From the Frontlines of Autism, We Find Hope by Kristin Selby Gonzalez

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PARENT’S PERSPECTIVE
From the Frontlines of Autism, We Find Hope
By Kristin Selby Gonzalez
Kristin Selby Gonzalez is the director of autism education for Enzymedica. She has been using The Son-Rise Program® with her seven-year-old son, Jaxson, for over four years. Kristin is certified in the Wilbarger Protocol and the Body Ecology Diet, and she is a provider of The Listening Program®. The Diagnosis As if possessed with the focused determination of a marathon runner, my son sprinted around the kitchen table over and over again. The two evaluators glanced at one another sharing a knowing look. I wanted to shake them. Don’t trade silent thoughts and leave me in the dark! Over the past year Jaxson, now two and a half years old, had been evaluated by a neurologist and two psychologists. Each visit was preceded by a four-month wait as well as 20 pages of medical forms – every time asking the same questions. I racked my brain for a good reason why these professionals could not simply share my information with one another, but I could come up with nothing to justify what was happening. My son’s simple repetitive behaviors, avoidance of eye contact, disinterest in people, and utter lack of verbal communication pointed toward autism. And yet, despite twelve months of begging for answers, pleading for help, and suggesting outright that my still nonverbal son might have autism, I had wrung not a drop of clarity from the dry cloth of the medical profession. An hour had passed. I asked them for their opinion based upon their evaluation. I was desperate to know if they thought my son had autism. “You need to have your son evaluated by our psychologist; we’ll set you up with an appointment,” one of the evaluators explained. Great, enter doctor number four. I held my sarcasm. “When would that appointment be?” “In about six weeks.”
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“Six weeks? Do you know what I have been through trying to get some answers for the last year?” “I am sorry, Mrs. Gonzalez. The soonest we can get you and your son in is in six weeks.” Anger at these two women, fear for my son, and frustration at the system that was set up to supposedly help me collided in a messy tangle of emotions. I couldn’t help it, tears flowed down my cheek. I knew that crying in front of these strangers would only reinforce all of the hysterical mother stereotypes they already walked in here with, but I had already passed caring. I turned toward them, my glaring eyes burning through my tears. “You look at me. Look at my son. We have waited long enough. I will be at the psychologist’s office with my son first thing tomorrow morning. And, make no mistake, we will be seen.” The two women exchanged worried looks. “I’m sorry, Mrs. Gonzalez. That’s just not possible. The soonest we can get you in is six weeks from now.” They worked their way nervously toward the door. I helpfully opened it for them, and as they exited I repeated, my voice flat, “Jaxson and I will be there first thing tomorrow morning.” My son was diagnosed the next day. Validation never tasted so bitter. The Prognosis I sat in the administrator’s office at the school district nervously clasping my hands. Okay, so I knew my son had autism, but at
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I did not know what the future held for Jaxson. I wasn’t sure how I would find all of the answers for him. But, by God, I would never give up on him.
