Miracles are Made: A Real-Life Guide to Autism by Lynette Louise, eBook 2011; with < My Thoughts > by Sara Luker
Excerpts from the book – (2% indicates location in the Kindle version of the book, instead of page numbers).
2% I have raised eight very special kids – or perhaps it is more accurate to say – eight very special kids raised me.
I understand autism from the vantage points of living with it on a twenty-four-hour-a-day basis and from working with it eight hours a day for weeks on end. I’ve been, and am, aspects of you. I share some, or all, of your situation and have armed myself with twenty-five years of acquired knowledge that you may not have had the time to learn, I am blessed. My clients are improving and most of my kids have grown healthy as well as independent.
At first I was just self-educating as I read and gulped and followed up on every autism clue. Eventually I embraced more formalized training and received certifications in the Son-Rise method (a form of play therapy aimed at improving autism) and in Option Process Mentor counseling. I trained in and apprenticed under some of the top clinicians in the field of neurofeedback (aka biofeedback for the brain), which as it turns out is the easiest and most excitingly impactful therapy I have ever used. I then branched out on my own using family dynamics counseling, play therapy, and neurofeedback to heal children and their families around the globe.
< My Thoughts > “…my main and most-used therapy is neurofeedback…”
From website: http://nevadaneurohealthcenter.com/ Retrieved November 2016.
Authors on this website tell us that… “Neurofeedback piggy-backs on very old principles of learning, classical conditioning and operant conditioning.” “Neurofeedback attempts to teach out of control portions of the brain to act more in synch with the entire mind… when all parts are in a balanced rhythm.” They tell us… “The brain can be thought of as a symphony orchestra, one with many different instrumental sections such as string, wind, percussion, etc. If left to play with no conductor, the symphony orchestra would sound dissonant and unpleasant.” With neurofeedback, “…the brain can begin to process more efficiently, resulting in a healthier mental state.”
The authors caution that neurofeedback does not benefit everyone. They train by “visual and auditory methods, however if you are not much of a TV person and not much of a Music person you may have trouble benefitting…” The reason is that neurofeedback is a therapy which “allows your child to focus on something they enjoy and that can hold their attention. As your child watching a movie.” As the child watches the movie… the computer receives information in real time, the activity of the brain.” The feedback comes in the form of the movie getting brighter or dimmer, or modifications in the sound. When the brain is processing the data more efficiently, the child is rewarded with better picture clarity or better sound; reinforcement. “Neurofeedback is a method of making you feel alert, relaxed and aware, all through reinforcement.” Sometimes known as “training your brain while watching a movie!”
2% Eventually I ended up with a Masters in Social & Behavioral Science. I study neuroanatomy to be better equipped when working with neurofeedback and align myself with the minds of as many highly respected professionals as I can attract.
< My Thoughts > “…better equipped when working with neurofeedback…”
Sterman & Egner (2006) say “…the research literature as it stands today provides very good grounds for considering neurofeedback training a valuable treatment option, particularly in drug non-responders.”
3% For example, before I even dreamed of embarking on a career dedicated to changing brain function, I was educating myself in ways that would later become useful; in my early twenties I got an honors degree in the seemingly unrelated field of main-frame computer languages. Given that I work with computers to fix brain-wave activity, part of that training came in handy while also enhancing my understanding of the activity of the brain.
I will share my story of trying to raise children and grandchildren. Out of autism that the treasures come and the mysteries are unraveled. It is because… most of the children I am referring to are no longer diagnosable as autistic.
4% I am relatively attracted to balance so this makes me happy. I come by my attraction to balance naturally. I know that to be true because my main and most-used therapy is neurofeedback. It is a means of reading brain wave activity and then giving the brain information about how to balance that activity. Balance, as it turns out, is the secret to mental and physical health and all life is endowed with the desire to achieve it. Sometimes we call that desire for balance “the pursuit of happiness.”
< My Thoughts > “…neurofeedback – giving the brain information about how to balance” overwhelming activity.
A study Sokhadze, et al. (2014) states that…“Neurofeedback improved executive functioning and behavioral symptoms in autism.” This was determined as a result of their study which “may indicate facilitation of visual target discrimination processes and enhanced habituation to task-irrelevant.” In other words, the study found that a myriad of environmental noise which persons cannot separate or identify “could account for the strong averse reactions to auditory, tactile and visual stimuli that are common in autism.”
