Created as a guide to help other families, this text is "Autism 101" providing triage for one of life's major tragedies. It is intended for those who need it the most, those families who have children struggling with the most extreme cases of autism. Providing a sword and shield, when doctors, medicines, prayers and even tears don't help.
Written from parents to parents documenting real life experiences and time proven results. This is a book unlike anything else available. Many real life secrets are revealed that have never previously been disclosed, along with priceless things which really helped their son to improve. It is a comprehensive resource to help guide those struggling with their own personal autism battle, to quickly get them to the highest levels of success.
This book is a road map to the solutions, strategies and shortcuts that really work in the battle against Autism.
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RAISING SUPERMAN!AUTISM 101
By HOWARD L. RODGERS
AuthorHouseCopyright © 2010 Howard L. Rodgers
All right reserved.
Chapter OneIT'S A BOY!
I still remember the day our first son was born, as it feels like it happened yesterday. My wife was lying on the operating table having an emergency C-section. Her eyes were focused sharply on mine-peering deep into my soul. You could feel the emotional electricity shooting throughout the room. Tears streamed down both our faces when the doctor finally looked over at us and said, "It's a boy."
All our hopes and dreams had come true in that one small instant of time. My head was instantly filled with all kinds of positive thoughts about how this small child would change the world. He was so tiny and precious. He was my son! It was the happiest moment of my life.
Then reality came back-for a very long visit.
Over the next few months, we began to experience the realization that something was terribly wrong, although we couldn't quite put our finger on what it was. We weren't sure what was happening, as this was our first child, so we had nothing to compare these events to. Our son had a high fever just after receiving some shots. He cried (and cried and cried), and all our doctors told us was "You're new parents and this is normal. Just walk with him." So we did. I recall being up for weeks at a time, walking up and down the hallway, probably covering twenty miles of distance in one week. Despite all our effort, nothing helped.
Finally my son began crawling, but not consistently. He also began speaking but quickly lost this ability. Over the next two years, we sought the help of a variety of specialists. This finally resulted in us being told, "Your child has severe autism and mental retardation." It was not just any form of autism. He had very severe autism with many sensory and cognitive problems.
We didn't even know what this meant, but we knew it wasn't good. In fact, per the feedback we heard, our son had the worst case of autism the doctors and specialists at Johns Hopkins had ever seen. He was violent and often very mean. We had to wear a face shield to play with him, as he'd try to hurt us when we got near him. This wasn't the child I had hoped and dreamed for. It was some kind of nightmare I couldn't even deal with. And it didn't appear there was anything we could do to help him recover, despite reaching out for as many medical opinions and treatments as possible.
The day we realized what "having autism" meant was one of the worst days of my life. I remember crying and worrying and crying some more. All the hopes and dreams we had for our son went crashing down like a house of cards, and what we were left with was a child who needed more help than we could ever imagine. Despite many doctors and therapists telling us, "Don't worry, he'll improve," he didn't. None of them could ever imagine or describe the pain and anguish we were destined to face.
I want to stop here and say that things did actually improve-but it was a long, hard road to endure. Remember, I said in the introduction that I would tell this as it is, without sugar-coating it. I refuse to tell you, "It's not that bad," as believe me, it was that bad. However, there were a few things we did that really helped, and despite this child being really sick, we were determined to stick it out with him.
He needed our love and care, and we were determined to provide it to him, no matter what that meant. So I want to make sure that everyone reading this book realizes that from this point forward, we won't focus on the horrible, tormenting emotions that accompanied this event. We will focus on what really made things better-for him, for us, and for our family.
Medically, I think it's fair to say that only two things helped-and those were unapproved, unorthodox forms of treatment. I'll share what those were later in this book. Conventional medicine really had nothing to offer us. It's not that the doctors didn't try, as they tried very hard. Aside from some focused behavioral therapy (which took years and years to implement), nothing provided the quick fix or recovery we were hoping for. In fact, most of the medicines and treatments we tried either made our son worse or had no effect at all. So it seemed we were on our own, which was very scary to say the least.
So here we go. The following items are a quick guide to what worked for us. I'm keeping this brief and to the point, as I know a few things for sure. If you're a parent trying to raise a disabled child like we were doing, you don't have a lot of time to read useless material. Second, if you're a single parent trying to raise this type of child by yourself, your situation is even more challenging than what we went through. If this is the case, then I commend your dedication and love for your child. Last, if you're a family member trying to understand what someone else is going through, you also need to read the actual feedback to understand what we went through.
Remember, this is only our experience as to what worked for us. It's okay to disagree, take a contrary view, or decide that I'm wrong. Having an opinion as to how you want to raise your child is the first step in ensuring the results are what you want to see. Without an opinion, you'll be swayed by everyone who comes along and probably make the wrong choices. Finally, if you experience what we went through, you'll see that very few people on the planet at best have any idea what you're dealing with. So your opinion is probably more accurate than anyone else's opinion.
