the power of optimism

Before the boys were born there was a sweet joke going around. A mother had twin sons. One was a pessimist and the other an optimist. the mother found it extremely difficult to deal with such different personalities so she took them to a psychologist to see if she could cheer one up and bring the other down to earth. The Dr. suggested that for the boys upcoming birthday she fill one room with toys and another with manure. she was to give the room with toys to the pessimist and the room with manure to the optimist. when their mother looked in on the boys the pessimist was sitting in the room complaining "this is not what I asked for, these toys are right...etc. then she opened the room of manure, only to find her other son digging joyfully through the pile of poop. she asked  the boy what he was doing and to her surprise, he answered "with this much shit, I know there has to be a pony in here somewhere!"
Once I had my sons, it was not too hard to figure out which one would be looking for the pony. Connor truly embodied the expression: Making the best of a bad situation. I recall a camping trip to Niagara Falls, where we rented a cabin at the KOA. behind the cabin about 10 feet away were the train tracks. you can imagine what the cabin felt like when a train went by, which they did about every 2 hours. Connor, who was about 6 at the time looked at the train rumbling by and said "look mom, they even have trains here!" with such exuberance it was hard not to share his joy.
it was this optimism that has kept us going through good and bad over the years. all of the naysayers and worry warts could not get him down. If there was a play, he tried out for it--never mind if the venues or stages were not wheelchair accessible, we would find a way. if there was a wrong in the school he would right it. He ran for student council and won changing their policy on "safe spaces" and starting a gay straight alliance.
when he got to University, I was sure that the room of manure was finally going to catch up with him. This was the first environment that he had ever been in where he was not the only "wheeley", and needless to say there were more than enough of the pessimist twin to fulfill the role. Indeed, at one point he asked me "why am I not as bitter as everyone else about my disability?" to which I answered, I suppose because we are not bitter about your disability so why would you be?.

The gloom and doom attitudes almost got the better of him. for a year, in an effort to conform and fit in, Connor became old and bitter; I lost my optimist, and to be truthful, I was lost without him. I am neither a pessimist or an optimist; I am a realist. however, us realists need some optimism in our lives to keep us going. after all, reality bites and is quite pessimistic at times.
Finally, Connor gave up the sham of trying to be life bitter in order to fit in and became his sunny self again. He told me that he just decided to not give a damn about people being so dark and twisty with their expectation that he should be the same and that they would just have to accept his cheerful self.
See, there was a pony in all that manure.Leave it to Connor to find it!
Oh and my pessimist? while Jarrett has cheered up over the years, especially when he remembers to eat so that he doesn't get grumpy, he still sees a cut as a "gash" and EVERYTHING is a crisis!
 but I can only conquer one mountain at a time.

The bitch is back--Elton might have been on to something

According to the oxford dictionary a Bitch is defined as:noun

• 1a female dog, wolf, fox, or otter.

• 2 informal a spiteful or unpleasant woman.
• black slang a woman (used in a non-derogatory sense).
• a person who is completely subservient to another.

• 3 (a bitch) informal a difficult or unpleasant situation or thing:working the night shift is a bitch

