Research and Updates

“It takes a village to raise a child. It takes a child with autism to raise the consciousness of the village.” – Coach Elaine Hall

This blog went a direction I never thought it would go when I first wrote about my sons, Micah and Ryan, and their beginning of Brain Balance. Since I posted “It’s a Whole New Game” I have been knee deep in research about autism and Attention Deficit Hyperactivity Disorder (ADHD) and Functional Disconnection Syndrome.

I had done some inquiries prior to my two sons beginning Brain Balance. Mostly I had investigated autism. When we originally had Micah tested a few years ago they said he wasn’t on the autism spectrum, but no one was really concrete in telling us what he was.

Since the first evaluation back in March, which diagnosed both at the mentality of 3-year olds, I have delved into information, theories, and studies to read. When I am not at work, playing the boys, helping them with their exercises, running with Ryan or doing other activities I have spent every other waking moment looking into both categories.

It is almost impossible to decipher all of it. Some of the studies are sound and based on scientific methods. Still others I have read it seems they have done nothing more than thrown a bunch of spit balls at a wall and went with whatever stuck as their theories.

Of all the assumptions out there by doctors and scientists when it comes to Ryan’s autism, you can firmly put me in the “it’s hereditary” camp. I believe I lived it first hand with my father. There are times when Ryan does things around me that are exactly what my father did.

I remember too vividly how my father was. Everything had a certain way it had to be done. When he worked he had a set schedule which had to be maintained almost to the second. He was thrown off at times if he was off schedule. His ability with numbers, especially with money, was uncanny. He could break things down to the penny and when he went to buy something he had the salesman’s head spinning as my Dad explained how he came up with the price he wanted to buy a product. It was even eerier with his numbers and the stock market.

I’m pinning my Dad more of the stereotypical way people view those with autism like he was savant-like Charlie Babbit, but I believe he had a lot of characteristics of an autistic person. My Dad was helped a lot by the fact his Mother was a second-grade-school teacher. Prior to him going to school, I am sure my grandmother worked with him before he entered a classroom. I know because a lot of the exercises Ryan and Micah are doing at Brain Balance are similar to the ones Blanche did with me when I would go to her house. I am not sure if Dad would have been as much like Ryan is or now was, but I do believe he was on the spectrum. It was diminished though by the help he received from his Mother in his early years before going to school.

I am sure growing up a lot of my friends could think back and see some tendencies I had or still have as registering on the spectrum.

Through my research here is one of the biggest myths which needs to be debunked – Autism is not new. It’s not this sudden epidemic which has escalated over the last 25 years. Matter of fact, it’s been around for some time. It was first described by a scientist named Leo Kranner in 1943. The earliest recorded descriptions of people exhibiting autistic behavior were even documented as early as 1799.

Which brings me to my other point as to why I am in the “it’s hereditary” camp. After my Mother died in 2007 my Dad and I got closer. He truly became my best friend. On Thursday night’s after I got done officiating basketball games at my church I would go over to his house and we would have pizza and ice cream and watch male soap opera (professional wrestling) or play snooker.

One night, while we were talking my Dad, mentioned his Aunt Lucile – my grandmother’s sister. Dad said he didn’t really know her well, but she lived in a home for people with mental deficiencies in Madison, Indiana. He talked about how she acted a lot like Ryan did when he was younger with his meltdowns. According to Dad, my grandmother said they were bad enough finally their parents did not know what to do for Aunt Lucile. They felt it best to send her to the home to see if that would help. Lucile spent most of her life in the home before passing away.

Listening to my Dad I got the sense Lucile and Ryan were similar. I could only think as I drove home my great aunt also had autism, but it was such an unknown disorder in her generation no one knew exactly what caused her cerebral weaknesses.

As for Micah’s ADHD, I cannot pinpoint where to say if it was the stresses Wendy went through during the pregnancy or if it was genetic. Actually Brain Balance refers to it more as Functional Disconnection Syndrome. This means that one of the sides of the brains didn’t develop as it should. In Micah’s case, his right side is slower than his left.

I hope to go through Brain Balance will be able to get a further understanding of what possibly caused his defects. Micah also is deficient in hearing as he can’t hear high pitched noises as some children can at his age. When he was first evaluated he was close to his grade level in several subjects, but the tests showed where he could improve through the help of the program.

Since the first report at the end of last month, Micah has moved up another year to 5 ½. Visually he continues to struggle with eye movement and reflexes. His auditory processing with the ability to process the spoken has only moved up a point since the original evaluation. His rhythm and timing also continue to lag behind. Micah has seen huge strides in his core stimulation. He is showing strengths in writing letters and numbers and also comprehension tasks. He still has trouble focusing and trying when challenged especially with reading. Micah continues to fight us when it comes time to the home exercises and wants to get them done as quickly as possible. We continue to work to make sure he does them properly by taking his time.

Ryan has almost approached 7 and continues to impress people with how much he has already changed as he is more talkative with others. We have had a few “moments of clarity” when he has been with others and they have noted how much a pleasure it has been to actually have a conversation with him. Like his younger brother, Ryan still needs to work more on his eye movement and reflexes. The running with me in the mornings has helped as his gait and aerobic and interactive metronome have both moved up significantly since March. He has really improved staying on task and focusing. He struggles somewhat with comprehension especially with story problems in math. Ryan is fine in the mornings when we do the first set of exercises immediately after our run. The next two sets though can be a challenge if we interrupt him from playing with his brothers or his Beyblades.

  • As for the rest of the family – we continue to get adjusted to the foods and not having the ones we used to eat on a regular basis. We have cheated a couple of times – we are allowed two cheat meals a month according to the program. Wendy’s found a good gluten-free-pizza crust and her pizzas continue to get better every Friday. It was funny Dominos called one Friday night and asked if they did something wrong the last time we ordered.
  • Thursdays are tough though – not because I miss hanging out with my Dad (I still do) but because I really miss our DQ Blizzard outings, but strawberry-banana-peanut-butter with soy-free chocolate chips smoothies have become a nice substitute.
  • Ryan and I have ran around 20 miles a week for about a month now. Our first race is a week from Saturday with the Race Away Domestic Violence 5k at Victory Field in Indianapolis. We have been working this week on getting him to begin his kick earlier at the end of our runs.
  • We ran Memorial Day for the “Wear Blue to Remember” program. We ran 4.16 miles in honor of Army Major Rocco M. Barnes. Found out Major Barnes was an executive with a film company in Hollywood and also at one time was a bodyguard for Arnold Schwarzenegger.
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One thought on “Research and Updates

  1. thanks for sharing the journey with us Rob. Love your boys and am so glad that they have found something that works for them. I know it’s a lot of work and that you and Wendy are doing an amazing job keeping up with it all!! Praying for continued positive results!

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