Chapter 28: To Let Be or To Not Let Be: THAT is the Question
This chapter was taken from: Newman B. and Reinecke, D. R. (2012). Move with a Purpose: Solving common behavior issues before they become unmanageable. New York: Dove and Orca.
Chapter 28: To Let Be or To Not Let Be: THAT is the Question Jennica Nill
Recently I was reminded that the range of knowledge and misconceptions for even families of children with Autism is as broad as the spectrum itself. My husband and I took our three children to a play in New York City . It was a special event for families of children with disabilities. One of our children has Autism. He was excellent the entire show, to which another parent commented, “You are so lucky that your child has the capabilities to act appropriately in public, many children with autism can’t act the way society expects them to act.” The last part of the statement wasn’t what bothered me most, it was the “lucky” part. Luck has had nothing to do with it! Our second oldest son was diagnosed with Autism in early 2001. Once we began his intervention program, I began reading everything I could get my hands on to learn more about Autism and expected prognosis. What fueled me most was finding stories in books and on the internet written by parents that included what their child’s functioning level was at diagnosis and then fast forwarded a few months or even years of intervention, to how they were functioning now. Wide eyed and heart racing, I would compare what was described with how my son was responding. Story after story, it became very clear there was a correlation between the rate at which your child gains skills and the likelihood of overcoming the behavioral excesses and deficits that define Autistic Spectrum Disorder. The first two years after diagnosis, I was in a bit of a hokey pokey. I had one foot in and one foot out of this new Autism world that I previously knew little about. I wasn’t totally in denial; I will admit, however, that I told myself “we’ll be out of this by the time he’s three.” In hindsight, I did know that it might not happen and was completely aware that his responding was slow and steady. His deficits were significant, his excesses pervasive. When left to his own devices, he spent his time “practicing his Autism” in the form of odd repetitive movements, wandering aimlessly, fast forwarding and rewinding VHS tapes, making frequent noises and flapping his hands. He would get upset if I didn’t drive the same way to school every day, or if I drove past McDonalds without stopping. He had limited verbal ability, which would contribute to his behavioral outbursts. As with many children with Autism, other diagnoses followed, what professionals call “co-morbid” conditions. These included anxiety disorder, apraxia of speech, and cognitive disability. Everywhere we went was challenging. When the kids were around 3 and 4 years old, we were at a local zoo. Dustin’s older brother, Jake, was excited to see the puppet show. We took a seat and, within a few minutes, it became clear that we couldn’t stay. Dustin’s vocalizations, rocking, and protesting to get up were too disruptive to everyone around us. We had to leave, at which point Jake started sobbing, “Mom, Dustin ruins everything!” Although I would always try to go places with my boys, it was easier to just stay home. Even in the most embracing of environments, like local events only for families of children with Autism, I would find myself bringing Dustin outside and hanging out in the minivan while he tantrumed to leave. While I know that Autism-friendly events are specifically meant for families like mine, and so we do not have to worry if he acts out at the movies or other public venues, I felt it was not fair to the other children with Autism and their siblings that my sons tantruming in the form of screaming, yelling and falling to the floor would get them upset and trigger theirbehaviors. At almost age 4, Dustin was still drinking from a bottle and was not toilet trained. Although he was learning language and gaining skills, the stress caused by his behavioral deficits was taking a toll on the family. This could not be the way, could it? Do I just let him be? Is he so affected by his disability that this is just how it is and I need to accept it? He was getting special services, and even they told me that I had to accept he would plateau. I was feeling helpless and hopeless. It was then that I began to connect on-line with families and started to go to conferences presented by experts in the field of ABA . I did not know there were actually behavior specialists known as Board Certified Behavior Analysts that you could hire for evaluations and to make recommendations. It was at this time that I received the most important advice I ever received. I was told that I needed to take my son anywhere and everywhere as much as possible. I should not leave him at home with others while I ran out to the store because it is easier; it would only get harder as he got older if I don’t address it now. He needed to learn to adapt and needed constant exposure for that opportunity, and I needed to learn how to teach it. The longer I waited, the more likely that I would no longer be able to bring him anywhere. The reality of our situation hit me hard. If my son never learned how to act appropriately, never learned that there are other ways to express himself and control his behaviors, or was not consistently held to behavioral expectations, I was not helping him; his and our families’ quality of life would continue to deteriorate. To the public, he would be perceived as more impaired than he truly is. He would not be treated with the dignity and respect he deserves for his different abilities. He would not get the opportunity to live a full and meaningful, happy life. There was also the realization that I would not live forever to protect him. Through our consultants and conferences, I learned how and when to address his behaviors. I learned that all of these behaviors Dustin was engaging in were not just because he has Autism, they were serving a purpose for him. They were actually a form of communication that could be changed and replaced with more appropriate and socially acceptable behaviors. I learned how to