• 4 informal a complaint:my big bitch is that there’s nothing new here
  
  I have frequently been described as a bitch as I am sure many women of my age and profession have but in my case it has become something more. Indeed it has on many occasions gotten me into trouble. I have very few filters between my brain and mouth; some would say I have no filters! and I am fearless in defending what I believe in, whether it be a principle or a friend, I never give up the fight. I used to think that this was simply open, honest communication, until I learned that you can only engage in open, honest communication with people who actually took the open, honest communication course. all others simply see you as an insulting, argumentative bitch!as you can imagine, this has led to many conflicts in my life. Indeed, I have come close to losing a job, family and friends due to my vehement defence of something I believe is right or fighting for what I think should happen. Max is not the male equivalent of "a bitch" and that has frequently led to the inevitable question, "what is a nice guy like that doing with a BITCH like her!" Many can shake their heads and say, no I am sure that isn't so, but it is! I have even been asked to my face over the last 35 years and even by members of my own family. So knowing all this and knowing that life would be so much easier not to be a bitch, one might question that if I am aware of this, why would I not do everything in my power to change? After all, life is quite simple and pleasant for the non-bitches of the world. the answer is actually quite simple; all the things that go into making me a bitch are also the things that have allowed me to be mother of a child with special needs: my quick wit, loud voice and tenacious ability to fight for what I believe in were the tools I need for the job of being a mother to a child with cerebral palsy.it is not for the faint of heart. things that come natural for other parents, are a continual battle for those of us who have had the role thrust upon us. Inclusion, accessibility, understanding and accommodation, all have to be fought for, and it is not a war for the faint of heart or the quiet of spirit. The path of least resistance has no place in raising a disabled child and if you were not a bitch when you started the journey, I can almost guarantee that you will be by the end of it. if your child is to receive the care, attention and education that they deserve, you will have to fight for it; sometimes, over and over again. all of the things that got me into trouble in my "other" life, were the very tools that I required to acquire all that Connor deserved. The school system and health care system do not cater well to those who just "go along". it truly is the squeaky wheel that gets the grease. If someone is willing to settle for the bare minimum; that is what they will receive. Bitches never settle. Connor has told me on several occasions that EA's, teachers, attendants and even his friends are "terrified" of me. I find that somewhat hard to believe but I do think that they have learned to be wary of me and know that I am a she-wolf protecting her cub if I believe that Connor has not been treated as fairly as the rest. as a result, in nursery school, grade school, high school and university, Connor has always achieved everything that he could.

  

  Perhaps that is where the application of the word towards women came about in the first place. Men realised that you do not mess with a woman protecting her babe. The problem is that a child with special needs requires so much more protection, in so many different ways and for so much longer. And so, I go on being the bitch. the one who speaks her mind and fights for what she believes in, even if no one is listening at that moment, I know that if my bitch-skills are needed to fight the good fight they have been honed to perfection. it may not, on the surface, be something that I should crow about. But, it is that survival technique that has gotten us this far and will take us even farther. Therefore, I remain "the bitch" and darn proud of it!

Books: my lifelong love

I love books.  I know that this is ironic coming from someone who is writing a blog, but I love them. I have tried to embrace the new technology of e-readers; yet, there is something about books that remains deep in my psyche and being. They have stood the test of time, something that our technology of today has not. the first printing press came into existence in the 1500's changing the face of the economic world and society in general. where books before the press had to be handwritten and therefore only for the wealthy or for state, books became available for the common man. there is something deeply sensual about reading a book. it is more than the story itself; it reaches us on all of our senses: sight, smell, hearing, and touch. we see the pages, we smell the paper and ink and sometimes we smell the places the book was before. we hear the pages turn as we finger them and turn them. books are deeply ingrained in our society at large. Expressions like, "a real page turner" do not translate themselves as well into the e-book world. I believe that books will always be with us. My rationale is somewhat flawed on this point and based solely on fiction, science fiction to be exact. In almost every movie or series of the future, with all of the other changes that is predicted, the book remains. Kirk gets one as a birthday present in Star Trek, the library exists still in Logans Run. the books are the constant, the anchor to the past and the straddle to the future. Max and I have discovered a used book store near our property, in Powassan where you can fill a bag with books for $8.00. I leave there sometimes thinking that I have gone to heaven, my bag of books in tow.

