To The Man of the Day...

 Well, the man couldn’t really be expected to write his own Father’s Day blog so I surreptitiously took it over for the day.  Phil has been a bit stuck on the whole concept of “indifference” lately and I certainly understand and do not want to be included with those who don’t bother to take notice of others – sad, sad statement about our culture.  So, today I want to express my deep appreciation for Philip, the father of the day.   I can’t count on our young man, dearest Adam, to help by channeling adulation and humor about his father because he is too tuckered out.  Big, big day yesterday – Adam went to a Red Sox game for the first time in thirteen years.  He had only been once before when he was twelve years old and declared it to be “the best night of his life.”  On that night he traveled with his baseball team and coaches sans parents.  He woke us up when he returned that evening, so excited to show us his trinkets – the Red Sox keychain and the signed baseball card.  He loved things like that.  Well, this trip was different and I just know that Phil will write an absolutely compelling and truthful blog about our recent experience at Fenway Park.  Phil brought a camera so stay tuned.

     Now the topic of the day is about honoring the father in the family.  To be perfectly honest, Philip deserves it many times over.  Adam, Aimee and I all understand his strengths and we know that life would be very different had he not stepped up to the plate (like the baseball analogy?) and shouldered this life challenge with such amazing competence.  A quick disclaimer – I am not saying nice things about Philip because he just wrote two loving (and funny) blogs for Mother’s Day and my birthday.  He honestly works hard every day.  He does hours of therapy with Adam and cooks wonderful soups.  He’s quite domesticated.    For fun he has been painting the exterior of the house (looks  lovely – I picked out the color) and grows vegetables on our deck which overlooks a pond filled with wildlife.  Just an aside – he loves to grow lettuce and I can’t figure out why the rabbits aren’t chewing away at it.  I think that Phil might have put a spell on them.  He tends to all of the plants and flowers, inside and out.  Every time I turn around another hanging plant or flower arrangement has appeared.  Maybe he conjures those up too.  Anyway he has lovingly created a beautiful home for us where we nest and take care of our handsome son.  Oh, and he  bakes bread!  We have been together for over 30 years and I don’t believe that I have prepared one meal.  I call it our “division of labor”. Our chores are evenly divided, trust me. Don’t want to give you the impression that I am a lady of leisure.  I won’t let him near the washing machine – he just doesn’t understand sorting clothes .  And, most importantly, he makes our life work financially by juggling, advocating, and, yes, sometimes bullying to help us get what we need.  He does not take “no” for an answer.

     Phil declared himself my business manager when I published my book  - CERAMIC TO CLAY – no , it’s not about arts and crafts.  The book which Phil painstakingly  listened to as I was writing it, chapter by chapter, with a nod and a “go for it” is,  OUR STORY – how we move through this big life challenge we were given and accepted.

He's not really this bad!!

     It’s hard to figure out what to buy this man who seems to have everything he needs and wants.  He loves Amazon and uses it frequently.  I try to replenish his wardrobe (he doesn’t care one bit about clothes) and they look nice for a bit but he always, and I mean always, manages to get paint, oil, floor polish and food stains on everything.  He also wears slippers everywhere. . .

     We really are true partners in this life we have created.  We adore both of our children, each so different in their needs and wants.  I could not have chosen a better father for my kids. He’s loyal, compassionate, a little quirky and, at times, very funny.    Happy Father’s Day, Philip!!!   Have a beer, water your flowers and plants, open your presents and know that you are loved and appreciated.

Whatever Became of Sin?

     In 1973, psychiatrist Karl Menninger wrote a book which he entitled, "Whatever Became of Sin?".  Earlier in 1960, Thomas Szasz (1960) wrote "The Myth of Mental Illness."  Both psychiatrists bonded in a vaguely similar belief that the pseudo-sciences of psychiatry and psychology do far too much to explain away wrong and evil and that they underplay the role of free will in human interaction and society.
      Conceptually, both would agree that psychology and psychiatry actively obscure the difference between wrong, (mis)behavior, evil and disease  in a quest to help or harm parties to conflict.  By calling people "diseased" or mentally ill or incompetent, these fields of study attempt to deny people responsibility as moral agents.  Have we continued to explain away wrong, bullying, murder, discrimination and a host of evils by maintaining a psycho-social belief that we are solely the product of nature and nurture, devoid of free will and responsibility to our every action.  Isn't it a choice to hurt someone or to be indifferent to their angst?

