Hell, No, He Won't Go.....

     The decision to place a child or an adult of any age in an institution, residential setting  or a group home, the latter which is a contemporary euphemism for an institution, is never lightly embarked upon.  I remain quite amazed and deeply concerned about the numbers of people, both young and old, placed in residential settings of varying types and incarnations.  Part of me acknowledges that some parents and guardians earnestly believe that it is the best interest of the child to receive care in such a setting.  However, I believe that these decisions are often made so a parent(s) can have a life beyond the role of caretaker. Decisions are made for the sake of preserving a marriage, decisions are made so that other siblings in the family are not short changed, and decisions are made because resilience fades and supports erode.  All logical, all meaningfully deliberated, all made with a great ambivalence and with a healthy dose of guilt.  I have yet to read or hear that the decision is purely in the best interest of the disabled child or person.  Away from a loving home is better in a depersonalized institution or home?  I refer not to disabled people who are in the process of learning self-sufficiency; I refer to the fundamentally, severely disabled whose needs and desires can only known by parents.

       I have nothing but disdain for fathers who leave the family to fend for themselves because this life is stressful and hard.  I have  little but  condemnation for fathers who disappear and do not financially or emotionally support their disabled children.  The fires of hell burn especially hot for these dudes, and it is usually the man who fails to recognize and embrace his paternal bond.  Mothers rarely abnegate their love-bond.  This is certainly an unenlightened social darwinism.

       So given the shallow reasons to move severely disabled children and adults into institutions, residential placements and group homes, what lives  do these precious vessels of life-force face.  Physical and sexual abuse is common in these placements, neglect is more common as patients lie in urine and feces, miss needed medications or feedings.  There are so many stories of caretakers ignoring their charges, stealing what little the disabled have, compromising medication and feeding schedules and on.  Employees of these places are more often than not poorly educated and sinfully underpaid.  The result is that people die; our kids die.  It is well established that all people who are deprived of physical touch and contact die much sooner.  Yet these decisions serve the purpose of those who give their kids and elderly away.  It is an early death sentence in many cases.  Stories of abuse in institutions and homes are legion, daily in media by the hundreds and I  will spare you the horror of the many links I have collected.  It just ain't right!

       I am dismayed at parents who want to be something more than the parent of a severely disabled child...what could be a higher giving and measure of heroism?  What could be more consonant with highest calling of parenthood?  Does ethics and morality dictate these decisions?  Does maternal or paternal obligation dictate these decisions?  Or does self trump the need for a  dignified life of the disabled?  Do institutions devalue or enhance the value of disabled people?  Our society justifies poor decisions, condones a lack of resilience, and allows people to feel justified about dumping kids and adults on the state...a quite uncaring, unaccountable and anonymous entity.  Never is there a discussion of the ethics or morality of institutionalization.  "Out of sight, out of mind" is not a hack expression, it is a statement about reality.  Visiting your kid on a weekend or taking him or her home for a day is symptomatic of this hack expression.

       I would guess that one could criticize my thoughts and musings under the guise that I am very judgemental...I am.  I believe that institutions, residential placements and group homes should be abolished and that monies saved should be used to help parents keep their severely disabled charges in the home.  The cost of an institutional placement in Massachusetts is $250.000.00.  Could we not keep the same person home with mom and dad for a small fraction of the price?  Isn't home the only place that true love exists?  Is it not the singular place where the disabled are loved, cared for with utmost dignity and continue to live and thrive.....?
       And when parents are too old and frail?  Can we make a leap and assume that extended family and siblings inherit a moral and ethical duty to assume the same care?  Or are their lives too important?  Is it not the duty and the obligation of society and family to ensure care for the most needy?  Is that not the criteria by which our society and we ourselves will be judged?  And judgement will occur in future time as consciousness evolves to higher planes?  Our children are our children, not the children of institutions.  Yes, I realize the insufficiency of social supports; I realize the indifference of family and friends in assisting us in the care of our disabled family members; I realize the rationalizations on why those closest choose to be the farthest.  Yet, I realize that group homes and institutions, no matter how wonderfully construed, are grossly inadequate in providing the love which is the lifeblood of the disabled. And no matter how cognitively compromised the person, they feel the love and dignity emanating  from loving care....without those elements there is only death.

