The Spy in my Child's Brain

So I recently read a book that has left me thinking for literally weeks now.  I then started following the author's blog and now I'm pretty convinced this is a person with many answers.  The book, Finding Kansas by Aaron Likens is about "Living and Decoding Asperger's Syndrome".  If any of you have been following the news lately, you might know that Asperger's syndrome is no longer considered a diagnosis as it falls on the Autism spectrum and in the future will be labeled as such.  Anyway, the author Aaron Likens, was diagnosed with Asperger's syndrome as a young adult.  This means he went through his entire childhood not knowing why he thought differently then others.

When Likens received his diagnosis, his father handed him a journal and told him to start writing about it.  Finding Kansas is basically those journal entries.  I think what I found most interesting about this book was the raw emotion and insightful discoveries he made as he learned about his thought process.  There were so many references that really lit a light bulb for me in explaining some of my son's behaviors.  Here are just a few.

In his book, Likens talks about this pop can that sat on his television for the longest time.  It has been left there by a friend and Likens never moved it because it reminded him of that time he spent with his friend.  One day his mother tidied up his room and removed the can.  He was so distraught over this little can because for him, it tied him to his friend.  Perhaps this explains why I can not remove a single thing from Brayden's room without asking him first.  The times I have removed them, he has spouted off some remote connection to that item that I ruined by discarding it.  Now if he makes the decision to remove it, that is a different story because he can decide if he needs it for that memory.  This is why I am certain that his aquarium ticket stubs from three years ago will never leave his room.

On his blog, Likens talks about how calming a road trip was for him.  Brayden is our best traveler and always has been.  The only time he complains is when we stop and make him get out.  So why does Liken's enjoy these trips?  Because he knows his parents will be there from start to finish.  They will not have to go to work, run to the store or leave the house for some other obligation.  Everything is stable and consistent in a car traveling to a destination.  There are no transitions in the car. Makes total sense.

A third connection from Liken's writings that I found interesting was how he interpreted his inability to socialize.  This has always been a huge area of concern with Brayden.  He is a totally different child at home than he is in a social situation and there are very few people that he can actually have a conversation with outside of his family.  Likens experienced this same frustration growing up.  In his words, he found it difficult to engage in a conversation because of how fast his mind work.  He over thinks everything.  So in conversation, he has to think about what the person is saying and then his response and then predict what the person's response will be to his response.  If you add another person to the conversation...well, you can just imagine all the thinking that goes on.  This would completely explain why Brayden only listens in social situations.

Along this same line is probably one of the most interesting aspects about Likens that appears to be similar for Brayden.  Likens is a well known speaker for Autism.  Yes, he is a public speaker who speaks to thousands of professionals, parents and students.  He describes himself as an actor playing out the role.  When public speaking, there is no conversation.  It is almost always one way.  You speak about what you know most about.  We have found that Brayden has no trouble talking in front of his class or speaking in his school play.  This has puzzled those who have labeled him as "painfully shy".  If I look at it from Liken's perspective, it makes total sense.

I have only read the book once and given all the insight it has given, I think it deserves a second glance.  What do you think about my connections?   Reading this book almost made me feel like I have a spy in my son's brain who might be able to help me understand him better.  What do you think?

The answer to the misery of math

Today I'm going to take you back to that puzzle I'm working on with figuring out my kiddos and how to best meet their needs. I was recently given another piece of the puzzle to tackle and that piece happens to involve math. You either love math or hate math, in my opinion.

Since the beginning of the school year, Brayden has been in tears over math.  It is the main reason he states for "hating" school.  Yet, none of us could figure out why because he can rattle off math problems in his head. He scores high on his quarterly test for math.  He never had a problem with it until the double digits with borrowing reared their ugly heads.

Both of my kids fell apart with this little twist in their schooling so I ran to my expert, their occupational therapist (OT).  For Teagan, the answer was so incredibly simple.  She has a severe bilateral coordination deficit. She has trouble crossing the midline of her paper. She is a child that writes up the side of the paper because her brain doesn't tell her to go to the next line.  So our OT did a double digit problem with her by highlighting one column so she could see the separation and placing an "X" so that even the single digits were double.  I was shocked.  This simple change made everything click for Teagan and that kid can knock out her math like a whiz.

Brayden's another story.  When you do double digit math, you are no longer just counting, a basic skill learned early on.  There is a process or praxis in solving this type of math.  As his OT explained it, this process starts with an Ideation (picture), then there is the Motor component (plan and organize) followed by the Execution.  So Ideation-Motor-Execution.  Brayden has no problem picturing things but when it comes to planning and organizing, he is at a deficit.  He has difficulty planning what to do and how to do it.  So for him, he can't figure out which side to start with. Then he can't figure out when to borrow.  If you tell him this planning part, he has no problem doing the actual math.