what is with all the texting????????-Or why I think it should be banned

http://www.chatelaine.com/living/phone-addiction-put-down-your-phone-challenge/

We all have seen it or been annoyed by it: the texter. The person that no matter what has to be in touch with every moment in time. I have yet to hear anyone, even the most ardent texter say anything positive about it. yet, we continue to need an instantaneous society. One in which, every second of every day must be taken up with communication. the problem seems to be that more and more we move away from the communication that actually connects us to each other towards one that hobbles us to machinery. IT is everywhere: malls, theaters, offices and workplaces. even my workplace and I work in a critical care area of a medium size hospital. I find it difficult to believe that ANYTHING my co-workers are texting about or checking on could be more important than the care we are paid to provide. However, I have well established that I am a techno-dino, so perhaps my opinion is not as current as it should be. but when did it become as necessary as breathing to be instantly and immediately informed of absolutely everything that is happening with everyone. For those who say that they use it for work purposes, consider this: every minute that you spend texting about employment matters when you are not in the work place or during regular work hours, you are working for FREE! Can you imagine if your employer said to you , "I want you to work 6 days a week, but I am only going to pay you for 5 days at straight time." the labor rights people would be in an uproar. but I am willing to bet if you added up every minute of time you texted and answered other texts, it would not take long to add up to several hours over the course of a month. I say it again:" do you like working for free???
 Don't get me wrong, I text; occasionally, if I remember to charge my phone and mostly to remind my husband to pick up something on his way home. If it was limited to that amount i would find it very livable. However,  more and more the act of texting, rather than connecting us to each others, seperates us from each other. How? because it is doubtful that you are texting the person that you are with at the time you are sending the text. Furthermore, as people walk through our society cellphone in hand typing away, they are missing the very real beauty around us.
One day, when I was leaving a physio appointment, I sat to put on my boots. a young boy around 3 years old was sitting beside me, his mother beside him. She was texting; he was holding a book.
it was very obvious that this little man wanted someone to read to him. as I sat down, he boldly laid the book in my lap. Since my guys are way past the joyful age of actually wanting me to sit and read to them, I was flattered and took up the gauntlet. His mother briefly looked up from her phone and smiled and then went back to texting. My heart went out to both of them.. Her because the time that she has just missed will never come again and him because he was growing in a world where typing was becoming a more important form of entertainment and diversion than reading a story to a child you have given birth to.
Since then, I have declared war on texting in my presence. I usually say something like "please stop texting; nothing that you could be saying there is more important than the moment you are in right now." and for the most part the offender agrees with me. they are usually checking emails or having a quick chat with an acquaintance.
Recently, there was a story about a women who was supposedly out for a lovely Sunday walk with her husband and son. Apparently the day was so nice that it needed to be interrupted by her sending a text to her work. Unfortunately for her, they were walking on a pier and she ran out of dock, texting her way into a channel of Lake Michigan. Luckily, her husband and other passers by were able to rescue her. I am not sure if they rescued her device though; nor would I be surprised to hear that she had given up texting forever. since first hearing this story, Max and I have been keeping track of the "unusual texting" we have seen. So far we have seen people texting on bikes, skateboards (driving of course; Jarrett even got a traffic ticket for it!) and my personal favorite: a teenage girl with her feet in a hot tub at a water park in a hotel texting while her parents were in the tub.
Come on people! what could be that imp?? put down the technology and take an interest in the people you are with. Nothing, and I mean nothing could be as important as the people you are with and the moment you are in. after all, you may not get another moment and with the way things are going, Texting is becoming fatal!
http://ca.news.yahoo.com/blogs/daily-buzz/woman-falls-off-pier-while-texting-walking-michigan-193230713.html

Its not the climb up the mountain, it is the coming down

on the Sunday morning after Connor's graduation, when we woke up, Max asked me "so, how sore are you? You were really working hard yesterday." I replied that "it wasn't the work yesterday that made me hurt; it was the 22 years before." at which, I promptly burst into tears. i hadn't cried that much in the days previously or even as he got his diploma and medal. Connor had treated the graduation with such passivity, almost disdain, I knew that this was just the first, the first degree of many; the smallest of many more mountains that he planned to climb. As much I thought I had finished, that the task might be complete, he knew that it had just begun. there would always be a grander, taller, harder, mountain to climb. I aslo realized that, much to my surprise, it wasn't the climb, the going up that hurt, it was the decent, the coming down that really hurt.
For all those years, the "naysayers" told us what he wouldn't do as a person and what we couldn't be as a family. Sometimes, what were the worse moments when having Connor's challenges in our lives, were dismissed as being "no big deal." the times when the magnitude of his disability and just what it took to get him transported to an event, dinner or party was afforded (by some) as much after thought as a person would take in choosing what kind of donut they were going to order at Tim Hortons that morning.
But, we did it!. One day at a time, one foot after the other, one wheel after the other, hand in hand we climbed the mountains. I would be lying if I said that there had not been many tears along the way or that there were not a thousand times I thought about giving up, turning around and never going another step. Luckily, we all dragged each other along:Connor, Max, Jarrett and myself, we climbed our Mount Everest.