     Yes, there are some laudable placements in the world, i.e. L'Arche...an intentional community of residents, volunteers and developmental disabled.  But are there severely disabled, medically fragile members in this community?...probably not.  Nursing home, state institutions, yes...death sentences.  Home is where the severely compromised need to live with love and dignity; home is where the hurting elderly need to live with love and dignity; home with family is where the severely mentally ill need to live, with love and dignity.  Responsibility is uncomplicated: family and extended family is home and society has a duty to provide the supports to allow for this obligation to be met.  There is no greater honor than to care for our sons and daughters and mothers and fathers, for our nieces and nephews, our brothers and sisters.  This is the apex of actualization and one does not need a god or a religion to provide us the reward nor the incentive...duty, obligation and love are required.
      So, my judgmental self says close all the group homes, the institutions and residentials....allow the family to care for their own (with complete financial, physical and emotional supports) and counsel them to understand that providing care is the highest reward,  the utmost self-realization and the deepest meaning.

       

Summer Camps: When Severe Disability Is NOT An Issue: Guest Post by Sarah Hart

     It's both an honor and a pleasure to host this guest post by Sarah Hart.  Sarah responded to my blog a year ago when I bemoaned my belief there were no opportunities for a severely disabled kid like Adam to attend a summer camp.  Well, I was wrong and I am so pleased that Sarah was willing to share her experiences with my readers.  Thank you, so much, Sarah!


     Sarah is a seven-year veteran of camps for people with disabilities.  Originally from Michigan, she has spent the last three summers working at a camp in Wisconsin.  She has a degree in English literature and American Sign Language from Michigan State University, and is considering Child Life as a profession after her time at camp.  She would be more than happy to help families figure out how to send their loved ones to camp.  She can be reached at memorysdaughter@gmail.com

Going to camp is a treasured childhood memory for many of us.  Nights spent around campfires roasting marshmallows and days filled with activities, anything from weaving lanyards to horseback riding to swimming, glow like fireflies in the back of our minds.  Far from behind a relic of the past, summer camps today offer a wide variety of programs, ranging from the traditional (archery, tent-pitching, canoeing, fishing, hiking) to more specialized (computers, photography, ballet).

Camp is such a specialized series of events, and such an event in itself, that it may seem that it is specifically designed for campers without special needs.  As such, parents of children with disabilities, whether mild or severe, often feel like there is no place for their child in a camp setting.

: A ventilator-dependent camper is lifted up into an accessible treehouse.

As a seven-year veteran of camps for kids with special needs, everything ranging from autism and Asperger’s syndrome to Down syndrome to brain injuries to cerebral palsy to rare genetic disorders, spinal cord injuries, involved medical conditions, and muscular dystrophy to hearing impairment and visual impairment, I am here to tell you that not only is it possible for your loved one to attend camp, it is possible for them to thrive in a camp setting.

Nike used to use a slogan that I particularly liked: “Impossible is nothing.”  While they no longer use it to sell shoes and athletic gear, I still use it when I talk about camps for kids with disabilities.  And it’s completely true.

Phil wrote a post on his blog earlier talking about how kids like his son Adam, who were basically “nursing home material… save the commitment of (the) parents” and how they’re not the kind of kids who go to camp.

Except that every kind of kid is the kind who can go to camp.

A camper with cerebral palsy enjoys a g-tube breakfast as she heads up to the zipline

At the moment I work at a camp for kids and adults with disabilities in Wisconsin.  The particular program I work with is the respite camp, where we accept children, teens, and adults with medical conditions, disabilities, or behavioral problems that make them ineligible to attend most other camps or respite programs.  Our program is one-to-one, one camper to one counselor, and our campers range in age from 3 up, with no real upper limit – I’ve worked with campers in their eighties!  Our campers have a wide variety of conditions, including autism, cerebral palsy, spina bifida, muscular dystrophy, brain injury, PTSD, Down syndrome, among others.  We see campers with severe physical and mental involvement as well as campers with severe behavioral involvement.  Our campers vary in the degree of assistance they need - some need little to no assistance with personal care and participation in activities, and others need total assistance for all camp participation and personal care.  We have campers with feeding tubes, catheters, Port-a-Caths, tracheostomies and other various "ostomies", brittle diabetes, intractable epilepsy, self-injurious behaviors, DNR orders, and more.  We have two nurses on staff during the summer and usually one CNA to accompany them in the summer; during the "off" season when we are only running weekend programs, we have one full-time nurse and usually a second nurse for check-ins on Friday night.