While Friedrich, et al. (2015), see neurofeedback as possibly eliciting “specific improvements related to the training and specific feedback. As social interactions build the fundamentals of our lives, an improvement in social interactions could strengthen the relationships with the family, facilitate social relationships as well as academic interactions and profoundly improve the health and wellbeing of individuals with ASD across the lifespan.”
To me, I can see where this kind of neurofeedback success could qualify as a ‘balance’ of life and a ‘pursuit of happiness.’ Smiles.
4% Diagnosis without directions: this is what it is to be told your child has autism. It is my intention to help you understand why that is and then to change that reality by teaching you what to do to improve the prognosis.
5% I will introduce you to the boy who introduced me to autism… it was attempting to understand Dar that taught me to understand autism. I spent all my exhausted mommy hours wishing I could fix him (and eventually his brothers as well) with a pill or a diet or a magical potion. Inevitably I was to discover that I was in good company – most of the amazing parents I’ve worked with did the same.
< My Thoughts > “…wishing I could fix him.”
Please, please… stay on this page. The word “fix” is offensive to many… but it is not an uncommon ‘first responder’ reaction. Especially for parents who are blessed with high ‘problem solving’ skills. They soon discover that they cannot ‘fix’ what they cannot see nor understand.Thus the long pursuit for understanding begins. Perhaps rather than hearing the words “fix” they would prefer to hear the words…“curative difference”.
5% You can make a curative difference and yes it’s hard but it’s also fun. It does however take loads of time and effort. And that’s why I’ve called this book ‘Miracles Are Made’ because in fact they are.
That’s what makes neurofeedback so great. Though you still do the work and make the miracles yourself, neurofeedback makes it quicker, which makes it possible to move farther or move on to a new kind of fun.
< My Thoughts > “…neurofeedback makes achieving goals much quicker…”
Those in the field agree. Steiner, et al. (2014) say it takes reaching a point of careful concentration in order to become successful at following directions, achieving progress and reaching goals. “The system that monitors theta and beta brainwaves and recalibrates every few seconds in order to challenge the student to progress on the cognitive exercises…” increases learning at a faster pace.
5% Personally, I raised most of my kids the old-fashioned way, feedback from my own frantic desires. I used words, rewards, and punishments with a lot of natural consequences thrown in because autistic children learn more through experience than verbal or visual teaching. I also used natural consequences as much as possible because I didn’t always want to be the ‘enforcer’.
But, I needed a better way… something that could take them farther, faster. The something I found was neurofeedback. At this point all of my children were adults and I’d been a parent for twenty-nine years. According to the present-day beliefs about autism, it was too late to help them. I tried anyway.
< My Thoughts > “…too late to help them.”
Information from: http://www.centerforbrain.com/neurofeedback/frequently-asked-question/; retrieved on 1/12/2017, claims – “Neurofeedback takes advantage of the brain’s amazing ability to change itself.”
“Research has shown that throughout life the brain continues to adapt and adjust as it confronts new experiences, fresh knowledge and varying sensory input. The result is that with life experience, different neurons fire, synapses grow, and the brain remaps itself. Over time neurofeedback helps create different patterns and structures which are more conducive to contentment and a peaceful mind. With practice and training, these patterns can produce a new way of life. This capacity for change continues well into old age.”
8% I did it myself, with the help of others who were willing to see me as the expert in my child’s development, and so can you.
< My Thoughts > “I did it myself…”
Nuernberger, et al. (2012), talk about the advantage of implementing programs in the natural environment.
9% Dar was labeled PDD (Pervasive Developmental Disorder). At four years of age, Dar’s IQ was placed a nine-month-old level leaving him in the extremely retarded range. I began to read about autism at the same time that I applied to adopt him.
=========================
< My Thoughts > “…labeled PDD…”
CORRECTION: Author Lynette Louise very graciously shared this with me…
“I think it would be more accurate to mention that the definition being shared about PDD-NOS is 'present day'. Back when Dar was diagnosed it was completely different. So different, in fact, that it's more honest and more useful if... 'presently' or 'we now know' or something similar is added. That might be more honest and more useful."
