World Autism Awareness Day Speech

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Three parents of children on the ASD spectrum made a choice to organize the first ever “World Autism Awareness Day” walk, here in Winnipeg, MB. They know me through two Facebook pages, one to which I operate. They came to me and asked me to be the guest speaker to convey a positive message there is help.

Here it is:

526509_10151389882551033_1005677458_nWOW. Those who know me have heard me say, sometimes our English language does not provide us a word that can truly describe a moment. This is one of those moments. The only way I can truly express my thoughts at this turnout are stolen from Tigger – ABSOLUTELY POSITIVELY RIDICULOUS. In a good way of course.

Today is the 6th annual International United Nations World Autism Awareness Day. More importantly, this is the first year that Canada has officially recognized this April 2nd occasion, since it was passed as the World Autism Awareness Day bill, last October. To celebrate it, three local parents made a decision to organize tonight’s event; Lou Lovrin, Mike Wilwand and Arlene Reid. It is them who have worked tirelessly amongst all their other responsibilities as parents, to bake, colour, decorate, coordinate and Light It Up Blue.

Many of us have been around the lap with one of our children when we first heard the diagnosis of “autism” or what is now considered the “autism spectrum disorder“, ASD. Some of these parents/caregivers have been around that lap with more than one of their children and some of us have been running it for more than 20 years.

We want parents to know there is support out there, especially for those who have recently received a diagnosis. Marni Wachs Zuke started a Facebook page for residents of Manitoba that had children on the spectrum about 6 years ago. That was eventually taken over by Crystal Caruso Costello and myself. Lou and Mike saw a need and created PACE – a place where like-minded people with children on the spectrum could meet for a coffee, take a break and meet on Tuesday evenings at the North Y for the kids to have some Plain old-fashioned fun.

Autism literally means selfism and the first signs tend to show in an infant with delayed communication and social skills. As they grow older, particular situations cause stress and anxiety which leads to physical pain. While a parent receives an ASD diagnosis, there are many underlying issues. To name a few, they are also dealing with: AD/HD, sensory processing disorder, tics, anxiety disorder, global developmental delay, obsessive compulsive disorder, oppositional defiant disorder, depression, Tourette’s, epilepsy, seizures and the list goes on. Our children’s brains are wired differently and in many cases built a little differently, too.

Hearing the diagnosis, for most of us, is one of the most difficult situations we have encountered. We want parents, caregivers, brothers, sisters, grandparents, aunts and uncles to know…..there is help.  Navigating the health system, the educational system and social services, while you are trying to hold your head above water is taxing. We want you to reach out for yourself or for someone you love. There are people who care and get it. More than you know. There are over 30 groups and organizations that service individuals with Autism here in Manitoba. And we also have ABA – Applied Behaviour Analysis Therapy, Manitoba Families for Floortime therapy, the Rehab Centre for Children, and Variety – The Children’s Charity of Manitoba.

We appreciate all levels of government for listening to the needs of people with Autism. The Federal government for recognizing TODAY — April 2nd. For offering Registered Disability Savings Plans and making changes each year AND the Disability Tax Credit. The provincial government through their THRIVE campaign, designating additional dollars for support to families, to pre-school and school-age ABA programs and funding in the school system for children specifically with Autism. They are creating awareness, training professionals in the service sector and delivering community partnerships. At the municipal level, City Hall Lit It Up Blue last year. Companies are hiring individuals on the spectrum, such as Sobeys, Safeway and MLCC to name a few. Canadians and Manitobans are listening.

We came here as a collective tonight to continue to be the voices for our children and with our children. More work needs to be done. Approximately 10% of those qualified have actually opened a RDSP. The process needs to be simpler and the product needs to be easier to understand, along with withdrawals with fewer restrictions. The province has to ensure follow-up with THRIVE through the DISABILITIES office and it’s effectiveness, as well as ensuring that the right hand knows what the left hand is doing. Residential care has up to a 7 year waiting list and yet due to recent National Building code adoption, province community group homes are sitting empty, while the crest of Autism reaches an age of independence. We need a medical system that not just labels Autism but that will investigate and treat the underlying issues of ASD, such as Gastrointestinal diseases like chronic constipation and inflammatory bowel syndrome, seizure disorders, sleep dysfunctions, sensory processing disorder and PICA, the habit of eating non-eatables. We cannot wait in an emergency ward for 9 hours while they are vomiting from significant pain. The Board of Education MUST treat everyone equally; therefore, Service Dogs are Service Dogs, whether trained for the blind, seizure disorders or for safety reasons, no matter why School Division you live in.  The City must continue ensuring accessibility in buildings and play equipment, along with awareness, such as Light It Up Blue. For every penny, can I even say that anymore, okay nickel that is spent NOW, the less of a financial task in the future. We want our children to grow up as independent as possible.

We the parents and caregivers must stay as a collective, and though Autism brings out the unique needs of each of our children, we must band together and not divide ourselves between Auties vs. Aspies, ABA vs. Floortime, early treatment and treatment.

We must continue to understand HOW this has happened, in order to be preventative for the future, but must also continue how to help our children through therapies, the educational system and the medical system. Autism does not fall to the wayside once they turn 18. They continue to have needs in the medical system and those areas need to be addressed in a much timelier fashion. Our community needs to understand it is almost impossible to have two full-time working parents, due to the needs of these children. Doctor’s appointments, therapies and repetitive paperwork for everything under the son. Single parents are struggling to stay employed, if they can be. They need OUR help!

How can you help? Offer to cook a dinner, watch a movie with the kids so the parent can have a relaxing bath for 30 minutes, go to an appointment with them and offer helping hands, take them out for a coffee, do a load of laundry, clean a room, volunteer at Special Olympics, advocate for change, listen to their meltdown and offer a hug, stop staring and offer encouraging words, open a door.

Our children are not bad children and we are not bad parents. We have become behavioural therapists, occupational therapists, Speech therapists, teachers, nurses, doctors, advocates and much more. This was not by choice but by necessity. And it is my belief that the purpose of my journey, to which I walked mostly alone, to share what I have learned along the way.