      Asking whatever happened to sin may appear to be a strange topic in a blog on disability and healing and empowerment.  Nonetheless, the central question directly relates to society's excuse about the lack of full embrace of the severely disabled and their protection.
       Yesterday, I read an article in the Boston newspapers about  a Bridgewater, Massachusetts middle school where three students cornered a special education student in a bathroom.  He was held down and pummeled.  This is in the context of Massachusetts recent anti-bullying laws in schools.  There are no facts in controversy as the incident was recorded on a security camera.  The consequence was a suspension for the three students.  Neither the victim's parent, the school administration nor the police would file criminal charges.  Doesn't an attack on a special needs child warrant an appearance in a court and punishment?  When is an assault not an assault?  When does no one learn a lesson and punishment become a deterrent?  Whatever happened to sin?

       This week in two blogs, readers wrote of the death of an autistic boy in a group home when he was killed by intentional asphyxiation by a worker.  Others there were beaten with sticks and the abuse went unreported.  Whatever happened to sin?
       Several months ago, I posted a blog about rampant unreported abuse in New York groups homes for the severely disabled.  Part of the blog excoriated unions for their protection of perpetrators because of union contract protections.  What ever happened to the concept of wrong and punishment?  Is it possible to rehabilitate those who abuse the most fragile in our society?  I do not believe that rehabilitation is possible nor should it even be an option.  Who will stand up for the disabled?  Unions?
      And then again in Massachusetts we have the Judge Rotenberg Center which houses many people with developmental and behavioral disabilities.  The preferred method of behavior modification:  electroshock to skin areas.  When is abuse not abuse?  Is abuse allowable when it it is a form of behavior modification?  Why have Massachusetts legislators and judges and parents allowed institutional abuse to continue?

       Stories like these are legion and a daily occurrence. Reports surface on a regular basis.  Abuse of children, the disabled, the elderly, the infirm, the aged.....no group, except the powerful or the perfect, are exempt.  We use the psychology of genetic predisposition and early learning experience to explain away evil.  We use poverty, unemployment, the ghetto, the race, etc to explain away evil acts.  Counseling is too often a response  to wrong doing and it does not work.  Imprisonment often results in high rates of recidivism.  What has become of sin?
       I am not a religious person and do not use sin in a religious sense. I do not believe in a personal god, because a god would not allow this evil to exist.  Sin is an objective act of wrong against a person or humanity.  Sin can be a free purposeful act or an act of indifference to the plight of others.  Can a person have millions of dollars, vacation monthly and have his neighbors be homeless and hungry and not sin?  Can a Massachusetts governor  give raises to his state managers when day habilitation hours for the disabled are reduced  and not sin?  Can a school superintendent provide generous raises to his central office staff and reduce services to students with disabilities and not sin?  Can a student bully another student and not sin?  Can a student bully a special needs student and not mortally sin?

       We, as a society, flee from the notion of objective wrong and work hard to explain why things are the way they are.  Should we, based upon a simple belief in our inter-connectedness simply devote life to overcoming injustice and oppression and simply doing good?  Whatever became of sin?

Thought for Today (2)

Perfect behavior is born of complete indifference.

Francois de La Rochefoucauld

Adam's New Toys . . .

    Everybody needs toys...big boys, little boys, boy doggies and boy fishies.  Dad has toys: big screen tv's, Wii, laptops, tablets, smart phones.  Ollie has his dead skunk, dead moose and a variety of other unstuffed animals with squeekers.  My boy koi (not sure if koi has a plural and I'm to lazy to research) have new plants and summer foods.
     Adam also has more toys than god.  He has a bigger flat screen, home theater system. loads of Jim Carrey, Adam Sandler, and Mighty Ducks DVD's, also all sorts of media players, two ABR machines, nebulizers, suction machines, wheelchairs, bath lifts, and on and on.  Certainly more stuff than god, but she probably doesn't need all this stuff, nor would she enjoy it.
       Well, we just got another cool toy on the heels of a week of respiratory distress...very distressing to mom and dad.  Adam collects mucous (yeah, that word!) in his throat and when he's tired or whatever, it stays there and migrates into his upper airways which in turns makes him feel like he can't breathe and then he hyperventilates.  So, his doctor says this makes sense.  If you almost drowned (25 minutes under water without breathing) and if you couldn't breathe well because your airways were full of junk, you would hyperventilate also (duh, she says).  The good news, she says, is that his heart won't burst from the strain, but that he probably will pass out.  After passing out, his CO2 will increase and he will come to....this is all very consoling to a set of PTSD'd parents.
        Not an acceptable scenario, so something needs to be fixed!!