Recently, there was a news story about a Canadian woman who had died fulfilling her life long dream of reaching the summit of Mount Everest.As it turned out, she did not die climbing the mountain; she reached the summit and unfurled the Canadian flag. She perished on the decent from exhaustion and "altitude sickness:She had spent too much time at the top.
Crying in the hotel room, I knew that Connor had the right idea: you should just find a higher mountain to climb, a bigger one, a harder one. It is not the going up that hurts; its the decent and the sudden stops that really injure you!

being invisible

It is hard to believe that someone that is encase in a large mechanical device, can be invisible but Connor has been invisible on more than one occasion. when he was young, it used to astound me how many individuals would walk right into his chair--in malls, parks and other places--as if he did not exist, as if he were invisible.

when Connor was in high school he participated in the drama club. in fact, he won the Drama award for the highest overall mark. that not withstanding, he was never invited to a class or drama party, never asked to go on school trips and was generally excluded from most events. For all intense purposes he was invisible. Considering the size of his wheelchair and himself, to make him invisible took quite a bit of ingeniuity; but he remained invisible nonetheless. If you mentioned to his fellow students that the parties and venues that they chose were inacessible and that they were deliberately excluding Connor, they would have been mortified. so he remained invisible.
Our families, with no malice intended, all have wheelchair inaccessible homes, even though 2 were purchased after Connor's birth and diagnosis. Every year there is a great discussion in our home about Christmas and the inevitable logistic nightmare of having Connor attend the family Christmas eve dinner; no matter where it is there are problems. The biggest one being that he is invisible. No one talks to him. he and I sit together, usually at a table catching up. One year, a former girlfriend of Jarrett's was there and observed this phenomenon; being a recent graduate of psychology, she was quite fascinated! She noted that there were people all around him, yet, not one had made any effort to engage him in conversation, despite the fact that we were in a house that was less than 1000 square feet. Connor smiled, and said "that's nothing, watch this!" and at that point he yelled out "ROUGH PIRATE SEX" there was no reaction: no head turned, no conversation stopped, no shhhhhhh from the various mothers in the room; he was, for all intense purposes, invisible.
Fast forward to University. Connor is about to graduate from the Humanities and after 4 years he is still invisible. He has won the Senate medal of Honor for the highest achievement in the Humanities program, yet, the post graduate party has been planned at a venue that is inaccessible. This is not the first time in his university career that this has happened but it is certainly the most important.
What most people do not understand is that there is more to inaccessibility than a set of stairs. If the place is not set up with wheelchairs in mind, then there will not be bathroom will not be accessible, nor will it be easy enough for an electric wheelchair to manoeuvre around. Yes, he could transfer to a manual wheelchair, but this leaves him helpless and more invisible. he is then totally dependant on those around.
I have often been accused of being too dramatic, perhaps even melodramatic; however, I highly doubt that any event that involved people of different racial background would be held at a Klu Klux Klan rally. Nor would a PRIDE event occur at a Heritage party meeting. Yet, it does not enter into very many people's consciousness, that a person may not be physically able to enter a premises. the problem is not just that the building has stairs; it is also a perception of the disabled community in general. I describe it as there being two kinds of wheelchair accessible: regular wheelchair and Connor wheelchair. Most of the public think of the media model of the disabled when seeing to accessibility--the Rick Hansen chair or Artie on Glee (who ironically, is played by an able bodied actor). these people are paraplegic and a small part of the disabled community: they still have full use of their arms. Connor and many like him, do not. they therefore, have become the invisible part of our society.
Once, when giving a keynote address to a group of teachers, Connor was asked, which did he think more marginalised him: being gay or being disabled. he answered that he thought that it was being gay, since it was socially unacceptable to be openly hostile toward people in wheelchairs but there are still factions of our society, in which, derogatory remarks toward differently gendered persons are acceptable. Looking on it now, I think he may be in error, because  being invisible seems so much worse.

