The ride home from the pediatrician that afternoon in February, 1995, was as classic as it could get. My wife was driving and sobbing, my three-year old son with autism, Aaron, was in the back seat crying, and I was next to him trying to calm him down. I suddenly realized he had soiled his diaper. It was raining. We had just gotten the news…bluntly and non-compassionately…that Aaron had autism and that, considering the characteristics displayed, it would be best to have him “sent away.” Aaron had no speech by which to communicate his needs, just behaviors—what many would call “typical autistic” behaviors.
Fast forward twenty-one years later: today Aaron is twenty-four. He has speech, but no real conversation. He verbally requests what he needs and has now developed functional speech, works in two national chain restaurants, trains in two national department stores, and helps in a very large-chain supermarket bakery. All of this was as a result of a program that we had to create, because none of his schools, after-school programs, or adult day programs would. We waited, unfortunately, 20 years to take the step that we did. Why? We trusted our child to the “experts.” Even I, an educator, yielded to educational experts, program experts, school board experts, autism experts, private instructional agency experts, medical experts, and others. My instincts, when he was first diagnosed, kept telling me otherwise. In response to his diagnosis, I left my teaching position for a year and a half and stayed home to oversee a home program of some 30-40 hours per week, bringing in therapists and a program director to guide us. Until we could bring it all together, I went to work with Aaron, breaking his obsessive-compulsive disorder (OCD) behavior of only wanting to drink out of a yellow-and-white spouted cup (we had 15 of them) and having him completely toilet trained in four days, including at nighttime. My instinct said to continue my efforts, but my lack of confidence in dealing with an area of instruction that was outside of my domain won out. The “experts” took charge. So began 19 years of canned-educational approaches, fruitless Individualized Education Program (IEP) meetings, and fighting with school systems, doctors, agencies, and the like.
Aaron aged out of school at 22 years old. There was that ‘cliff’ we parents all fear, especially for a child classified in the “lower-functioning” part of the spectrum. “Where does he go from here?” We tried four adult day programs. He was asked to leave all of them due to “autistic behavior.” Three of them specialized in autism. What was the behavior? He would get agitated due to sensory overload from the environment and grab the arm of teachers or aides to help him. He has a hiatal hernia and acid reflux (which we only recently discovered when, on a hunch I gave him a couple of Tums and saw him calm down immediately thereafter), and, again, would grab the arm of an adult to express his pain and discomfort. They labeled him “aggressive” and not a “fit” for their group. The last time he was thrown out was from a program in the Orlando, Florida area. It was January, 2015. That was the last straw.
I said a prayer, and in February 2015, Operation Meaningful Life was born. Instincts fired on all cylinders with the creation of a daily program focusing not only on all essential life skills, but also on job, career, vocational, and social skills. We cover all the domains that any non-autistic individual has access to. This, in itself, makes Operation Meaningful Life unique, but there is more. Our goals and objectives look skyward, outside the box, beyond anything else we have seen in Florida or around the nation: we aim for life-long productivity, purposefulness, and personal achievement. And here is the kicker, so to speak: we are committed to the so-called “lower-functioning” group of individuals, to make them “higher-functioning.” We do not exclude individuals based upon their “autistic behaviors.” Our approaches, methods, and trainers have to be exceptional, as our goal is virtually unheard of elsewhere.
We also aim to integrate Operation Meaningful Life into new and existing residential settings and models, to ensure that the opportunities for life-long productivity are always available. The program is, in fact, flexible so that it can adapt to any number of different residential settings. We realize, too, that our son will need a residential placement at some point. We do have a vision for the type of setting we know is necessary, but are willing to look at, and work with, existing settings.
People who see Aaron now cannot believe he is the same child they once knew. He is happier, more productive, and is even giving instructions to us about how to do things. He does many things independently now, and enjoys it immensely. We have a Facebook following of over 5,300 followers from around the nation and the world. We post program insights to assist other families in their efforts to have something better for their children, particularly their adult children. It is not too late to train in productivity skills, even if the individual is an adult with little training up to this point. After 18 months in the program, Aaron is no longer considered to be “low-functioning,” but is rather “higher-functioning” based upon a tremendous number of acquired productivity skills. He has been trained in many areas, including hotel, restaurant, culinary, baking, department store, office, independence, residential living, and property maintenance skills—and there is still a long list of other areas yet to come in the program. Why so many areas of training? Consider for a moment: as with all typical individuals, individuals with autism will change and develop over their lifespans. They will have to adapt to new situations, involving physical body changes and capabilities, environmental changes, opportunity changes, and the like. By learning a broad array of skills now, it will allow for an easy transition to new circumstances later in life and thus ensure life-long productivity and accomplishment…a perfectly logical and realistic strategy. The key, of course, is the methods used along the way. Operation Meaningful Life closes no doors on perspective and alternate paths to success. Every week sees progress and personal accomplishment that even the individual being trained is aware of.
We have proven that “functioning” is merely a matter of proper instruction and approach. The problem is convincing other programs designed for individuals with autism that this is so. We are familiar with several businesses that proclaim their focus on helping the autistic population. What they do not tell you is that they will only assist the highest-functioning individuals. We at Operation Meaningful Life will never turn away anyone who is classified as “lower-functioning.” They, too, deserve a chance to prove themselves, and can do so with the proper training.
We know that our mission must expand to help as many families as we can, as we are receiving many desperate requests from families across the nation; at this point, we do not know how best to accomplish this. We would welcome an opportunity to join hands with other families or groups that would commit to building a future for these individuals that far surpasses society’s current expectations. Currently, we know that Operation Meaningful Life is inspiring families and educators based upon the letters and comments we receive, and we hope that you, too, may draw benefits from the many insights that have been graced to us. We are committed to letting parents of “low-functioning” adult children know that there is hope for their future. All the best.
Michael L. Stuart is a retired educator with thirty-five years of experience in public and private education teaching middle school and high school students. He has been married for 27 years to his wife Harriet and has two children, Jessica who is 25 and Aaron who is 24. They currently reside in Jacksonville, Florida. Michael may be contacted by email at: email@example.com or through Facebook at Operation Meaningful Life: https://www.facebook.com/groups/800572066686292/
This article was featured in Issue 53 – Working Toward The Future