Go With Your Gut!

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When it comes to Autism, I don’t think there is any other syndrome/illness that comes with such polarizing points of view.

There are so many treatments available for individuals with autism, such as:  Applied Behavioural Analysis (ABA; Hyperbaric Oxygen Therapy; Chelatin Therapy; Pivotal Response Therapy; Floortime; SCERTS; SON-Rise; early intervention; intense intervention; animal-assisted therapy; prescription medication such as Risperidone; Dietary Supplements such as melonomine, probiotics, digestive enzymes, B6, Vitamin D; Chiropractic, Electroconvulsive therapy and the list goes on, to a new one originally supported by the AustimOne Conference called MMS (I will let you research it because it disgusts me).

One would think that with so many treatments and remedies there is no possible way the statistics could be growing in Autism or ASD.  For us in Canada, most of these are out-of-pocket expenses, though I would like to take a moment to the forefathers and mothers who stood against local, provincial, federal and the Supreme Courts to get ABA treatment on the map and give them a THANK YOU.  Troy was never and will never be given the chance of ABA.  I will never know if it would have helped or not.  There are many a parent now, who does NOT stop to think, how that treatment came to be and the children who suffered along the way and the parents that paid the price, not for their kid, but the generation after them.

In my cynical opinion, there are a lot of Snake Oil Salesman making a pretty penny off of Autism and the spectrum.  Whether it be legitimate doctors, government agencies, or enterprising individuals, a lot of money is being exchanged and it is my personal opinion most of it is misspent.  Here is a classic example:  The Centers for Disease Control and Prevention this past March provided us the following new data:  http://www.cdc.gov/Features/CountingAutism/ .  Well no s*** Sherlock, how much money did you just spend not helping our children to come out with new data that any parent of a disabled child or any friend/relative/co-worker/Autism industry individual did not know already.

We need help.  We are desperate.  In this article here, mothers of teens and adults with Autism experience chronic stress comparable to a soldier in combat.  The difference is a soldier in combat actually gets ‘leave’ at some point.  Depending on the amount of Respite you may be granted from a government agency, ‘leave’ is few and rare.   That is pretty scary to me because I know the constant pain in my right shoulder-blade is stress, my nagging cough due to smoking is due to stress, my enjoyment of wine is due to well, honestly that is due to me enjoying wine.  Not only are we raising children and adults with ASD, but we are attempting to raise families, keep jobs, remain married and/or find someone to love us and our child/children, be supporting members of communities, volunteers in the community and our children’s schools AND find ‘me’ time.

It’s a difficult path we walk, with very little support.  My opinion is to research your information, ask others via the internet how a treatment worked for their child, don’t jump to conclusions that it will cure your child, but at least help your child and last and most importantly would you do it to yourself.  Find a quiet place (I know, I hear ya sister those are a rare place to find), ask the question of what treatment you want for your child and then listen to your inner voice.

With all this talk GUT FLORA in our children, are you listening to yours?

From Bing Images

A Reason, A Season or A Lifetime

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Many years ago, I came across a small but profound article regarding why people came into our lives.  It was never memorized and I can’t say I ever ‘googled’ it until today, but I always remember the words had such an impact on me.  As people have come and gone in my life, including best friends, I tried to recall those words to ease the pain of their departure.

Several months ago, I wrote to you about some very special Respite Workers in our lives — Blessed by Angels — and sadly today, I have received word that one of them has passed away far too early in their lives.

Lorraine had graduated from University and was hired by Family Services to work with children with Special Needs.  Her first assignment was Troy at his daycare.  She began each workday morning working with Troy.  She helped him hand-over-hand, inclusion with the other children, exercising and helping the other employees with their first student with Special Needs.  Lorraine looked so young, but she had a smile that lit up a room and she was so caring to Troy.

If I recall correctly, she worked with Troy for two years and when I finally moved Troy on to Grade School, it was a sad time because Lorraine would no longer be a part of the routine.  She even went so far, as on her own dime, to dedicate some time to the kindergarten classroom teacher, to explain some of the things she and Troy had been working on.

Within the year, great news came to me.  I would get 90 minutes of Respite a week.  Immediately I knew I wanted to hire Lorraine, so I called her and she agreed.  I was so grateful for this 90 minutes, not for me but for Troy to be with his ‘expert’ again.  She would visit Troy in our home and she would bring along something to give to his older brother to play with.  It wasn’t long before she was more like Aunt Lorraine to my kids than Lorraine the Respite Worker.

My Respite hours grew a little over time and I always asked Lorraine if she would like them and she always agreed.  She had so much patience with Troy, something that I felt I never had enough of. 