“Never underestimate the power of a small group of committed people to change the world. In fact, it is the only thing that ever has.” Margaret Mead

I have frequently used the above quote to keep myself and others going when times seem so insurmountable that giving up would be easier. the day that we were given Connor's diagnosis was one of those days. we had spent the morning and afternoon been poked, prodded and assessed by every speciality that the Bloorview centre could throw at us and then were place in a physicians office to wait while the "team" put together their results to let us know what the final outcome was. Connor was 15months old at the time. We had already been told at 7months of age that he had cerebral palsy, but that it was probably "diplegic" and only affected one part of his body.
as part of the assessment it was necessary for the whole family to be present. so there we were, Max (feeling very uncomfortable with the medical model) Jarrett (to say at this point that he was bored and fracticious would be an understatement) Connor, (tired, hungry and worn out from the testing) and myself utterly and absolutely exhausted in every way!
After a time, the Dr. came in. I cannot remember her full name, probably because she always had us call her Shelley, but I knew by the look on her face that we were not going to like what she had to say; I had worn that same look many times.

She started with all the medical lingo of the things that the physiotherapist, speech and occupational therapist had discovered. To be honest, I have no idea what she said; Jarrett had chosen that moment to show me something or other and Max was shifting uncomfortable. But, if I could take a picture with my mind I could tell you everything about that moment: the colour of the walls, the examination table that was there, the cars Jarrett was playing with, and how Max was holding Connor and bouncing him, sneaking hugs at the same time. Then, the Dr. said something that did catch my attention, "some children with some kinds of cerebral palsy can walk; Connor is not one of those children. it is unlikely he will ever be able to sit, walk, run, or even do much for himself since his disability was Spastic Quadriplegic Cerebral Palsy." this diagnosis essentially meant that he had the most debilitating form of the disorder at all. At that moment, Max burst into the most heart wrenching sobs I have ever heard, and at seeing his father cry, Jarrett thought that he should join in. I must say I was confused at best at what to do next. I remember the Dr. asking if she could get us anything. in my usual sarcastic way, I quipped:"Kleenex"

She asked if she could answer any questions with the caveat that she knew this was a lot to take in. It might seem strange but I asked if his disability would change how he looked. To say that Connor was a beautiful child was an understatement. His skin was porcelain and his eyes emerald green. He had a smile that dimpled and sparkled his eyes. the thought of a disability taking that away from him as well as everything else was too much to bear--so I asked. her answer was that he was a beautiful child and that would not change--but was I not concerned with the other problems we were facing, was there nothing she could answer about all that?
I straightened my spine, handed Max another tissue, held Connor that much closer and looked at her and said, " You don't know me and you don't know my son. Do not tell me what he cannot do or will not do; Let us show you what he can.

Along the journey we met many therapists and helpers. Connor did learn to sit on his own and did so until his legs were too spastic to cross. With the help of an electric wheelchair, he not only walked he ran! Many times in the opposite direction of where I wanted him to go. He played hockey, took Jujitsu, music lessons, acted in plays and ran for student council, among other things.
In school he was told not to take French or other languages because of his learning disability. he was also told in grade 9 that he would not be able to keep his A average up; he succeeded in maintaining his A average up to the end of his Bachelors degree!

Next week he graduates from Carleton University with a Honours Degree in the combined major of Humanities and Religion with a minor in English. He is graduating with highest Honors and is the winner of the Senate medal for Humanities--granted to the student with the highest level of achievement in their program. He not only can walk and run but now he flies!

So embrace the idea that you can change the world or anything else that you seek out to try. Never discount that ability. as Margret Mead said: “

Never underestimate the power of a small group of committed people to change the world. In fact, it is the only thing that ever has.”

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Margaret Mead