Thank you to Lynette Louise for bringing this to my attention. I truly appreciate it because I wish to be as accurate as possible with my information.
Regards, Sara Luker
=========================
< My Thoughts > “…labeled PDD…”
The 'current thoughts' about children and adults with PDD seem to be that they have ‘delays’ inconsistent with their chronological age. Some consider PDD a sub-domain of autism, while others believe it’s a ‘stand-alone’ condition. Either way, when PDD has ‘NOS’ added to it (Not Otherwise Specified), it becomes a ‘catch-all’ condition. Formerly considered a possible ‘anxiety disorder’ for irritable and disruptive children.
PDD-NOS children often go without close monitoring over time, going without a definitive diagnosis. Therefore, there is no funding for them. There is no programming at school because PDD-NOS is not considered a ‘stand-alone’ diagnosis, but instead it is usually shown as co-morbid with Autism Spectrum Disorder (ASD).
By itself, PDD-NOS can cause a child to have a difficult time regulating moods and emotions (becoming worse in adolescence and with increased incidences of depression as the child ages). The child can have social communication problems… often bullied… and having orientation problems with time and place… difficulty with planning and organization… resistance to change… may be considered stubborn & oppositional… may panic when confronted with any of these situations. These conditions are also seen in children with Autism Spectrum Disorder.
Even when the diagnosis becomes PDD-NOS, then many times the children are left without a specific intervention plan, academic goals or expectations. When this happens, the ‘delays’ often become persistent.
11% Slowly, I came to see him as a whole person, who just happened to have dirty blond hair, a flat butt, and autism. I didn’t want to think of him as mindlessly self-abusive, then it happened. I was there. Dar’s new sister (my third-born biological child) grabbed his crayons and offered to color a page for him. He grabbed them back and, as I walked by, he said, “I can do it” with perfect enunciation. Dar immediately reverted to looking at the ceiling while rocking his head side to side. The therapists and teachers didn’t believe that story. But I did, because I was there.
< My Thoughts > “…he said, “I can do it” with perfect enunciation.”
Padawer (2014), “Scientists suspect that what is called autism may actually be an array of distinct conditions that have different genetic and environmental etiologies but happen to produce similar symptoms. If true, it could help explain why some children progress so much differently, while others don’t progress at all.”
11% The more I diverged from listening to others and trusting what I knew to be true, the more I was able to embrace my son. The more I embraced him, the more I observed him. The more I observed him, the easier it was to understand him. The easier it was to understand him, the easier it was to understand his brain.
Those lightning-quick occasions of never-to-be-repeated, perfectly enunciated and absolutely appropriate spontaneous words were not lies; they were clues to the mystery that is autism.
< My Thoughts > “Those lightning-quick occasions of never-to-be-repeated…”
What happens once may never happen again. That ‘one time’ the child is able to, for whatever reason, get everything lined up perfectly in his head and out it comes, the appropriate word or phrase. I’ve seen it in the classroom when that ‘one time’, students are able to get it together to work a puzzle, dress themselves, or bounce a ball. These moments are also the reason why misguided observers may conclude that the child is just ‘lazy’ or ‘unmotivated’, when these skills cannot be repeated. Ugh!!!
11% I began to get a glimmer of what lay ahead. It was a path I resisted. I didn’t want every aspect of Dar’s learning to be up to me. I just wanted to be his mom. However, as I was quick to discover, having every aspect be up to me is what it is to be the mom of a special-needs child.
12% Once I took on the role of Sherlock Holmes examining things without panic or judgment, Dar’s sudden moments of verbal clarity and the constant focus on his wiggling finger didn’t seem so mysterious. These things made sense. I found the answer because I didn’t judge the answer as a problem: We were bombarding his system with noisy confusion. He was trying to keep things, like us, in his peripheries where we were non-threatening by focusing on his fingers and pushing us into the background. This way he could spontaneously be happy. Unfortunately, it also prevented him from learning how to interact.
< My Thoughts > Sensory problems, due to an overactive brain.