The key is to become a great advocate for your child. After all, they may be unable to speak or think for themselves. So it's up to you to get the right mix of items into a specialized environment for his or her safety and success. As we describe our experience, it will become clearer as to what being a great advocate for your child means, and what tasks it involves.
Chapter TwoDON'T DO THE BLAME GAME
The first realization came to me after years of struggling with what happened to our son. This may seem like a trivial matter, but it's not. At first, I didn't even realize I was carrying this around with me. However, it significantly prevented me from taking on some of the challenges we were faced with. I was blaming myself for what happened. Maybe not consciously, but definitely unconsciously there was a heaviness in my heart, and I felt somewhat responsible for what had occurred.
Depending on your specific circumstances, it's normal to feel like some part of what occurred is your fault. If you're the mother who carried a child, you may feel like you did something wrong during the pregnancy. If you're the father, you may feel like you did or didn't do something that contributed to the problem. Either way, these feelings are natural. However, it's critical that you put this past you immediately and get over it. Otherwise, it will continue to impact your ability to care for your child and may hinder future progress and improvement.
Our son came down with autism and mental retardation as a result of the shots he received (or so we think, as medically it's impossible to prove). Regardless of what others said, I felt as if I was responsible for him getting these shots. I carried this guilt with me for many, many years. Remember, I was the one who approved him getting the shots. I was the one who called the doctors and didn't push the issue hard enough regarding his fever, his crying, and his lack of recovery. I was the one who held him walking back and forth, all the while hoping things would improve. But things didn't improve. I felt as if I was the one who stuck the knife into my son's head-condemning him and our family to a life of torment, struggle, and anguish. And it was my fault, as I could have said no to the shots.
Many of you reading this may think, Well this is just stupid. Of course it's not his fault, as no one could have possibly known what would occur. As stupid as it sounds, I felt as if it was partly my fault, and inside I carried this guilt for years. I'm a professional with a technical degree, two masters degrees, and years of life experiences. None of these credentials could save me from the guilt and torment I carried when all this went down. Rationalizing the facts didn't help, as emotionally I had it in for myself. It was only through years of struggling that I came to the realization that you can't do the blame game or you further hurt your child. And here's why.
First, all things happen for a reason. It is very likely that my son may have developed this condition as a result of something other than the shots. No one knows for sure. Hind sight being 20/20, of course I think I should have stopped the shots from occurring. However, in the moment it occurred, I had him receive the shots so he could be protected from illness and disease. The intent was good-and no matter what the results were, we can only do our best with the information we have when given life's choices.
However, this is the real reason you can't do the blame game. No matter what I did or didn't do, blaming myself would not help improve the outcome. Whether or not I was responsible for what happened was irrelevant. What was relevant was that my son required significant help and needed for me to be at my best. Carrying the blame game around for years prevented me from making some of the good choices that would eventually help my son improve. It was a huge distraction preventing me from focusing on things that really mattered with respect to improving my son's condition. The blame clouded my thinking, emotionally drained me, and prevented my relationship with my son from fully developing until years later.
Consider this shortcut number one-drop the blame game. Whether it was your fault, the fault of your spouse, someone else's fault, or no one's fault at all, it really doesn't matter. Move on and focus on working with what you have in front of you. The decisions and actions you need to make require your full attention. You can't give your best to your child if you're walking around with a head full of guilt.
Remember, this is something you need to do, as no one else can make this happen. You need to really understand that for the best outcome of your child, you need to let go of the blame game, drop the guilt, forgive whoever needs to be forgiven, and move on. It's more difficult than it sounds, but this is absolutely vital for you to be at your very best when working to help your child. Otherwise, you'll always be half-heartedly engaging on the hard decisions that need to be made. You'll second guess every tough decision you make. You'll worry that round two of more bad decisions is just around the corner. And you will always be distracted from providing your full focus and attention on your child's needs. It'll prevent you from living your life. And worse, it'll prevent your child from getting the maximum care and love you need to provide.
So make this priority one, and realize that the only thing you should blame yourself for is not giving your child all the love and attention deserved from this point moving forward. After all, we can't change the past, and the future is uncertain. The present is the only thing we can directly impact, and it needs your focused attention right now.
Chapter ThreeEXPECT TO BE DIFFERENT AS A PERSON, AS A PARENT, AND AS A FAMILY
This next step is something that many people have difficulty with, but whether you openly embrace it or not, it'll eventually happen. As the parent of a severely disabled or handicapped child, you need to recognize that your life and your actions will be very different from those around you. Things that tend to be simple decisions for other families may be extremely challenging or impossible for your family to do.
Let me begin by providing some examples, as this may help clarify what I'm referring to. Our son was very difficult to transport and next to impossible to control. As a result, some of our routine tasks (like shopping, visiting with family, etc.) became very difficult or impossible to engage in.
