Finding Hope Through Neuroptimal Neurofeedback

Years ago, I used this blog as a way to document our family's progress through a brain program for our second son.  Our family has had a recent experience in brain training and growth that I keep feeling I need to share.  When trying to find an appropriate platform to share our recent experiences, I was reminded of this old blog that has stood dormant for many years.  It seemed appropriate as we are still on a journey of brain growth and continue to find ourselves on a "trek down the road less traveled."

Last fall, our oldest son was struggling quite a bit.  For a couple of years, we have been adjusting to life with a teenager and hoped part of our struggles was that transition.  However, this summer, the struggles we were dealing with escalated to the point we could no longer ignore them.  How can we help this child?  What is going on with him?  We sought answers, but did not find them.  It could be this or this diagnosis, but we were never given a definitive answer.  Extreme depression, impulse control issues, explosive violent episodes, trouble sleeping, difficulty dealing with intense emotions...

It got to the point that we had very few options available to us.  Do we seek out a treatment facility?  Medication?  Medication for what?  We didn't have a specific diagnosis for him.  Ugh!  Counseling.  We were told to go to counseling.  We did.  But it didn't help very much.  He would leave a session with the counselor and all of us feeling extremely optimistic and happy, and an hour later, snap, lose control and become violent for something as simple as being sent to his bedroom.  Snapping became more and more frequent and intense until it got to the point that the rest of the family was not safe during that period of time.  (Snapping is the term I have started using to describe losing his mind...basically reverting to survival, animal brain, fight or flight type of behavior and temporarily losing all higher-level cognitive ability).

It was a mother's worst nightmare.  The mother bear in me had a need to protect my younger children.  And yet I could not make sense of it.  I was protecting them from their own brother.

I sobbed.

He's my son too.  How do we keep all of them safe?  And happy?  And functioning?  How do we protect all four of our children?  

We were faced with potentially splitting up our family to keep our younger children safe and find help for our older son, not knowing if he would need to live somewhere else with my husband or in a treatment facility for troubled youth.

A coworker of my husband's mentioned she had heard good things about neurofeedback and maybe we should look into that.  I began researching neurofeedback and found myself immersed in information.  I spent days reading, researching, pondering and praying.

There are two types of neurofeedback.  One is linear and one is dynamic.  With the linear approach, a brain map is needed with a specialist to read the brain map and create a treatment plan to change the brain.  It is expensive and can have negative side effects if not done under the care of a very well trained brain map specialist reviewing and adjusting things from time to time.  The dynamic approach didn't use a brain map.  The technology provided a real time EEG reading to give a picture of what the brain was doing in that moment.  That real time reading serves as a mirror to show the brain what is happening, and allows the brain to correct itself based on that feedback.  It doesn't put anything INTO the brain.  Rather, it gives the brain a picture of what is actually happening and allows the Central Nervous System to make corrections to optimize itself.  After days of research and figuring out finances, we decided to rent a system with a dynamic neurofeedback approach called Neuroptimal.  Rather than having one child complete neurofeedback, we would train as a family.  Training is 33 minutes listening to music and watching a screen of geometric shapes and changing colors (like a screen saver that is constantly moving and changing in a calming sort of way).  Brief pauses in the music (that sound kind of like static) occur that alert your brain it has shifted and give it a chance to return to the present moment.  (There is a ton of information available about Neuroptimal, but I will save giving more details for another post since it can get long and others are definitely more eloquent and experienced at explaining it than I am).

Our Neuroptimal system arrived in the evening on November 3, 2019.  Our journey had begun.  We had committed to rent the machine for a month, but planned on renewing our rental contract for a second month if we liked it and were seeing results.

The first night, our oldest son fell asleep while training.  I was SHOCKED!  This kid has struggled to sleep since he was a toddler.  My other kids reported feeling calm and relaxed while training.  I felt the same way.  Calm and more tired.  My youngest, who is 6, was convinced his brain was creating the shapes and colors on the screen he was watching (that's not how it works, but we decided to let him believe he had super powers to keep his interest high).  The first week was rough.  Ups and downs as the brain was alerted to what was actually taking place.  One night, our oldest fell asleep while training.  He's a very deep sleeper and we are used to him waking up disoriented if we have to wake him up for any reason.  When I took the sensors off, he woke up and I tried to guide him downstairs to his bedroom knowing he was asleep.  He got extremely violent and started screaming and trying to punch the wall.  It was almost like he was sleep fighting rather than sleep walking.  It took two of us to help him down the stairs and into bed safely.  In the morning, he came upstairs still upset but his demeanor had changed a bit.  He seemed more sad and somber.

"Mom, I was so mad at you guys last night.  I was SO ANGRY!!  I hated you!  But I don't know why.  You didn't do anything to me.  Something is wrong with my brain.  I think my brain is broken."

I started crying and hugged him.

"I know, baby.  That's why we're doing neurofeedback right now.  It's going to be okay."

That was the first time he had ever remembered being angry when he was asleep.  It was also the first time he acknowledged feeling angry for no reason at all.  It was a really big moment for us.