least now I would learn how we would begin to “fix” this. I loved my son more than I felt my heart could contain. When I looked at Jaxson, his sweet round face immersed in a world all his own, I knew with crystal clarity that I would do anything – absolutely anything – to help him. The gray-haired administrator sat across from me ready to tell me, so I thought, what I needed to do to bring my little boy back to me. “The first thing you need to know is that he’ll probably never talk,” she said. My brain was reeling, desperately trying to compute this sledgehammer blow. “I… I ‘m sorry. What? What do you mean he’ll never talk? He’s only two and a half years old? How can you know that?” “Mrs. Gonzalez, please. The only way this is going to work is for you to be realistic. I have been doing this for a long time. Autism is something you can’t fix. This is a lifelong condition. Now we have services – free services – that we can set you up with for your son. What we are trying to do is to make your son’s autism more tolerable to live with. The best we can hope for is that
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he eats with a spoon and fork and is potty trained by the time he is eight years old. Usually at that point the children get put into group homes.” Her voice was like listening to nails on a chalkboard. “Mrs. Gonzalez, you are naïve to believe anything more will be possible for your son. You need to grieve for the child you thought you had. I hate to put it so bluntly, but once a duck, always a duck.” While she continued to bury my son, her assistant repeatedly interrupted asking what she wanted for lunch. I was happy to know that she could still maintain an appetite during my son’s funeral. I marveled at the fact that this woman who felt that she needed to devote several distracting minutes to consider what she would eat for lunch could so casually and with such confidence decide the outcome of my son’s life. I left in a daze, my eyes wet, and my spirits low. I sunk in a black depression, unable to get out of bed. It was a couple of weeks later when I finally asked myself the obvious but crucial question: “If I give up on my son, who will he have?” I made a decision then, one I would never take back. I did not know what the future held for Jaxson. I wasn’t sure how I would find all of the answers for him. But, by God, I would never give up on him. Finding the Right Educational Program for Jaxson I gently jiggled Jaxson awake. He gave me a crinkle-nosed smile. “Good morning,” he said. “Good morning, pumpkin head.” I planted a kiss on his forehead. Jaxson blew me a kiss back, a maneuver he pulled off with the casual laziness of a pop singer greeting his adoring fans, which certainly included me. My son had been awake only for a few minutes, but he’d already done two things: spoken and shown me affection – deemed beyond his reach only a couple years ago. I get Jaxson ready for the day, and we head toward his playroom. “Hut-one, hut-two, hut-three!” I say to Jaxson as I am holding a Nerf football. He looks at me with a beaming smile. I say, “Catch!” He puts his arms up and catches
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the ball. He is laughing and says, “Run!” I run to catch him and miss on purpose. He looks at me with excitement and says, “Catch me, Mama!” I run around crazy and tell him to make a touchdown. He sprints like a pro across the room and yells, “Touchdown!!” I cheer with excitement and run over to him and give him a great big hug. I believe that none of this would have been possible had I not found The SonRise Program®, an educational method that involved joining Jaxson in his own world before inviting him to join us in ours. Raun Kaufman, the CEO of the Autism Treatment Center of America™, had himself been diagnosed with severe autism as a boy but had fully recovered through The Son-Rise Program, which his parents developed specifically to help him. I began the course with some trepidation, not knowing whether this program would be what I was looking for. When I saw, on the first day, how the staff at the Center believed in Jaxson and didn’t in any way write him off, I knew I was on the right track. I got home and immediately began implementing this child-centered, parentdirected program with Jaxson. And look how far he’s come already! From nonverbal to over 500 words (we have really lost count), from disconnected to engaged, playful, and interactive. After all that I was told he couldn’t do, I am so excited as I continue to run his program and see all that he CAN do. Finding the Right Biomedical Interventions for Jaxson One aspect of my son’s autism that became apparent very quickly was that it had many biomedical components. My son had heavy metals such as mercury in his body. He had chronic constipation along with severe stomach pain; and he has extreme sensitivity to a wide range of foods, such as dairy, wheat, and other grains. It was hard to watch my cute little guy crying and pushing huge yoga type balls into his stomach in an effort to get some relief. I was so grateful to have found a Defeat Autism Now! doctor who was instrumental in helping Jaxson with mineral supplementation, DMSA chelation (to eliminate the mercury and other toxins), detoxification of Jaxson’s gut, and other crucial treatments. Some of what we used
included: aerosol glutathione, secretin, methyl B-12 injections, a far infrared sauna, Epsom salt baths, and vitamin supplementation. Unfortunately, when we began giving Jaxson the recommended dosage of aerosol glutathione, the rather high rate and intensity of his detoxification led to him becoming aggressive (a real change for him!). We cut the dosage in half, the aggression ceased, and there was a small jump in his language and ability to follow directions. The sauna sessions created something new yet so simple: Jaxson, for the first time, was able to perspire, and he began sleeping much better throughout the night. It was also very interesting to see that when we began methyl B-12 injections, we saw no change; however, once we started enzyme therapy (see below), the injections suddenly yielded results. The day after each injection, we would get comments from those working with Jaxson that he was more connected, had more eye contact, and was more flexible in games. (As I’m sure you know, it can be so challenging to discern exactly which biomedical intervention leads to which improvement, since many of us use interventions concurrently.) As you may already know, dietary intervention is so crucial for so many of our children. Food can either be medicine or poison. In the early days, though I didn’t realize it at the time, most of Jaxson’s food was poison. Drastically altering Jaxson’s diet became one of the cornerstones of his treatment. One of our big goals has been to do everything we can to heal and seal Jaxson’s gut.
