About a month ago, I pried myself away from my kids on a Saturday morning to attend a Gluten Free Expo about an hour away. I was a little disappointed at first – it seemed like everyone there was trying to offer the best chocolate chip cookie, but not much else. After awhile I reconciled myself to the fact that many people want gluten alternatives, but they are not necessarily interested in making other changes to their diet. I found that really hard to relate to, since my own personal gluten-free journey was triggered by health issues that necessitated a lower-carbohydrate diet, not just the elimination of gluten.
Towards the end of my walk through the Expo, I came across a series of bio-medical services, information about a local conference on autism, a few cute kids’ books, and a center called Brain Balance. I was a little saturated at that point, but it seemed worth further consideration, so I took a brochure. Later, in reviewing all the materials and talking with my partner, we became intrigued enough to schedule an initial evaluation for our son.
The testing at the center involves a wide range of activities – everything from responsiveness to computer-based stimuli, physical activities, and smelling! We filled out mounds and mounds of subjective tests to supplement what they were learning about our son in the lab setting. One of the main outcomes was to ensure that our understanding of him is consistent with what the test results show – which it is. So there were no major hurdles to overcome in order to get us on board with the challenges he’s facing. As part of that initial visit we also received a copy of the book called Disconnected Kids, written by the doctor who invented the program, Dr. Robert Melillo. I committed to read the book before we went back for the test results a week later, and the material was really compelling.
One of my favorite passages in the book was one about Albert Einstein’s learning disabilities. Apparently he didn’t speak until the age of seven, and he wasn’t able to get into graduate school so he got a job in the Swiss Patent Office. Six years later he published his first draft of his Theory of Relativity.
When Einstein’s brain was examined after he died in 1955, it appeared basically the same as everyone else’s. It was roughly the same size and shape as most brains and had the average number of brain cells. One scientist, however, discovered something uniquely different about Einstein’s brain: It possessed en enormous number of connections, or synapses, between brain cells. … Einstein was passionate about music and played the piano and violin regularly. When he was stuck on a mathematical problem, he once explained, he would sit down and play music and envision his problem until the mathematical equation came to him. Put another way, listening to music (the sense of hearing) stimulated playing an instrument (physical activity), which is a right brain activity, and concentration on the equation (mental activity), which is a left brain activity. Doing so on a regular basis no only strengthened the electrical connections (communication) between the cells of the oft and right hemispheres of Einstein’s brain, but also cause new connections to grow. Combined, they increased his brainpower. He became genius. (Robert Melillo, Disconnected Kids, page 22)
The basic argument is that there is an explosion of childhood neurological disorders today, and that we continue to diagnosis them much as we did in the 1950s. Furthermore, our understanding of the brain has evolved so much, and yet the treatment programs remain basically unchanged. For example, the cerebellum refines the movements and thoughts that come from the executive center of the brain. And there is a 13-17% size difference (delayed maturation) for kids with neuro-developmental delays. What have we done to act upon that knowledge? Nothing – or not enough! Furthermore, the kinds of services available to our son through his IEP (Individualized Education Plan) at school are accommodations. That is, they will provide him with the best possible conditions for academic success – but as long as he is doing well academically (he is!) the services have accomplished their goal.
Dr. Melillo argues that Tourette’s Syndrom, dyslexia, ADHD, autism spectrum disorders and others share common characteristics. This is consistent with how Oliver Marks describes these conditions in his essay An Anthropologist on Mars (written about Temple Grandin). Another thing that my partner found particularly compelling is that a diagnosis of PDD-NOS (Pervasive Development Delays – Not Otherwise Specified) could manifest as Aspberger Syndrome or ADHD later in life. So the symptoms may vary, but the root cause is the same; the right and the left hemispheres of the brain are not in sync. It is a timing issue, and the issues that manifest in these kids are about the dependence and interdependence of the senses. He will never be able to fully adapt (exhibit appropriate behavior) if one part of his brain is overactive and another part is under-active. Dr. Melillo coined the term Functional Disconnection Syndrome (FDS) to describe this condition, and he argues that if we first focus on addressing the underlying problem (and not the resulting behavior) we can actually substantially improve the brain function (and ultimately the behavior and the lives) of these kids.