Our camp offers a wide variety of “traditional” camp activities; swimming, cooking over the fire, painting, soccer, volleyball, paper crafts, and community trips, just to name a few.  All of our activities can be adapted to any range of function.  We have a dance every week, and everyone goes on an overnight camping trip, sleeping under the stars at one of our lovely campsites, set back into our 400-acre forest; natural beauty is everywhere.

In addition to the traditional camp activities, we offer a high-ropes course, a travine swing, and a climbing wall with a zipline.  The ropes course is set up so that everything except for the high-ropes elements is accessible to campers with physical disabilities.

Our goal is to provide a special, fulfilling experience for our campers.  If a camper is happiest when observing activities, or walking around camp, we make it happen.  If a camper loves all the activities, we encourage them to participate to the highest degree.  If a camper is unable to sit in a wheelchair for an extended period of time, we improvise.  Some campers hang out on blankets or beanbags; others may bring their own positioning chairs.  No matter how they are positioned, our campers are always in the middle of the action.  Our one-on-one setup guarantees it.

It is my belief that camps for kids with disabilities are an extremely valuable resource.  Camps provide breaks for parents and caregivers, while at the same time providing new experiences for campers.  Campers have the opportunity to make friends, try new things, and have adventures.  Camps provide the kind of experiences you want to remember.

Drumming: Music is a great afternoon activity at a camp for kids with visual impairments.

Here is just a short list of the potential experiences available at camps for kids or adults with disabilities: cook outdoors; write songs or poetry; identify birds by their calls; canoeing; tour a local monument or museum; archery; put on plays; camp 

out in tents; swimming; sculpting clay or stone; play Earth Ball, soccer, hockey, tennis, baseball, or volleyball; build models; tie-dye, tandem bike trips; games like tag or relay races; attend concerts or other live performances; play instruments; pontoon-boating or paddle-boating; group sing-a-longs; murder mystery evenings; purchasing items from the camp store; campfires; and spending time on high or low ropes courses.

And that may just be the beginning.  Remember when I said that I loved the slogan “impossible is nothing”?  Well, it’s true.  Throughout the seven years I’ve been working at camps for kids with disabilities, I have been witness to many things that I’m sure most people would find impossible.  Here are two examples.

During my first year at a camp for kids and teens with visual impairments, we took a group of kids on a week-long canoeing trip.  All of the campers were either legally blind or completely blind, and half our staff was too.   We carried all our supplies and food.  Sighted counselors steered the canoes, but our visually impaired campers were responsible for paddling their weight, setting up and taking down camp, and assisting with cooking and clean-up.  At the end of the trip we were able to tour a dry-docked World War I submarine, and then we spent the night onboard.

On the boat: A camper with cerebral palsy enjoys a boat ride down the Wisconsin River.

Exciting?  Heck yes.  Tiring?  Oh yeah.  Impossible?  I don’t think so.

A year later I had the opportunity to spend some time at a camp for kids who were on ventilators.  These campers were some of the most physically-challenged people I have ever worked with.  And yet we took the time to rig them – and their ventilators, vent batteries, and other necessary equipment – into rock-climbing harnesses and haul them up into a specially-adapted treehouse, or high into a tree’s limbs.  The best view from the treehouse was to look over the side and see all of those high-tech, super-specialized wheelchairs on the ground, empty.

Unbelievable?  At first.  Awe-inspiring?  Totally.  Impossible?  Not anymore.

If having your child be a part of something as exciting and amazing as the activities listed above, you might now be wondering how to pick a camp for your loved one.  Here are some tips on finding a camp that’s right for you and your child.

1    1.    Pick a camp that is accredited by the American Camp Association (ACA).  Their website can be found here: http://www.acacamps.org.

 

Camps that are accredited by the ACA are part of a 50-year tradition of providing safe and well-maintained camps for all campers.  Accreditation is based on a 300-point inspection that covers all areas of camp.  Every inspection covers all salient points of camp, from food service to the waterfront activities, from health care assessments to transportation of campers.