Dys-praxia, basically difficulty planning what to do and how to do it is essentially what frustrates Brayden with school.  His two biggest struggles are math and writing.  Writing requires the same process.  You have a picture in your mind of what you want to write but then you have to plan and organize it before you can execute it.  He can verbally tell you an answer but he struggles at putting it in writing.

So how do you fix all this?  Well, that is the million dollar question.  How do we get him the help he needs to tackle these two areas of school?  Basically  we are back at the first step of more evaluating by the school in hopes of getting more help...ughh!

Another take on why your child doesn't sleep well

Check out my little buddy here.

What you might not know by looking at this picture is that there are about 20 stuffed animals piled on top of him under his blanket.  This is how he sleeps every night.  Anyone else's child do this?    Let's look at why.

In children with sensory processing disorder (SPD), proprioceptive dysfunction is very common.  The proprioceptive system is the components of muscles, joints, and tendons that provide a person with an awareness of their body position.  This is really one of the heart breaking areas of SPD for me.  In my Teagan, she runs into thing, trips and falls, and generally looks clumsy.  In Brayden, he is so cautious that you see him move really slowly around people and objects along with looking clumsy most of the time.  He also likes tight clothes, hugs, and anything that can make him feel his body more.

So back to the stuffed animals.  When your proprioceptive is not working properly, it can really make sleeping difficult.  Once the lights are out and these kids are tucked in their beds, it can be very hard for them to feel their legs in relation to the space around them.  Imagine how scary it is for a child to be laying in the dark thinking they lost their legs!  So these kids often want piles of blankets and animals on them so they can feel their bodies.

If this is your child, I have the solution for you! You can fork out $50 to $100 and buy a weighted blanket or if you want to save those dollars, you can use this tutorial for making your own weighted blanket.
http://jesttupositive.wordpress.com/2012/11/09/diy-weighted-blanket/

I made one last night for my Brayden and he loves it!  In fact he hasn't taken it off his lap and slept really well with it last night.  I plan to make two more for my other kids today. So if your child is having trouble sleeping, give it a try.  It will be the best $12 you ever spent!

The Puzzle Pieces of a Child

So I wish I could report that my diet transformation for my kids was right on target but I'm not one to sugar coat things. My son is eating a lot of bacon, great; but his secondary food right now is Popcorners.  Darn those people who made them!  As for Teagan, she is begging for donuts everyday and since I don't have donuts, she cries "there is nothing I can eat", every. single. morning!  So I end up shoving her out the door with a pouch of applesauce yelling "Have a great day honey!"   I guess I have more work to do.

Our kids are often like putting together the pieces of a puzzle.  As parents, we are constantly re-evaluating what works for discipline, self-esteem, diet, and school.  Then you add a challenge such as SPD and the puzzle seems to have so many more pieces to it.  This puzzles has been occupying my every thought for the past two years it seems. Are they low in zinc? Should I try B-12 injections? Do they need a swing in their room? Will melatonin help them sleep? Is school the best place for them to learn? Should I post picture cards through the house?  and the list goes on...

I'm pretty sure this has become an obsession of mine.  Heck, maybe I'll just make a career of it so at least I'll get paid to think about it all day long.  Anyway, the current book I"m reading has managed to make my puzzle triple in pieces. Where the heck was this book 7 years ago?  It is Jenny McCarthy and Dr. Jerry Kartzinel's book "Healing and Preventing Autism"  Now before you all start reminding me that I don't have autistic children, let's look at some similarities.  Both disorders are abnormal ways of responding to stimuli and/or sensations that occur in every day life.  Both are neurological disorders that are influenced by genetics and the environment.  This book addresses much much more than Austism.

What I love about this book is that much of the advice in it applies to most autoimmune disorders.  As many of you know, I have fibromyalgia, an auto-immune disorder.  My mom and her mom have thyroid disease, an auto-immune disorder.  Brayden has a leaky gut and food allergies, immune system disorders.  Teagan had a rare fever disorder as a toddler, again immune system.  Do we see a pattern here?  This book discusses everything from vaccinations, diet, and supplements to detoxification.  A must read in my opinion for every parent that has a child suffering from allergies, asthma, Autism, SPD or any other ailment for that matter.  It just might solve another piece of the puzzle!

Picky eaters redefined

It seems like everywhere you turn, someone is writing an article on picky eaters.  It appears to be an epidemic with the last few generations of children.  Our family is no exception to this latest "trend" of parenting headaches facing parents today.  However plentiful these articles and books are on the subject, it seems that the majority of them miss the ball on picky eaters.

You see there are picky eaters trying to exert control, picky eaters due to lack of exposure to healthy foods, picky eaters with no explanation or other factors, and then picky eaters with Sensory Processing Disorder (SPD) or some other neurological impairment such as Autism.  There is a big difference between the first three and SPD.