Within a couple of weeks, we noticed remarkable shifts in the whole family, but they were extreme in my oldest son.  He was more calm overall.  When he had a privilege taken away (a definite trigger for him in the past) he would get mad, but not snap.  He would go to his room.  He accepted it.  It didn't send him into panic mode and create an intense reaction.  His reactions to life situations became more and more typical.  Teachers noticed at school and commented to him that he seemed happier and calmer.  The school counselor commented as well.  He stepped into leadership roles and started helping his peers.  A close friend and his family commented that he seemed happier.  My son replied simply, "I know.  I am happier.  I feel really good."

When we started training with Neuroptimal, it was the beginning of term 2 at school and he was failing almost every class.  His depression had gotten to the point that he wasn't even trying.  We were dealing with bigger issues than grades or learning so we focused all our attention on finding help for him.  But within a week of starting training, he made a personal goal to get caught up with work he was missing.  He turned things in, made up quizzes and tests, and his grades quickly improved.  By the end of the term, he had a 3.4 GPA and all work turned in a week early.

One day, I walked in and my normally messy, disorganized teenager was folding his laundry and cleaning his room.  Without being asked.  He's capable of doing chores and in our family, each child is expected to complete daily and weekly chores.  But it was always a fight.  His room was messy and disorganized.  Things felt chaotic.  As training continued, his room improved.  It wasn't a full 180 degree turn, but it was noticeable.  Tasks we  had always asked him to do as part of the way we parent and run our home started taking place of his own accord.

He spent a big chunk of time grounded while we figured out how to deal with the extreme behavior we were experiencing.  His privileges were limited to basic needs and that was all he was allowed while we tried to figure out how we could help him.  As brain training continued, he would ask for certain privileges to be restored.  When the answer was no, he usually answered, "Okay.  Do you think I can earn it back in the future?"  I'm not sure I can fully explain how big of a deal that was.  Normally a "no" response would immediately turn into an argument, debate or an attempt to negotiate.  Instead, he was now able to respect boundaries we were giving him, knowing at some point he would earn more and more privileges with better behavior and more trust.

Our family ended up renting a machine for 6 weeks, at which time we took a huge leap of faith and purchased our own Neuroptimal machine to continue training and hopefully be able to help other families with a business of our own.

I wish I could explain the difference this brain training device has made in our lives.  It is literally night and day.  Only those closest to our oldest son truly know the extent of the changes we have seen.  There is no price I could put on the peace I feel at having found something to help him.  Last fall, I was devastated.  I thought I had lost my son.  My heart was grieving.  I was trying to find a way to continue being a mother and protecting my other children while still finding a way to love and parent my oldest.  Today, I have my son back.  My other children have their older brother back.  They have all commented how much they missed him and how happy they are when he plays with them and talks to them again.  He isn't perfect.  He's still a teenage boy who likes to push limits and finds the entire world is a science experiment awaiting his personal testing.  But...he's a much better version of the boy I have always known.  He's calmer.  He's happier.  He's more respectful.  He's better able to regulate strong emotions and self sooth.

He's not the only one who has benefitted.  My 6 year old had two teachers comment on how he is better able to stay engaged during circle and learning time and how they have not had to redirect him nearly as much.  Those comments were unsolicited and came without the teachers knowing we were doing brain training with Neuroptimal at home.  My middle children comment on feeling calmer and more confident.  Emotional moments my daughter has as a tween come and go instead of becoming an all day, emotionally intense event.  Personally, I have seen my depression lift and my anxiety decrease.  My overall ability to handle the waves of life has improved.  In the past, an experience like this would make me feel like I was drowning.  Like I wanted to hide.  Or run away.  Or not get out of bed.  Instead, I am able to take each wave as it comes and navigate it better.  Sometimes I ride the wave.  Sometimes I fall off and have to swim or grab for my board.  But I am no longer drowning despite the intense months of life we have experienced recently.

I have struggled to know how to share our story.  I have a strong desire to protect the privacy of my children.  But I feel a nagging need to bring hope to others who may be experiencing something similar...or completely different.  To families and individuals who may need a light at the end of a very dark tunnel.  These are the real life moments no one likes to talk about or share on their beautifully retouched social media posts.  So I'm taking a leap and sharing just enough to bring knowledge and information to others.

I know it sounds too good to be true.  I'm not sure I would fully believe these kinds of changes were possible if I hadn't experienced it myself.  But I did.  Our family is different.  Things are looking up.  We're more optimistic and have a better ability to deal with the ups and downs of life.  I truly believe Neuroptimal is an incredible neurofeedback machine that can improve the brain.  These improvements may include an increased ability to focus, better sleep, calmer, more relaxed states, an overall happier disposition, increased resilience to life events, and improved performance abilities.

Neuroptimal is the BEST thing that has ever happened for our entire family and I will forever be grateful we found this system and decided to train our brains together!

