By Mike Hipple
Stop me if you have read or heard this before from a co-worker or a family member: This child has too many challenging behaviors to use a communication device. They won’t understand the device at all. They will break it or kick it. End of discussion, right? Hell no! That student—or an adult communication facilitator—needs to have access to a system because they are communicating through behaviors like we did when we were little. If you know me, heard me speak at a conference, or have read anything that I have written before, you know at least three things about me: I love USSAAC ISAAC, I am a huge baseball fan, and I love to talk and learn about behaviors. You know one more thing too: I am the king of storytelling.
It is story time with Mike. I knew of a boy who needed to use a communication device, but he had behaviors. His individualized education program (IEP) said he has behavioral problems. I know for a fact that in third grade he had 3000 minutes in time out. I’ll let you do the math on how many hours that was. His family and the school team didn’t stop believing in him. They knew they needed to find a better communication device for him to communicate and tell them what he needed and was feeling that day. Does it sound like someone you are working with? Could that be your family member? I bet you are curious about what happened to this little boy.
Well, he is doing great today. He is in a job search to work with children who are like he was when he was their age. He can communicate with anyone about his wants, likes, and needs. He is writing this blog. Surprise—it is me! My early IEP said I was in a cognitive disorders (CD) and an emotional behavioral disorders (EBD) program for my behaviors. Now I am not saying my team and my parents got it wrong; they were doing what they believed was best for me. I think that when we put students in the wrong classroom or program, we are saying we believe in them, but to be safe we’re going to put them in a disability classroom or program because we aren’t sure what behaviors they might show. I know I had bad thoughts about myself. How would you like it if every time you acted out (i.e., you have something to communicate about but you cannot speak) an adult walked you down to the time out room and just left you there? Over time you would start thinking something must be wrong with you, because every time you have something to say they put you in time out. Or perhaps if you didn’t what was happening in class, you would just show some behaviors and then someone would take you down to the time out area. This needs to change quickly, because we are sending the wrong message to these kids and to everyone else in our schools. The message? We don’t believe in our children. We don’t believe in you.
A new movie called “Music” came out last month. It is about a girl, Music, who is nonverbal and has autism—so the director wants you to believe. Of course she has challenging behaviors and her sister and her neighbors stop her behaviors in a way that I won’t spoil for you here. The movie didn’t show Music at school so a lot of this is my guess from my knowledge of how schools handle students like her. She was most likely in an autism or an EBD program. Her days may go like this: When she gets to school, she works on simple math skills (e.g., counting money, putting shapes into the right boxes) that will be useful in her life. After that she might work on her language arts, perhaps reading the same children’s book for the thousandth time. Then it is lunch time. If she is lucky, Music will eat in a cafeteria at a table with her classmates every day. How boring would it be to eat at the same lunch table every day with adult supervision when you are a teenager? I ate in a classroom but the teacher and the aide allowed me to have anyone stop in so we could visit during lunch. Back to Music’s schedule. In the afternoon she has history, but the class is different from your typical high school history class. Music’s history class might learn about Washington but they might also learn about what TV shows the teacher and the aides watched last night. No joke, I was in a classroom taking notes on a student when the teacher was talking about her favorite characters on a soap opera when during “science class.” Next on Music’s schedule is getting ready to go home…for an hour. Now let’s take a look at my schedule from eleventh grade. I was in adapted PE, language arts, linguistics [reading class], American history, math, personnel finance, and a music and art study. I had seven classes every day from seventh through eleventh grade. My point is that our students who use AAC and have challenging behaviors should still take as many academic subjects as that can.
I have talked to families around the country about their children’s behaviors and what a typical school day for them. The answers are troubling to me. I like to say 90% of the children are in one room all day and they are learning basic facts that they need to know and that is great for a small percent of the students. But the percentage of students who should be in a classroom all day long is only 2.5%. Wow. Think about that number for a minute. At most, just 5 to 10 students should be in an intellectual disability (ID) or autism classroom. But I know of a program that had 20 students in it. I tried to advocate to get two of the students changed to a learning disabilities program. Both of those students were using communication devices and were so smart. We see over and over that bored students have behaviors. Some of the students are using behaviors to tell the adults in their lives things like: This is so boring. I wish you could see and understand me better. I don’t want to read the same children’s book again. I am 15 years old, so please stop teaching me the same things I was learning in kindergarten and first grade.
