Thursday, November 1, 2012

Inside - Outside - On Top of the Box

Living inside of the box, thinking outside of the box, and landing on top of the box with two feet in tact, is no simple matter.  

First of all, what is this box?  Is this a puzzle box?  It's not just any ordinary puzzle box.  This is a box that does not have a cover picture of the finished puzzle on top.  This box does not come with any type of instructions.  What this box does contain, is many many little puzzle pieces that have the potential (if connected with care) to change the world.

Living inside the box

Living inside of the box is what most of us do daily.  Being inside the box means that we have a secure structure in place.  We know the rules and we can follow them well.  We have our daily structure that's filled with routines and breaks (hopefully).  We take care of ourselves and we take care of our children.  Most often it's the other way around.  We go to work; whether that be in or out of the house, we come home, have dinner, some type of unwinding to the day, some social time during the week or the month, bed time routines, sleep/reboot and start all over the next morning.  Living inside the box once our life changed, meant that to do so, we had to put some sort of blinders on.  We had to become more family centric, manage our priorities, and not get too over-extended.  Our energy was limited and it had to be channeled into the necessary ports.

This was our life up to the summer of 2009, before Jake's autism diagnosis at the age of two and a half, just a few weeks after the birth of our twins, Max and Miriam.  This was the time frame just after Alex's return from his deployment to Iraq.  It was only the second year into our military life, so everything was new.  There were no training wheels for this kind of a ride.  

To make matters even worse, we had no family that lived in the same state.  Everyone was not even a driving distance away.  We were in San Antonio, Texas - the middle of the country, yet felt very much alone.  Little did we know at the time, that we were not alone.  Not even hardly.  I remember going on our first Walk for Autism that year, and getting blown away by the hundreds of people that were there to support their loved ones.  Whole offices came to support a child of a co-worker.  The entire fire department was there to support a single child.  That child, to many folks, represented many children; our children that were everyday heroes coping with autism.  I remember being touched to the core by that.  That day will stay etched in my memory forever.  That walk, to me, was a huge success, because there is strength in numbers.  It was a success, because every individual represented one piece of a very large puzzle.   

Thinking Outside of the Box

Thinking outside of the box is something we have to do in order to solve problems right?  Solving problems is what some people get paid the big bucks to do.  This is something that parents of autistic children have to do daily.  It's basically fighting your instincts to do something the way you've been taught to; the way common sense tells you to do.  The challenge here is that even though families coping with autism have to go into the mode of living inside the box, they have to do so while they simultaneously think outside the box.  This commonly takes place when parents are wiped out and at their wits end.  It's like being a magician without any training.  You always have to have another trick up that sleeve, because plan A is not usually the plan that gets approved.  

We can not super impose a structure that we think ought to work on a child that is wired differently.  We have to try to understand what they are thinking and feeling.  We basically have to reprogram the way that we were taught to do things, and break down a task into many parts with lots of repetition, in hopes that something will click.  

Children with autism can be incredibly smart, but keep in mind, they just learn differently.  This is where you hear lots of parents say that their autistic child has taught them so much.  These children teach us how to teach them.  This is incredible!  They teach us to stretch the limits of our patience, and pull out strength of character from places that we didn't even know existed inside of our humble being.  They teach us how to be sensitive to an infinite degree, and if we can be that way with them, that means that we can access these qualities in other relationships as well.  These children often excel in areas and fields that require the utmost attention to detail: music, science, computer programing and engineering.  They can contribute an unbelievable amount of talent to our society, if we help them reach their full potential.  This is done from early childhood, by getting an autism diagnosis and getting plugged in to the necessary resources.  There are variations to resources to some degree depending on the specifics of the diagnosis (to include but not limited to): ABA therapy (Applied Behavioral Analysis - the most common therapy to help with symptoms of autism), Occupational Therapy, Speech Therapy, and in our house-hold, equine therapy (horse assisted therapy).  See more on Jake's experience with equine therapy in my post: Horses of Hope

Standing On Top Of The Box

We are all a part of the larger puzzle.  Until there is a cure for autism, there will be no cover picture on this box my friends.  Autistic children become autistic adults.  It's a life-long condition.  The 1 in 88 statistic will soon enough get down to 1 in 50.  It's not if, it's when.  At that point, almost all of us will know a family that is coping with autism.  What then??  This is the reality.  We are facing a global situation of epidemic proportions!  But on a brighter note, you can make a difference.  You really can.  By actively placing your own puzzle piece into the puzzle, you are personally helping.   It doesn't even take much.  Reach out to families that cope with autism and let them know how much you care.  Offer to help in any small way.  Teach your children kindness and acceptance, and the dangers of bullying.  

When we stand hand in hand together, we can see that picture on top of the puzzle box much more clearly.  The bright light that shines through the still-missing puzzle pieces asks you to join us.  Join our cause.  We become uplifted and start to care even more deeply.  We want to make a difference and raise awareness and acceptance.  We want to become the voice for our children, who can not yet speak and advocate for themselves; their fledgling wings are not yet strong enough to leave this nest.  Let's help uplift the children through their teen age years and into adulthood.  Help them reach their full potential of living meaningful and beautiful lives.  After all, isn't that what every parent wants for their child?  We know that our personal efforts can be a very powerful thing.  We may not be able to change our child's autism, but we can change the world to become a more accepting place - a place where everyone can contribute to society.  We can help the world embrace the autistic child with cradling arms of love.

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Creativity with Autism, Twins and Military Adventures 

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  1. Inspiring words LiLy. Thank you for opening our minds...

  2. Thank you my friend.