The ACA also has a helpful “Camp Finder” on their website, which can help you find a specific camp that’s right for your loved one.  The Finder, which can be found at http://find.acacamps.org/, is able to narrow down camp choices based on specific disabilities or health conditions, including severe food allergies, burns, autism, mobility limitations and more.  It is also possible to search based on camper age, camp location, session dates, or camp cost.

     2.   Once you’ve found a camp that you are interested in, set up a tour.  Most camps are more than happy to have potential campers and their caregivers come for a visit.  Tours are a great time to check out facilities and program offerings, as well as to ask questions about all things camp related.

Here are some questions that you might consider asking on a tour.

-          What is the camper to staff ratio?

-          What sort of training do staff members go through?  Are they required to know CPR, first aid, etc.?

-           What are the living arrangements like?  How many campers sleep in a cabin?  Who watches over the cabin 

              during the night?

-          How long are the camp sessions?  What is a typical day like?

-          Who is responsible for giving medications and/or treatments throughout the day?  Is it a nurse?

-          My camper has a trach/ventilator/oxygen/other medical needs that are very complex.  Would it be possible 

              for my camper to bring their own nurse?

-          How many lifeguards oversee the pool?  What is the protocol for a camper who cannot swim but wants to

              get in the water?

-          What are the safety precautions in place for the ropes course?  If my camper cannot stand or support their 

              own weight, how will they use the course elements?

-          For off-camp trips, how will my camper be transported?  What kind of training are drivers required to

              have?

-          What activity is the most popular or the most memorable?  Is there anything special about your program that 

              makes your camp the best choice for my child?

Campers with all types of abilities are celebrated and loved at camps

A tour can help you to decide if that particular camp is the right one for your child.  If you feel like the camp’s programs are great, but your camper has far too many medical needs to go to camp by themselves, ask the camp if they would be receptive to having your camper bring their own nurse.  At our camp here in Wisconsin, campers with tracheotomies and ventilators typically bring their home-care nurse, who does all of their personal care needs, while the counselor is responsible for the camper’s participation in activities.

The camp may not agree to this arrangement right away, but offer to help them work out a plan.  They may not be responsive because they may not have thought about such a situation before – it’s possible it’s never come up before!

The right camp will work with you to figure out a plan that will enable your child to go to camp.

3     3.    If necessary, investigate possible sources for funding a camp experience.

Some campers already receive funds for respite care, whether in-home or otherwise, through the state.  It may be possible to put those funds towards your child’s camp experience.

Charitable organizations like the Lions, Kiwanis, or Elks are often looking for service projects to sponsor – so, why not your child?  Write a letter or give a presentation about why it’s important for your child to go to camp.

Some camps have scholarship funds for campers who demonstrate financial need. 

At the dance: Some camps have fancy dress nights or special dances, where everyone can celebrate.

During my second year at this camp in Wisconsin, I was giving a speech about camp to a group of college students who would hopefully become counselors or other staff members at our camp.  I showed them pictures of our camp, including our ropes course, swimming pool, and off-camp trips like canoeing or camp-out.  I watched their mouths drop open as they considered the possibilities.

A student in the back raised her hand and asked me how a camper who uses a wheelchair could possibly go down the zip-line – they couldn’t stand, or bear weight, or…

I flicked back through my photos and found one of a camper being strapped into the ropes harness.  This particular camper has no control over any of her limbs, cannot swallow, and cannot stand.  And yet there she was, strapped in, with her g-tube feeding backpack hung on a carabiner and attached to the harness above her, heading up to the top of the tower, where she would then be launched down the zip-line.

It was possible because that was our mentality.  We didn’t look at any perceived obstacles – we saw only one thing: a camper wanting to go down the zip-line.  It didn’t matter that she couldn’t walk, talk, swallow, whatever.  What mattered was her desire to participate on the ropes course like every other camper… and so that’s what we worked with.

A camper’s desires, or even their parents’ desires, to have amazing, life-changing, completely memorable experiences, are what drive summer camps for people with disabilities.  These camps are places of possibility, of acceptance, of hope.

As a seven-year veteran of camps, it’s often hard to explain my philosophy to new staff members, or even to outsiders who have no idea how much summer camps can impact lives.

I simply start out by thinking that anything is possible… and then I figure out how to do it.

I hope you will consider that a camp experience for your child is possible, even if it takes a little creative thinking to figure out how.