Today is not only about awareness but as my T-shirt expresses – acceptance.

Our forefathers and mothers broke down barriers. Institutions are shutting down, integration is a norm, and the government listened that ABA can work. We need to remember them always because they fought bigger battles than we can imagine.

Look around you. Do you see Autism or do you see individuals of tomorrow asking us to join their world. A world that has less lights, less noise, less hustle and bustle. That bring us back to the joy of a single cloud floating through a clear Manitoba blue sky, an ant with food for a hundred of his family, the comfort of a teddy bear, a laugh that roots itself in the belly or the joy of throwing snow in the air to squeals of giggles.

Lydia Brown, an autistic student from Georgetown University has an important message.

Accept Us….Autism is a part of who we are.

Respect Us…we are fellow human beings.

Support Us…. We are disabled in varying degrees and in multiple ways. We need support, services, and accommodations to successfully navigate a world not made for us.

Include Us…We deserve equal access and opportunity throughout the community and throughout our lifespans.

Listen to Us….too many conversations about us and issues that affect our lives take place without any of us present.

Tonight Arlene, Mike and Lou made a dream of mine come true. This is our moment to enrich our children’s lives and provide them the opportunity for their creative spirits to rise. It is my wish, that in a few years, we can change today from World Autism Awareness day to World Autism Acceptance day. Thank you.

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Courtesy of Anthony Mark Photography

From Troy’s Brother!

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Yesterday was World Autism Awareness Day. I was asked to be the guest speaker at the event. Late yesterday afternoon, Troy’s older brother, send me a post to put on our Autism Facebook page. Here it is in it’s entirety:
From The Brother You’ve Always Had, To the Conversation We’ve Never Had

It was 19 years, 6 months and 4 days ago that my brother was born. He was born with the name Troy Marshall Fountain. Only 14 months younger than me he is almost as close to me in age as siblings can be. Disregarding a theory of relativity, time would truly seem relative to all those relatives that knew my brother and I. My parents, grandparents, aunts and uncles and anyone that knew us would over the years would watch time separate us. Though 19 and half years old, my brother has never spoken a word, never made a meal, never gone to the bathroom alone, never called a friend over, never spent one hour truly by himself. This is because my brother is diagnosed with GDD or Global Developmental Delay, my definition of this condition is the equivalent of a doctor saying “He’s slow in every way and we don’t know why”.

You can probably only imagine the effect that this has had on those who have been around him his whole life. I can only guess that it was my brother that was the cause for my mother only having 2 children. I would suspect one of the main reasons for my father’s drinking which in turn ended their marriage. If being a parent is truly the toughest jobs in the world then my mother is one of the greatest ever with facts to back it up. She has been the parent of a child no more independent than a 2 or 3 year old for an extra 16 years and she does it all in the face he will grow up and never truly be anybody to anybody other than us. I’ve watched her sacrifice a social life, a life filled with vacations, a promising corporate career and most importantly her certainty of happiness all for a love that is shown through temperamental emotions and without words.

As a brother, I can’t express the difficulty of being 6 years old and being explained that the brother you love more than anything in the world is not normal, will never talk to you, will never run with you, will never punch you when you’re being an asshole, will never tell you to man up. Maybe this is an exaggeration of memory but around age 11 when my parents separated, I truly became a parent, I was left to fill the void my absent father left, to become man of the house and a father to my own brother while my, now single, mother was out working to provide the best life she could for us. It was a heap of responsibility for one so young. Now that I live with a merged family that can split up the work load of taking care of my brother, I can only theorize that I now run from responsibility to avoid being stuck where I was years ago.

Despite being told my whole life that my brother being the way he is will never affect me, I will always live in the fear that if I were to have a child that the child would turn out the same. Even though I live every day second guessing my choices or lack thereof of not having a child, I can’t truly put into words the way that this fear affects my psyche when I look towards the future. When I feel truly cynical, I have lived with the pain of second guessing if I too am handicapped in some way. Even in optimism, told all of my life how I am so smart for my age and have so much potential despite my lack of drive, I can only wonder if fate, luck, god or science has blessed me with an abundance of intelligence and left my brother “empty handed”, so to speak, for some purpose I can only guess at. I hate to use this expression but it is the one that speaks truest to me, I have grown up with half of a brother. I have watched him grow at the same pace as me in age and age alone.

Maybe I’ve run out of things to say or maybe my nerves have caught up to me as the spontaneity of writing has lost it’s passion, in the face of sharing this with the world. Here nor there, that is as much of my story as I’m going to share. I didn’t share it for pity, I know my family and I are not the only ones who live in some kind of hardship, which is something that I think is hard for anyone to keep in mind. I did not share it for compassion, because compassion is something we all deserve equally. I shared it because today April 2, 2013 is Autism Awareness Day. All around the world people will be “Lighting it up Blue” in honor of this day, to acknowledge the efforts of those born with and those who care for those with, autism. Places like the Empire States Building, the CN Tower and Kingdom Tower have been lit up blue in the past and today if you see any blue lights on a house or building, I just ask for 5 second of your thoughts. Five seconds to think of the estimated 48 million people with autism on Earth and their families, to think of the 1 in 88 children in the United States that will be born with autism in the coming years, of the quarter of a million homes affected by autism in Canada. If you or anyone you know has been touched by autism come to the Forks for 7:30 for a short walk to the ledge and hear a few words from some guest speakers. An hour of your time would make a lifetime of difference for some of these families, my own included.

It has been a long time, since I saw Troy’s older brother proud to be his brother.  I saw this yesterday.  Half way through my speech, he decided he wanted to speak.  Unfortunately, whoever planned April 2nd as World Autism Awareness Day is not aware of how cold it can still be here in Winnipeg, MB.  He changed his mind and we agreed ‘next year’ is his turn.  He has struggled the last several years, but he recently told me he wants to go to University for Liberal Arts and get into politics.  I guarantee you, this young man has everything it takes to make a change in this world and moreso.  I am proud of the man he is becoming.

