Funny Is As Funny Does....(Adult Content over 6 years old only)

       Everyone (except me) likes fall in New England.  Hurricane Irene burnt the leaves, so no color but brown.  Dark when you wake up, dark when you go to bed.  My koi are hibernating so you can't watch them swim around.  Flowers and garden are dead.  And it's cold early...I could go on, but why be shitty.

       So to make my self happy, I am posting my favorite FB shares: they never fail to bring a smile.  Hope one of them makes your day!  If you live where the sun is shining and it's warm and you don't have a disabled kid and a dog who "honks" at 4:00 am, you don't need this post.  Others maybe helped.....

I can't take credit for any of these creations, but then I don't know who to attribute them to.......

Vacation...Getting Away From Life (A Sharon Dzialo Post)

Phil's Vacation Resort

 I needed a  retreat – also, knew that it would look very different from Phil’s recent get-away.  He checked into a hotel for three days, slept blissfully, wrote a blog, read a book, walked by the ocean, ate “sinfully” delicious food and had NO RESPONSIBILITY.  I want to mention here that Phil has NEVER done this before and I prodded, pleaded and eventually forced him to go.  I have, in the past, when Adam was in stable shape, taken days away, even a 12 day trip once to Hawaii to visit friends.  Adam was in school then and we had several  good people to help with his care.  This, unfortunately, is no longer our reality.   Phil, however,  could not leave his home, his son, his safety (the old PTSD STUFF. . . ) Until recently -  If you follow our story you will know that the last year has been very difficult – many, many challenges with Adam, ones that left us with that “special fatigue” only experienced by the extreme caretakers of the world.  We were both desperate for a break and, given that we have a gravely diminished support system in place, we needed to take our retreats separately.

Kripalu Retreat Center

I traveled to a yoga center in Western Ma., intending to sleep, walk, participate in some gentle yoga classes, eat healthy food, read, and “if the spirit moved me” connect with some other folks.  RUDE AWAKENING – I signed up for a dorm room with five roommates, all of whom had arrived and settled in before me.  Only a top bunk bed was left, with other people’s clothes scattered about – so welcoming (NOT).  I grabbed my book and tried to find a comfortable chair in one of the many sitting areas.  The Center was packed, people coming and going, chatting, chatting and more chatting.  I couldn’t read so I eventually found my way to a yoga class.  Relaxing? Peaceful? Comforting?  No, no and no.  My body was screaming – couldn’t turn my head to the left, had pain running down the middle of my back and this happened just because I was laying flat on the floor.  Wake-up Call!!!!  Hate it when that happens.  My body was talking to me – too much stress all bottled up.  I hobbled back to my room, met one roommate (nice enough) and then settled onto the top bunk worried about the night ahead because I ALWAYS have to get up in the night to use the bathroom. I was envisioning myself slipping down the ladder, crashing on the floor and further harming my fragile body.   As I was trying to drift off another woman entered the room, loudly announcing her presence, flossing her teeth with great drama, brushing her teeth in the sink while loudly spitting and then setting up a laptop on her bed with the lights on.  I could hear her typing.  Tossed and turned all night and, finally, in the wee hours fled the room, took a shower and made a plan.

Kripalu Center

I requested a private room – YES! And, was settled in within an hour.  I scheduled a therapeutic massage and it was perfect.  A tall, gentle man sat me down, listened to my story (which I told in two sentences) and kindly and compassionately talked with me about honoring mothers and, especially mothers in extreme circumstances.  I cried and he then proceeded to massage the stress from my body.  I must admit that I fantasized about taking him home with me – Phil and Adam would have loved him too.  And, my daughter – well, she loves massages. . .

So, I learned that I needed and wanted to be alone.  This seems like a contradiction when you know the circumstances of our life.  With the exception of one committed and loyal therapist who appears at our door every ten days for a four day stay AND visits from our daughter, her boyfriend and Tiki (the grandpuppy) we lead a very solitary life.  A few family visits each year, phone calls, casual conversations with the neighbors and one or two new friends – that’s it.  Being alone afforded me the luxury of NO CARETAKING, unless it was moving in my own direction.  I went to bed when I wanted, walked, read, took a nap.  I didn’t need much – the simple bliss of no responsibility for even a few days. . .  

Sounds like a new plan – every few months?   

Alone is OK!!!

Silent Night, Holy Night...

Silent night, holy night;  All is calm, all is bright....

Not a creature is stirring, not even a koi

(once water temp hits 50 F, mine hibernate till spring)

Life is good; a function of a peacefully sleeping boy and

peacefully hibernating koi.

Had a bit of a problem this year with over-propagation of the species!

New Year's Resolution: "google" koi birth control!

Social Justice: USA NearThe Bottom of the Heap

        We have not, as a country, taken care of most vulnerable people in our nation.  It is interesting that in the glamour of our electoral process, no one is addressing the fact that the "greatest nation in the world" fails miserably despite our abundance of resources.  Is it a wonder that the disabled are kept at bay and invisible?  Could this be the unstated mission of the Occupy movement and other unrest?  I somehow doubt that those concerned about the unequal distribution of resources are advocating the cause of the invisible disabled in the USA.  Who will speak for our kids?

          This was underscored in a report released on Thursday by the Bertelsmann Stiftung foundation of Germany entitled “Social Justice in the OECD — How Do the Member States Compare?” It analyzed some metrics of basic fairness and equality among Organization for Economic Co-operation and Development countries and ranked America among the ones at the bottom.

         

     Someone needs to save us from ourselves!

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"?