at the Hyatt Regency in downtown Long Beach, CA that took place July 1-3.
As Eleanor Roosevelt said, “Great minds discuss ideas; average minds discuss events; small minds discuss people.”
It was very stimulating to be among so many great minds who are out to change the world. I didn’t have my camera so these are all iPhone pics… not up to my normal specs, but it’s all I got.
It was so difficult to chose between which breakout sessions and TED Style – APSE talks to attend. The talks will be available in a month or so on APSE’s YouTube channel (goal of by August 1, but we aren’t holding anyone to that). The biggest highlight for me was Bev Harp and her “What is your Squawkers McCaw” talk. The name sounded strange and not something I would have probably attended if weren’t for the subtitle, “Creative Accommodation in the Work Place”. Wow, I can only recommend that my three or four blog readers (thanks y’all) log on and watch it when it is up on youtube (I’ll let you know when).
Bev told us stories about herself and others living with invisible disabilities. She understands autism first hand and has a stuffed parrot named “Squawkers McCaw” that goes most everywhere with her. When someone asked Bev, “What purpose does that bird serve” she thought about it and gifted us with her incredible story. She says for one it serves as a barrier that helps weed out people whom she may or may not want to communicate with. To paraphrase her, ‘you were going to find me out one way or another so Squawkers lets you know right off that something is a little different here’. She holds Squawkers and finds comfort in him in places that are otherwise over-stimulating… which could be just about anywhere unfamiliar, a noisy room or place with patterns in the carpet for example. I will share one of her stories, but you will have to watch her presentation when it comes out to understand how powerful it was. I haven’t stopped thinking about it since.
I share this story with you because I have worked with many little ones that have these, classified as: “behaviors”. Bev told the story of a little boy, I think his name was Joe, on his first day of school, a boy that has autism. On his first day of school the teacher turned around and when she turned back around, little Joe, was sitting in the middle of floor with his pants off. The teacher took him to the bathroom and assisted him in putting them back on. It happened again and again for those first few days. Some expert said it was an attention getting ploy from the little boy. Finally, a teacher asked some important questions to his mother, probably the most important: “What does he usually wear when at home”? “Sweatpants”, said the mom, she explained that they wanted him to fit so that is why they dressed him in blue jeans’. The teacher said to let him wear what he usually wears. Dressed in sweats, the boy never exhibited that “behavior” again in class. You see, the boy had sensory issues and felt real pain when he wore the jeans. To him (again paraphrasing) it was as if he were wearing sand paper wrapped tightly around his legs. A tag on the back of a shirt can sometimes feel like glass piercing into the skin of someone with sensory issues. The reason he was taking his pants off was because he wanted to listen to his teacher, but he couldn’t focus on what she was saying because of how uncomfortable he was.
When I worked as an ABA therapist for children receiving “early intervention ABA/ DTT therapy”, I worked with many children that had these “attention seeking behaviors”, “abnormal behaviors”, “stems” or whatever else they were labeled as back in the day when the only method was the Lovaas method. I had respect for it, but also, I have always questioned authority. I quickly came to understand that teaching “quiet hands” would be one of my biggest challenges. Something always felt a little off about that to me. For the most part I did it at our “table time” because that is what I was taught; I “had to help re-wire their brains, while their brains were still forming before it was too late and these behaviors carried over into other areas and they became too big to handle and turned into dangers to society”. I found that rather than trying to give these little guys “treatment”, I learned to teach them so much more effectively by communicating with them in their chosen preference. When Sarah got excited and started flapping her hands, I tried to figure out what it was she was trying to show me or tell me and rather than saying “quiet hands” and “prompting her” to stop, I would ask her to “show me”. With Adam who was a “spinner”, I found he listened the best when he had his toy car in his hands. He might not have been looking at me the entire time, but while he was busy spinning his toy car I could say “A”, then ask him to find my eyes (so he would look at the letter and repeat) and let him go back to spinning while we went through the alphabet like this. Later when I would place A, B, and C in front of him, I could say “point to B” and he would stop spinning for a moment and point to the correct letter. This is how I taught him the alphabet. When his car was taken away (as it was not supposed to come out during table time) getting him to focus on what I was saying was nearly impossible and he would get mad and then there I was “breaking the rules” again and giving him his car so that I could teach him.
There is an art to communication. I could tell you stories all day about children with autism and their “behaviors”, but watch Bev’s presentation (I’ll post as soon as it is available) and in about 12 minutes your perception about those with autism just might be altered for the better. She got a well deserved standing ovation.
The APSE Convention had many great speakers and presenters. I’d love to highlight them all, but this post would be incredibly too long. Maureen Carasiti’s presentation on Grass Roots Advocacy, Tracy Katz’s APSE talk, “Take Your Legislator to Work”, and The Scary Broads who are growing in number and becoming more scary by the minute, inspired me to really want to take things to the next level and go beyond an organizational level and into the White House and further. I love people who are out to change the world! The final thing I wish to point out was the very last thing we experienced, which was a documentary film called Cinemablity followed by a Q&A session with filmmaker Jenni Gold. To quote from the website: This dynamic documentary takes a detailed look at the evolution of “disability” in entertainment by going behind the scenes to interview Filmmakers, Studio Executives, Film Historians, and Celebrities, and by utilizing vivid clips from Hollywood’s most beloved motion pictures and television programs to focus attention on the powerful impact that entertainment and the media can have on society.
The film features Ben Affleck, William H. Macy, Jamie Fox, Robert David Hall and many others. Little did I know that media would be such a big factor in my first APSE Convention, but I just so happened to do an APSE talk on the subject as well. I’ll post it too once it comes out. Thanks to all who attended, presented, and won awards for their fearless leadership at the 2014 National APSE Convention in Long Beach! It was such a pleasure to be in the presence of such great minds. We learned so much and a great time too.