Loving Preston

This is going to seem like a strange blog post, especially considering the fact that I still haven't posted  our official Brain Balance results even though the boys had their graduation a month ago.  We ended up switching bedrooms around (and consequently moved pretty close to every piece of furniture in the house - no joke) so I've been rather busy actually being a mom.  I also have a super busy toddler that keeps me on my toes 24/7.  And then there's the Brain Balance exercises and diet still, which can be time consuming as well.  I will post their results soon.  I promise!

I feel the need to blog about an experience we had recently.  My boys are somewhat sheltered from the world because of our decision to teach them at home.  They are certainly not removed from reality, but there is a bit of a cushion from the unkindness that children often experience from their peers.

Both our boys are part of a play this summer.  Dylan really enjoys acting and Preston expressed interest so we decided to let both boys participate this year.  Thankfully Dylan is still part of the younger group (elementary kids) and could keep an eye on Preston and help him if need be.  One day, Dylan came back from practice and was really sad.  He told me that during a break Preston was being kind of silly and was playing around with a plastic cup on his head.  Another kid came up behind Dylan, pointed to Preston and said, "Your brother's a retard!"  I asked Dylan what he did. He said, "Nothing mom.  I just got really sad and tears came to my eyes.  I don't know why people are so mean.  He's such a good kid!  He wouldn't hurt anyone ever. And he was just being silly."  As he spoke the words, it felt like a chunk of my heart was literally breaking.  The pit in my stomach was deep and strong.  Years of concerns and fear that have settled quite a bit over time flooded my mind.  It was intense.  Kids say mean things all the time.  They don't know who they are yet and they're trying to figure it out.  Their own insecurities are usually expressed inappropriately.  I get it.  But that specific comment directed at a child who is delayed, has been considered special needs (even though not always obvious) and definitely has a learning disability is extremely painful.  If someone had made the same comment to Dylan, I would feel bad he had had a negative experience with a peer, but that's about the extent of it.

It's resolved.  I spoke to the director and they talked to the boy.  That's not the point of this post, although I so appreciate her willingness to address a negative situation in such an appropriate manner.  Two things I have to mention.  First, Dylan DID NOT REACT!!  If this exact same situation had happened a year ago, Dylan would most likely be the one in trouble because he probably would have punched the kid - or worse.  He's a protective older brother and that's a good thing.  But he's learned to control himself.  Well, his moro reflex is integrated so he's ABLE to control himself better (yay!!  I'll talk more about this later).  He has time to think rather than react and he understand the need to stay calm in less than ideal situations.  Awesome!

Second, this process is hard.  My children have grown and changed in ways I never thought possible, but we haven't fully arrived, especially with Preston.  Having a child with any type of challenge is difficult.  I would imagine for most mothers it is the same.  It breaks our hearts when others tease or taunt or don't understand the uphill battle our children face.  I'm pretty chill most of the time.  I try not to get involved unless it's necessary.  My children are very good at communicating with me and I try to help them think through situations and problem solve on their own.  This particular situation, however, was very difficult for me.  I cried.  I leaned on my husband.  I ached for Preston...and for Dylan.  Dylan's heart hurt too.  He loves his brother in a way few will ever understand.  Thankfully Preston did not hear (nor would he have understood the insult).  Having a child who struggles more than most has made me a more compassionate and understanding person. I will never look upon an individual with any type of challenge without feeling a part of the pain that comes with such struggles.  The empathy I possess has become a gift.  A difficult one to obtain, but it's a gift I was given to help me become my best self.  We're making incredible progress.  But the journey itself is not always easy.  I have to admit that for better or worse, this former tough girl is vulnerable.  A big chunk of my heart remains completely exposed to the big, bad world through the sweetest child I have ever met - my loving, creative, quirky little Preston!

Update on Preston

It's been way too long since I've blogged about the boys and their progress.  Documenting this journey while simultaneously living it is proving a difficult task indeed!  I just had a progress report and Dylan and Preston are both doing AMAZING!  I'll save all the official stuff to blog about after their reassessment, which is coming up quickly.  YIKES!!  I did want to give an update on some of the things we as parents have noticed the past couple months.

