Tuesday, August 18, 2015

Autism ..Adulthood...Navigating stormy waters.. Yikes your compass has gone missing.

I have no magic bullets or silver bullets to ward off hungry predators destined to take down the unprotected or unaware. I am, after all,  only a parent. and I say that tongue and cheek since I believe parents are the singular greatest and most powerful force in the universe.

Parents effect change, stimulate growth, encourage conversation and promote opportunities for their children and in this case, their adult child with autism or in the case of many parents their adult children with disabilities.

My life has been forever changed by the sets of circumstances I have found myself presented with... navigating these stormy waters, floating to the top and maintaining bouyancy  is no laughing matter.  It can be a screaming matter - a crying matter - but no easy matter.

The demands of the job are not contained within any personnel manual and the  hours on the clock far outweigh the hours off the clock.   There is no clock to punch... no EASY button.. The answers are not forthcoming and the adult with the disability provides few clues to guide the solutions.

For many, myself included, autism was ONLY the tip of the iceberg... traumatic brain injury, seizure disorder, gait problems, toileting problems... only compounded the treatment, the response and the outlook.  How does one plan for something one does not understand? There is not a simple blood test, a snap diagnosis and a fabulous treatment strategy and voila  resolution of symptoms.  There is a guess. There is a trial of this and a trial of that, medications, behavioral strategies.. tried and true solutions? NO.

Parents and caregivers are in for the long term ride of their life... not much rest.. not much relaxation and far too much stress to deal with on a consistent basis and far too few  strategies to relieve this stress.  Services are different in each state, county and territory. Services are based on budget, monies dedicated to this cause, and the release of this budget each year. There are no guarantees and this just adds to the stress load.  You are expected and wish to care for your loved one, but this is NO easy task and it is expensive and convoluted.

Just maneuvering social security ( we were denied on the first round due to his lack of a "work record"). He had no work record as he is totally dependent on adult supervision just to function, eat, toilet himself etc. That had to be resubmitted and adjusted and eventually approved.   Guardianship, power of attorney, medicaid application, budget applications.. this is not for the faint of heart.  This is all sandwiched in between caring for this individual as well.

There is no "off time" or "paper work down time."  This is not a "real job" in the sense of having a lunch break or paid time off. All of this care, love and hard work has to be accomplished to keep the individual safe and monitored,  and when the physical tasks completed then and only then (and it may be at midnight) that the paperwork part of the job can be undertaken. Phone calls, waiting for messages, more phone calls and it is endless.  Taking care of the paper work portion of caring for an an individual with a disability is a job unto itself.  There is no one to call.. no one to ask... trial and error.

A full time job could be just the advocacy/paper work part of this process. If hospital stays are involved, more paperwork, more phone calls, more stress.  which reminds me the insurance company never called  me back about dental coverage and that was a week ago...

I created my little paper company to create employment for Andrew, since I knew there was not now nor would there ever be a job for him in the outside world. He is far too complicated. Far too needy and frankly scary for most people to want to deal with effectively.  He can have outbursts, behavioral melt downs and frustration. He can also experience a seizure.  All of these things complicate delivery of care. It takes two of us for the most part to care for him, sometimes three.

This last year has presented even more challenges in terms of employment for myself and his dad, some health issues and things outside autism that effect delivery of service. We are told we are "lucky" to have the services we have, but most days I don't feel that "lucky" to have a son who suffers in the way that he does. But I AM lucky to have him in my life. I have learned many lessons in tenacity and love in dealing with all of those things that surround his care.

There are not too many filters that soften the blows for parents and/or caregivers to ease their stress or their burn out. If family members support this individual you are truly blessed. I believe we have been checked off  on the friendship.family imaginary questionnaire in the box labeled "too complicated" and people have just moved on, I guess figuring that we'll get by or we'll figure it out... and so we do.

This is a common complaint among families of caregivers... What happened to the support? Where are friends or family members? Ahhh they drift away.. They mean well, but this is a long bumpy ride and few can maintain the tenacity it takes to continue the journey. I understand ....love fuels the journey and it is the only fuel on board.   Without love you do not survive this quest.

For you see, mental illness, autism, muscular dystrophy, Downs syndrome, traumatic brain injury, epilepsy, Alzheimers etc.  they do not resolve - they hang around and visit for the life of the family and it is the rare and treasured individual who can take this journey with you and  your son or daughter.  If you have these type of people in your life, hug them daily.

I feel each year I have turned another corner, tackled another obstacle, forged a new road, created a new strategy..hoped a new hope, and for the most part I try, but the road is isolating and difficult to maintain on your own steam and strength.

I finish off this summer with a bit of exhaustion, a trickle of hope and a wisp of a prayer for some relief, laughter and joy.

The show and the shop must go on... and despite the exhaustion I vow it will....

Cate :)

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