Good Deeds & A Pet Peeve!

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What an eventful week!  Here in Manitoba, it is Spring Break.  I think ours is a little later than normal, probably because we still have feet (yes, you read that right, feet) of snow.  Fortunately, as I am writing this, the sun is shining and bringing a slow melt to the glaring white stuff that is covering my stunning garden.  It’s almost like a gift this year, as last year we renovated our backyard, and the snow is the wrapping paper that will eventually unveil my wondrous oasis.

Good Deeds:  There are quite a few and none of them took much time at all.  Some mine, some others and all made the week just a little better.

1)  220px-Shetland_Sheepdog_600While heading towards a meeting, my older son and I were westbound on a very busy highway type road in Winnipeg.  There on the side of the road, heading straight towards us, was a Sheltie dog, barreling down the shoulder.  Both my son and I reacted.  I immediately turned down the next intersection, pulled a U-turn and waited impatiently for the light to change.

The dog had now gone past the next intersection and was approaching another.  Two things were in the dog’s favour, he was running facing traffic and both those intersections were T’s into sub-divisions.  The next intersection is a highway from the country and runs up the east side of the city.  We rushed towards Highway #59 and once again I safely pulled a U-Turn, put my four ways on and pulled onto the shoulder.

My son and I leaped out the SUV.  I went in front of my vehicle, kneeled down and pretended I had food in my hand, hoping the Sheltie would come towards me.  The dog was moving off the shoulder and onto the 80km road, so my son went out onto the road, faced the vehicles coming towards him and lifted his hands up, so they would slow down.  The dog charged towards my son, and for a brief moment, I thought he would stop at his feet.  No such luck, the dog went into a turbo run and flew by him, as if his ears had given him flight.

I sadly covered my eyes, as I saw a large city truck heading towards the dog.  The dog veered to the left and raced past him.  I saw a gentleman, who was to be turning left, leap out his car and run across the road to stop merging traffic.  He too, couldn’t catch him.  Both my son and I watched the dog hightail it out of there.

Throughout my entire meeting that afternoon all I could think of was the poor dog.  We had tried to contact the City, but they told us to post on a FB page.  When I got home to post, the dog has already been captured and returned to their owner safely.  I love happy endings.

2) Taking my mother-in-law to HomeSense on Friday, I had made my purchases and left the building to wait outside for her.  I wouldn’t say I am a nosey person, but certainly I am an observant person.

While in the store, just before we went to the cash registers, we noticed a woman being rather determined towards a store employee that the ‘up to 60% off’ sign, meant she should get an additional 60% off and that it was misleading advertising.  Whatever the point, I now realize that she was a significant part of the next set of events.  She was causing a diversion.

As I am standing enjoying the sunshine, I notice a woman walk past me towards the parking lot.  Within a minute or two, a gentleman comes out the store with a bulky skidoo type jacket on and his hands are in his pockets, but clearly the right hand is holding onto something of significant size underneath the coat.  He checks over his shoulder as he walks past me.  At that moment, the woman now passes him and says ‘what’s that?’.  I heard it clearly, but unfortunately I didn’t hear his response.  She re-enters the store.

My mother-in-law is now standing beside me and I tell her ‘watch, that guy is going to look directly at me, once he gets to his car’.  Sure enough he opens the back passenger door and as I see his left arm go under his coat, he raises his head to stare straight at me.

I tell my mother-in-law what is going on as we return to my vehicle.  She tells me to never mind, as it doesn’t really matter.  We sit in the car, while I struggle with my conscience and I watch as the man returns to the entrance of HomeSense.  Nope, can’t do it.  Told her to sit here and I’d be back.

I went into the store, asked an employee to get a manager discreetly.  I explained the situation, as the man happened to walk very close by us.  I decided I was going to wander the store looking for the woman, when I heard over the PA, “security to the front”.  Lovely, how discreet could you get?

Sure enough, the man had a package of high-end sheets and a blanket under his coat.  Apparently, I am told, they come in packs of 5 and one or two individuals are used as distractions.  They watched him leave the store and head towards another area of the outdoor mall.  The management called that store.

As we were leaving the parking lot, we notice the car had now been moved by a driver that sits in it and the man was heading to a third store.  The police don’t get called in these situations because it takes too long for them to arrive and it is too dangerous for the staff to hold them until the police arrive.  Everything is done as a deterrent and they don’t’ truly care what gets stolen.

Why should I care?  Because I do.  Theft affects us all in the prices we pay for things.

3)  526509_10151389882551033_1005677458_nThree individuals who have children on the Autism Spectrum, have decided to hold the first ever Manitoba Autism Awareness Walk on World Autism Awareness Day.  They needed help with a vast majority of things and I happened upon some of their needs.

I made a call to our YMCA/YWCA special needs coordinator and she dedicated a few hours, in order for the Spring Break campers to colour posters for the walk.  Kudos to Nichole Penner of the YMCA/YWCA of Winnipeg.

I then made a call to the diaper service we require for Troy’s needs.  I asked if they would be so kind to donate any cardboard they may have to back the posters for the kids to wear.  Westcare Diapers not only donated but delivered them to me for free.  Thank you Sharon Ponton-Ezako.

4)  A young woman who works with Troy in the afterschool Y program was to be working at the Spring Break camp this year.  She happens to live just outside the city and basically would be passing by my house to get to the camp.

I asked her if she would be so kind to pick up Troy each day, as it was difficult for Troy’s stepfather to do both directions and put in the required hours of his workweek.  This was no problem for her and she wanted to do it for free.

She not only picked Troy up each day but she brought him home as well.  Kaitlyn you are growing up to be an exceptional and generous human being.  Thank you, as you have no idea how this made a difference in our lives.  (I paid her because it’s the right thing to do).