• Preston is super inquisitive.  He is always asking a million questions.  It's like his brain is on fire! A phrase I hear OFTEN is "Mom, I need to tell you something."  He is constantly asking or telling me something that he is thinking, has learned, or has questions about.
• He is not nearly as shy and nervous as he used to be.  He's still a little nervous around adults at first, but when it's just kids, he jumps right in there and makes friends.  
• He's also more in the mix when he plays with friends and less of a total follower than he used to be.   
• Preston is overly loving to everyone!!  He wants to hug and kiss his baby brother constantly and even his friends.  Thankfully he's a pretty loveable kid so most of them seem to tolerate his affection, even if they themselves are not used to that kind of thing.  It's like he can't help himself.  He cares so much about them, that he HAS to hug and kiss them.  
• He is learning to take a stand.  He used to just go along with everything anyone suggested, but now he is saying no or suggesting alternatives when he has an idea. 
• He also has started fighting back when Dylan is mean to him.  He used to be the younger sibling and very much the underdog, but now when he feels like Dylan is picking on him, he will try to fight back.  Both good and bad, but overall a skill he needed to develop.
• Preston's communication skills are INCREDIBLE!  He came up from the basement one day and was explaining a board game they had been playing.  My mother-in-law heard  him talking and she looked at me in shock.  I hadn't realized how far he had come with his communication skills, but it was very obvious to someone who doesn't see and talk to him every day.  
• Dylan was telling a story one day and Preston stopped him and said, "No, that's not the whole story.  Let me tell you what really happened."  He proceeded to tell me the entire story in great detail. That is not something that ever would have happened a few months ago.  
• His creativity is amazing!  The way he looks at the world is so different than others and that makes for creative conversations and fascinating questions.  He's also very creative with art and even when playing with legos. 
• Dylan writes creative essays as part of his cognitive work at Brain Balance.  Preston's skills are not high enough to be able to write essays yet, but he started wanting to write essays like Dylan.  He dictates his essays to his coach and she writes them down for him.  It's pretty awesome that he WANTS to do something he can't do yet and I love that they accommodated his desire to do more and found a way to allow him to do higher level work.  The program director showed me a few of his essays at his progress report last week and he really does have a great imagination.  It's a mixture of truth and fiction, but ends up being a real story that is actually interesting.  That fact alone shocks me!  He could not do anything like that a couple months ago.  
• His awareness of himself and the world around him have increased dramatically.  He notices so many things now that would have been difficult for him to see even with someone pointing it out to him. He is constantly thinking.  
• Because he is more aware of the world around him, we started dealing with some pretty big fears he'd never had in the past.  He is now afraid of death, space, and the dark.  He is also afraid of strange things like caterpillars, the smiley face on one of my toddler's toys, and several lullaby songs.  So one of the negative things we've been dealing with is both normal fears (age appropriate) and irrational fears. 
• Another interesting thing was that he started lying.  That isn't something we have had to deal with much as parents, but Preston had a couple weeks where he would look me in the eye and flat out lie.  Even when I told him he was lying and it was clear he'd been caught, he denied it.  Apparently that's developmentally appropriate around 4 or 5 years old so most likely it was just a phase he was passing through, but it was very strange dealing with it.
• He is getting so strong!  He has slimmed down a bit, but his physical abilities have really increased the past several months.  He can do sit-ups, push-ups, and loves the monkey bars and balance beam.  He is also a very fast runner now.  
• Preston is much more independent than he used to be.  We used to help him with quite a few self-help skills, but he is getting to the point where we can just say, "Go brush your teeth" and it happens.  We often have to follow up because he gets distracted, but he is capable of doing much more than he was before and will usually follow through.    
• Along those same lines, he often doesn't want help on projects he still needs help with.  This is both good and bad, but I am glad the desire to be able to do things on his own is there.
• He takes FOREVER to accomplish some tasks.  It isn't because he can't do it, but usually because he gets distracted or spends lots of time complaining instead of doing.  That happens the most with unloading the dishwasher and making his bed, his least favorite chores.  
• His ability to follow multi-step directions is incredible.  When he was 4, we could not even give him one step directions.  We could not say, "Go get your shoes" and expect him to complete the task.  Now I can say things like, "Go downstairs and get me a new bottle of dish soap.  It is down in the basement with the food storage on the shelf with the bleach and other cleaners.  I also need a roll of paper towels, which is on the shelf above the soap."  At first I was careful because I didn't think he could do something that complex, but sure enough he is able to follow what I am saying and come back with both items within a minute or two...without even getting distracted and forgetting what he was supposed to do.  
• We've been dealing with lots of new sensory issues that come and go.  That's all part of the brain developing and changing.  Some things I have seen in all three of my children who are doing the home program and others are unique to Preston.  One thing EVERYONE has experienced is the desire to hang upside down.  They do headstands or hang off the couch CONSTANTLY!  I'm not exactly sure why, but it is probably a sensory seeking thing.  Most likely it is related to proprioception (sensing your body in space).  They want more proprioceptive sensory input so they do things that seem a little crazy at times.  For months, they were ALWAYS hanging upside down.  Everywhere and anywhere.  That stage literally lasted close to three months, but now it is slowing down and I think they are doing headstands once in awhile for fun now and not as much because they need the extra sensory stimulation.
• The other sensory issue that has come and gone a couple times has to do with the rooting reflex.  Preston used to lick things all the time.  He was sensory seeking with all things related to the mouth and tongue.  This turned into his biting his shirt a few months ago (during the program) and then seemed to go away.  He did start licking things and biting his shirt for a couple weeks again recently, but that seems to be fading away once again.  Hopefully that means his rooting reflex is getting closer to being integrated.  Fingers crossed!!
• Preston's eating habits have changed a lot.  He used to want ketchup on EVERYTHING!  Within a few weeks of started Brain Balance, he started telling everyone he was allergic to ketchup and wouldn't touch it.  All of a sudden, he wanted mustard on everything.  Now he will eat mustard sometimes, has tried ketchup again a couple times and often just eats his food plain.  It's interesting to watch his taste buds change, but it seems it is usually temporary if kids are continuing to progress.  Otherwise I think they can get stuck in a picky eater phase for a very long time.  Preston is definitely my pickiest eater right now, but isn't bad compared to many kids with a brain imbalance.  Some textures really bother him, but there are plenty of foods I can find that he will eat so I don't worry too much about the evolution of food likes and dislikes in this child.