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PARENT’S PERSPECTIVE
He would spontaneously say, “Good-bye. I love you!” The combination of dietary intervention plus enzyme therapy benefitted Jaxson enormously. Sensory Savvy It is so important to do our best to see through our children’s eyes. Children with autism frequently have a sensory processing disorder. This means that our children see, hear, and feel things very differently than most of us do. I can tell you with certainty that Jaxson hears things at different volumes than I do, sees light differently, and has a different sense of touch than I do. He often is very sensitive to things he hears and feels. And, rather than tell him to behave differently, I always try to look for how he is attempting to cope and self-regulate and then help him with this. It was quite clear that Jaxson had sensory issues. What wasn’t clear was what we could do to help him. He is a child with tactile issues (wouldn’t wear his shirt), auditory issues, and difficulty with any sudden change in his environment. I discovered a protocol called the Wilbarger Protocol that helped him with his tactile issues. It is a brushing technique where you use a specially designed brush and follow up with joint compression. This is done every two hours. We did this protocol for nine months, and he now has no issues wearing his shirt. In fact, he actually loves picking out what he is going to wear. He is currently doing The Listening Program to address his auditory issues. We have noticed clarity of speech and improvement in his fine motor skills. This program uses headphones and specially developed classical music. They have something called ABC Modular Design™ that enables listeners to effectively exercise their auditory processing system, providing “warm-up,” “workout” and “cool-down” phases. This really helps children to not become overwhelmed and hyperactive after their session. We also have created a distraction free environment for Jaxson in which to do therapy and play that we learned from The Son-Rise Program. Since doing that, he is less rigid about his environment changing and is becoming more flexible. Lastly, we added the following programs/ tools to his existing therapy and play: the HANDLE Program, Brain Gym, and the Alert Program. These programs offer techniques
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As a mother on the frontlines of autism, I tell you all of this to give you some signposts to follow, but, most importantly, to say out loud that no matter what you have been told about what your child can’t do, there is always something you can do. Don’t let anyone convince you to give up. Take it from my son: “Progress for one provides hope for all.”
My own research led me to the dietary intervention that is best for Jaxson: a gluten- and casein-free version of the Specific Carbohydrate Diet (www. pecanbread.com) in combination with the Body Ecology Diet (www.bodyecologydiet. com). One of the most exciting interventions I found was enzyme therapy. Because Jaxson has such severe digestive issues, this therapy has been of utmost importance to him. I also had digestive issues (although not as debilitating as Jaxson’s), and this helped me within the space of one meal. Jaxson’s language exploded! I could now ask him a question like, “Jaxson, how are you?” and he would suddenly reply, “I am doing good.”
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Above all, I am always very aware of respecting Jaxson’s sensory situation.
to help children to utilize both hemispheres of their brain in a balanced and coordinated way. They use exercises to stimulate the brain and set children up for success rather than failure. A tool that I developed over the course of my program with Jaxson is something I call “the three S’s”: Slow, Silly, Shhh. When Jaxson was being very cranky and rigid, as if nothing was the way he wanted (no matter what I did), I would say to myself, “Maybe I’m the sensory overload here!” So, then I would move away from him slowly and quietly (being silly doesn’t have to mean being loud), and, at the same time, keep my facial expressions very animated (to show him that, even if he was struggling, everything was okay). Above all, I am always very aware of respecting Jaxson’s sensory situation. In Conclusion We have worked with Jaxson for over four years and, although he is not recovered, he is completely transformed. We will continue to work with him. I am constantly learning, and I will never stop. As a mother on the frontlines of autism, I tell you all of this to give you some signposts to follow, but, most importantly, to say out loud that no matter what you have been told about what your child can’t do, there is always something you can do. Don’t let anyone convince you to give up. Take it from my son: “Progress for one provides hope for all.”
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