THE PET PEEVE!

g244000000000000000e2cabdde6cf80f5fe41e62bf8028097e6606ee58I have a list of them but there is one that is getting under my skin more than anything these days.  Individuals who park their vehicles with no care whatsoever to those around them.  You know them!  They pull into a parking spot at an angle, so their tail end is either across the line or nose to nose with it.  They pull into a parking spot and couldn’t care less if they are across lines and taking up two parking spots.  Or they pull into a parking spot and don’t readjust their car and end up within inches of the neighbouring cars mirror/door.

Well Monday was another cold but sunny day.  I had gone in to grab a few groceries before I picked up Troy.  When I came out, someone owning a Murano parked so close to my mirror, I am not sure I could have put a strand of hair between their mirror and mine.  I easily could have gone to the passenger side and crawled across the front seat, but why should I have to.

So instead, I leaned against the back of their car and let the rays of the sun warm my skin.  I saw her coming and I am not sure why, but she hit the car alarm instead of the door by accident.

I asked her ‘Is this your car?”  She replied with a nod.  I said ‘Seriously, how on earth do you think I am supposed to get in my car?”  With a dumfounded look upon her face, she looked between the cars and back at me and said nothing.

“I could have run my key from one bumper to the next, but I didn’t”.  She then moved forward to see if I actually had.  I continued to speak, “I decided to wait and see who the ignorant moron was that parked their car so close to mine, I would have no choice but climb across the front seat”.  Finally, she decided to speak and stated “Sorry, I was in a hurry.”  “Really!”, I replied, “Well, I was in a hurry to pick up my disabled son, but apparently you feel your life is far more important than mine, so why don’t you go first”.  With that, she entered her car.

Sadly, she backed up without looking and had it not been for me standing there because I had to wait for her to leave, she would have hit a young man at the knees.  I yelled and he thumped both hands on her trunk.

Had I scratched her car, she would have had no clue as to why that happened.  This way I hope she tells at least six people about the crazy red-head in the Safeway parking lot, because those 6 should at least tell 2-3 more and maybe, just maybe, people will actually THINK before they jump out their car doors, ignorant of those around them.

I leave you with one thought:  Success is measured in many ways but mostly monetary.  Look around and observe, the world is full of opportunities to extend a hand, a kindness, a good word.  Try it, as it is incredibly rewarding.

The Black Hole

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black holeThis is a very personal story, one I don’t even share with my best friends. It’s a subject matter that is really difficult for me because to me, it means I am faulty, imperfect and not my truest self. This is something I attempt to achieve everyday in my life and though I know I am not perfect and I am my biggest critic.  I am always trying to better myself from the person I was the day before. As a matter of fact, few people even discuss this because it brings shame. It brings so much shame there has been international campaigns last month to ensure we bring it out in the open, to enable conversation and recognize it is nothing to be shameful of.

This journey that I begun almost 20 years ago has brought me to dark places at times. So dark, I have rarely ever shared them. There are moments the acceptance of how Troy is, paralyzes me with grief. No first girlfriend, no graduation dance, no wedding, no travelling to cool places, no friends he can just sit down and chat with, no drunken nights with his friends, no true love that will break his heart. It creeps up on me and creates a huge hole in my heart and the tears begin. They stream down my face and I begin to hyper-ventilate. I can’t control it. I become anxious and my sadness is so overwhelming, my husband and sons aren’t sure what to do. There have been moments where they think they should call an ambulance. I try desperately to bury it deep, but like anything with enormous pressure pushing down upon it, it eventually seeps out and then spews and finally explodes.

I hate pills. I am so adverse to them. The reason: my mother had rows of pills for depression, anxiety, panic attacks, anger management. I can still see them clearly in a neat row along her dresser and the doilie covered in dusting powder. I would sometimes lift the doilie, to see the patterns the powder would make on her dresser, all the time eyeing those pill bottles. It appears there is a pattern in the female side of my family that is generational and that bothers me even more. At some point in the early years of Troy’s life, I had to accept I needed help. That was a monumental hurdle I had to overcome because from basically 16 I was taking care of myself and making my own decisions. I owned my life mistakes and would move forward, but this one, this one with Troy, I took complete and total responsiblity for why he was the way he was and because of that, the pain was astronomical in my heart. Since then, I have been on and off medication, but the last several years I have had to accept it is what it is and take one every day. I still despise that I cannot control this piece of me and need a little pill to get me through life. Every so often, I will ‘forget’ taking them, only to realize a few days later the reason I am feeling the way I do, is because my frequency has changed and my anxiety is creeping back in.

The other day I had to get a refill to my prescription and this is what my doctor said because he knows I hate having to accept taking this pill. He said, “Anne think of this. A person buys himself a pick-up truck. It’s perfect for everything he wants to do and then one day he decided he is going to purchase a trailer home for him and his wife to travel in. The pick-up truck was perfect for running every day errands, but now that same engine is expected to haul an enormous amount of weight behind it, up and down mountains and valleys and unfortunately, it just wasn’t made to do that. So instead, he has to rethink how he can manage this.” Well I got it. All these years of analogies on justifying why I have to take a little pill to make the day a little easier, hit me. I could accept this.

We mothers (and fathers) try to navigate the world of a disabled child. For many of us, there was little support and very little information out there. For me, I don’t even have an official diagnosis for my son to even ensure I am getting the proper support for him. When Troy was born almost 20 years ago, Autism, ASD, ADD/ADHD, PDD-NOS, etc were pretty foreign words. I had no family support where I lived and as a matter of fact even from a distance, offered little. I had no true friends at the time I was told something was wrong with Troy. I had a career whereby bosses weren’t interested in your personal life. I had a young son under 2 that I was still trying to figure out how to just be a mother to. I had a husband who was dealing with the shock of what just happened and dealing with it in his own way. I had so much guilt, I was literally drowning in it.