Eventually one day, she informed me she was pregnant.  She knew she wouldn’t be continuing on after her baby was born.  She slowly explained to Todd that there was a baby growing inside her.  Todd scooted off on his happy way and 15 minutes later, came tearing down the stairs and stuck his finger into Lorraine’s stomach and said “you had sex with Greg”.  In that moment, Lorraine wanted the earth to open up and allow her to be swallowed within it.  Even to this day, I have no idea how Todd at age 8ish, had figured out how that worked exactly.  It is a moment of hysterical laughter in our lives and one we always shared when we saw each other.

A few Respite Workers came and went but none were working out.  Lorraine called me one day, just for an update and I explained where things were.  She returned to me immediately, sometimes bringing her baby boy, Patrick along with her.  I never minded.  As her son grew older, he would say ‘it wasn’t fair she got to play with Troy and he didn’t’. 

Lo and behold, time passed us by and she was pregnant again.  And once again, she informed me she could no longer work with us.  As the story unfolds, she once again returned to us after a brief stint away.

Throughout much of this, she saw an unhealthy environment, always keeping her professionalism and never interfering, until one day it was obvious it all was breaking apart in my home.  As things became more abusive and at times violent, I asked her to take the kids with her while I produced a letter to my then husband, saying I wished to be ‘legally separated’.  He went ballistic wondering where I had hidden his children.  I was so glad my children were ‘safe’, during that evening.

She kept my kids engaged, both of them, by taking them out to dinner with her family, going for walks along the Speed River in Guelph, feeding the ducks at Riverside Park, riding the train at Exhibition Park, taking Troy to Playsense or being there at home for me when I couldn’t be. 

When Troy’s eyesight was measured with some new fangled device and he received his new glasses, Lorraine was there to witness that Troy was ‘seeing’ for the first time.  Her, I and the entire staff of the Ophthalmologist Office, including some client’s broke down in tears.

When I finally left my husband, Lorraine came on moving day and helped Troy pack his favourite things in a little suitcase.  She took him away all day, so as not to absorb the emotion and when they returned to our new apartment, she had him unpack all his things.  He never blinked an eye in the change, and she was the first to comment within the week, how much happier Troy was.

When I had made the decision to move to Winnipeg, it broke my heart to have to leave Lorraine and another worker behind.  They had become family to us.  She was the Aunt my kids hadn’t really had (the other two lived far away).  I took Lorraine and Claudette out for dinner one evening and we shed numerous tears in our goodbyes.  They gave me an “Angel of Remembrance” and it sits right now beside my computer, where it has always sat.

When Troy would go back to visit his father for two weeks, his father would have Lorraine care for him while he was at work.  And last summer, I made a special visit to see her, just her and I, after learning how ill she had become with colon cancer.

Even to today, when they drive by our old apartment, Patrick or Emily say “That’s where Troy lived” or should I say “Twoy”.

Last night, I returned from Toronto, ON where I had a 4 day visit with my ailing father.  I had thought about making the trip to Guelph, but I owed it to my dad to spend the time with him.  Tonight, I opened up my Facebook to read we lost our lovely Lorraine at 7am to colon cancer.  She was surrounded by her family all weekend and during her passing this morning.

And so, was Lorraine in my life for a Reason, a Season or a Lifetime?

She was in my life for all three, for she was the kindest of spirits.  She gave me friendship, sistership, and strength in a time when I had no idea whether the next day was worth living.  She swore she would protect my children and go to court for me if necessary.  She will be so sadly missed.

She will live in the sparkle of Troy’s eyes, each and every time I look into them.

I miss you my friend and my love and thoughts go to your precious children, your loving husband and your family. 

(For my followers and visitors:  It appears right now my Mars is in retrograde with Venus, and my Venus is in retrograde with my Mercury and somehow Jupiter is popping up in there to basically cause chaos and transition in my life.  (Aha, I knew there had to be sense in all the sadness surrounding me at the moment).  For whatever reason, this is where I am suppose to be in this moment, so bear with me.)

And The Door Closes

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And out he has walked.

Printing resumes, collecting his personal items, eats the dinner he refused to eat with us, picks up the things packed at the doors and out he walks.

My little boy, my hopes, my dreams.  It’s so hard as a parent, not to place all your dreams on your normal child.  You suppress them deep inside you because you don’t want them to feel the pressure.  For them to be all they can be, because you know your child with disabilities cannot reach those achievements.

You navigate through self-help books, opinions, magazine articles, parenting workshops and lectures, wondering each step of the way if you have made the right decisions or the wrong ones or more importantly did you have time to fix the wrong ones.

And out the door he walks, but not before I could convey the most important message.

