Adam Dzialo

Adam Dzialo
Our son, Adam Dzialo, age 30

Friday, October 28, 2011

Special People... yuk!

       My son is a "special people"!  Well, that's what someone said.  In reading a friend's blog on accessible recreation, I was struck today by a comment which was left by a troll to a post on summer camps for disabled kids.  I simply wanted to strike back at stupidity and mindless PC.  Here is the comment:


Sounds wonderful! I believe it is important that every kid have access to camping and is exposed to our wildlife - disabled or not. The fact that the camp accepts special people under their care would give any parent peace of mind to leave their kids under the camp's care.


       What utter and unbridled bullshit!  Adam is not a "special people."!  He is severely disabled, medically complex, a spastic quad, non-verbal and non just about every medical word which could describe normality.  He is always happy and smiling and I love him more than life itself.


"Special Persons" Camp Policy
        Now what camp would want the boy for a couple of days?  I don't know a soul that would want the boy for a couple of days, exceptin' me and the wife.  Does camp prepare pureed meals and feed a kid for an hour per meal? What does it mean if he spits his lunch at you and smiles?  Does camp clear a mucousy throats and airways that the boy perseveres and plays with.  How does the camp get him around when he arches in his wheelchair?  Do you know the long, extensive process of toileting the boy (I'll skip the detail). How would you know if he's in pain?  thirsty? pissed at the program that you put on the tv?  How would you regulate his temperature?  Would you keep his schedule of supplements and cell salts?  What about cold laser treatments, acupuncture, shiatsu, and ABR exercises?  Oh, and what would you do when he hyper-ventilates?  This ain't no "special person"!  He isn't a "pillow angel" or any other angel.  He isn't god's gift to me or anyone.  Frankly, he's a pain in the ass, but I would readily give my life for him.
        Now, again, what camp would want this boy for a couple of days?  Accomodate, ADA, Sped him?  Give him a quickly rounded up aide?  Maybe a full time doctor or nurse?  Frankly, camps for "special people" offer programs to high functioning DS kids; to mild CP kids; to cancer kids; to AIDS kids, etc. etc.  They do not offer programs to kids like mine.
       Adam is not a "special people".  Handicapped?  Disabled?  Severely?  Medically complex?  Crippled? yes to this list, but no series of ADA modifications will make him a suitable camper.  I find that "special people" is a word for a Hummel figurine on a mantel, or a clay angel on the bookcase.  Call me crazy, but I find the word "special people" totally offensive because society does not consider him special, nor do many other people.  Pseudo-advocates for the disabled may find comfort in the words "special persons", I do not.  Call it what it is; calling it something else does not change his nature.
        Most amusing is the statement that "the camp which accepts special people under their care would give any parent peace of mind to leave their kids under the camp's care?"  Truly the most idiotic statement which I have ever seen in print.  Adam was under water for 25 minutes at a camp run by the leaders and trainers of a nationally recognized college level Outdoor Leadership Program.  Obviously this poster had a recent lobotomy.   Accept special people and no parent has to worry?  F.ck, what planet do you live on.  Read the liability release that parents have to sign.


2. Assumes all of the foregoing risk and accepts personal responsibility for any damages following such an injury, permanent disability, and death or property damage.


       In simple English, we accept "special people", but if your "special people" dies in our care or suffers a permanent disability, it ain't our fault even if we are negligent! You just need to get over it!  Don't you just love do-gooders who advocate for my "special person"?













3 comments:

  1. How true this post is Phil...I am actually quite amused when people mention camp to me for my child. Now if they had a brain they could easily figure out there's no camp I know of to accomidate all his issues, feeding, toileting, seizure control, etc. My son does have camp in the Summer...his own camp, Camp Adam...staff trained by me, activities planned and carried out by me - is it exhauting - you bet...is it worth it? Definately! You are right that when camp is advertised for the disabled it means mildly disabled..not for a spastic quad, non mobile, non verbal, medically complex child. Wouldn't it be nice if it were offered though? We can dream.

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  2. I have been a long-time reader but I am a first-time commenter.

    With all due respect, camp programs for medically complex children *do* exist. I work at one, and I have for three years. Those three years are just the latest portion of a life that has included seven years of service to camps for kids with all sorts of medical and physical needs - including one camp where the kids were actually on ventilators and other life-support machinery.

    The kids at the camp I work at now have a variety of medical, behavioral, physical, and mental challenges. We don't turn anyone down. That's right - NO ONE gets turned down. We simply figure out how to deal with whatever they bring with them. And we're not just sitting in a building doing nothing all day - we have a high ropes course including zipline and travine, we go swimming every day, we take field trips into the community, and our activities include music, crafts, dancing, drama, games, sports, Earth Ball, nature hikes, pontoon boating, cooking, overnight camping trips, hay rides, fishing, canoeing, and more. We have an accessible playground, a sensory room, a gymnasium and more at our disposal. Our camps are located on 400 pristine acres of beautiful woods.

    I believe that programs of our caliber are rare, but they are in existence. I invite you to do further research into camping programs if it is something you truly are interested in. I have a great deal of information at my disposal for anyone who is interested.

    And for the record, we don't call them "special people." They're "campers" or they're "friends," and that's that.

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  3. Jennifer: Sounds great... I love Camp Adam, any openings for one more for the coming summer?

    Sarah: Don't ever hesitate to comment because a number of my posts are the result of my "snarky and jaded experience." I am open to new ideas.
    I would love to know about camps for medically complex people with somewhat esoteric needs. Please e-mail me any relevant info at: philipdz@aol.com.
    Adam, as I am sure you surmise, is nursing home material save the commitment of his parents. He would be incapable of any of the activities which you mentioned above and can't really sit a wheelchair for more than a half hour. So I'm interested in camps that serve people like him somewhere near Massachusetts for a short term stay. Also, he'll be 26 in January.
    A big thing for me is that I don't sign, support or endorse any program which requires parents to sign a waiver of liability. If camps want a parent to say they will not hold people accountable for a child's near death and total disability because of negligence of staff...they should not be in business. If you choose to care for someone, you need to accept responsibility for all reasonable actions to insure their well being. Six years of litigation have taught me that lesson. I have never seen a camp which will allow a kid to attend without a parent signing away all their rights and the rights of a child....I am interested in what you have to share.

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