Campers with all levels of physical ability can participate in a game of four-square.

Swimming: The pool is a great place to spend hot afternoons.

Guest Post: A Nuance to the Dialogue About Dark Places

        I am honored to be able to host this guest post by Claire, a single mom to a teenage daughter who is severely disabled as the result of a stroke at age 6.  Claire is a devoted mother, insightful blogger and disability advocate extraordinaire.  Claire blogs at Break It!  A visit to her blog will surely not disappoint.

I would like to offer a perspective at this time, here on Phil’s blog, about the issue of quality of care when it comes to our severely challenged children.

I have read far too many stories of people who commit murder/suicide with their kids…heard too many people insinuating they would do so themselves if they could. I get it. Like Phil says, it can be perceived as a compassionate move when you know that what your child faces under “public care” is just this side of horrific. We can all accept, then, that this is a terrible social problem and should be addressed. None of us, however, are holding our breath waiting for it to happen.

Having said that, I would like to offer a bit of nuance to the dialogue here, based on my personal experiences. This is also the reason I am writing here and not on my blog, in case “somebody” reads it.

In my personal “journey”’ in caring for my daughter along with a spouse, I have the benefit right now of 20/20 hindsight.  And I can tell you that there is such a thing as “over-caring” for your kid. 

In the early days of caring for a child there is much to learn. The curve is steep and intense. You get caught up in it completely and there is nothing else in your focus. In order to get everything done, you set up routines and you fall into habits based on your child’s particular needs and on your ability, as a parent, to recognize those needs, even when the child cannot communicate with you directly.  No question, with few exceptions, a parent or parents are the best caregivers for their kids. I can honestly say, for example, that I can look at the back of my gal’s head and know whether or not she is okay.

But, what happened in my home can happen elsewhere too. There were restrictions that developed. The rule that there had to be two caregivers on the kid at all times…one being a parent.  There were restrictions as to travel, of physical distance from the child, of how long ones eyes were allowed to wander away from the child, of when it was okay to go to the bathroom. In short, all things became defined by the level of the kid’s care. No thought wavered from it and it was meticulous in the extreme…the positions just so, the foods, just so, the timing just so, the methodology just so. There was no wavering from the strict agenda and the strict interpretation of what was going on and why. No flexibility whatsoever.  The rigidity became a sickness in and of itself and affected the general health of the family, including that of my gal.  No change in pattern could be observed or allowed to happen. All actions were based on passed crises, and the attempt to prevent all future crises…as if that were even possible.

What happened was the creation of a virtual prison for everyone. The level of care was so extravagant that it was not possible to re-create without the constant supervision and intervention of a parent. I found out only later that none of my now cherished caregivers liked spending more than one shift a week in our home, it was so oppressive.

So I left before it killed me and my kid, quite literally.

I have since relaxed all care protocols. The difference it has made to everyone is huge.  The difference it has made to my child…almost unbelieveable.  She is allowed breathing room, space…physical and emotional.  All of us are. The environment is healthy and, more importantly, it is possible to keep up the level of care with different caregivers, unsupervised…un-harassed.

And one more thing: when the other parent was observed interacting with the kid by a much loved and very knowledgeable guest, the comment was, “Does he always crawl up her ass and out of her mouth like that when he’s with her?”

So…my point: there is such a thing as poor care. Care so poor we would rather kill off our kids than allow them to experience it. There is also such a thing as care so over the top it is not possible to re-create anywhere, in any way. This hurts us and our kids too. Balance is the key and it serves all well.  Let’s just make certain we examine our lives and see the truth of the matter before anything else.

HAPPY BIRTHDAY, ADAM.....January 14, 2012 (#26)

Adam Dzialo (age 26)

   

  When a father gives to his son, both laugh; when a son gives to his father, both cry.

William Shakespeare or a Jewish proverb (source is debatable)

My son, Adam, is my sun! The sun is an emblem of glory and brilliance. It is also a symbol of authority. It represents happiness, life and spirituality. The rising sun is a symbol of hope. The sun, when not rising, is always blazoned the “sun in splendour.” The rays are alternately straight and wavy, which symbolize the heat and light that we derive from them, and the heraldic sun usually has a human face though this is not strictly necessary. Rays of the sun, also called beams, are sometimes borne singly as in the ancient rolls, but more often they issue from other charges when described by one of the terms as radiant, rayonné or rayonnant. One ray of the sun signifies “by the light of heaven."  Swyrich Corporation, 2012

Long Life.......