For years, our prediatricians (we had several) all told us Brayden would out grow his eating struggles around age five.  Well, age five came and went and we were faced with much more than picky eating.  This is so hard for people to comprehend.  If you put good food in front of a hungry child, he will eat it, right?  For most kids, yes, but for Brayden no.  In fact, Brayden has come very close to hospitalization for starving himself in the past. Something as simple as a cold can make it impossible for him to eat food. Even ice cream! Another concept that is hard for others to conceive.

I'm lucky enough <insert sarcasm>  to have both a picky eater and a child with a food aversion so let me tell you  a few differences.  First of all, my son with the food aversion physically can not consume many foods.  In fact, a crumb on the table makes it impossible for him to even sit there.  The thought of eating certain foods will make him gag.  His mouth is oversensitive to the textures of food so any flaw in the make up of a certain food triggers this reflex.

Now my Teagan, who is a picky eater, has strong preferences for the same foods.  There is a direct correlation though to the types of foods she has and what she will eat.  If she is given sugar foods, she will refuse healthy foods.  But the longer she is given the healthier foods, the more she eats of them.  She is sensitive to the textures of foods as well but doesn't show the psychological distress her brother shows when forced to try them.  She is responsive to a reward chart for trying foods whereas Brayden is stressed by the thought because he knows his body won't let him get those rewards.

There is a huge difference between these two but there is one thing in common that most professionals seems to miss the mark on.  Both of their eating habits are negatively influenced by commercial and processed foods.  Much of America's diet is atrocious and it becomes harder and harder for kids these days to make good choices.  When you have a picky eater, seeing their peers eat these foods just makes it even harder for them to eat their healthier choices.  Processed foods are addicting and void of the nutrition our children need.  Even if they are fortified with vitamins, there are micro and macro nutrients that you simply can't duplicate with vitamins.  The first taste many toddlers get of processed foods can set them up for a lifetime of struggles with eating.

Think about if your child never ever had a single processed food as a toddler?  Even if they were picky, they would still eat healthy choices because it is all they know.  Somewhere my son's diet took a terrible turn for the worse and then I was faced with the struggle of keeping weight on him versus only giving him healthy food.

So what do you do with these picky eaters?  For my son, he has to have intensive therapy to work on strengthening his oral motor muscles so he can physically eat healthy foods.  For my daughter, food chaining and making only healthy choices available seems to work well.

We are working hard on making changes for our son and this is our current plan.  We have identified the non processed foods he will eat.  This includes bacon, apples, yogurt, baked goods (only made by me though), cheese and apple sauce.  Our newest plan is to only serve him these foods but make other healthy choices available that he can tolerate looking at and might find palatable.  We are supplementing with Grass Fed Whey Protein and a probiotic to help heal his gut and add calories.

For our daughter, we are establishing table rules that everyone has to follow.  We are making sure she has one choice she likes at every meal but then we pick the rest.  I know she won't starve so I'm able to be a bit less relaxed with her.

The other element that is very important for any picky eater is allergy testing.  It is very common to have a child stuck on certain foods such as dairy or breads only to find that they are allergic to them.  Our Brayden is allergic to many foods and we never would have known if I hadn't requested allergy testing.  I wish it was a standard practice at well visits because allergies to foods seems to be the newest epidemic facing our children. But we will save that discussion for another day...

So do you have a picky child?  Did this give you any ideas?

Nose pickers

So I think I finally figured out this nose picking thing.  You see, as I previously explained, my two SPD kids are extreme opposites.  Brayden has an under responsive nervous system while Teagan has an over responsive nervous system.  Can you guess which one is the nose picker?

Teagan of course! That kid is an excessive picker. She even gets redirected at school for this.  If you think about it though, she feels everything so much stronger than the rest of us do. So why wouldn't she feel her boogers more? 

That also got me thinking as to why Brayden can't even blow his nose.  He probably never feels the urge to.  He can have a traffic jam of boogers in there and not even notice.

So there you have it.  If you have a nose picker at home, perhaps they feel sensations a bit stronger than you do and just need to get at it!  Gross!

When SPD returns to school...

Wow was this morning a tough one.  My poor Brayden was up half the night fretting about returning to school. His anxiety began on Saturday when he was able to count the days in his head and realized his break was coming to an end on Wednesday.  Every night he whined about not wanting to go to school.  Last night and this morning he just sobbed.  It broke my heart to send him to school.  It's times like this that I debate whether homeschooling would be better for him.  I do know that it would not be the solution to his problems and here is why.