I'm sure there are so many things I am forgetting, but these are the ones that stick out to me the most as being the noticeable changes in Preston the past couple months.  

Talk Utah Interview

https://www.youtube.com/watch?v=ztooGlZY_08&feature=youtu.be

Primitive Reflexes

These are a few of the books I ended up reading when Preston finally received a diagnosis and I was seeking answers as to how I could help him.  I wish I had kept track of everything I read, but at the time I was just trying to gain as much knowledge as possible.  I borrowed books from friends, checked out books from the library, and read several articles online.  This is just a stack of books that I ended up owning.  Some of the books talk about how to help a child with a particular diagnosis, some talk about the way nutrition influences development, and others talk about the importance of movement in a child's development.  Several books discuss primitive reflexes.  Because I feel they are so important to understand, I'm going to talk about them a little bit here as well.      

Brain balance has a bottom up approach to achievement.  Rather than focus on tutoring a child with academic challenges, or finding programs for behavioral challenges, they start from the bottom (developmentally speaking) and move up from there.  At the bottom of the pyramid are primitive reflexes.  Brain balance tests for eight of these and scores each one.  Level 4 is the highest level, meaning that particular reflex is still at the level of a newborn.  The reflex hasn't been integrated at all.  Level 0 means the reflex doesn't show up anymore.  At level 0, the reflex has been fully integrated.  New, more efficient neural pathways have been created, which basically takes things from a state of survival (which the infant needs) to exploration and learning (where a toddler should be).  When primitive reflexes are fully integrated, higher level learning is more efficient.

So what are primitive reflexes?  They're reflexes developed in the womb (mostly) that are meant to aid in the birth process and help an infant survive when he/she is born.  Most people have heard about the sucking reflex and many are also familiar with the rooting reflex.  Both reflexes aid the infant in feeding, an extremely important aspect of survival.  Many people have also experienced the death grip an infant has when they put their finger against the palm of an infant. That, too, happens automatically.  It's a primitive reflex.  I knew all this before my reading began.  What I didn't realize was how many reflexes infants have.  There are a whole heck of a lot of them and if they don't get fully integrated, they can cause all sorts of different problems in development.

Brain balance tests for eight primitive reflexes and works on integrating those reflexes.  There is actually a lot of research around retained primitive reflexes and their effect on child development, and yet it doesn't seem to be common knowledge, even within the medical field.  Doctors know about infant reflexes and pediatricians test infants for them, but I don't know of any pediatricians that test toddlers to see if they still have them present after a year.  I'm not sure why that is exactly, but it's so strange to me.

Why do primitive reflexes matter?  Basically it's less efficient wiring of the brain.  It causes kids (and adults) to react to a given situation automatically rather than being able to fully think it through and decide how to react.  It keeps one or  more areas of development (behavioral, emotional, cognitive) at the survival stage instead of fully allowing higher level thinking to take place.  The degree to which it affects children varies greatly, but basically that's the best way I can think to describe it.  I'll try to explain it in a little greater detail and give examples when I talk about each reflex individually.

There are a lot of reasons this can happen.  I find myself picking apart every little detail of my life and finding ways to blame myself for the challenges my children are facing.  Not exactly healthy.  A lot of it is difficult to control.  Stress and nutrition before and during pregnancy (in both women and men), environmental toxins, long, difficult deliveries, cesarean delivery, premature birth, etc.  The list of risk factors is extensive and a bit overwhelming.  In my opinion, it is best to focus on these types of details before you have children to help give your children the best chance of proper development possible.  It is also helpful when trying to decide if your children may have retained primitive reflexes to be aware of things that may increase the likelihood.  However, I think the tendency to blame oneself for a learning disability or behavior problem is unhealthy.  Most parents are doing the best they can and truly want the best for their children.  So dwelling on the past too  much can be detrimental.  If you want more details, I highly recommend purchasing "Disconnected Kids" by Dr. Robert Melillo.  He discusses many risk factors in great detail.  There is also a genetic factor that he believes affects 38% of children with a brain imbalance.  The other 62% is thought to be environmental.  I believe our clan happens to fall into the 38% that is genetically predisposed to some crossed wires in the brain, although for sure there are environmental factors that influenced the development of our children.