So how can we, as the AAC community, start changing the beliefs that some of us have? Well, no surprise, I have some ideas for ways we might adjust those beliefs. I think it needs to start when the child enters the school system at 3 or 5 years old. The first meeting with the parents should be positive. My mother’s favorite story to tell is when she and my father were at their first school meeting. All they heard was Mike can’t do this and he wouldn’t be able to do that. My mother suggests imagining you are a parent to a child with a communication disability and all you hear is that they can’t do this and won’t do that. How, my mother asks, will you feel after hearing that long list of negatives the first time you talk to the school? She was scared, nervous, and embarrassed. We need to set up the positive thoughts and feelings right away, because that family will be in the school system for the next 15 to 18 years. They will be working with you on many things with communication and behaviors topping that list. Parents, you need to stay positive too. Your children can hear you when you talk to your parents or siblings on the phone to say that Doug had a bad day today and I hate his teacher, Mrs. Larson. Doug will remember your sentence and he might show some more bad behaviors to make you feel happy and proud because he thinks that is what you want him to do. So everyone should talk positively.
We need to challenge the students or children who have behaviors. Remember Music’s schedule versus my schedule paragraph? Unfortunately, many students who use AAC have an easier schedule than Music. Their schedules allow them to have behaviors because they have a lot of free time. In a school in my community, the teacher started a moving company for three students. Whenever one of the students started showing behaviors, the teacher would say something like, “I just got a call from Mr. Hipple. He has a big package for us to move, but you need to do three problems before we can go help him.” This worked quite well for the kid with whom I was working—he did his work and then his moving job. It kept his mind busy too. He spent less time in the time out area because he had a full schedule and a job to do. The point here is that we need to keep all students busy during the school day and when they are at home during the weekends, they should have little jobs to do. Like helping mom or dad do the shopping list or look at a TV guide. Yes, they still make TV guides to help people find out when their favorite shows are on. Meaningful activities keeps students engaged and leaves less free time for challenging behavior.
Finally, it is important that we challenge these students as well as ourselves. Take a look at my friends Chris K., Jon F., Jen L., and Sarah M. They all went through school before 1990 and somehow got a better education than the students who are in school this year. Do you know why this is? Yep, back then we didn’t have all of the different programs that we have today. I count myself lucky for the time that I was in the education system, because I was still in it when the schools thought that I could do the same work as my typical peers did. We need to challenge today’s students with communication disabilities like my friends and I were challenged back in the day. We weren’t in one classroom learning about something we already knew, we weren’t in a classroom all day long, and we didn’t just go to school. We were learning about interesting things, we changed classrooms hourly, and we were in afterschool activities and clubs.
My parents and team could have decided to keep me in one room all day long starting in fourth grade—because of my behaviors. They had the right to do it and it might have made their lives a lot easier for the next several years. But my team didn’t do that. They didn’t kick me to the side of the road and wish me and my parents good luck. My special education teachers Sarah and Bobby, my aide Ellen, and my parents worked their bottoms off to help me understand that I had a voice so using negative behaviors wasn’t going to be okay anymore. After sixth grade I needed to change schools, but my teachers and aide followed me throughout my education to make sure that I was using my device and was in the regular education system. They still email me to this day to see how I am doing. So when you have someone who uses AAC and has behaviors, please think through the possible placements and remember my story. We don’t know what the future holds for anyone. You might have the next AAC star.
By Mike Hipple. My email address is mikehipple4@gmail.com. I am on Facebook under Mike Hipple. I do have a Twitter handle and have a LinkedIn account.
If you are reading this anywhere else than USSAAC SpeakUp!, please visit the website at www.ussaac.org and think about joining the only society for AAC in the USA. United States Society of Augmentative Alternative Communication [USSAAC] is the only society that work for and with family members, AAC communicators, and professionals.
Mike Hipple is a young man with a PHYSICAL disability. He has been using assistive technology and AAC since 1998 to communicate with his family and to move around in the community. He is an active member of the AAC community and his local community. He started Wisconsin AAC Network in 2015 to give everybody a voice in WI AAC AT communities. When he is working on his writings you bet he will have on the TV or when he is relaxing.