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Nov 16th 2016 posted a blog How Quickly they Forget

At least until the patient gets to the front door of the hospital or clinic. Then there is a significant data dump. For those who love Teach-back, and have made it a significant part of their career, please do not: 1. Take offense and start looking for wa

May 17th 2016 posted a blog "Empowering" Your Patients

Has anyone ever written an article of “automobile repair empowerment”?  What about “Pool Pump Empowerment”?  Have veterinarians ever written any articles on “Pit Bull Empowerment”?  Every few years someon

May 17th 2016 posted a blog Do It or Else

“Do it… or else!”  Four little words that have such an impact on productivity.  In many organizations those words are followed up with some carefully prescribed consequence that meets some legal eagle’s opinion of what a

May 17th 2016 posted a blog Bribes versus Reinforcers

 “I know that you are doing. You are just bribing the people to do what you want them to do.” That statement is one of the more frequent things that I hear when people ask about what I do. Of course we are all experts at behavior. After a

May 17th 2016 A family response to autism “Your child has autism” or “your child is on the autism spectrum.” Whether those were the first words you heard or the only words you heard does not matter. The reality is that they were spoken and they were tied to your child. When my brother Ben was diagnosed in 1967 I was just turning 20. There was no misunderstanding or a lack of comprehension. I was not a year or two older than Ben so that words like autism were of little consequence. I had no idea what autism was and I was in good company. Most of the world had little comprehension and a common response to Ben is autistic was to ask would he be working with clay, oil paints, or water colors. This was back when Dr. Bruno Bettelheim was pushing his theory about refrigerator moms. We were convinced that he was a quack based on the fact that there were seven of us “kids” in a family that produced two MDs and two PhDs. Ben was the last of the seven so either we were all autistic or Bettelheim was a quack. There were no web sites, no Autism Speaks, the Autism Society was as much an infant as Ben and finding information was almost impossible. To some degree that was a blessing. The charlatans and snake oil peddlers were few and far between. While we have significant advances here in the 21st Century we also have an endless number of people taking advantage of families on the autism spectrum. If Dr. Elizabeth Kubler-Ross is credible with her theory on death and dying then she is equally correct when parents hear for the first time about autism. “Shock, anger, denial, bargaining, and acceptance.” The words march in a somewhat linear fashion until we get the next unexpected disappointment. You get through shock then anger, face a setback, and go through shock again. You can live through anger a thousand times. Sometimes it seems that the thousand angers can occur in a single day. ‘’Of course I am angry and I am scared.” Tens of thousands of parents have asked the eternal question, “What is going to happen when I am gone?” Clearly I can understand those words as my 84 year old mother looks at each day as perhaps her last. She repeats, as she has done for almost a half century, “What is going to happen to Ben when I am gone?” Shock: Perhaps you felt it deep inside as you watched your friend’s infants and toddlers moving ever-so-slightly ahead of your child. The words of your doctor may have been guardedly comforting as you clung to the words, “He or she is just a little behind to normative curve.” As the gap widened your concerns grew and after two or almost three years and a conversation with your doctor the only word you heard was, “autism.” Your brain filtered everything else as autism echoed wherever in your brain that such words go to be processed. How do you process an unknown? The next words you might hear as your brain re-engages is about more testing and referrals. Your eyes are open, your body is functioning, but you are fading in and out of reality. You might find yourself in the driveway of your home and have no idea how you got there. The “whats”, “whys”, “hows”, and “wheres” start streaming in and you have no answers to an endless cascade of questions. Denial. Perhaps the doctors were wrong. They said that my son was just running at the slow edge of normal and would perhaps catch up one day. The differences between normal progress and delayed progress are not as evident in the first few years. Perhaps another prayer, a gift to my favorite charity, a gluten-free cookbook, a restraint system, a hat, a coat, anything that is different than before could be the magic cure. Each new fad is entered into with a hopeful expectation and then within a few days or weeks, sometimes a month or more, the wall comes tumbling down. A hundred times a year I watched as my Mom picked herself up and went back to the drawing board. There is a point certain that denial ends and you start looking for the next new thing. Bargaining at least allows a sense of empowerment and hope as now you reach into your assets to do an “if-then” bargain. This stage never ends. Recently, after 49 years of “if-thens,” I heard another one from my Mom, “If someone can get Ben to talk then I will give them $50,000.00”. Each benchmark, as Ben failed to stay with his peers, there was another bargain and another missed mark. Acceptance: My parent training web site ( is for parents and families. It is not a site for sadness but one of hope. In the movie with Tom Cruise, The Last Samurai, the emperor asks a simple question, “Tell me how he died.” Cruise’s character answers, “Let me tell you how he lived.” The greatest stories are found in victory over defeat, life over death, acceptance over denial, and developing over destruction. As you write your family story each day is a paragraph, each year a chapter, each person you touch an opportunity, and each program you create a blessing. A pastor once gave a sermon reflecting on Ben’s life. He entitled it, “A Life Wasted?” In his introduction he dealt with the shock, anger, denial, and bargaining. As he reached acceptance he remarked, “But for the fact that Ben was autistic there would have been no school and residential program for almost 40 years. But for the fact that Ben was autistic there would not have been thousands of people trained as therapists over those years. But for the fact that Ben was autistic there may have not been a viable solution in this community and children would have languished in failing institutions until the years passed and death finally made the final call.” Mom was determined that no stone would go unturned and that no possible solution would go undiscovered. In 1967 there were very few stones to turn but she went after them all. Behavior modification looked highly likely as a method for shaping and changing behaviors. Threshold was founded in the family room of our home. Later we purchased a small home for Susan, Darcy, and Ben. We hired Dr. Eb Blakely, developed on-the-job training programs for students we hired from FTU (now UCF), and the Threshold residential program was born. Every story is different and there are a million of them in the USA alone. While we are almost a half-century down the road I can still hear the words to Susan’s story. Her mother and father were a young couple and had great expectations for their unborn child. When Susan was born she had obviously visible abnormalities and the doctors provided these parents with the best advice of the day. “You need to give her up to the state. They have programs for infants and children like Susan.” This family, as did hundreds of others, followed the best medical advice of the day and Susan was admitted to the local facility. A year later the family had another baby and they now had the perfect little girl they had wanted. In fact they named the new baby Susan. Eight or nine years ago Susan needed surgery and the hospital required approval by a living relative. With no small effort I was able to find her mother in another state. She was distressed by the fact that I asked for her help. “Dr. Wright,” she said, ‘I gave up the first Susan decades ago. I have but one daughter.’ She agreed to call the hospital but concluded the conversation with, “Do not call me again about this woman unless it is to let me know that she is dead.” It is not my intent to malign this family’s choice. They followed the best medical advice of the day. Each of us can only measure the best response when we have to walk their path and carry their burden. As my Mom looks back she would have preferred that Ben turned out like the rest of us. On the other hand she found many years of joy that she would not trade for anything. When Ben and Susan were born the incidence of autism was 1 in 5,000 births. Pediatricians would tell residents, “In your career you may see one child with autism. There is nothing you can do about it.” Half a century later the incidence has steadily increased. With the increase of any disorder or disability there is an increase in services and programs. While many are quite good there are still too many who take advantage of parents who are desperate for a cure or anything that looks promising. You will find that you will be your child’s most consistent and reliable therapist. In addition you will be the quality control manager and advocate as you navigate through a sea of therapists, physical, occupational, speech, behavior, music, equine, play, and the list goes on. Hollow promises will be made, outrageous fees will be charged, claims support a guaranteed cure will be offered and you will be pulled in unimaginable directions in your search.

Dec 19th 2014

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