Adam Dzialo

Adam Dzialo
Our son, Adam Dzialo, age 30

Wednesday, June 29, 2011

Life is Short and assorted other Bullshit"isms"

       Life caring for a severely disabled son is not a cake walk, nor a stroll in the park.  Neither is it analogous to caring for an old dog, a rebellious normal teenager, or a demented, elderly parent.  Why might you ask?  Well, old dogs are supposed to be incontinent, regular kids are often all-consuming pains in the ass, and the old folks are supposed to act like old folks.  A twenty five year old who is non-verbal and non-ambulatory and a lot of other "non" stuff falls into a totally different category which defies typical definition.
       People who should be sociologically close often avoid all attempts to be useful or helpful.  They view you as strong, and capable and able to handle any emergency, be it a long term or short term emergency.  Their view is skewed in this inept direction because it provides a convenient rationale for never stepping up to the plate.  The one thing that these "people who should be sociologically close"  have and readily offer is a litany of platitudes and meaningless expressions which serve only to piss ya the f..k off.  Here are some of big offenders:
       Pray for miracles & Ask and you shall receive:  Yeah, right!  First, you have to believe in a personal god and I don't.  Second, you have to believe in miracles, and I don't.  Did you ever hear about the miracle where god re-grew an arm that was amputated above the elbow?  Or how about the eye that was poked out by a stick and re-grew?  And the asking/receiving thing?  I've been asking to hit the big lottery for years even promising to give money away...haven't received anything yet.  Is 13 years of asking not long enough?
       I don't know how you do it, they'd have to put me in a rubber room:  You do it because you love your son and because it's the right thing to do.  You sociologically close people could learn to do it for a few days, so that we could get away without the kid for a weekend.  We could teach you, you could learn, it's not rocket science.  How's this: Get Over It! Stop being a marshmallow 'fraidy cat and step up, we deserve  a weekend off every thirteen years.  Don't we, sociologically related people?
       Well, it could be a lot worse!:  You're right on this score.  The kid could be more crooked than he is, he could never smile, he could seize and vomit all day!  So right, it could be worse, but still it's pretty tough for parents in their 60's.  We could have had to make a decision about pulling a plug, but didn't have to, although some people have said it would have been better if he just checked out.  A preponderance of idiots on a small planet?  This paper if just for you. (on the right!)

       Calm down, Time heals all wounds, Life is short!  The trinity of phrases which are often offered when people's blatant indifference toward you and your son rankles your soul.  You either confront them or walk away from the negative energy. Everyone wants everything to be mellow and superficial.  Well, I have not the time for mellow, superficial folk.  I have no time to gossip or spread rumors about sociologically bonded people.  I will not calm down in the face of indifference; time will not heal the wounds of indifference; and, life is not is endless.   So be a part of the journey and move forward with us or get the hell out of the way.  Help, be positive and be supportive.  If you can't do all three, stay away.
       God helps those who help themselves!    Not true....
       You need to get more help!  So right, my sociologically bonded get off your ass, come down for a week and take care of us so we can take better and more relaxed care of Adam. You have no idea about finding, hiring, training, trusting someone to care for a kid who can't move nor speak.  Applicants are often dirty, stupid and chronically unemployed and chemically dependent.  It's easier to get a dog-sitter, but not by much.  We have gone through more care-givers than you have moles.
       I know how you feel! I know what it's like!  Unless you are part of that .05% of the population who walks in "our shoes" or "moccasins" you do not have a clue nor will you ever.  I would, however, like to give you a brief experience.  Please ask.....
       Blood is thicker than water! Blood means family and relatives, I guess.  Well, blood coagulates, blood thins, blood clots, clots cause strokes, blood gets infected, blood gets sucked by vampires (real or psychic).....water, on the other hand just gently  flows....I'll take a long, cool drink of water, thanks.
       You should join a support group!  Ok, will you mind my son while I am commiserating with other parents of severely disabled kids?
        Every cloud has a silver lining! Look on the bright side! Yes, I have become a deeply spiritual, god-fearing, humble, loving, compassionate human being because of the depth of my experience.  Actually, my silver lining is the development of a keen bullshit detector with regards to the hearts of others, especially my sociological unit.
        Get over it! Get on with you life!  Up yours, and I wouldn't trade my life for anyone's. I am moving on with my life daily.  I could just use a periodic reprieve.  We all need a break from ourselves.
         I'm sure that parents of severely disabled kids have faced these and many other platitudes as excuses for avoidance of involvement with people like us.  It's probably better to say nothing that to say something which triggers and irritates.  So just to be on the up and up, this is a partial list.  You can help me by adding more.

The following are my rebuttals to those who have incensed me with trivial statements about life:

As a dog returneth to his vomit, so a fool returneth to his folly.
 Bible - Proverbs 26:11

Every ass loves to hear himself bray.
 Proverb of Unknown Origin



  1. Well, I could spend many moments recounting further examples of meaningless, empty platitudes - I do share this life with Adam and Phil and, for some reason, people feel a need to utter what they perceive as comforting words as we face this big life challenge. Saying something (rather than doing something) - makes the "exit", the "departure", the "return to living their own life" more palatable. I did read something today which I would not call a platitude but a life truth and I LIKE IT - from the Dalai Lama: "People inflict pain on others in their selfish pursuit of happiness and satisfaction. Yet true happiness comes from a sense of brotherhood and sisterhood. We need to cultivate a sense of universal responsibility for one another and the planet we share." - wise, wise man. Scrap the platitudes and listen to the wisdom.

