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.  

Dylan's 3 Month Assessment

The boys had their 3 month assessment this week.  We got the results today and are so excited about the progress they have made!

Brain Balance has a different approach than most because it starts learning over at the bottom of the developmental chain.  Most approaches look at cognitive on one side and behavior on the other.  Brain Balance takes more of a building block approach.  One area builds on the next.  You can see the pyramid in the results picture below.  At the bottom you have primitive reflexes, then sensory motor, then cognitive, and finally instruction.    

Primitive Reflexes
Primitive Reflexes (infant reflexes) are supposed to be present in infants, but be integrated by the age of 1.  A few examples of primitive reflexes are rooting, sucking, and the death grip (palmar grasp) infants have when you put your finger next to their hand.  Most people know about a few reflexes, but there are actually a number of infant reflexes that affect a lot of things if not properly integrated. These reflexes serve a purpose in a newborn.  They help the infant survive - in the womb, during the birthing process, to be able to eat, to help them learn to crawl and eventually walk, to catch themselves if they fall, etc.  But by the time a baby enters toddlerhood, the primitive reflexes should be fully integrated.  The old instinctive way should have been replaced with a new and better neural pathway.  However, for many children the primitive reflexes remain past a year.  There are many things that can cause this - maternal stress during pregnancy, premature or difficult labor, lack of movement during the first year of life (too many baby contraptions and not enough moving time on the floor or being carried by mom, etc.)  There is also a genetic factor that makes it more likely in some families than in others.  Here's the part that TOTALLY ANNOYS me!!  Pediatricians test for infant reflexes.  They want to make sure they are present because if they aren't, it means there is a problem.  But they don't test after a year to see if they are still present.  Honestly, if we could get pediatricians to understand this and change the way they test somewhat, we could probably do more for kids who now are red flagged for future problems (whether great or small).  That would give direction and real meaningful "early intervention" for parents who most likely haven't seen too many signs of problems yet (except in the most extreme cases).  Okay, rant over.  But really people.  This whole primitive reflexes thing is a big deal.   I'm going to do separate posts on some of the primitive reflexes because I think it's important that people understand what they are, ways to tell if your child might still have the reflex, and how that reflex may negatively impact them.  

Anyway, there are 8 primitive reflexes that they test for at Brain Balance.  For each of these reflexes, you are given a score of level 1-4, 4 meaning it hasn't been integrated at all (it's still at the level of a newborn) and 1 being it's almost gone, but there is still part of the reflex lingering.  Neither of my boys had any primitive reflexes that were fully integrated.  

You can see from the picture that Dylan had three out of 8 that hadn't integrated at all, which actually surprised everyone (including those testing him).  That's part of the reason we decided the home program would be good for him because the exercises we do at home (3 times a day) are geared toward helping integrate the primitive reflexes.  You can see from the dots that Dylan moved 1 level in 4 primitive reflexes, 2 levels in 2 primitive reflexes and stayed the same in the other two.  We have a long way to go before they are all integrated, but we are definitely making good progress.  

The next area of focus in the pyramid is sensory motor.  Dylan didn't have exposure to a lot of this because much of what they do takes place during the Brain Balance sessions.  But...he still made some significant gains in a couple of areas that are worth mentioning.  

Vision

His eyes didn't improve on the OPK (they actually went down, but I wonder if it was just a bad moment of the test because in my opinion he has improved quite a bit in this area).  It's basically black and white vertical lines that move from left to right.  You're supposed to track the lines with your eyes and they measure how many times your eyes move in a minute.  On VOR, however, he is at the highest level.  Wa-hoo!  This is when you are looking forward and turn your head to the side but keep your eyes on the object in front of you.  We already mentioned being able to cross his eyes in a previous post so I won't say too much more about that now.  Basically his eyes move more fluidly than they did before, which is super important.

Hearing

Dylan was already really good with skills related to hearing, but it's worth mentioning that he's at the top of where they would want him to be.  Basically with hearing there are steps to actually "hear" and "interpret" correctly.  Some have to do with your actual hearing, but a lot of them have to do with what's taking place in your brain.  I'll explain it a little more in Preston's progress report since he really struggled in this area.  

Smell

Dylan's sense of smell remained the same.  There are 15 levels and he's at a level 14.  So he's fine, but he could improve one more level with smells.  Again, he didn't receive as much sensory motor stuff because he was only doing the home program so the lack of improvement makes sense.  

Touch

Dylan's sense of touch didn't improve.  In fact, it went down a level on the arms.  This is one area that we feel needs some work.  Dylan was the hyper-sensitive child who hated tags on his clothing, the line on his sock being off at all, shoes that were too tight, etc.  He has gotten more tolerant of these things over time, but it's still an area where he needs improvement.  His sense of touch is definitely off and it affects him in more ways than we know I'm sure.  