Although the test results for our son were quite interesting to us, I don’t want to share them here – though I’d be happy to share them individually with interested parents I know whose children might benefit. Suffice it to say that all the results deeply reflected what we knew about our son, but provided us with a completely different lens through which to understand him. For kids on the autism spectrum, one of the things that characterizes them is that they are very smart, and they are perceived as having no social skills. In FDS terms, the left brain (intellect, problem solving … but also perseveration, rigidity, difficulty seeing others’ perspective) is operating at age 7, and the right brain (emotion, behavioral control, integrative thinking) is operating at age 3 or 4. In super simplified terms, the left side says GO and the right side says STOP. So, the way the doctor at the center explained it to us, imagine there are two giant gears (left and right hemispheres of the brain) rotating next to each other. The left brain experiences something (my brother took my toy!) and the right brain reacts (whack!) before the clutch actually kicks in to connect the two hemispheres and enable him to choose STOP. So, our oldest is remorseful (because eventually the two halves do connect), but his self-esteem continues to be diminished by time-outs for behavior that he can’t – literally can’t – control because of the disconnect between the two halves of his brain. As a result of this loop, the world is basically an insecure place for our son – so he is anxious (always in fight or flight). That is also why he is rigid and craves predictability.
The goal of the Brain Balance program is to develop a plan that will build up his ability to shift gears in a timely way that enables him to exhibit socially appropriate behavior.
Other things in the test results that resonated for us were around his spatial awareness. In some areas he is still operating at the level of a toddler. For example, if you spin him around rapidly in a desk chair, he loses his awareness of his center or core, and he ends up slumped to one side. In addition, we experience him as either sedentary or hyperactive. His gross motor skills seem ok to us, but part of the reason for the crazy movements he makes sometimes is that he is struggling with locating own body in space. The way the doctor at the center explained it to us is that when you’re riding a bike, if you pedal fast enough you stay up. That is one of the reasons why he exhibits the hyperactive moments.
One of the many interesting things in the book is that our nutrition and screen-focused lifestyle has exacerbated these childhood disorders. Gravity enables us to get a sense of one’s own body in space – it is hugely important! Basically, if we don’t move, our brain can’t learn.
We have also experienced that our son is extremely sensitivity to noise, but lack of response to smells (in spite of his sniffer testing just fine). One of the other areas is OPK (optikenetic). There is no problem with his eye muscle movement, but because the timing between the two hemispheres of his brain is off, his sense of timing is off. Inattention and impulsivity are symptoms of this optikenetic disconnect. In other words, the individual sensing instruments (eyes, nose) work fine, but they don’t work together holistically.
The kicker – besides the fact that he could not even do Dance, Dance Revolution at this point – is that until he has appropriate brain-body connection for himself, he will not ever have it with others. In other words, his ability to develop the appropriate social and emotional behaviors depend on addressing the underlying imbalance between the two hemispheres of the brain. Along those lines, the doctor who explained the test results to us also recommended the work of Daniel Seigel, who is neuro-pyschiatrist that focuses on interpersonal neurobiology.
The program also includes a nutritional evaluation for leaky gut and/or allergens in the diet. We’re looking forward to learning what else we can do from a dietary perspective.
So … what’s not to love, right?! Well, the initial testing is a few hundred dollars, but the program itself is $5000 for twelve weeks, and they believe he’ll need to go through the program more than once. That’s $20K a year … for an after school program! The other real kicker is that Dr. Melillo is a chiropractor, dammit. In his initial book he looked at over 3500 medical articles in fields like neuroscience which inform our understanding of the brain and how it develops. Through that research he developed this practical program. That said, I remember learning about Thomas Kuhn‘s The Structure of Scientific Revolutions in graduate school. He basically argues that scientific disciplines get stuck in ways of looking at and solving problems, and that there are then paradigm-shifting moments that often come from outside those specializations. I firmly believe this (it’s part of the reason we put our son on a gluten-free casein-free diet long before it was recommended by any doctors) because parents of kids on the spectrum found that it worked, wrote about it, and finally pressured the medical establishment into proving that yes, in fact, kids on the spectrum do have a higher rate of leaky gut and other things that make them especially sensitive to certain foods. So … he’s a chiropractor. Whatever. If the program works, who cares? He seems to be keeping good company with the brightest minds in the field of neurological research (Daniel Goleman, the author of Emotional Intelligence, for example), so that should speak for itself. Right? Right.
I think the other thing that we really struggle with now is hope. Seriously. I know that sounds crazy, but our life has already changed in quiet but amazing ways with the dietary changes we’ve made. What if we can expect more? What if we are able to stop focusing on behavior modification (which is completely discouraging and exhausting for all of us) and address the functional disconnect underlying this behavior? It’s exciting and terrifying, but we feel as though we have to try and give our son every possible opportunity to be his best self. So we’ll keep you posted …