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.