The brain can reach overload, while trying to seek balance. In an article by Temple Grandin, American professor of animal science and world-renowned autism spokesperson, tells us this about sensory problems due to an over active brain. “When a child tries to concentrate… he or she is bombarded with noises that blast through their brain like a jet engine.”
“A vacuum cleaner may cause fear in one autistic child and may be a pleasurable fixation to another child. I get the same pleasurable feeling that used to occur when I engaged in rocking or other stereotypical autistic behaviors.” Retrieved 12/30/16 from the following website - https://www.autism.com/advocacy_grandin_visual%20thinking
12% I believed understanding Dar was the key to figuring out how to teach him. That’s when I decided to figure this disorder out, change the course of my own children’s lives, and share the magic with whoever else wished to know what I had learned.
14% Brain disorders always present as clusters of symptoms rather than just one singular problem. For example, a child with autism may have sleep issues, depression, or sensory-seeking behavior that is only satisfied by great big deep pressure hugs, and tics, while another with the same disorder may have outbursts, periods of despondency, contact avoidance, seizures, and self-abusive behavior.
Thus it is true to say that ‘autism’ is a group of symptoms rather than a particular thing. And that these symptoms, these clusters, are connected and reinforced by each other so as you heal one you affect the others: While you heal the autism you smooth out all the behaviors created by the sub-disorders contained within it.
< My Thoughts > “…connected and reinforced by each other so as you heal…”
“The goal of neurofeedback is for the patients to come to recognize the onset of electrical negativity and then to push in a positive direction. Attention Deficit Hyperactivity Disorder (ADHD) subjects train their brains to produce fewer theta waves and thereby more beta waves.” They also learn how to sustain pleasant feelings longer. Ulrich, K. (2006).
14% I credit neurofeedback with doing amazing things for my family and for everyone I work with, it is not as if you need a neurofeedback system to give feedback to your children’s brains. That’s what you do every time you express praise or disappointment.
< My Thoughts > “…every time you express praise or disappointment.”
Those praise and disappointment clues may even be color-coded. Some experts say that praise and disappointment may put energy clues in the environment.
People with autism pick up on color change, as a part of their ‘viewing patterns’. When an enhanced sensory processing gene occurs in the population, we call the phenomenon ‘synesthesia’.
Brang & Ramachandran (2011) tell us that ‘synesthesia’ has been of interest to scientists for nearly 200 years, and while familial linkage analyses show a strong genetic component, the precise genes involved and reasons why synesthesia has been conserved in the population remain unsolved mysteries.
Our kids respond to their environment and to the people in it; usually sensing it through the window of their ‘anxiety’. Nuances such as detecting changes in the energy fields of the people around them. For example, a person is saying one thing, in a pleasant tone, when beginning an activity. But our color-sensitive children say that the person changes color as their patience runs out. For example, a teacher is teaching a skill and her ‘color’ is green (a-good-color) to begin with.Then, as she meets resistance, she becomes less patient with the child and her ‘color’ changes to brown (a-not-so-good-color).
14% Feedback itself is built into our very reality. Things like temperature, digestive comfort, and fabric texture are all forms of feedback.
Dar was a smelly, scary mess of a man. That is, until neurofeedback. After that, we could actually watch him learn to calm himself and communicate. The whole thing was happily surprising. Why had I been able to teach some of my children to perceivably change but not all? And what made neurofeedback strong enough to help even an adult? Why was it not limited to the under five-year-old child?
< My Thoughts > …learned to “calm himself and communicate.”
Weinstein, et al. (2011) ask – “Does neurofeedback help them reduce anxiety which helps with self-regulation and enhance learning strategies? May also be able to decrease self-injurious behavior because that seems to be associated with irritability, which may be reduced with this therapy. Self-regulation is both the glue and the engine that helps students manage their strategic learning on both a global and real-time levels. On the real-time level, self-regulation helps to reduce anxiety, focus attention, and monitor learning success.”
It seems that through successful neurofeedback therapy a person becomes more self-regulated, i.e. more balanced, more focused and therefore has less problems with learning and sensory issues.
14% I was so curious to find the answers. I knew neurofeedback must have its limitations, but since it could be applied to all kinds of disorders I didn’t know what they were. I decided to find out. After all what better test of a therapy than my own diverse family with it’s very damaged Dar?