We are all born with the same coping mechanisms. Some of us have to deal with more than others.  I certainly have had more than my fair share, but then I think of those in other countries and wonder who am I to think I have it worse.  I met up with a new friend the other day.  I somewhat pushed myself upon her because I knew she wouldn’t ask anyone but I knew she needed someone. She has a verbal child with Austim, as well as two other children. Her husband spends most of his life on the road – long haul truck driving. On top of trying to do all that she does, she for the past two years has had to deal with a tumour, chemo, stem-cell replacement, excruciating pain to her knee, a botched knee replacement and a 2nd knee replacement surgery and pain that I don’t think the English language has words to describe. During all of this she has negotiated two children through adolescence and has her daughter now entering it. I can’t even fathom how she does all this; in pain and on crutches. When visiting her the other day because I knew she was having a rough week, she had 3 one minute breakdowns. See that is all we truly allow ourselves to the public. We are supposed to be strong, carry the world on our shoulders like Atlas, and like the famous British War Statement “Be Calm and Carry On”.  Sometimes, life just hands some of us far too much and we need the kindness of other people.  And for others, like myself, well we need the ‘umpfff’ a tiny pill can give us to get us through some of the bumps!

But there are times, when it is all far too much. When the walls of life are closing in around us and our lungs cannot pull in the oxygen that we require for strength to move forward. When a vortex of emotions swallow us into the ‘black hole’ and it is impossible to escape. We need our family, we need our friends, we need support from the moment our children are diagnosed disabled and for many moments throughout their lives.

As Troy approaches 20, I have been looking at day programs to fill his days since he cannot truly hold a job and for a residence that someday (which is now sooner than later) he will have to move into, so that I too can live my life again. Each and every time I think of these, I begin to cry and I wallow in my sadness. So thank goodness for my little pill because if I didn’t have it, I know I truly could not cope with what life has thrown me.

Not For the Weak Stomached!

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One of the most challenging situations with Troy being non-verbal and minimal methods of communication is when he is ill. It is always painful to watch our children when they are suffering; however, I have to believe watching Troy when he is sick to be truly agonizing.

Since Troy was young, I have always been asked by doctors ‘are his bowels normal?’. Considering he is in diapers at the age of 19, generally speaking they have always been normal to what I knew Troy’s bowel movements to be. In all honesty, I don’t know what a bowel is supposed to look like in a diaper outside of what an infant’s looks like.

For many, many years, I have suspected something goes wrong when he has had a bowel movement. It is not when he has it, but at the time when we go to change him (trust me, I do not mean hours in between, I mean moments). After he has had one and we have cleaned him, he becomes extremely rigid. He goes into a trance-like state, wraps his arms around his tiny frame and tends to scratch his back or just hold himself with the strength of someone 4 times his size. We often have to leave him laying there because he physically cannot help us to get up. Throughout our medical journey I have brought this up to numerous doctors and nothing has become of our comments, except twice.

Once was a pediatrician here in Winnipeg and the other was our chiropractor. The pediatrician was completely stumped and could provide no explanation. He had us have X-rays done, to which nothing was found. Our chiropractor suggested I bring the X-rays to him and the first thing he noticed was that Troy had gas from his bowels to his upper stomach. Huge amounts of gas was built up. He suggested I contact the pediatrician again and so I did. I also contacted the location to which I had the X-rays done and asked why it wasn’t brought to our attention. Sadly, I was very mistreated by the receptionist there and told that if there was a concern the X-Ray doctor would have ensured it was brought to the pediatrician’s attention and that a chiropractor is not a doctor. In discussion with the pediatrician, again he couldn’t explain anything, but suggested we put Troy on a laxative, to which he commented ‘no harm, he can be on it for years’. I didn’t return to that pediatrician, as I do not believe on placing our children on any type of permanent medication without understanding the cause.

In the past several years, I have taken Troy off all forms of dairy, removed white sugar and white bread and limited whole wheat where I could. Still nothing really changed, with the exception his bowel movements were moving further apart. Sometimes 3-5 days would go by, before he had another one.

I then made a decision to check into a local pharmacy that offers additional assesments done outside our country. They are substantial in price, but my ‘gut’ instinct was I had nothing to lose, since I was getting anywhere within the medical community. It was through these tests, we found out Troy had a significant imbalance in specific bacteria within his bowels, the yeast/fungi components were unusually high, parasites were present and clearly there was an ‘imbalance of the gut floor’. We decided to enter into a regime of probiotic, enzymes, veggie compound drink and vitamins and withdraw as much sugar as possible. For the most part Troy’s diet is extremely healthy. We don’t use boxed foods, try to add the right amount of fruit and vegetables and avoid gluten or diary type foods. It’s important to note that Manitoba no longer pays for a lactose intolerance test, so that is why I was taking stabs in the dark.

Finally, we went from irregular bowel movements to a regular, what appeared to be normal, bowel movement each and every night around the same time. That was well over a year ago. It was in September of this past year, that we noticed Troy’s behaviour was changing dramatically. He would sleep from 9pm through to 11am on the weekends, be awake for 4-5 hours and then sleep again for another 3-4 hours. He seemed irritable a lot. He didn’t laugh as much, was always wringing his hands until they were white, jumping/stimming, screeching noises, and pounding to the ground on his knees. I realized this had started the last week of August and in the interim I had taken him to the doctor’s around the same time. Now that Troy is an adult and still undiagnosed, I had wanted to give ‘one more kick at the can’ for an official diagnosis because once he is in a day program and in his own residence, I’m not sure how much attention will be paid to this type of thing. It was from the blood work done that we had been called back to the doctors to find out Troy’s lipase level was at 559. (The norm is to be between 65-225). The doctor states he had a “grave concern” over the abnormal level of his pancreas and he would order a CT scan. That was early September.

Now for my American readers you may remember a film by Michael Moore, called “Sicko”, discussing his point of view on the American medical system and shared how we do things in Canada. Well though a fantastic documentary, it wasn’t completely realistic in my personal experience of our Canadian medical system. It has its flaws and many of them at that. We purpose it is free, but it is paid for by our taxes and our wait times are some of the most ridiculous in the first nations.