Fine Motor

Dylan's fine motor skills were at age 7 and didn't improve.  It's amazing to get the results of some of these tests and realize how many things your child struggles with that he is compensating for somehow.  In general, Dylan functions well in the world, but it is now clear to us that in many ways he has had to adapt the way he does things.  So when he says he hates writing, he really does.  His cognitive ability to read and write is high, but his ability to physically write well is much lower.  

Core Muscle Testing

Dylan was doing pretty well with his core muscle strength on the first test, but made significant improvements in three of the six areas.  He went from age 9 to age 11 in lateral core, from age 5 to age 9 in brachiation (4 years...that's HUGE!!), from age 6 to age 10 in sit-ups.

Spatial Awareness:

Dylan's balance and equilibrium are pretty good.  He still needs to come up a couple levels in PRNG (I can't remember how they test that now that I'm typing this...).  Proprioception needs some work.  The test for proprioception is scored by age, rather than level.  He was at a 5 year old level before and now is at a 6 year old level.  Most people don't even know about proprioception.  Proprioception is the 6th sense.  It's basically the ability to sense yourself in your environment, to know where your limbs are in relation to the rest of your body and other objects that surround you. 

This is a good link that explains proprioception a little bit better. http://www.spdaustralia.com.au/the-proprioceptive-system/  On SPD Australia's site, it states, 

"Proprioception is the process by which the body can vary muscle contraction in immediate response to incoming information regarding external forces, by utilizing stretch receptors in the muscles to keep track of the joint position in the body.

Proprioception and kinesthesia, the sensation of joint motion and acceleration, are the sensory feedback mechanisms for motor control and posture. These mechanisms along with the vestibular system, a fluid filled network within the inner ear that can feel the pull of gravity and helps the body keep oriented and balanced, are unconsciously utilized by the brain to provide a constant influx of sensory information. The brain can then send out immediate and unconscious adjustments to the muscles and joints in order to achieve movement and balance."

SPD Australia gives a good example that is pretty easy to understand.  They use the example of moving your finger.  In a normal person, everything works together well and you effortlessly move your finger once you make a decision to do so.  In someone with poor proprioception, they actually have to compensate for the lack of proprioception.  Instead of it being an automatic and effortless process, they need to think about the movement in order to make it happen.  They concentrate on moving their finger, and may even have to look at their finger to make it move the way they want it to.  So basically this 6th sense isn't as strong as it should be for a child of Dylan's age.  

Synchronization:

As far as balance is concerned, Dylan is doing excellent.  The balance beam test is graded by age.  He was at age 13 when he started the test and is now at age 15 as far as his balance is concerned.  He's also at age 15 for his bilateral coordination.  So basically he can move forward and back, sideways, etc. on a balance beam without falling off or losing his balance.  They have you look at the ceiling sometimes, throw a bean bag from one hand to the other while walking, etc. to change the level of difficulty. 

The interactive metronome is an exercise that has them clap, slap their leg, or tap their foot forward or backwards to the rhythm.  Dylan improved one year, but is still only at age 7 for this.  The Brain Balance employee who discussed our results with us described it as a movie you are streaming online.  You know how once in awhile the sound is not in sync with the way their mouths are moving.  It pretty much makes you nuts to watch a movie like that!  Well, this is kind of like that. He's just a tiny bit behind when anticipating the timing of the next beat.  

Academics:
I debated even including this part for a couple of reasons.  First, people tend to be quick to judge a book by its cover in all things "school" related.  It's one of the quickest way to throw a label on someone.  Second, I didn't know whether or not Dylan would mind others seeing these "official results."  He tends to be very hard on himself even though he's a very capable and pretty gifted kid.  He has never struggled with learning.  NEVER!  His struggles are more related to behavior and attitude most of the time so we've been very careful not to push him academically beyond his desire to learn and grow.  And he has blossomed with skill development as a result. Third, some of the results may be due to the fact that we homeschool our kids.  For example, Dylan has always been at grade level with math, but has never been in a timed test for math.  I know they work on timed tests a lot with basic math skills in school and that is something we've chosen not to do with our kids.  I care much more that my kids LOVE learning and understand the overall concept being taught than that they are fast or at the "top of their class" so to speak.

That being said, I chose to include the results of the cognitive portion because he has made some pretty significant jumps in his cognitive testing and I thought that was worth including here.

