Adam Dzialo

Adam Dzialo
Our son, Adam Dzialo, age 30

Sunday, September 4, 2011

looking for CONVERSION STORIES.....

       We bloggers, who have compromised and disabled sons and daughters, write for a variety of reasons: some conscious others unconscious.  We hope to share our stories, our commitments, our joys and our moments of exasperation with whomever will listen.  We hope to inspire newbies to the world of disability and to learn from the loving care-giver pros.  We hope to engender an understanding of the human face behind disability and the indomitable spirit of the disabled.  We confront those who ignore, abuse or are indifferent to our disabled children.  We write to preserve a semblance of sanity for ourselves and self-imposed respite.  Some blog for the pure joy of writing. These are all conscious acts.  There are many other reasons.

        We write on another, perhaps less conscious level, and I could be wrong and only represent myself.  I believe that some of us (me) attempt to convert, to educate and evangelize.  We become missionaries not of religion but of disability, a church we worship in.  Too often, however, we find ourselves unsatisfied and we readily acknowledge that we are "preaching to the choir"; evangelizing the saved.  Those who we hope to reach have long passed consciously into the state of being unconscious. They have become unavailable for baptism or initiation.  The question always remains:  is it ever possible to change the heart of those who should deeply care, but do not?  Is it possible to bring friends into the lives of our children?  Is it possible to move a person from a position of being uncomfortable with our children to embracing them wholeHEARTedly?  Selfishly, I wonder why people never offer to care for Adam for a weekend so Sharon and I could get away?  I mean people all know we have never had a vacation without the boy for 13 years!  No pity, just wondering....
        I am ready to believe that I could convert masses to Christianity, or Islam, or Judaism, or even Wicca or even atheism more readily than I could convert a person to care about Adam (and the many other Adam's)  and embrace him in a human, loving, concrete way.  I have been unable to convert fear into open arms, to convert staying away to being present, to convert ..... in anyway.  Gentleness, patience, guilt, morality, education, family duty, a willingness to teach and explain have not worked.  Asking directly has never worked.  My batting average is .000 and that would get me thrown off the team.
      I would absolutely love to know and read stories where change of attitude and action was really affected. I have heard, at funerals of very compromised children, close family and friends stand and wail and bemoan their lack of presence because there was so much to learn from these kids, a missed opportunity...a tad bit too late.  Regret at the gate of the crematorium is lacking and empty, but perhaps self-satisfying.
  If you have affected significant change in a person through words, writing, mentoring or any other medium, please share.  I would love to know how it was done, how it affected you life, how it affected the other person's life.  Comments, guest blogs, anything on this subject are so welcome.  I know that many of us would like to learn about the keys to the kingdom.

Just wonderin', that's all............"They shoot horses, don't they?"


  1. Phil,
    I hope you are okay I feel your frustration, and I have to tell you that you and Sharon have touched my heart with your story and I believe there must be others you have touched too. When I started my journey to change the world I decided if I only touched one life it would be enough. I believe I have accomplished this because my friends talk openly about Asperger's and bullying now and they support us. I have cousins who now identify autism traits in preschoolers they teach and they ask me how to approach the parents.

    I hope others will respond and let you know how they have been changed by reading your blog posts and by Sharon's book. I am sure Adam's story touches more hearts than you know.

  2. Thanks Sue! I'm happy to know that Adam's story has touched your life in a special way as your life and Miranda have touched ours. I am daily impressed by the lives and commitment of fellow bloggers with kids who are disabled along the spectrum of disabilities. They are an inspiration and I know that we also inspire.
    My wondering comes from the question about whether our stories affect the lives of friends and relatives who are not touched by these issues and how do you draw them into yours and your children's lives. . . how do you get them to embrace what you have learned? How do you "convert" the relative who has kids Adam's age and stays far away for years and years at a time?
    You did sense frustration because our choir gets "it" and I am wondering on how to help those who can't sing get it?
    Eric, one of my blogging buddies from Israel, wrote a long response which I'll post in a few days as a guest blog...he has some great insights to share.
    Thanks for your understanding!

  3. I think this is a really important issue Phil. I don't know why people are so afraid to become part of our lives. I hope you get some responses because I would really like to hear about this from other people. In our case we lost friends after our children were born. Also, most of my family shy away from any real commitment to help. Some family members even forget to acknowledge Royce when he's in the room - and if he's not in the room then he might as well not exist as far as they're concerned.

  4. I agree Marcelle; I am searching for answers and for ways to involve people with our kids. Always a stonewall...I too hope that someone has successes that they can share. It's so important that our kids feel treasured...regardless of their perceived presence and ability to interact...they feel at a very deep level a sense of love or a sense of indifference. Still working....

  5. Phil what a fabulous post! I don't know if I have changed people or not. Like when you think that you're getting somewhere with educating humanity... or change one group, another pops up and you start your plight all over again, it really does remind me of the hammer with pins popping up and having to mallet them, and then the people you least expect to "turn" on you do. Saying that after Oatie's bullying of last year at preschool... so far, nothing recurrence yet.



  6. Well, Mel, we may not change the world or anyone, but we do provide a cyber support for those who share in the life in the world of caring for a disabled child....that counts for a lot!


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