So now we wait for an appointment for a CT scan. We received notification in October that it was the first week of December. The treatment we received there and the respect Troy was given prompted me to contact the hospital and the supervisor to commend them. Unfortunately, ‘no abnormalities were noticeable’. Our family doctor proceeded to advise that this just means they couldn’t see anything. With a few tears in my eyes, I begged him as to what do we do next as I just can’t stand by watching Troy go through the pain. He told me, he was recommending Troy to a “Doogie Howser” type Gastrointestinal Surgeon in hopes of a colonoscopy and an endoscopy (camera up the rectum and another to go down his throat). YEA!, but that didn’t last long.

We received notification a few days before Christmas that the consultation only was booked for February 20th, 2013. WOW! I contacted the medical secretary of this “Doogie Howser” surgeon and asked if there was a waitlist and I was informed there wasn’t. In my half-joking manner, I said “That’s fantastic, Troy can be at the top of the list”. Clearly, that went over with a thud and I expected nothing more.

Over the holidays was on and off tough with Troy. We all knew he was in pain via his agitation, stimming, jumping, sleeping and generally grumpy status. This is not my happy little man with the belly laugh and no behavioural issues. Prior to the holidays, we had already received word from school, he had choked an Educational Assistant by twisting the necklace around her neck, pinched several children in the arm and dug nails into others. This was not our Troy. I started to research getting medical attention in the U.S. I found out there are medical brokers who could help us find services in the States, deep discounts at hospitals due to the economy and that the Mayo Clinic is so advance, they even show you how to navigate the Minneapolis airport if you wish to visit them in Rochester, MN. I was starting to consider risking Troy’s financial future by spending it directly on immediate medical care. My husband and I made a decision, next time Troy was vomiting I would call 911 for an ambulance and get him into emergency. If that didn’t work, then we would drive the 10 hours to Rochester, MN or fly and get him assessed there.

That moment came sooner than I thought. This past Sunday at dinner, it was evident Troy was in a fair amount of pain at the dinner table. By 10pm, his bowels exploded again. All seemed well, when I got him up for the first day back to school and he ate his healthy oatmeal, blackberries and almonds, with a glass of cucumber water. I went to put his coat on and he doubled over onto me. His lips curled in the way they do right prior to vomiting. He couldn’t stand for the pain, yet had the strength of 10 men in the same instant. His fingers wound tightly around the curls of my hair, his entire body weight leaning against me and barf on my hoodie, it was time to make a decision. He would switch from being curled in the fetal position to stretched out, writhing on the carpet like a snake. After 20 minutes, he quieted. His brother carried him to the couch and it seemed he was falling asleep. My husband left for work and within a few moments, an ear-piercing scream came from Troy. I called 911 immediately. They could see the bluish/purple skin around his eyes, the blue fingernails, the almost translucent skin and his lethagry. The paramedics made their assessment and off we went to the hospital.

Upon arrival, the triage nurse saw us first. I was advised that our wait would be a minimum 8-9 hours and blood work would be within the next hour, but more like 2-3. Now I don’t know about my readers, but I certainly know when I don’t have a coffee or tea in the morning, my brain works really slow. I was having difficulty computing the data. We were then escorted to the general emergency waiting area, but they were full, so Troy and I were placed in the hallway. So there I am, no cell phone, a fifty dollar bill and 2 quarters and no diapers. For someone so prepared for everything in life, I certainly came to the hospital completely unprepared for the equivilant of a work-shift. Many thoughts are rambling around in my head, one of which includes, we can drive to Minnesota faster than I will be seen in our own emergency department. The other is ‘how on earth do I get anyone to understand the severity of pain this kid is in’. Most importantly, ‘are you frickin’ serious that you think I can sit with an autistic-type individual who is in pain, vomiting and never sits still for 9 hours in a hospital hallway? Of course, how do I go pee and how do I get a cup of coffee was also crossing my mind. After about 30 minutes, I can see the pay phones are not far from where I am, so I wheel Troy over and hope that my husband (who has no idea we are at the hospital) will realize that the words “Coin Phone” on his call display will be me. He does and tells me he is on his way to pick me up. He had heard from our other son that we had gone to the hospital and wasn’t sure which one. He had already called our family doctor and was told to come for 11:30am. If Troy needed to be admitted, he would have him admitted through the doctor’s office. And this, is our amazing medical system!!!!!

We drive home to pick up diapers and Troy hasn’t vomited once since the paramedics arrived. I do all that I know what to do: kiss him, stroke him, hug him. We have what I think is one of the best doctors in Winnipeg; yet he comes with a price. Your scheduled appointment usually runs about an hour behind. We wait and Troy waits as patiently as he can. During the visit, the doctor is hearing us and it seems we are making some conclusions. He has assured us that he will call the specialist’s secretary every day, and ‘beg, plead and bribe’ until he is told not to anymore.

It is now 2:30pm and we are on our way home. We stop at the local deli to pick up a bite to eat for take-out. My husband’s work cell phone goes off, to which I never answer, but for some odd reason I did. It was the specialist’s secretary asking if we would be able to come in a week Tuesday, 8 days away. I was in shock. She hadn’t even heard from our doctor yet, but they had a cancellation and remembered my earlier phone call. As I sat in the car stunned, I looked up to the heavens and thanked my dad.

For the first time in many years, I feel we are finally on the right road with the right drivers. We suspect that since Troy does not chew his food properly, it is rotting in the bottom of his stomach. That rotten food is causing an extreme amount of gas, that gas builds up and causes the exploding bowels. This all in turn is affecting the pancreas.

And throughout this journey, I cannot stop myself from thinking, who is going to do all this when I die?

You Need to Take A Step, In Order to Move Forward!

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As each day passes, blogging became more and more on my mind.  I had so much to say, but no real direction.  Tons of ideas and events that happened that are relative, but I was stuck. 

Grief is different for each of us.  I lost my job and my father within a couple of weeks.  It has been an emotional time; however, the emotions didn’t coincide with one another.  At times I was so angry about my employment situation and yet teary with sadness about my dad.  I was lost.  I had lost my identity as a valuable employee and I was a daughter to no one.  My brain would rattle on for hours with speeches, scenarios, remembrance, ideas, all to which would completely tire me out.