We were so happy to see Dylan's progress.  There are several areas that need more attention, but overall for how much effort we have put in, he has made some amazing gains in his progress.  He, however, saw the test and was immediately discouraged that everything wasn't 100% yet.  And that is why we still have work to do. :) 

Absence

For the handful of people following our progress, I'm sure my lack of posts has been frustrating.  Want to know the brutal truth?  Brain growing is filled with lots of ups and downs.  LOTS!  We are only partway through this journey, but I already know this will be worth it in the end.  But the day-to-day stuff can be very trying, both physically and emotionally.  I feel lonely and isolated much of the time.  People don't know how exactly to include us, since so much of life includes screen time and food that's outside of our dietary restrictions.  Plus, we're super busy so actually fitting anything extra in is really difficult right now, even if it's something we'd really like to do.

I have two younger kids who I worry are being neglected in this whole process.  It's hard to spread time evenly between children anyway, but with exercises three times a day, schoolwork, Brain Balance sessions, and the extra time required to shop and cook, my time is so limited.  The behavior of my younger kids slips and I wonder if it is developmentally appropriate, if they are reacting to this process, or if we are going to have to start exercises with the younger kids at some point because it seems we are part of the 38% that has a genetic predisposition to a brain imbalance (although environmental factors are always involved). 

I typed an entire post a couple weeks ago about some pretty rough days with Dylan, but didn't publish it.  He tends to be more reactive and impulsive in nature and those moments can be pretty big in a 10-year-old boy whose brain is going back through stages typical of a toddler.  I've struggled a lot with how much to share publicly because as much as I want to document this process, part of my job is to protect my children.  People can be very judgmental, quick to label, and slow to forget negative behavior.  Human nature is to remember the bad and forget the good.  After much pondering, I have chosen to turn to a smaller group for support during trying times rather than document the details for the rest of the world to scrutinize.  Suffice it to say, it has been very difficult dealing with the bad behavior element of the program.  And of course with two kids, even when one is having an awesome breakthrough, the other one may be struggling so much that it's hard to even want to celebrate the good.  A couple of times I've been on the verge of a complete breakdown.  I've needed help.  I've needed a break.  And yet the times when I most need a break, my kids are so difficult that I don't even dare ask.  It's an exhausting place to be!  Some moments I just don't want to be THE PERSON who has to deal with anything and everything when no one else can.  I don't want to be the only one who can calm a meltdown or talk things through with an explosive personality.  So...survival mode.  That's where I've been.  That, and the fact that I had to gear up to make it through Halloween and Thanksgiving, no easy task when your kids are gluten, dairy, soy and peanut free at the moment.  So a lot of extra time was spent coming up with activities we could do to take the focus off of food and to plan and prepare food that would allow my kids to still enjoy the holidays. 

To make matters worse, there are all sorts of folks with good intentions who insist on making sure you KNOW your child is acting up.  This has maybe been the most difficult part for me.  Rarely is a child JUST acting up at school or at church.  Usually the bad behavior is pretty widespread.  If it's relatively new or isolated behavior and you know there's a lot going on at the time, maybe, just maybe you can ignore it.  Maybe, just maybe, you can give me the benefit of the doubt and not assume I am the worst parent ever because I don't have four perfect children sporting their latest trophy, designer clothes, and sparkling smiles.  Yep, I know he/she is having a hard time listening and behaving, is talking back, and struggling to deal with life.  We all are right now!  Whether in the program or not, our family is experiencing this program together and it's taking its toll on everyone.  I know in general things look fine on the outside, but the Brain Balance program is pretty major.  I mean, really.  Kids often start this program with one or more major diagnoses: autism, asberger's disease, ADD, ADHD, OCD, ODD, dyslexia, dyscalcula, dyspraxia, sensory processing disorder, auditory processing disorder, etc.  And when all is said and done, they may not even fall on the autism spectrum anymore, find many of their disabling symptoms have fallen away, or no longer qualify for an IEP because they have improved so much.  Imagine what that feels like.  Just imagine.  Years of developmental milestones that were never reached coming and going as if in fast forward mode as your brain attempts to catch up a lagging hemisphere, as well as get rid of retained primitive reflexes that cause all sorts of problems.  Yeah, it's life changing.  But it is NOT EASY!!  Nothing worthwhile ever is it seems.

Hopefully that helps explain the lack of posts.  No, I did not stop blogging.  No, we did not stop Brain Balance or fall off the gluten free, dairy free wagon over the holidays.  But yes, it's been a rough few weeks. 

After a post that was way too long and negative, I have some good news.  Wait for it.  Wait for it.  ;)  Dylan and Preston have their 3 month reassessment at Brain Balance tomorrow so we should have some official testing results to post within the week.  I am so excited....and nervous!  But mostly excited.  I know they have made progress and I can't wait to see how far they've come and also to get a feel for how much more work we have ahead of us.  I need a little boost in motivation right now and I know this will help.