So for the purpose of this post, I will not go into great detail about why a child may end up with retained primitive reflexes.  We parents have enough guilt.  However, there are two I will discuss because I feel that they have a much bigger impact on child development than we realize, and parents actually have a great deal of control over these two factors.  The first one is movement (or lack thereof), and the second one is screen time.  Here's the thing.  In order to integrate primitive reflexes, infants need A LOT of movement.  We're not talking active toddlers here.  I'm talking about little babies.  Their movements are small and seemingly insignificant most of the time, but they're actually super important.  Lying on their tummy, lifting their head off the ground, turning their head, focusing their eyes on moving objects, putting their hands and feet in their mouth and realizing they're attached to them, etc.  It's actually hard work being a baby!  Those little movements have to happen over and over again in order for a new and better neural pathway to be formed and eventually utilized.  So...what does that really mean?

Limit contraptions as much as possible.  Yes, we have to strap infants in car seats, but don't leave them in there when you're not driving.  Put them in their bed, on the floor, or carry them.  They need to feel natural movement and have the ability to move their head, neck, arms, legs, and feet as often as possible.  So basically everything you can avoid, just do.  Bouncy chairs, swings, saucers, etc. Swings serve a purpose because they are at least rocking the infant, but they still limit head movement so it's best to use them occasionally and not solely rely on them. Infant contraptions are necessary sometimes and impossible to avoid altogether, but the tendency today is to overuse them.  Less is best for sure! 

Limit screen time.  Every time I mention this one, people get nervous.  They already think they are limiting screen time or they justify what screen time they do give their kids because it's "educational."  To give you an idea of what is meant by limiting screen time, Dr. Melillo suggests that children should not even see a screen before the age of 3.  In Brain Balance, they limit screen time to 30 minutes a day.  You can save up your screen time over the week and use it in a larger chunk if you want.  That's what we have opted to do.  My kids generally watch one movie a week (90ish minutes).  They save up and usually watch a movie on Friday night.  We have chosen not to do more than that during the week because school often requires some screen time and that way we feel they still stay under the recommended time allotment even if they have to watch a 5 minute YouTube video about Shakespeare or complete a math assignment on the computer.  We have always been careful about screen time and I'm sure are quite extreme compared to most, but when we started the program, we realized how much more we had to limit.  We still do not own video game systems or ipads.  Part of that was a decision we made long ago, part of it is financial, and now the decision is based on what we believe our kids need.  I know it's tempting to use the TV as a babysitter so you can shower or make dinner.  I SO GET IT!!  My boys had way more screen time when they were toddlers and preschoolers than I wish they would have.  They were educational shows and "good wholesome" programs.  They even helped them learn their letters and numbers.  But they were not what they needed.  Movement and sensory experiences are what young children need.  Period.  Love, a healthy environment, nutritious food, and lots of sensory experiences - hearing music, smelling a flower, feeling mud and water between their fingers and toes, tasting healthy foods with different textures, etc.

Because I feel that primitive reflexes are SUPER important, I'm going to try to explain each one in greater detail in future posts.  Hopefully it won't be a month before my next post.  ;) 

We're Back!

Whew...that was a much bigger break than we anticipated.  We have still been doing home exercises and following the diet, but after the boys had their three month reassessment, it was so close to the holidays that we ended up taking the rest of December off before we officially started part 2 of sessions at Brain Balance.  Dylan had a big role in the play Savior of the World (El Salvador Del Mundo) and had so many practices and rehearsals that coordinating schedules would have been nearly impossible.  Plus the holidays are chaotic even on a normal year.  But we're back and we're thrilled to continue to grow and develop with the amazing staff at Brain Balance.

After MUCH prayer and pondering, we have decided to have Dylan join Preston for the last half of our six month journey.  I'll spare you the details.  Suffice it to say, we know that's what Dylan needs right now and so that's the direction we're taking.  Both Dylan and Preston started back this week.

December was an emotional month with lots of highs and lows.  My desire to help Preston has driven me to a lot of independent research on the brain and some of the factors that affect development.  I am so grateful for the Brain Balance program and all I have learned there, but continue to read and study on my own as time allows.  It seems like every time I read or reread a book related to neurology or child development, I learn more my and something new clicks.  Because of some of this research, I am more aware of some of the signs that point to potential problems in the future.  That is probably both a blessing and a curse.  Either way, after noticing retained primitive reflexes in Marissa, Marcos and I have decided to have Marissa (our 4 year old) start doing home exercises with the boys.  I had always intended on having the whole family do home exercises together, but realized after starting the program how difficult monitoring multiple children simultaneously can be.  Marissa joined them on occasion, but I never made it a mandatory thing for her.  However, we have now decided to have her join them three times a day for home exercises rather than waiting until the boys finish the program.  This has definitely taken from our already limited time and added to my own stress, but we are grateful to have tools to use when such things arise, and feel it unwise to wait with the new understanding we have.  For all intents and purposes, Marissa would be considered neuro-typical.  She has no diagnosed learning or behavioral problems.  But retained primitive reflexes can cause all sorts of problems that very greatly in intensity and can emerge at different times throughout one's life.  Needless to say, home exercises have truly become a family affair. 