I reflected on Eckart Tolle’s “A New Earth” and the labels we put upon ourselves and others.  I knew I was more than label but what?  I’m Anne, but what is Anne.  At times I feel my life is one big farce.  Words I have used to describe me are a kaleidoscope thinker or oxymoron of myself.  Spending time with your own self can be a good thing but it also can be a tormenting thing, at least in my head.  Ego seems to love a good starting point to plot itself against you.

Throughout all of this, life went on.  Sometimes I had a ton of energy and most times I lacked the vim and vigour to take a step forward.  I functioned.  I may have had the odd stumble forward, yet that was out of necessity.   

During the last week of August, Troy was going through a noticeable change.  His behaviour.  At first we put it down to 19-year-old laten hormones, but a random test the doctor did, showed his pancreatic levels were abnormally high.  “Grave concern” were the words our family doctor used.  Since, mid-September we have waited for a referral for a Cat Scan, which nothing visible was seen, and now we wait for our February 20th appointment for a consultation with a Gastrointestinal Surgeon.

So here is my first step, since Summer 2012.  One of many to catch up on significant events that happened to Troy and the journey through Canada’s medical system to find an answer to Troy’s significant pain. 

Welcome Back and welcome anew.

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Flying with the angels!

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On July 9th, I lost my Dad to cancer.  He had fought prostate cancer for 10 years, but it finally overcame him this past year, moving to his bones and then bladder.  I was fortunate to have been with him the moment he passed, as I live about 1,500 kms away from him.  One of the most difficult parts of moving away was knowing I would be so far from my Dad.  We had a unique relationship that was quiet but ran deep.

When I knew my dad was not well, I went to see him at the end of April.  I made peace with the fact, I most likely would not see him again, living.  A series of events happened that caused him to be going in and out of hospital, but the last visit to the hospital, his stay was much longer.  It appeared he would not be returning home and we needed to find a care facility for him.  We went from ‘the wheels haven’t fallen off the bus yet” to a retirement home won’t be able to meet his medical needs in about 3 weeks.

With Troy on summer vacation, the first week I spent with him and the following week while he was at day camp, I planned to see my dad.  These decisions are never easy ones, as the guilt of what Brian’s responsibilities become without me at home is really difficult.   I would fly out late Tuesday evening and return home on the Saturday night.

On Wednesday morning, Daphne (his long-time dearest friend or in my opinion, his girlfriend) and I arrived to find Dad extremely upset.  It appears him and the doctor had words and the words were rather harsh.  As suspected, Dad truly had no idea his life was ending due to the cancer and all the reasons he was ailing was due to the cancer.  It was his breaking point and finally the very next day, he said ‘guess it’s time to talk about the service’.  Up until that moment, there was NO discussing the subject matter.

On the Wednesday, though tired, we spent the day talking about this, that and everything in between.  On Thursday, I heard him telling jokes and laughing while going down memory lane with his good friend who he once worked with and then with my aunt and cousin.  One of the sweetest sounds that day was dad laughing, so far removed from the day before’s tears.  On the Friday, it seemed Dad had overdone himself the day before and for the most part he slept and said little.

Saturday was worse.  I was to leave that evening, but I knew even if I got myself to the airport, my feet would never get on Westjet’s plane home.  So I stayed, knowing the burden my wonderful partner was dealing with:  running a household, getting Troy to camp, preparing lunches, walking dogs, making dinner, showering Troy, etc.  The only help, our other two sons.

I will be forever grateful to my inner voice for I heard it say ‘stay’.  Two incredible events took place.  The first:  he really hadn’t said much Friday or Saturday, just a few words and mumbles here and there.  At a moment when Daphne had left the hospital room, he clearly said to me “I am so worried about Daphne”.  I told him, ‘it’s okay Dad, I will love her and take care of her”.  “Dad, can I ask  you a favour” and without waiting for a reply, “Dad I promise you with my word, I will look after Daphne, but can you do me a favour and watch over Troy for me”.  A tear fell from his right eye and he nodded his head very gently.  That was the last true interaction I had with him.

On the Monday when the doctor saw him again, we had less than 48 hours.  While my sister, Daphne and I were all doing crossword puzzles in his hospital room, I all of a sudden put the book down.  Dad looked slightly different from an hour ago.  I got up and leaned over his left side, whispering to him “I am right here dad and I love you very much.  Daphne is here and so is Cathie and we all love you very much”.  I gestured to Daphne and told her to come closer and at that time my sister asked if he was breathing, to which he was.  They moved into his right side.  I once again leaned closer to my dad’s ear and told him to fly with the angels.  And miraculously, he actually took his last breath and he did.

I have been mostly at peace with dad’s death, yet as each day passes my heart and mind are troubled.

Who will be with Troy when it becomes his time?  The reality is there won’t be a wife, nor children, highly unlikely it will be myself, his stepfather or father.  He has two step-brothers, but the one he has a huge connection with now lives in Australia and the other one, well there isn’t too much interaction between them.  He has his blood brother, but in my heart, his brother will have his own life by then. 

Who will make the time to tell Troy to fly with the angels?

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I Want…..

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Troy is basically non-verbal.

Yes, he says ‘mom, mom, mom’, usually when his bottom lip is coming out and he is terribly upset about something and this is the only time you will see him cry.

He use to say ‘bwah, bwah, bwah’, which we think meant Brian, his stepfather. He would say “bwahbwah”, which are sure meant his brother.  He would mimic sounds that he heard from us and go up and down a scale with them.  But we rarely hear that anymore.

A long time ago, I heard him say ‘grandma’ once and “crash” but those words and a few others have all disappeared.

He can sign.  He signs “I want” by rubbing his thumb against his pointer finger.  He can sign “please” by rubbing his chest round and round.  He signs “drink” by pulling on his lips and ‘eat’ by circling his fist over his mouth, or is that the other way around?  He can make a sentence with them all, though sometimes it’s back to front or middle to front, etc.

He can use a speech device, which took years to get.  When asked specific questions, he can press the button for his answer.  Many of us wonder, if he just does this randomly or it’s what he really wants.