“I love you”, I say, as he one arm hugs me.  No words in return. 

Being a Mother

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I was told there was something wrong with Troy at his 6-month doctor’s visit.  The doctor measured his head, as they always do, for his head circumference and the result was in the bottom percentile.  It’s odd, how we see the doctor’s do their thing with our children and none of it really means anything, until the news “I need to make a recommendation to a pediatrician as I have concerns that Troy is not growing as he should be”.  That day changed the next 18 years of my life.

Troy has an older brother of 14 months less a day.  While my life begun to spin out of control with Case Workers, neuro-specialists, geneticists, blood tests, endless questions and pediatric specialists, I always ensured Todd felt special.  When individuals came to work with Troy, I always asked them to bring a ‘toy’ for Todd and to spend some time with him.  When we went to doctor’s appointments together, I made sure I brought something special for Todd to do, while we sat for endless amounts of hours.  Later on, we attended together a “Siblings of the Disabled” workshop.

When he was about 6, he came downstairs late one evening because he couldn’t sleep.  I was watching a show on ‘Chernobyl Children” and he wanted to know what was wrong with them.  I took that opportunity to explain to him his brother was not necessarily like all other children and he was learning things slower.  Up until then, Todd never questioned why Troy wasn’t walking or talking.  Todd put on puppet shows for Troy, would surround him with pillows to prop him up because Troy couldn’t sit, tease him with a toy caterpillar, and read him stories.  It was Todd who got Troy to move – Todd would run circles around him, widening the circle and eventually Troy began to bounce on his knees to get to Todd.  (Troy never crawled).  Todd would take Troy’s favourite stuffed Caterpillar and place it on the couch, teaching Troy to pull himself up so see it and then eventually, Todd placed it on the back of the couch, which resulted in Troy climbing on the couch.

It wasn’t the dream I had envisioned having two boys so close in age, but I watched the human spirit and the bonding between the two and a new dream was created.

During the first Survivor season in 2000, I began ‘date night’ with Todd.  Things weren’t healthy at home and I wanted him to have special time just for him.  We would go on a ‘donut shop’ date, spend an hour at a ‘collectible card’ store choosing just the right Pokeman card, bike ride, or just sit and watch Survivor together, mimicking Jeff Probst and laughing.

When I left their father, it was just the three of us.  When Troy had his first seizure, it was Todd who calmly yelled across the room to get the food out of his mouth.  When Troy threw up all over his bed and then slept in it, it was Todd who helped me get Troy clean and never once complained.  If Troy had an extremely messy bowel movement leaking out of diapers and pyjamas, it was Todd that was the extra set of hands needed.  And it was Todd who at the age of 16 1/2 who travelled via plane with his brother to Ontario to see their father.  He was an amazing older brother.  He was going to grow up and be a business owner and Troy would work for him, so he could keep him safe.  He even went so far, when he was about 7 to push a boy half way across a room and put him up against a wall.  “I told you to stop pushing my brother over, I told my mom you kept pushing my brother over, now you will stop pushing my brother over.”  Just what I had always taught him about bullying – Step 1 – tell the kid to stop.  If it happens again – Step 2 – tell an adult.  If it happens once again, you have a right to hit back.  He didn’t do it for himself, but he did it to protect his brother.

When Todd’s Grade 4 teacher told me he had ADD, I responded with “I didn’t realize a medical degree was a pre-requisite for teaching.  If you could kindly provide me a copy of it, I’ll happily take your advice.”  When he was punished at school for defending himself against 6 girls in Grade 5 who locked themselves and him in a classroom, I went to the principal and explained ‘sexism’ to her, as it was only Todd who was punished.  When he sat me down one day in Grade 6 and told me the reason why he was a bully at school because his daddy was one, I had a lightbulb moment and began to make plans to leave their father.

Todd hated school with a passion.  It was always about the friends and never about the academics; however, he was a natural at speaking french and he read well beyond his years.  With the exception of one major argument between us, any other disagreement was over school and homework.  That one major argument was also a turning point in my life – it, along with an event with Troy, caused me to focus on my family and quit my career.  When I look back on his beliefs about school, the writing was on the wall even then, and I knew that.

Whether it be teenage hormones, teenage angst, a step-father who could step into his shoes, or two older step-brothers who could help, at 16 things began to significantly change.  If he must, he would do something for his brother, but for the most part he ignored him.  He told me once, you know how hard it is when my friend’s laugh at some kid who acts weird.  I either laugh with them or stand out and be different.  He was embarrassed by his brother and would get angry if we showed up with Troy at something that was Todd-related.