       So, here is the new toy...The Vest: An Airway Clearance Device.  Given the fact that mucous is good, at least so I'm told and given the fact that retained mucous and secretions in the airways isn't good, there is an answer which is neither invasive nor time consuming.  A pulsing air generator, two hoses and a Vest.  Simple.  Pressure is created in the vest which then oscillates up to 25 times per second...no special breathing, nothing else.  And, you only need to do the therapy twice a day for 10 minutes at a time.  So. in a nutshell, it loosens old, sticky secretions, moves them up and out which produces an irritation and a good healthy cough.

So far, we have a boy with clear lungs, clear throat and mucous going in the right direction (down the throat to lubricate the olde bowel).

       I like the new toy.  Adam tolerates the new toy.  He breathes more deeply and more clearly all day long.  Hopefully, this will allow us to get rid of the nebulizer with the albuterol and symbicort.  My boy, again, all natural, organic and no drugs!!!  Love these toys and only $10,000.00.  Thank you Mr. Insurance Company.  Someone is making a hell of an effing profit on these kids.

       I'm not getting a promotional kick-back!!!  Just letting ya know!

       Also, he didn't get the pink vest!

The guy is an idiot...but you get the point..
"Cough it up, kid!"

Happy, Happy Birthday Sharon....

   
       June 3, 2011 and you are 39 once again!  Your secret is safe with me!!!  It's a great day to celebrate the birth of a very, very special person.  While you weren't born in stable with adoring baby animals, angels and wise men around who were guided by a star, your effect on the people whose life you have touched is remarkably similar.  You are wife, mother, ABR therapist, counselor, consoler of a periodically forlorn daughter, mainstay of a somewhat neurotic husband, unconditional care giver to a disabled son.  You also are a homemaker for a chihuahua who is more neurotic than your husband and a poochon who gives the word "dependent" new meaning.  I could make a long list, but later.....first a song which says it all on your birthday.  It's Iz and  "Over the Rainbow/It's a Wonderful World!"  Great lullaby to put your kids to sleep....among other things.

       Well, let me say that it's difficult to sing your praises on your birthday and Mother's Day which are less than 30 days apart.  I think that you could have planned better.  This is a drain on my limited reservoir of emotion and my wallet.  But what the hell, we have learned to take life together as it comes to us.  For 30 years we have been partners and soul mates on one f....ing incredible journey.  No smooth sailing by any means, but we have learned to depend on each other's wisdom.

       Together, we have spawned two beautiful children: an accomplished daughter and a son who is in the process of accomplishing.  I wish he would hurry up, don't you?  On the other hand, I wish she would hurry up too.  Notice how you have to fill in the blanks on these statements of our dreams?  Your role in their development is inexplicable and short of miraculous.  This selfless, unconditional love is what I admire most about you.  I probably fall short, but you know woman who are saints are often attracted to men who are sinners.  I am happy to have you along on this ride.

       Ollie and Chloe are also happy to have you along on their ride.  They, however, are in the driver's seat.  Finicky, demanding, neurotic, periodically incontinent (runs in the family), always hungry for a gourmet meal....and you cater to their every whim even to the point of allowing Chloe to sleep snoring in your ear all night.  Now, the ear plugs make sense.  My wife, for whom "no" is not a word in her vocabulary, is the ultimate care taker...even of the beasts, even of the children.

        You have accomplished a lot in .... years.  Completed several graduate degrees, worked as a teacher and counselor in education, continue to be great mother when time would dictate that retirement is sitting on the deck with a brew, cleaner,  carer of a handicapped kid, author of a book, learning the piano (again), and learning to be skilled in the fine art of blowing off indifferent people.  (The latter I taught you, but probably will not be given the credit.)  So much is such a short period of time, only....years.

        Anyways, it's your birthday to enjoy, but that doesn't mean that you get the day off...there are no days off in this house.  It does means that you get to know that you are loved, appreciated and admired by adults, children and beasts.  Happy, happy ...th birthday.  I am looking forward to our 30th anniversary (again)!  Oh, by the way, in our next lifetime in the world of normality, keep a reasonable spread between your birthday and Mother's Day.