shape his behaviors, when to ignore, and when to give attention. I learned that a reinforcer is not something I thought he would like, but something that I know increases the probability of a behavior and how to use them proactively. I followed the advice and took him anywhere and everywhere, even places that I didn’t need to go. I gained confidence in my parenting ability and quickly saw improvements. Knowing what to do and how to do it is key, because if you accidently handle behaviors and reinforcement in the wrong way, or if you and those directly involved in your child’s life are inconsistent, you can actually make the situation much worse and your child may engage in behavior more difficult then what you started with. While teaching new behaviors is hard, nothing is more difficult than getting rid of maladaptive behaviors that have been practiced for years, behaviors that are sometimes allowed and sometimes not allowed without any rhyme or reason. Those are the most difficult to change. I learned that, regardless of his cognitive level, Dustin’s adaptive functioning skills would be crucial in increasing his independence and allowing him to make choices for his own life. Choice is so powerful. While it is ok to let my son express himself in the way that is most natural to him, if I never teach him the alternative, does he really have a choice? How many things in life will he never get to experience? One of the best “Bobbyisms” I have ever heard Dr. Newman say is, “it’s better to be cool than brilliant”. It’s simple and so true. Who cares if my son can read, write, talk, add, subtract if he still wears a diaper when there is not a medical reason why, or can’t go to fairs, family functions, work or even his own chosen recreation because he is so disruptive? Here we are 10 years later. Dustin is now 12 and still keeping his slow and steady pace. He has grown to be a sweet, affectionate boy. He was toilet trained by age 4 and a half. He can swim, he can ride a bike. He is amazing on the computer and can navigate the internet unbelievably well. He follows directions pretty well and can ask verbally, as well as via typing, for things that he needs and wants. He helps me shop at the store and puts groceries away. He dresses himself and is beginning to help with household chores. He interacts with his brother and sister and almost explodes with excitement on family trips, no matter how big or small the outing. None of this has been through luck. Every single skill has been carefully and consistently taught, one skill building on the other. But let’s not sugar coat it, there are challenges: over the years he has had periods of severe tantrums, when he would scream as if he were literally being murdered. His verbal ability is limited. We have had times of self injury and aggression. He engages in pica, a behavior that involves eating or swallowing things that are not edible. He also will regurgitate food and play with it. He still makes noises and still, at times, engages in odd stereotypic movements. I share this with you not to make you feel sorry for him, but to truly understand what he has been able to overcome. I want families to understand. Where there is a will, there is a way. Dustin, his school staff, and our family have worked and worked and worked to reduce these behaviors and increase his levels of independence. While these are behavior challenges, they are at such low levels there are slowly becoming a non-issue. His current ability to not be disruptive in public has been years in the making. Thousands of hours of practicing, hundreds of opportunities, sometimes literally blood, sweat and tears, and all the while collecting data to help us know what was working and, if it wasn’t, what we needed to change about our teaching to make it happen. We owe it to our son to try, but sometimes we do need a break. It can be very overwhelming; sometimes I know that we will not be able to follow through. It is important to recognize those days and know that it is ok. And on those days, don’t even begin to try, because if you can not follow through, you may give in at the wrong time and make things worse than what you started with. Bobby also taught me this early on, and it has helped me tremendously mentally and emotionally. If it were not for the guidance I received from parents sharing their knowledge, if I did not take advantage of conferences by professionals in the field that are experts in Autism, if we did not seek out private experienced behavior analysts and if Dustin did not receive true applied behavior analytic services implemented with fidelity, Jake would still be crying, “Mom, Dustin ruins everything!” Dustin is able to do things that we once only dreamed about. I have seen small miracles with him over the years and, oh my gosh how the quality of life for our family has improved. With each new skill, you can see the pride in his face. We have many great family memories and adventures and the pictures to prove it. . I am thankful for all those who have supported us over the years and told me that things are possible and showed me how. While there are many challenges ahead, we are very hopeful for the future. We are very proud of Dustin. As he grows some things do get easier but again, nothing to do with “luck” – just constant, consistent, continuing moving forward with a purpose, never giving up. (Bobby note; I once had to follow Jennica to the podium, I was delivering a paper after she did a presentation where she described a behavioral intervention she carried out to address a period of Dustin displaying extreme tantrums. The function of the tantrums was not immediately obvious, and it was a complex functional analysis. Jennica showed vivid video and graphs detailing interventions as I watched audience members tear up and gasp and breathe heavy sighs of relief when she showed the behavior improving. She finished her talk and there was thunderous applause. Then it was my turn to speak. I got up to the podium, looked at my powerpoint, looked out at the audience and said “Um, uh…I’ve got nothing here. Anybody want to get a sandwich?” She did it to me again! We’re done. I gotta stop trying to follow her…..)
- We are grateful to Jennica Nill for her permission to share it.