Todd is now 19, reaching 20 in July.  The last 6 years have been really rough, with some good moments but mostly disappointing ones.  He wouldn’t have graduated highschool, had it not been for me being extremely involved.  Some joke, that it was me who received his Grade 12 diploma, and sadly there is a lot of truth in that.  I have watched him be fired from every job because when the going gets tough, he gives up and doesn’t have the courtesy of quitting.  I have watched him disappoint good, solid friends who have gone out on a limb for him.  When in good faith, I permitted him to purchase a car to get to his job, paid for by an inheritance, he never made it to the first loan payment before he had no work.  He had two accidents, one that almost wrote it off within several weeks of each other and it was his step-father who did primarly all the work necessary to get the vehicle fixed.  And no sooner has he got himself out of debt with me or his friends, no longer is a pay cheque coming in.

After 10 months from highschool graduation, I saw he was doing nothing with his life and he had destroyed his room from an alcohol/drug-induced state, I gave him three options 1) get a job and pay me rent 2) go to University 3) go visit your father and family in Southern Ontario and when you are ready to respect the family you have here and respect the home provided to you, you can come back.  He chose to go away and the pain of that decision was a knife through my heart.

After a couple of months he returned home late one night.  He stated he was drug-free and ready to move forward.  It didn’t happen right away, but we saw some better decisions.  I continued to assist him, by connecting him to people who could help him find work, lend him money until he had a pay cheque to pay me back and defend him when he slipped up.

This past Friday, anger-fueled, I packed his bags and they sit at the front door, awaiting his arrival.  I haven’t seen him for 5 days.  He broke up with his girlfriend of 10 months, it appears that there has been a downward spiral since.  He didn’t show up for work for 3 shifts.  This being after returning to a former place of employment on the recommendation of two of his friends.  He was even promoted because he got his act together and now one of those friends, has been transferred in as his restaurant Manager.  That friend is now hurt with disappointment, his own reputation on the line because of Todd’s actions.

While I sort through my emotions of the uncertainty of whether I have employment and at what moment do I lose my father to bone cancer, I have told my son he is no longer welcome here.  He was warned.  Not once, not twice, but more times than I have fingers.  It’s done, I am done.  Life is too precious and I have given all that I can to my oldest son.  I cannot continue to live with such disappointment and heartache, carefully choosing the right words to encourage him and provide him with self-esteem.  I don’t want to read books that state 1) too much environmental estrogens are lowering boy’s testosterone levels 2) too much video gaming has developed aggression and social inadequacies 3) lack of male role models.

Ten years ago, had you told me that I would have more problems with my ‘normal’ son that a teenaged ‘disabled’ son, I would never have believed you.  I know who Troy is always with, I know Troy doesn’t drink alcohol or do drugs, I know Troy is in his bed every night, Troy has no risk of STDs or getting a girl pregnant and I know that Troy loves his mommy.

I never wanted children because I honestly didn’t believe I could be a good mother.  My ex-husband did, he knew he would be a great father.  I have navigated motherhood, most of it with no mentor and limited knowledge due to having a disabled child in the early 90s (internet and self-help books weren’t around much back then).  A lot of the parenting I had to do I did on on my own.

My first dream for my youngest shattered at that doctor’s appointment when Troy was 6 months old, my dream for my second child shattered this weekend (well probably long before now).

Yes a heart can be broken. It can shatter itself into tiny fragments, while your chest feels bound, a lump sits in your throat and my face has gone numb from fake smiles.

I hear my wonderful spouse say “This is not about you and only about the choices he is making”.  But those are just words and they do not soften the blow to my heart.

Procrastination

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There are times when I blame the life I live in for not getting things done. 

IEPs, camp forms, medical forms for each camp form, school forms, school memos, school letters, medical forms, bank forms, report cards, blah blah blah.  Many of you understand, in our paperless society, that we drown in paper due to our child having a disability.  I have really tired of completing these long, drawn out stories I write each year, especially the ones I have written over and over again for the past several years that must accompany most forms.

have concluded PROCRASTINATION leads to STRESS.

Now not only do I have all the same issues to deal with, but I also need to contact the Commissioner of the Vulnerable Person’s Office to find out why they can’t seem to spell my son’s name correctly after advising them 3 times or is it too late to get my son booked into camps for the summer or why hasn’t our Medical Insurance paid over $500.00 in claims for the past several months, BUT now I am dealing with two new issues.

The big one is my father.  After 10 years of dealing with prostate cancer, it has now spread to his bones.  He has chosen, after an incredible 82 years of an amazing life to not seek treatment.  I completely and totally respect that choice.  The problem is I live 1,500 kms away from him and the pain inside me is immense at times.