Brayden has an impairment in his proprioceptive senses.  The proprioceptive system is the one that tells us where our body parts are in relation to each other.  It also signals how much effort we need to move our body, or objects.  For example, when you lift a box, you use this system to determine how much strength you need from your legs and arms to hoist it up.  A subtype of Brayden's motor delay in his proprioceptive system is called Dyspraxia.  This means he has trouble translating sensory information into physical movement, including planning.  It takes significant effort just for him to plan how to move through his classroom to place an assignment on his teacher's desk.  This most significantly effects Brayden's oral motor movement as evident by his eating disorder.  But it also makes it extremely difficult for him to get out of bed, get dressed and physically get to school.  At age 7, we still dress him on school mornings or it would literally take 15 minutes for him to do it.

This effects every part of his school life as it impacts his gross motor, fine motor and oral motor abilities.  Brayden is an exceptional artist yet he can't color inside the lines because his fine motor planning is so poor.  He absolutely hates gym class because he can't coordinate his movements to dance or play sports.  This effects his self esteem as he doesn't want to be different from the other kids.  Brayden's hardest struggle at school right now is math.  This is a puzzle to everyone as to what is causing him so much stress in this area.  He flips all his numbers still and becomes frustrated when told to write "backwards" as he sees it.  He is very good at math as evident from his MAP scores and his ability to yell out math problems at me all the time but writing it is very stressful.

This is just the tip of the iceberg as to why school is so difficult for Brayden.  His body need constant movement throughout the day to keep his nervous system aroused.  Unfortunately, his current class does not afford that opportunity.  Our school has just completed a full evaluation on Brayden and I will get those results tomorrow with a school meeting on Monday.  I am eager to see if he qualifies for interventions to help him.  My heart just aches for him today and I know how hard this day must be!

You've got a lot of nerves!

Literally, the human body has over 7 trillion nerves that make up our nervous system.  It's no wonder that nerve disorders are so hard to diagnose and treat.

The sensory nervous system is so complex that it takes time to diagnose a child with sensory processing disorder (SPD).  In fact, the evaluation process can take as long as 4 to 6 months in a respectable practice, although treatment continues during this time.

So what is going on in my children's nervous systems that has them so "out of sync" with the rest of the world?  Well, interestingly enough, my kid's SPD manifests as direct opposites of each other.  Brayden has an under responsive nervous system.  Basically, it takes him a very long time to bring his body to an aroused state where he can interact appropriately with others, tend to his basic hygiene needs, and learn.  Certain things can speed this up such as loud music, exciting activities (think Disney Land), sour foods, and prolonged physical exercise.  On a typical day, he can not get dressed and ready for school on his own unless extensive efforts are taken to arouse him.  As a parent, it is hard not to label this behavior as laziness or defiance but once you arouse him sufficiently, you see that he is quite capable and willing.

Teagan, on the other hand, has an over responsive nervous system.  Her body is always on hyper alert mode. If you tickle Teagan, it is extremely painful to her.  She can't tolerate light touch.  She also tunes into every bit of sensory information coming at her.  So if the teacher is reading a book and her friend is tapping a pencil and someone else is coughing, she can't remember the story because she is tuning into everything at once.   So to calm down her system, Teagan needs cold drinks through a straw, tactile stimulation that she can initiate, and tight hugs.  I can't give her a light peck on the forehead good night. She needs a big ole smooch!

Can you imagine the fun my household is with these two opposites?  This is just one part of their processing disorder that we are learning about.  Much more to come!

Blog Directional Change

So several months ago, like back in August, I decided to change the direction of my blog.  I wanted to write about something I am passionate about but also something that might help others.  Like most moms, I am passionate about my children and helping them grow to their fullest potential.  Since choosing to become a stay at home mom, I have often felt that I was failing at this.  Through the help of a wonderful professional, I have learned that I was not the one failing, rather it was their little bodies that were not working to their fullest potentials.  That led me to learning about my newest passion.

Sensory Processing Disorder (SPD) is a neurological disorder that manifests with difficulties in processing the sensory information that our body takes in every day.  Consequently, the body's response to sensory information becomes problematic for that person.  Both Brayden and Teagan have SPD and it is my passion and mission to help them be the sensational children that they are every day.

My new blog direction will focus around the trials and tribulations of living with this disorder. I believe that if we had known more about this when they were younger, we would have clearly seen the signs and given them earlier intervention.  I want other moms to learn from this and know the signs and symptoms of this disorder.  I also want to be a support for other parents going through this journey with me.  Children with SPD can be incredibly difficult to parent but also incredibly remarkable in their way of navigating life's challenges.

My initial plan was to go into a complete history of each of my kids to show where this possibly began.  I've decided that is a task to huge to accomplish and it is more important for me to write and process what is going on with them now rather than in the past.  So if you decide to follow this journey, you will learn tools for dealing with my kids and other children with SPD when they struggle but also the fun they have when attempting to cope with this disorder.

So whose with me on this journey?