We eventually had to develop a routine where my wife went shopping while my son was at school or when I was home to supervise him. Why did we do this? It was the result of my wife being continuously bombarded by people telling her, "Please control your son." I can't tell you how many times she came home telling me about some store manager asking her to "take control of her son" or asking her, "Don't you discipline him?" At one point, we thought about printing up cards we could hand out saying, "Our son is disabled and whatever you think about his outbursts, you're wrong. So please mind your own business!" But in the end, it was just simpler to avoid the situation altogether.
Restructuring our shopping routine was one thing, but dealing with the family visits was another thing altogether. Once our son got to about seven years of age, he became very destructive and required continuous supervision with positive environmental controls. He also wasn't potty trained. When a child is two years old and not potty trained, it's a nuisance. When he's ten years old and not potty trained, it can be a major disaster. Each night, he would take the contents of his diaper and throw it all over his room, smear it all over himself, the floor, the walls, the ceiling, and ... well, you get the picture. How do you describe this to your family members who are asking you, "So why don't you come down to visit for a while?"
We were faced with some very difficult decisions. Do we try to take this child outside of his tightly controlled environment, or adjust our lives so that we maintain him in the easiest, most effective/safe environment we could construct for him? We went with the second approach-keeping him (and ourselves) in our home environment, sacrificing the family visits.
This was very difficult, and to this day some of our family members probably do not understand. They may think that we think we are "too good to be with them." Or they may think we don't care about them. To be honest, I'm not sure what most of them think, aside from the fact that we're loners who don't visit them anymore. But none of them can even imagine the difficulty we face on a daily basis to just live with this child. Hopefully, they know we love them all dearly and appreciate all their help, support, and understanding as we've worked through these issues.
We had to make some very drastic adjustments in our life. For example, it became very obvious to us early in the game that we could not travel with our son-either on vacation or in any capacity. So we fixed up our home as our vacation spot. We put in a hot tub, sauna, tanning bed, pool, and other items to make our home much more enjoyable. To be honest, sometimes it still feels like we're tied to a prison, but at least it's a nice prison. Our home looks very different than our neighbor's homes, which ties to the theme of expect to be different. Outsiders probably see our home and think we're "toy crazy." But in fact, this is our attempt to not go crazy by having what we need, where we need it, when we need it.
We also had to modify the living conditions for our son, so we could easily address his "super-special messes." Eventually, we had his room covered floor to ceiling with one-inch plywood with Formica covering on top, so it's all like one big countertop. This was the only way we could easily clean up his messes and keep him from punching holes in the drywall. Remember, this chapter is about realizing you're going to be different. Different may mean adjusting your schedules so you don't aggravate behavioral issues by forcing your child into a public setting. Different may mean that you have commercial-sized cleaning equipment in your home to address the commercial-sized messes your child creates. Different may mean that your family vacation takes place outside in your fenced-in yard, as opposed to being at the beach or other public setting.
Each of these items revolves around choices, with the choices for your child coming first. So the meat and potatoes of this chapter are about just realizing you will be different-very different than those around you. So just get over it, move on, and do what you need to do to best care for your child, your family, and yourself. You can't worry about what other people think, or you and your child will suffer. Those who love you will understand, or maybe they won't. In the end, it really doesn't matter. What matters is that you and your child have a warm, loving relationship and that you have all the supports needed to keep yourself, your child, and your family safe, happy, and together.
Excerpted from RAISING SUPERMAN! by HOWARD L. RODGERS Copyright © 2010 by Howard L. Rodgers. Excerpted by permission.
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Table of Contents
Chapter 1: It's a Boy!....................1
Chapter 2: Don't Do the Blame Game....................5
Chapter 3: Expect to be Different as a Person, as a Parent, and as a Family....................9
Chapter 4: Get Out of Debt and Stay Out of Debt!....................13
Chapter 5: Prepare Yourself, Your Home, and Your World!....................19
Chapter 6: Go after Support Services Like a Big Dog! (Woof, Woof!)....................23
Chapter 7: Keeping the Focus on the Hocus Pocus....................25
Chapter 8: The Sprint for Support Services....................35
Chapter 9: Let's Rap about Wraparound....................41
Chapter 10: Let's Take a Ride! Special Transportation Supports....................45
Chapter 11: Believe It or Not, School Is a Blessing!....................49
Chapter 12: Other Special Support Programs to Consider....................55
Chapter 13: Protecting That Wonderful, Innocent Smile!....................59
Chapter 14: The Power of Print....................63
Chapter 15: Dr Spock versus Dr Seuss....................71
Chapter 16: Reflections in the Mirror....................79
Chapter 17: Planning, Prioritizing, and Purchasing....................85
Chapter 18: Expect the Unexpected as It can be Wonderful!....................97