Speech Therapy was offered Pre-School, but the Ontario Government weren’t paying therapists enough and so we went through quite a few in a space of 3 years.  In got to the point of being ridiculous, I wrote the government and requested all families receive the funds owing, so we could hire our own.  That didn’t work out too well, as there weren’t many to hire independently back then.

In Grade School, we had two speech programs.  Troy didn’t qualify for either because he didn’t speak.  Say What?  Yes, you are reading that correctly and never did I receive an explanation.

I had been using picture symbols on my own and having some success with them; however his teacher and a Speech Therapist (who was trying to help) insisted we teach Troy PECS.  I attended a half day session with a specialist, along with his EAs, his teacher and a few others.  I diligently went through the arduous process of PECS.  I wasn’t having much success once again, but I stuck with it.  The end of the year IEP brought to my attention the school hadn’t bothered with the process.

Since Winnipeg, with the exception of one year we have had the same Speech Therapist.  I don’t like her.  The main problem is she doesn’t listen.  She just goes about her own agenda and against my wishes.  Stupid things, like insisting Troy must push a button on his communication device to say “next page”, yet Troy can physically change a page without asking to do that.  Seriously, what person in this world says ‘next page’ when they can do it themself.  Then there is the three times she wiped out the entire contents of his communication device.  She also likes to take credit for getting us the device, but she didn’t.  I did, but that is a different story.  Or Troy having to say “more” either via sign or the communication device, every time he wants a bite of food or a sip of a drink.  My other kids ask for more when what is infront of them is done, not each and every time they want a bite or drink.  I understand these Speech Therapists have a lot of demands on them, but I think common sense should be a mandatory requirement for the job.

So today, while watching Troy say “I want”, I began to fill in all the blanks.  Juice, food, outside, camp, change the channel, the dogs, sleep, change his diaper?  As usual, I have no idea what he really wants.

But I know what I want.  I want Troy to be able to communicate.

To tell me if someone hurts him, neglects him.  To tell me what was the most exciting thing about the camp he was at last week was (he ziplined…WOW).  Is he hungry?  When he hurts, where and how?  Why is he sad?  What happened at school?  What his friends did?  What sport he loves watching the most?

Yes, I have my own want.  I want……

Things That Make You Go Hmmmm, Once Again!

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Assuming you read my previous blog, you will understand why today’s press release from The United States Department of Justice is of such great interest to me. 

http://www.justice.gov/iso/opa/dag/speeches/2012/dag-speech-1207021.html

In summary, GlaxoSmithKline LLC (GSK) has agreed to plead guilty and to pay $3 billion to conclude its criminal and civil liability due to the company’s unlawful promotion of certain prescription drugs (Paxil, Wellbutrin and Avandia), its failure to report certain safety data, and its civil liability for alleged false price reporting practices.  This concludes the largest health care fraud settlement in U.S. history and the largest payment ever by a drug company.

As long as these stories continue, I will always be cautious of prescription medicine and vaccines.  Corporate greed has shown it’s ugly truths this past decade and we have all been hit by the agendas of their boards, CEOs and their minions.

There are two movies/videos I wish to watch in the near future because my curiosity is now peakingOne is 

and the other is

Jane Burgermeister – pandemic update 25 June 2012

Due to the latter, I recently searched our Health Canada website in depth, wanting to know who makes our vaccines and what specifically is in our vaccines.  I couldn’t find the information after days of searching for it.  I have written to them and I will happily provide the information when I receive it.  I will be curious as to how long the process takes.

Why does this matter to me?  I have no idea why Troy is disabled.  As stated previously, no doctor has provided me with how Troy became disabled nor have they told what his label is.  So therefore, will my other son’s children be like Troy, will my child’s children suffer, how many more children must suffer alongside their parents while we seek the truths, that’s why!

Things That Make You Go — Hmmmm?

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This here is a court document by two former virologists (the science dealing with the study of viruses and the diseases caused by them) of Merck (read their mission statement as I feel that is very important to note).

They are suing Merck, according to this document, based on the following:

1.  This case is about Merck’s efforts for more than a decade to defraud the United States through Merck’s ongoing scheme to sell the government a mumps vaccine that is mislabeled, misbranded. adulterated and falsely certified as having an efficacy rate that is significantly higher than it actually is.

2. Specifically, inan effort to maintain its exclusive license to sell the vaccine and its monopoly of the U.S. market for mumps vaccine, Merck has fraudulently represented and continues to falsely represent in its labeling and elsewhere that its mumps vaccine has an efficacy rate of 95 percent or higher.  This is the efficacy rate on which Merck’s original government  approval for the vaccine was based more than forty years ago.  In truth, Merck knows and has taken affirmative steps  to conceal – such as by using improper testing techniques, falsifying test data in a clinical trial, and violating multiple duties of government disclosure — that the efficacy rate of Merck’s mumps vaccine is, and has been since at least 1999. significantly lower than this 95 percent rate.

You can read the rest for yourself, but there are a few very important factors:  1) An Efficacy Rate is the capacity to produce an effect  2) Merck’s annual revenues exceed $20 billion a year 3) Merck provides vaccinations for 12 of the 17 diseases  that CDC (American governing agency) recommends a vaccination for 4) Millions of children have been provided this vaccine in the United States and throughout many other countries as part of the MMR.

So what exactly is it that makes me go hmmmmm?  Two virologists who previously worked for this company, have made a choice to go against a $20 billion a year company.  As long as situations like this keep coming to the forefront, I shall always be skeptical as to what we are injecting into our children during a vital time of their growth.

In the past several years, corporate greed has made me a cynic.  I don’t have the same passion, compassion, enthusiasm as I once did for companies.  Everyone is looking for efficiencies, productivity, and for the high-up individuals they have to make themselves look good.  Sometimes in order to look good, individuals need to do something bad ….. or at least that is what keeps coming out of these white-collar crimes.

So with neither an opinion here nor an opinion there because I do not know all the facts….I’ll sit and watch and read and go hmmmmm!

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