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by Joe Reister © 2016


Autism sucks, and it’s easy to see why. 


Autism Spectrum Disorder mucks up a person’s nervous system at a very early age and is not a lot of fun for anyone involved.  A toddler on the spectrum can go from curious about our world to confused in their own in no time at all.  Parents gape at the sudden downshift in mental and physical maturation, unable to understand their children’s new perspective and lost as how to help.  It is horrible for the children, and it sucks for the parents and family too.  Every day childcare explodes into constant confusion, anxiety and more work on all levels than anybody saw coming.  Parents do it because they’re parents of course, but they need a break to stay sane and maybe even have an adult beverage.  Because while all kids are great no matter what, autism still sucks. 


One of the suckier parts of autism is that nobody really understands what is going on.  Doctors struggle with the cause, much less the cure, therapists experiment with all kinds of treatments, and teachers do their level best, but they are all kind of in the dark as to what is best.  Yet parents take all the advice they can get, lapping up every diagnostic tip, exercise regimen and lesson plan that might help their children even a little bit.  They want desperately for their kids to get better, even if the science behind all of it is still soft at best and non-existent at worst. 


So, frustrations abound, most obviously with those on the spectrum.  The autistic can suffer from a wide range of disparate symptoms, including but not limited to: massive sensory issues, terrible physical coordination and a scrambled mental focus, sleeping troubles, gastrointestinal/dietary complications and repetitive physical behaviors, and debilitating communication and social problems that means they can not tell others what is going on much less ask for help.


That makes the most autistic extremely dependent on others and leaves many parents overwhelmed.  Nobody wants a sick child, particularly when they can not imagine what their kids are going through or how to fix it.  Yet parents need to act quickly and decisively if they want to help their kids cope with the disorder much less make things better.  They need to accept the condition quickly, get an official diagnosis, sort out the different advice from doctors and therapists, start whatever affordable treatments are available and enroll their kids into a school and/or special needs program as soon as they can.  That means dealing with medical officials, insurance companies and school districts who will theoretically provide all the help a child needs, but in reality will stubbornly protect their bottom lines.  And bottom lines get noticed very closely when the disorder costs a literal ton of money to treat, has no simple solutions much less definite cures.  Parents need to fight every day for every available resource, and then do it over and over again because their children’s needs and possible treatments will likely change even if the available money remains the same.


And parents and families will have to keep making those changes as they deal with autism.  Spectrum kids and adults require services no matter where they live, and many families feel the need to move to get better services, including to different school districts, towns or even states.  Some parents may even switch jobs for higher pay or better insurance, while other parents may end a career to provide the necessary, possibly constant care their autistic children need.   


The small stuff counts too.  Difficult to get doctor and therapist appointments have to be made and kept, insurance claims need to be filed accurately and on-time and a never ending dialogue with school officials from teachers to therapists and social workers needs to be cultivated and maintained.  Parents need to dig deep for the patience to deal with all of this official stuff, and then dig even deeper for the unofficial.  Other kids and adults will stare and question why those on the spectrum flap their arms, scream out their concerns or just plain run away from the overwhelming world they experience every day but is just the norm for the rest of us.  Parents will find themselves seeking out and settling for the comforting and reassuring world that their autistic kids make for themselves.  They will get used to the local restaurant with the particular chicken nuggets, lose hours of rest because their child still sleeps like a newborn or just put up with the other idiosyncratic habits that autistic kids have because that the only option available is insanity. 


So, the whole experience is constant, ever evolving and well worth it at the end of the day.  Yes, autistic kids and adults have a lot of issues: a whole lot; but they also love, live and laugh like the rest of us.  They adapt to their unique perspectives and so do their parents, family and friends, with the whole experience getting easier with time and practice; just like life does for most of us.


I know, and I’m sure you saw this coming, because I write from experience.  My son received an Autism Spectrum Disorder diagnosis at about eighteen months old.  He has massive sensory issues, terrible coordination, worse social skills and has barely slept by himself since he left the crib.  His mother and I are the closest people to him in the entire world, and we have only had the most rudimentary of conversations with him.  But it is all good.  He has told us that he loves us, has a beautiful smile, gives great hugs, is kind and gentle to his younger sister, lives life to the fullest, and is clearly happy most of the time.  He loves swimming, videos, travel, swing sets, his family and oh so many chicken nuggets and fries that we’ve increased the value of Perdue and Ore Ida stocks.  I do not regret for a minute giving up my career to take care of him and his younger sister, who is also pretty awesome in her own way, and it is about the best life I could expect.


Yet I need a break.  And I’m not talking coffee either, which I use to medicate away my normal, restless nights of sleep.  No, autism is a lot of work, day and night, 24/7, every day of the year and possibly for the rest of my life.  So, I like to get away for a few hours on Saturday night when a long term and trusted babysitter comes to watch my son and daughter, and my wife and I get out of the house for an adult beverage, involving alcohol, always in moderation and never in too much anger, but definitely away from my kids so that we can catch our breath, have an adult conversation and take our minds off of the autism stuff, leaving everyone happier at the start of the new week.


Because while autism does suck, it can still be a good life, and occasional adult beverage helps.




All material copyrighted by Joe. Please contact him at joe@joestories.com if you have any comments, queries or questions.
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