15% If you feel more regulated, more balanced, more comfortable in your body, it’s easier to learn. Changes in your brain lead to changes in how you experience your body, your ability to attend, and your desire to become more than what you already are.
< My Thoughts > (Me… is there even an awareness of that need?)
Changes in your brain lead to changes in everything the body interprets. Wigham, et al. (2015) tell us that “… low neurological threshold characteristics of poor registration and sensation seeking” can result in sensory processing interruptions. The brain may misinterpret signals or sensations, therefore placing the person in an anxious state.
16% Neurofeedback changes brains.
< My Thoughts > “Neurofeedback changes brains.”
By studying the circuitry of the brain develops, future scientists hope to identify when and for what reasons develop goes off track. Changing balance in the brain might provide clues to an appetite for novelty and a disregard for risk.
16% Neurofeedback has the ability to teach us how to tune up and rebuild our own motherboard to a degree and at a level that was previously unheard of.
The first difference is that neurofeedback is never judgmental, thus it is never overwhelmed by the job ahead. The second difference is neurofeedback’s site-specific speed of delivery to individual neurons. What does this mean and how does being site specific create an advantage over behavioral cues and biomedical interventions?
< My Thoughts > if it means more focus with less frustration, then that’s a good thing. Right?
22% After five days of neurofeedback Dar began moving his tongue to form new sounds – happy sounds – no cries of numbness or headache pain. He stopped punching himself in the face. His shifts in state were mostly subtle but – there were all these little things – like him pointing excitedly to the food in the fridge. Pointing – I’d been trying to teach that since he was four – he’d finally gotten it. He pointed with his whole hand. It was so cute. Dar was 23 when he learned to point.
< My Thoughts > Achieving balance through neurofeedback?
“The brain is responsible for controlling impulses and planning ahead – the hallmark of adult behavior, but the last to mature. The volume of gray matter seen in brain images, shows that the brain does not begin to resemble that on an adult until the early 20’s.”
“The brain, it is said, is largely wired for social interaction, to insure the continuance of the species. If something goes wrong with the hardwiring, due to genetics or environment then, one may lose a sense of who they are.” Retrieved from – The Teen Brain Under Construction, www.nimh.nih.gov, on 12/10/2016.
Sonny was 13 years old before the many years of toilet training finally kicked in and he could go around diaper-free! So Dar not pointing until he was 23 is not that surprising to me. Also, there is a ‘thing’ about pointer fingers and children with ASD. We found that Sonny will only tolerate the finger meter on his middle finger. (That finger pulse oximeter that they put on your index finger in the doctor’s office to measure your oxygen level.) In the classroom I never insisted that students point to choices with their pointer finger, because it was too anxiety producing. It’s like the ‘eye contact’ aversion… why spend time sweating the small stuff. Hmmmm?
22% Two years after starting neurofeedback, despite the boundless professionals who insisted he couldn’t learn to talk at such a late age, 25-year-old Dar spoke well enough to be understood by some of the neighbors and even the occasional waitress. Best of all, though he occasionally takes rests in his progression of learning, he has never ever again regressed away from what he knows.
< My Thoughts > “Two years after starting (reward-seeking) neurofeedback...”
“If you’re someone who focuses on learning and memory, as we do in our lab, we think of reward-seeking as necessary to shaping behavior,” Becker (2016).
Adolescent learning is different than adult learning because there is more emphasis on pleasure-seeking purpose to learning an activity. The ole ‘what’s in it for me?’ That may be why teachers find that some lesson plans fall flat. The students doesn’t relate to… “You are going to need this information for future learning.” Nor do they respond to what has happened in the past. They are mostly looking for the ‘reward of the moment.’
25% I remember driving home from my fourth session and Dar’s twelfth session of neurofeedback. It occurred to me that the war against the pain of autism was over – I’d found the key – to my children’s brains and mine. I was filled with awe.
I turned to my son and said, “Dar it gets to be easy.” I thought a moment and said, “Now all I have to do is learn neuroanatomy”. Dar took my hand, smiled, and said “yef.” That “yef” was a big deal at the time.
< My Thoughts > Sonny rubbing my arm… “That was a big deal at the time.”