       January 14, Adam will be 26 years old, having survived 13 and a half years post a 25 minute underwater near-drowning.  Adam is certainly severely disabled, non-ambulatory, non-verbal and needs 24 hour a day care.  He can do nothing for himself.  What he is, however,....is a TEACHER.  Teachers do not need words, they do not need written tomes filled with trivial drivel, they do not need a captive audience.  Teachers simply emanate life and its true value and purpose . . . pure, unadulterated being.

       Life pursues itself; life is its own mission; life does not need to be valued by others to be affirmed.  Life is ....  Adam has taught us that others can never learn unless a heart is fully open.  An open heart is a singular rarity in a world of narcissistic obsession.  Adam has taught us that what is valued is simple, is unadorned and often unappreciated.  It is life aware of itself and an awareness that there are  few significant others who unconditionally love and unconditionally care.  Unconditional love sustains life; it provides a cellular immunity against the forces of indifference which plague our society.

Adam...the only human who wakes every single morning
with a bright smile...there are no exceptions.   This
is a life lesson on how to greet life itself!

        Adam has taught us to allow into our lives only positive energy and to dismiss that which drains from us life force.  Stripped of its adornments and desires, its ambitions and pretensions, life simply is NOW....this moment and this moment is beautiful.  This moment has no past and it has no future....it is NOW.  We have learned easy and hard ways to let go of family and friends who embodied the energy which saps life from self.  We have learned to tell the truth, without regard to consequence.  We have learned that pure love is that love which neither expects nor requires anything in return.  We have learned that our soul group will be together in the energetic world forever.  Would any of this knowledge be available without Adam?  Not in one's wildest dreams.   We have learned, he has taught.

       Our only wish for Adam is a long life.  He has much more to teach and we have more to learn.  Others can learn also, but they need to be present and to have an open heart.  I would hope people stop running from learning because there will be a day when it will be too late.

        We journey together, a small unit.  The unit could not be more tight nor more secure.  There are no regrets; there is often a soul weariness and a soul enlightenment.  We have been together in past lives, in many differing roles, but this soul group endures.  That is all that counts!

HAPPY BIRTHDAY, ADAM!

Chronic Sorrow....Understanding That Which Evades Understanding

        Chronic sorrow " is a set of pervasive, profound, continuing, and recurring grief responses resulting from a significant loss or absence of oneself (self-loss) or another living person (other loss) to whom there is a deep attachment.  The way in which the loss is perceived determines the existence of chronic sorrow...a painful discrepancy between what is perceived as reality and what continues to be dreamed of.  The loss is ongoing since the source of the loss continues to be present.  The loss is a living loss." p.26

       "While chronic sorrow is conceptualized as being normal and understandable, there are no formal and customary social supports and expectations, rituals or recognitions of the catastrophic loss, since the person who is the source of the loss continues to live.  Adaptations are usually drastic and disorienting.  Simultaneously and absurdly, the person who is the source of the sorrow may at times be socially unrecognized, as if he or she does not exist.  If there is no existence, there is no loss; therefore  the grief is unacknowledged and unaddressed by society." p. 29

       A powerhouse book for every parent of a disabled child or adult child.

Toilet Seats: Cleaning Out Your Bank Account

       We just returned from ABR Montreal yesterday afternoon.  After 8 hours in the van with a kid who couldn't or wouldn't (non-verbal kids do get ornery) get comfortable in a wheelchair and was then slipping down on a cot that I secured in the van, I'm not ready yet to describe the ABR experience.  I'm sure the movies we got him to watch in the van lacked enough blond-female skin to make him pissy; "Bridesmaids" didn't quite pass muster.  So I thought I would post about toilets seats and fleecing handicapped kids' parents.  Here's why we are always broke.

        Adam uses a commode with a soft seat (because he has a bony ass) and a splash guard.  Only parents of handicapped kids know about splash guards, so don't ask.  So here is how we get fleeced by manufacturers of "medical " equipment and I use the word loosely.  I'll let the reader put the pieces together.