I had always intended to blog more and explain this process along the way, but as we got started on this journey, I realized just how limited my time was, especially with children struggling behaviorally as major developmental changes take place.  It's AMAZING, but SUPER INTENSE!  For the most part, I have lived in survival mode for the past several months.  As such, I have had to limit my posts to brief updates on the boys' progress.  However, my desire to bring hope to parents with children who struggle with all sorts of learning and behavioral problems reminds me of the need to share this knowledge.  I know when I start talking about food sensitivities, nutrition, supplements, home exercises, eye patches, ear plugs, smells, music, core strength, balance, screen time, right brain and left brain, it is overwhelming.  There is so much information and research behind everything we do.  Hopefully my next several posts will help break it all down a bit so it's easier to understand.

Preston's 3 Month Assessment

If you haven't read the post about Dylan's progress, start with that one.  I went into more detail about what some of the tests mean, but didn't want to repeat the information again in this post.  It will make more sense that way.

We are thrilled with the progress Preston has made in just 3 months!  It's incredible! 

Primitive Reflexes
In primitive reflexes, Preston improved one level in three of the eight primitive reflexes that are tested at Brain Balance, two levels in one primitive reflex, and stayed the same in four primitive reflexes.  I actually was surprised that so many didn't move because we are so vigilant with exercises, but I know that in time they will move.  And if it's like most things with Preston, it will take a long time and then out of nowhere a huge leap in development will be seen.

During Brain Balance sessions, Preston spends half of his time in the sensory motor room and the other half in the cognitive room.  Most of his gains in these areas can be attributed to the time spent in the sessions.

Vision
From level 1 to level 7, with 15 being the goal in OPK.  Again, that is the test where black and white alternating lines move across the screen from left to right and their eye movements while watching the screen are tracked for one minute.  The results of this one actually surprised me because I feel like Preston still struggles so much with this exercise, but I'm super happy about his progress.  Moving 6 levels on anything in 3 months is AWESOME!

VOR is when you start out looking straight ahead at an object and then turn your head to the side but keep your eyes on the object.  You can see that Preston has moved from a level 9 to a level 13.  But...it's even cooler than that.  When he was first evaluated, he got to level 9 with help.  The person giving the test actually had to help him turn his head on the first evaluation because it's difficult for a lot of the younger kids to understand what is being asked of them.  So the first test was with someone physically turning his head while he tried to keep his eye on the object in front of him (I think it was just looking at himself in a mirror) and the second test was turning his head on his own.  That is so much bigger than 4 levels of improvement because the "control" part of the test is different.

Hearing

The next part of the test is hearing.  I can hardly type this part without getting emotional.  There are two parts they test.  One has more to do with their perception of sound and the other is auditory processing, which has to do with how they process the sound.  

When we started testing Preston to figure out why he was struggling developmentally, we learned that he had difficulties on both ends of communicating.  This website does a pretty good job of explaining the communication process.  The steps to communication are listed on nursing-help.com as follows: ideation (sender decides to share and develops an idea or selects information to share), encoding (putting meaning into symbolic forms - speaking, writing, or nonverbal behavior), transmission, receiving (receiver's senses of seeing and hearing are activated as the transmitted message is received), decoding of the message (the receiver defines words and interprets gestures during the transmission of speech) and response or feedback (sender must know that the message has been received and accurately interpreted.  

The purpose of the website is to increase communication skills, but it is helpful for me to use the information to explain Preston's challenges.  At 4 years old, he struggled with ideation (so coming up with a new idea - even when given a new toy or activity) was hard for him and the decoding stage of hearing was a challenge, which is what eventually lead to his diagnosis of Auditory Processing Disorder.  He could physically hear, but couldn't interpret what was being said or asked of him.  In other words, the problem with his hearing was with his brain, not his ears.  I found this article that breaks APD down in a way that's pretty easy to understand if you want more information.  

This is the part that makes me cry!  You have to know that Preston had already made significant progress in his auditory processing with the other therapies we had done with him the past few years.  But from his initial test in August to today, Preston went from level 11 to level 15 (100%) in his perception of sound.  And in auditory processing (the way he processes that sound in his brain) he went from age 4 to age 11.  In three months!  So my child who had a diagnosis of Auditory Processing Disorder and could not understand what I was asking him a few years ago, is now more than three years older than his chronological age for auditory processing.  Seriously!  It's INCREDIBLE!!  He was already doing so well compared to where he had been.  So well.  But in three months, he gained 7 years of ability in this area.  

Smell

His sense of smell has moved up 3 levels from 8 to 11, with the end goal being level 15.  He's definitely improved in this area.  He notices what I'm cooking, good smells, bad smells, etc.  He's even become a pickier eater (which I know doesn't sound like a good thing, but it is developmentally speaking).  

Touch

Preston's sense of touch on his arm went from a 4 year old level to a 7 year old level.  He's almost to his age level on that.  Amazing!  And his sense of touch on his legs improved from age 5 to age 9.  Again...incredible!  