When Sonny was 9 or 10 years old, he had a lot of anxiety issues and I found that if I rubbed the inside of his arm to soothe him, he calmed down. As a child, it was what my Nana used to do to keep my asthma attacks from becoming panic attacks.
One afternoon, we were in an unfamiliar part of town and I was looking for an address because Sonny had an appointment there. We were running late and people were cutting me off, driving around me, and generally making me crazy.
I was yelling… “Give me a break!” or something close to that… and I could feel my blood pressure rising. Suddenly, Sonny reached over and started rubbing my arm. Wow! And they say that kids with ASD don’t show empathy or try to comfort others… “That was a big deal at the time.” A huge deal! Of course, he’s never offered that again. But it was our unforgettable moment. Smiles.
88% Which behavioral approach do I use? I use them all. I can’t stress enough the importance of designing a program based on the needs of the entire family. Some parents gravitate better to task-oriented learning for their children while others want to hug them to health. A mixture of everything that is available based on the learning styles, energy, and financial options of the entire group is the most likely to meet with success.
Generally, I use neurofeedback, family education about brain functioning and how that impacts the emotions and behaviors of the group, and basic parenting skills as the foundation of a program for my clients. I know this is kind of a non-answer answer; but truly, following the family – even if it’s yours – is the only way to approach such a monumental task with any hope for success.
=========
References given in < My Thoughts > by Sara Luker:
Becker, R. (2016).The Brain Process That Makes Teens Misbehave Might Also Help Them Learn.
http://www.theverge.com/2016/10/7/13204850/teen-learning-rewards-drugs-video-games-neuroscience
Brang, D. & Ramachandran, V. (2011). Why Do People Hear Colors & Taste Words? PLoS Biology; Vol. 9:11, p1-6.
Friedrich, E., Sivanathan, A., Lim, T. Suttie, N., Louchart, S. Pillen, S., Pineda, J. (2015). Applied Psychophysiology & Biofeedback; Journal of Autism & Developmental Disorders; Vol.45:12; p 4084-4100.
Grandin, Temple (2017). My experiences with Visual Thinking Sensory Problems and Communication Difficulties; Retrieved from –
https://www.autism.com/advocacy_grandin_visual%20thinking , in January, 2017.
Nuernberger, J., Vargo, K., Ringdahl, J. (2013). An Application of Differential Reinforcement of Other Behavior and Self-Monitoring to Address Repetitive Behavior; Journal of Developmental & Physical Disabilities; Vol.25, p. 105-117.
Padawer, R. (2014). The Kids Who Beat Autism. Retrieved from –
https://www.nytimes.com/2014/08/03/magazine/the-kids-who-beat-autism.html?_r=0
Sokhadze, E., El-Baz, A. Tasman, A. Sears, L., Wang, Y. Lamina, E., Casanova, M. (2014). Neuromodulation Integrating rTMS & Neurofeedback for the Treatment of Autism Spectrum Disorder: An Exploratory Study; Applied Psychophysiology & Biofeedback; Vol. 39:3/4, p237-257
Steiner, N., Frenette, E., Hynes, C., Pisarik, E., Tomasetti, K., Perrin, E., Rene, K. (2014). A Pilot Feasibility Study of Neurofeedback for Children with Autism; Applied Psychophysiology & Biofeedback; Vol.39; p. 99-107.
Sterman, M., Egner, T. (2006). Foundation & Practice of Neurofeedback for the Treatment of Epilepsy; Applied Psychophysiology & Biofeedback; Vol. 31:1,p. 21.
Ulrich, K. (2006). Train Your Brain; Scientific American, Feb/Mar 2006; Vol 17:1, p. 58-63.
Weinstein, C., Acee, T. and Jung, J. (2011). Self-regulation & Learning Strategies; Published by Wiley Online Library (wileyonlinelibrary.com).
Wigham, S., Rodgers, J., South, M., McConachie, H., Freeston, M. (2015). The interplay Between Sensory Processing Abnormalities, Intolerance of Uncertainty, Anxiety & Restricted & Repetitive Behaviors in Autism Spectrum Disorder; Journal of Autism & Developmental Disorders; Vol.45:4; p943-952.