COMMODE:  (steel, portable, solid stable)  $40.00  US dollars

SOFT SEAT REDUCER RING WITH SLASH GUARD ( a bit of of soft rubber)

                  $320.00 - $220.00 (same item two sellers) US dollars

Just the blue ring, folks, nothing else
Adam's ring is a flashier blue!
BTW, the protrusion upward is the "splash guard"

A SUPER SOFT WALMART TOILET SEAT:  $14.00

       Let's see $320.00 US or 338.00 euros or 333.00$ Canadian loonies or 205 British pounds  or 1191.00 new shekels or 329 Australian dollars, etc.  We all know who's really getting wiped and it's not the kids!

CONCLUSION: A new toilet seat for the kid means MickeyD's for mom and dad!  Ah, the injustice which pervades the universe....

"I'm Uncomfortable Around Disabled People..."

     Comments abound when people are questioned as to why Adam is not in the their lives?  Frequently, I hear, "I'm not comfortable....."
     We all have disabilities but some disabilities are not obvious to casual observers.
      We do not avoid you because of your more subtle disabilities.  I become very angry when people avoid my son because of their personal discomfort!  This response eats at my core and brings out an atomic response.

Adam at his Last ABR Evaluation

        Fuck you and get over it!! Get over your discomfort, now!  It's not my job to make you comfortable; it's not my job to make my kid visually appealing to you; it's not my job to make my kid walk and talk like you...It's not my job to blow sunshine up your ass!  Simply, love him as a child of the universe, perfect in all ways important or run and hide in your cave of delusion about how things should be!  Consider him as important as you consider yourself and relate to him out of a belief in the perfection of all humanity.  If you can't; stay far, far away!  Your energy can destroy our harmony and equanimity.

       The internet and blogging world is just a modern day incarnation of a huge smudge stick...smudging (see previous post) will release subtle negative energy to dissipate.  Releasing your anger and rage through cyberspace will dissipate it and release its bonds which bind you.  Releasing is freeing...releasing will make it stick to whatever object it chooses, not you nor your kid nor your home.

        Send your ills into the black hole of cyberspace.

The Inferno Redux...three new circles

              The inferno is a place of fire, a place of suffering on earth.  Suffering is not bad, certainly suffering is not good...it simply is what it is in the moment.  People can stoically embrace suffering, reject and deny it, find a deeply religious significance in it, pray that it passes suddenly or conclude that it is a meaningless construct to divert our attention from what is real and what is possible.

       I blog a bit and follow numerous fellow cyberspace friends'
blogs, I lurk on chat groups for parents of the disabled and comment when useful, I read much online.  Despite our levity, our moments of being morose, our sense of compassion and unity, we all suffer in a way distinct from the common person, the "normal" ones.

       What I have learned or what my reality has created, is the belief that there are three circles of suffering in a place between heaven and hell, a limbo of sorts.  I call it a limbo because both the children with disability and their parents exist in a place between the vision of joy and the view of dread...a place between living and dying.

       To me, there appear to be three layers in this inferno (perhaps more), types of human conditions in which parents and children of the disabled reside.

       First, and perhaps the  optimum circle, includes parents with severely disabled children who have the resources to thrive.  Often they blog, they exude hope, they see humor in a humorless world.  Often they are able to care for their children at home with some assistance and above all, they are able to mobilize the resources to explore all the alternative therapies which benefit the children.  In most cases, their family unit is stable, although they also suffer from the disappearing friends and family syndrome.  They reside in the circle closest to Paradiso.
       Second, distant from the former circle, exist a group of parents of severely disabled children who can't maintain the level of sanity provided by blogging.  They survive in the chat groups and support groups for parents of disabled children.  They have few resources, many times without a significant other (usually because the Man can't cope), and cannot speak strongly enough to navigate the support systems.  They are allotted few hours of respite or assistance, beg on the support groups for an extra mic key set or trach setup, are denied school and health services without the ability or knowledge to appeal.  They have no access to alternative therapies and constantly plead for even the most minuscule of resources.  They live on the verge, give more than their all, and relentlessly love their children.  They exist in the belly of limbo.
         Third, and farthest removed from Paradiso and teetering on the edge of Inferno, are parents of disabled kids who simply could not do it.   You find them neither blogging nor on chat groups.  They cannot even support themselves let alone their children.  They have nothing: no resources, no energy, battered by life, little education and do not survive.  They place their children in institutions, in pediatric nursing homes or other care facilities.  The energy to visit their children diminishes over time, they are devoid of the lust for life.  Children in these situations fail to survive. "Abandon all hope, ye who enter here."
         My hearts bleeds for this group, my heart bleeds for the second circle.  It is only the first circle that the universe has provided what is needed.  I often wonder why society and humanity cannot look at those who have been totally beaten down by life and why humanity cannot provide an equal opportunity to parents and kids at each level of suffering.  We bailout banks and insurance companies, subsidize energy conglomerates and pay unconscionable salaries to government bureaucrats, yet deny (as in Massachusetts) dental care for severely disabled adults.
         I am thankful that I live in the first circle, I love to philosophize about the nature of disability, alternative treatments, provide verbal support to fellow parents of disabled kids.  There is a bigger issue, perhaps as the existentialist, Albert Camus, stated : "I refuse to live in a world where little children suffer and die each day."  That's my problem; I have no solution.