  2. Phil and Sharon, what a brilliant post! Sharon I couldn't agree more! Why do 'people' even say them?

    I love this post. My favourite photo is the cheese grater toilet paper I have to say! Maybe we could go into manufacturing them and hand them out to people as prizes (for saying the phrases), we could even put a ribbon on it "Bullshit" and hand it to them.

    You sum it up perfectly 'readily offer is a litany of platitudes and meaningless expressions'

    Oatie as you know has mild CP, and 'people' say these expressions right in front of him and he HATES it! People talk about him right in front of him like he's a piece of meat!

    'often avoid all attempts to be useful or helpful. They view you as strong, and capable and able to handle any emergency, be it a long term or short term emergency'

    And when there are people who are PAID by the state and CAN help, they chose NOT to and don't help willingly! Look at my recent operation, (they knew I had 8,6 and 3 year old) the nurses wouldn't even try to arrange the schedule for extenuating circumstances (they gave me the crappiest time) (they do the order of operations sheet the day before, so all they have to do is put in a phone call, not like that they do anything special). Not even when, I told them that the ONE person, my friend who stepped up to look after Oatie for the day for me, then couldn't as it would be unfair to ask her to have 7 kids, 6 under 10's in her home one of which would be Oatie. Only After I went on and on and on... did she then get off her ass and ask! Her knee jerk reaction was, "Oh but the diabetics go first!", fine, I can understand that, they would have blood sugar issues.... but what about people who have dependent dependents?, we can't have surgery then because you don't give a damn?)

    I would take water any-day too!



  3. Love this post! Phil, I have tears in my eyes from laughing! Sharon, I love the quote you posted! Mel, great idea with the toilet paper roll!

    I too am SOOO sick and tired of hearing ALL these phrases SO often!

    I was at a party last weekend and had many people come up to me and ask "How do you do it?"...I simply said, because I love my son (son's) more than anything in the world. I asked...What would you do if little Johnny, god forbid, would have a brain injury or come down with some rare illness next week? Most had no words. I said, next time you see Cj look at his blue eyes and that smile, how could you not do it!

    Oh, and "Well, it could be a lot worse!" Come on, it's bad enough...How can you even say this?

    I am lucky to have many friends on board. Notice I say friends...Is blood thicker than water? Can't stand that phrase! I'll take the water too, thank you!

  4. I love this post, Phil. It's a balm to my soul to find typical folk who say these things.

    Lots of people say we autistic folk don't understand the usefulness of social forms, due to our impatience with empty platitudes that aren't followed up by, you know, action? And then they say that we don't empathize properly, because we'd rather do something concrete than stand around saying, "oh-I'm-so-sorry-that's-just-awful."

    I tend to display empathy by doing something useful. Imagine my surprise to find out I've been doing it wrong! Of course, the people I help out haven't complained a bit...

    Love your outrage, Phil. It makes me feel right at home. :-)

  5. Phil,
    You have reason to be outraged of that there is no doubt. I think people are insensitive as a way of putting up a barrier out of fear that this could happen to them or their children. It is not right, but it is a reality. Society's values need to change for sure.

    My child is very high functioning on the autism spectrum as you know. This just causes some family members to think I made up the entire diagnosis or better yet that she is getting better because she is "outgrowing it." They don't see the struggles she faces or how much downtime she needs for the heroic effects she makes to fit into an intolerant society. Nor do those who avoid us see how it hurts her.

    Adam is a lucky young man because he has two parents that make huge sacrifices for him and love him dearly. I hope one day you both have the support from those around you that you deserve. Supportive friends is what kept me going during the worse of times and thankfully those same friends are still with us. You have my virtual support, but I know that does little to help.
    Hugs to both of you,

  6. Love it --

    When people say, "it could have been a whole lot worse," I like to respond with, "Yes, and it could have been a whole lot fucking better."


  7. Mel: I'm not supposed to make you laugh, but some people are a few can short of a six pack or the light is on but no one's home...perhaps you should immediately claim to be a diabetic next time.
    Lisa: That drink of water is quite refreshing and sustains for quite awhile...only wish someone brought a fresh bottle more often!
    Anna: Just trying to match the mood of your frog blog!
    Rachel: People who claim that autistic folk lack empathy have never spent more than a minute with one. Glad we share.
    Sue: Thanks for the kind comments. I have always believed that if people actually saw and heard the pain of our kids, they would have to move out of a comfort zone which isn't easy..but one you do you open a door to a new world...
    Elizabeth: I will add your retort to a personal litany that I'm developing.

  8. i understand what is the situation but i cannot feel the situation cause this is not in my hand.This is the beauty of life and this is the bad thing of life.You cannot even think of what is going to happen with you after this very moment.I like the spirit u have in you and i am inspired.This blog is the best blog i have ever seen .This is called dedication.This is called the revolution.Thanks!Bravo!

  9. Himadri
    Thanks for the very kind and generous comment and encouragement. Warmest regards....

  10. I have followed you
    Please follow me too...


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