An Autism Diary

A day in the life of David Hartley

Happy Freedom Day!

happy-4th-of-julyToday, all over the world, is the 4th of July.  Here in the United States though it’s so much more.  It’s a holiday here.  A holiday in which we celebrate our nation’s birth and our independence.  We also celebrate the freedom of our nation and the freedoms we as individuals have been blessed to live out ourselves.  Yes, the 4th of July is a pretty big deal here in the U.S. and many joyous and lively celebrations erupt all over the country with many celebrating for up to a week long or more.  Freedom is a powerful thing.  Independence a valued treasure.  Who doesn’t want these things in their lives?

As much as I enjoy sharing this holiday and it’s meaning with my children, the years have impacted my view of it quite a bit.  At least on a personal note.  I won’t get into the debate that could be rightfully started about whether our country is still as free as it once was.  There are valid points on each side of that argument and if it was to be brought up and discussed, it would deserve it’s own platform.  Not just a guest spot on a blog meant to be about something else.  I would like to go deeper on the concept of freedom on a personal basis though…

imagesCAFSW8ADFreedom can have a lot of different meanings and manifestations when brought down to the personal and individual level.  In fact, it may very well be safe to say that it can be as varied and diverse as the human race itself.  For some, freedom might be seen in the form of breaking out of their own shell of shyness.  For others, it could be surviving the after affects of abuse and stepping out once and for all as not only a survivor, but as someone with a new beginning.  A new lease on life so to speak.  For still others, freedom could be expressed in being able to live out their dreams or by changing their life’s course by escaping the mundane.  For some, freedom can even simply be the chance to finally settle down and find some stability in their life for once.

Freedom can be a physical thing too for some like for a prisoner, held behind concrete walls and barred up doors for years, finally being led back out into the sunshine.  Or it can be a spiritual one like for the person who finds enlightenment, hope, or even simply comfort in a new found faith.  There are so many ways freedom can be both expressed and felt in this world.

For a young boy in southern Kansas freedom is still a concept barely understood and an emotion briefly and rarely felt.  Trapped in more ways than one though, he still lives his life out with more passion than some of us could truthfully claim ourselves.

untitledSometimes he is painfully and frustratingly aware of his captivity.  He can’t speak well enough at times to express his needs and wants to his caregiver.  He struggles to understand social cues enough to be able to make and keep a friend his own age.  He fights against the chains and bolts and locks found all over his own home and on his front door.  Knowing only that he just wants to be outside in the sunshine and fresh air, running free and wild and playing in the dirt and grass.  He’s still blissfully and painfully unaware of the dangers his sudden and constant running off can bring…

Other times, he seems to be blissfully unaware of the trappings of his world.  Happily humming and stimming to himself in his own little world while those around him either go on with their lives or turn to make jabs at him, teasing him mercilessly.  Or dropping down to play in the sand in order to close off the extra stimulation at his favorite place because he can’t handle any more.  Even though that means he’s missing out on one of his favorite parts… feeding and petting the animals.

His ideas of danger and his comprehension of safety tends to differ greatly from the others around him as well.  He will happily dart out in front of cars and run out onto the busy streets.  Or even into vast and unknown fields of grass and corn and other things taller than he could possibly stand, even when on tiptoes.  He is happy and free as one can be or feel in these situations, but he also is in the most danger.

scared-childOn the other hand, he fights fiercely against the confusion and fears when his mommy has to hold him down for the doctors dressed in white with yet more needles in their hands or with desires to wrap that puffy thing around his arm again or stick that uncomfortable stick in his mouth.  You see, he doesn’t like tests and doctors and hospitals.  He’s afraid of thermometers and blood pressure cuffs.  He doesn’t understand the purpose of the scales or the importance of the blood being drawn or the IVs being administered.  He only understands the pain he feels and the frightful feelings climbing inside him.  He’s only made worse from the mounting confusion that comes from mommy seeming to not understand.   Why won’t she let him break free and run away?  Why won’t she rescue him??

Carnatine Deficiency, Metabolic Disorders, Severe Autism, Seizure History, Severe Cognitive Delays, Inept Social Skills, and Delayed Development and Speech are phrases that hold much and sometimes dark meanings for those of us looking out for him, but in David’s world, these are just unfamiliar jumbles of sound that seem to bring on more confusion and more pain more often than not.  And when they are not doing that, he still sees the change in the faces around him when these set of jumbled sounds are heard.

David in sandDavid’s world is so different from most of ours that sometimes it is hard to wrap one’s mind around the total concept.  It is so difficult to truly understand what goes on inside his head or to be able to comprehend what he is feeling from day to day or from moment to moment.  Yet, with all these things, he still lives his life with so much love, so much peace, and so much passion.  He is a true inspiration to watch yet at the same time, one struggles to hold back the tears as well.  It is painful to watch him be his own worst enemy at times as you struggle to gain control of his body so he can’t punch his head anymore or bash himself into walls and floors.  It’s heart wrenching to see him attempt to stop the pain only by causing more, simply because he can’t understand he’s the one causing the pain in the first place.

David in sand2All of this is why, as a family, we have set out on this journey to get David a service dog.  We are pursuing his freedom.  True, the dog won’t be able to solve all his problems and definitely won’t be able to cure his Autism or other struggles.  But he or she can be his friend.  A well trained dog can help provide the protection needed for him to safely play outside on a regular basis or join his family on shopping trips without having to be so tightly held onto or “imprisoned” in a shopping cart.  A faithful and constant canine companion could offer comfort for him in times of overload and peaceful assurance of safety when he’s scared.  The dog could provide a stable base to retreat too in times of confusion or exhaustion or even simply be there to steady him in unfamiliar locations, big crowds, and uneasy situations.

In other words, the dog could give David his freedom.  David could gain some independence of his own.  And is there anyone out there that wouldn’t want the same themselves?

This 4th of July, wherever you are and however you choose to express or define it, may your hearts soar and your day be filled with celebration.  And may we all let freedom ring loud and clear and may all our dreams be freshly renewed!  Happy “Freedom Day” everyone! : )

Let Freedom Ring

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