Opening Pandora's Box...

       In ancient Greek mythology, Pandora, the first woman on earth, was given a jar which was not to be opened under any circumstance.   Well, Pandora, much like the biblical Eve who ate the forbidden fruit provided by the friendly snake, opened the jar which supposedly released all the types of evil on the world, except Hope which was still trapped inside.  Could this be the explanation why most bloggers are women who do what they aren't supposed to and challenge mankind to think and reflect?  Regardless of this sexist innuendo, I am ready to open Pandora's mythical box or perhaps take a bite out of the forbidden fruit.

       The opening of the jar releases my greatest fear and perhaps the greatest fear of all parents of quite severely disabled children:  when I pass on, check out, am gone, sealed in a water-tight coffin or reduced to ashes with my urn placed on someones mantle, who will take the same dedicated, loving care of my child.  Given our belief in caring full time for our son, in our home, and given the ever growing repertoire of therapies, the probably of Adam outliving us all is extremely high.  Despite the severity of his injuries, his need for 24 hour a day care and his aesthetically imperfect hands and feet, all body systems are pretty operational and his spiritual system optimal.  With loving care, his life expectancy far surpasses ours.

       Of course, our daughter is charged with the supervision and execution of his care plan and well-being when we are dust.  Of course, he will be cared for in our home.  Of course, I can never guarantee the level of dedication and commitment that parents provide.  So this is the fear  which has erupted from the opened jar.  Unfortunately, we all have to take a bite out of that damn apple and release this plague,.

       One not so amazing observation is that no one has ever said, "If something ever happened to you and Sharon, we would be honored to step in and care for Adam, for however long it takes."  The issue is not money for his care, in our case, as we have taken care of that; the issue is compassionate, consistent, loving care.  I often ask where is that saint that will step up to the plate and make an offering...probably won't happen!

        So, all you can do is live in the very present moment, give your utmost and trust in the universe to provide as it always has.  Opening the jar, biting the fruit...you can never really stuff that dread back into the jar or make believe like you haven't tasted the apple.  At least, Pandora didn't let hope escape!

Getting On With Your Life...and Other Myths

Whether your child (or adult child) is disabled from birth or becomes disabled as the result of a life altering event, there is never a shortage of well-intentioned advice givers. Every parent instinctively makes a lifetime commitment to their son or daughter's care because it is simply the right thing to do. Obviously, this takes an enormous physical and emotional toll. Friends and family are often at the forefront in offering suggestions on ways to cope.

Most often repeated advice: "You need more help..."; "You need to get on with your life ..."; You need to get closure..."; and "You need to plan for a place of care when you are no longer able to do it yourself...." Everyone is often long on advice and short on direct help or substantive relief.

Yes, we do need more help (hired, of course), but in whose hands would you trust your child? Yes, we need to get on with our lives, but our child IS OUR LIFE and we choose to embrace that life with passion (it just doesn't look like every other person's life). Yes, we are told we need closure surrounding trauma which we witnessed and live with daily, but closure is an impossibility and we choose to embrace what IS; you don't just get over it. And yes, when caregivers get old, you need a plan for your child's care, but "not being home with mom and dad" is neither a passionate nor a compassionate plan for the future.

So, we have each other as a family and we will endure. We are happy with a warm cup of coffee and kind words and your presence. "Love is simply being there when you don't have to......."