Fine Motor

Preston went from age 2 to age 5 in fine motor skills.  Again, absolutely amazing!  He has struggled with fine motor skills for so long.  Everything has been a challenge.  It always felt like his hands were just randomly attached to the ends of his arms the way he moved them around and tried to maneuver things.  We still have a ways to go, but three years gain in three months is awesome!

Core Muscle Testing

All the core muscle testing is based on age.  You can see that he's made substantial gains in all the different core strength tests.  I can't imagine that the push-ups test is completely accurate.  It's quite possible that he is at a 5 year old level, but I don't think he was at age 4 before.  When we started the program, he would whine and complain about how hard push-ups on the wall were and would only do 2 or 3.  Now he is doing around 10 push-ups on his toes in one minute.  To me, that is much greater than a one year improvement in push-ups.

Spacial Awareness

Preston's maturity of balance and equilibrium is still at level 13, with 15 being the goal.  However, he has improved two years in his proprioception, from age 3 to age 5.  We still have a ways to go, but two years improvement in proprioception is awesome!

I explained a little bit about proprioception in my post on Dylan's 3 month assessment, but am including the link here as well.  If you don't know what proprioception is, this will give you a better idea.  

Synchronization
Preston is way above his age level on the balance beam.  He started out at age 10 and is now at age 16.

On gait and aerobics, which measure the bilateral coordination, he improved from age 4 to age 6.

On the interactive metronome, which measures processing, rhythm, timing and motor planning (again, read Dylan's post for more details) Preston improved from age 5 to age 7.

Academics

You can see from his scores how difficult learning is for Preston.  I was told he was pretty tired of testing by the time they got to the cognitive portion of the test.  The testing took close to 3 1/2 hours with only one short break after the sensory motor portion.  I'm guessing some of the results of the second test can be attributed to his desire to be done with testing.  I doubt his listening comprehension decreased from the 63rd percentile to the 27th percentile, although sometimes regression happens in certain areas before big leaps in development.  We have a long way to go with academics, but he will progress as primitive reflexes are integrated and his sensory motor skills continue to improve.  Again, it's a building block process with the cognitive being the third section of the pyramid.  So...it makes sense that his gains in this area were smaller.  However, I did want to point out one significant gain in ability - oral expression.  This shows his oral expression going from the 4th percentile to 37th percentile.  That's HUGE and one of the things we have noticed most.  He has so much to say and is able to express himself so much better now.  And discovering just what he has been thinking about now that he is better able to express himself has been the most joyful part of this whole process.

Parent Observations

I had a billion forms to fill out while the boys were testing.  It was like taking the ACT again, but with two other kids to watch during the process.  So stressful and time consuming!  It took me 3 1/2 hours.  

Three of the four forms are forms used by schools or clinicians to help determine a possible diagnosis for a child being evaluated for a specific disorder.  The other one is a test specific to Brain Balance and was much longer and more detailed than the other three.  The Brown's Scale is a test to screen for ADD/ADHD, GADS is a form to screen for asperger's, and GARS is a form to screen for autism.  I included these just so you can see how much improvement he has made with regard to behaviors at home observed by a parent.  It's pretty substantial.  

It's crazy when I look at pictures from this past August.  Preston has always been the child I have to watch the most for weight-gain, but with the chaos in our family as a result of a job change and move (which fell through and created even more chaos), he really chunked out this past summer.  The  physical differences alone are INSANE!  The recent picture is a little goofy, but I wanted to get a picture with his shirt off so the pictures would be similar.  Of course once his shirt was off, he decided to "flex" his muscles and the awkward pose is a result of his desire to show off his bulging muscles.  Gotta love it!  

It's strange to say he's a different kid, but in so many ways, he really is.  He's still my precious Preston, a boy without guile, filled with love and compassion for everyone.  But his ability to function well in the world has increased dramatically.  We've still got a long way to go and a lot of hard work ahead of us, but I am so filled with hope for this boy and his future.  At one point, Marcos and I had no diagnosis and no direction as to why Preston had so many developmental delays.  We weren't sure if he would even be able to live on his own one day, if he would graduate from high school, or if he would be able to get a job.  We had so many questions and very few answers.  At the time, we grieved for Preston and the future every parent wants for their child.  We were grateful for the spirit entrusted to our care and knew he was unique and extraordinary in every sense of the word, but we had to let go of some of our expectations for his future.  I kept seeking answers.  They came little by little thanks to an all-knowing God who loves me perfectly and directs my life when I ask, wait patiently, and am willing to take action when answers come.  I never gave up hope, but I always worried how much progress Preston would make and what his future would like.  Today I can say that I finally feel confident that Preston's potential for growth is immeasurable.  It is not easy!!  The past three plus months have been incredibly challenging for our family.  It has required time and effort and going against the grain, which can feel lonely and isolating at time.  I have to shout it from the rooftops!  There is HOPE!!  A child with challenges can improve and make huge gains in development.  It's truly incredible!  We are so thrilled with Preston's progress and can't wait to see the changes that occur in the next three months of this journey.