In an eye-opening moment Monday night, while laying in my bed in the fetal position, I realized I am procrastinating seeing him.  I don’t want to go say goodbye.  My own husband lost his dad in a blink of eye.  One minute I was eating a donut and having a coffee with George, and that night, George passed away.  Now I have an opportunity to go say my goodbyes and I don’t want to because they will be exactly that, ‘goodbyes’.

Also last year I choose to take a new direction with my job.  I decided to return to full-time work and take some steps into the Estate and Trust business with the bank I work for.  It’s been a huge learning curve for me, but I sincerely have enjoyed most of my moments there.  Unfortunately, it was a contract position and after being renewed several times, that kind of, sort of, maybe, possibly is coming to an end.  Which makes planning really difficult.  Planning to see my dad, planning for Respite and Camps for the summer.  Just plain old planning.  And then of course, there is the OMG I don’t have a job thought that keeps popping into my head, followed by “WT frick were you thinking” thoughts.

Throughout this, I am studying for a major exam.  One that I should have written probably a year ago, but I procrastinated because life is too busy.  So finally I booked the exam date for the end of April, not realizing this was all going to happen.  I realize all these months I have been ‘reading’ the course material, I should have been studying it.  See what happens when you don’t take an educational course in 10 years?

So during the past two weeks, I have had a couple of meltdowns. The most recent being Monday evening, to which I granted myself 7 minutes from beginning to end.  Why you ask?  Because 1) everyone was laughing in the kitchen doing the Easter dishes and having a good time 2) I have a ton of paperwork piled up on my desk at home that I am not getting through 3) I have about 40 emails to return, to which I haven’t started 4) a list of phone calls I have to make or haven’t returned 5) a good friend I haven’t even called in weeks, actually make that months 6) a bouquet of fruit to order and deliver to a teacher that exemplifies spirit at my son’s highschool 7) minutes from the last Parent Association meeting and well you are getting the picture.

I know better than to procrastinate in my world, but yet I let it happen and now I am paying the price.

Bear with me dear followers, as I maneuver myself through this maze of emotions.  For the next several weeks, the posts may be short and sweet and I do promise to bring Part 3 of the Educational System.

Be Enlightened in a Blue Way!

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On Monday, April 2nd, all around the world, iconic landmarks will be lit up with the colour blue to mark Autism Awareness Day.  Cairo, Mexico City, St. Louis Missouri, Aspen Mountain, Saudi Arabia, Christ the Redeemer in Brazil and the list goes on.  View the spectacular images here:  LIGHT IT UP BLUE

Pervasive developmental disorders – PDD encompasses a group of five disorders characterized by delays in the development of basic functions including communication and socialization.  Those are Autism, Asperger Syndrome, Rett Syndrome, Childhood Disintegrative Disorder, along with Persuasive Development Disorder – Not Otherwise Specified (PDD-NOS).

There is specific criteria that MUST be met in order to be diagnosed with one of the above, unless of course it’s the last one.  In my opinion PDD-NOS is the catch-all for ‘we haven’t a clue, but it sure looks enough like one of the others, but not quite, so we will dump you in here”.

In Canada alone, 1 in ever 110 children born will be diagnosed on the spectrum.  With 350,000 children being born each year in this country, that means 3,181 kids will be diagnosed this year.

That is the entire population of Headingly, Manitoba; Fairview, Alberta; Harbour Grace, Newfoundland; Marathon, Ontario; Wheatley Hill, England; Parker, Arizona or Duncan, South Carolina.

Boys are four (4) times likely to be diagnosed on the ASD than girls, which is 1 in 70.

Statistically pediatric cancer, AIDS, and diabetes do not even equal those numbers in diagnoses – COMBINED.  The statistics are much higher in the United States (1 in 88 announced this week on 2000 statistics and 2008 data).

We know medically that ASD includes social, communication and behavioural issues.  As parents, we know that ASD can also include: Gastronomical Intestinal problems, sensory dysfunctions, sleep disorders, self-abusive behaviour issues, stereotypy (repetitive movement and/or stimming), compulsive behaviour, ritualistic behaviour, superior skills in perception and attention, toe-walking, autistic savants and the list goes on, and on and on.

Confused yet?

We are! And who are we?  Parents, siblings, grandparents, teachers and caregivers of these children.

I am not confident Troy is on the Autism Spectrum Disorder.  I know that Troy has a mental disability that has led to physical disabilities and that he has underlying issues, such as GI problems.  I am confident in knowing that no doctor we have ever met, truly cares about why or how Troy became this way nor provided any assistance on how we can improve his quality of life.

I know who does care:   Thinking Mom’s (And One Dad) Revolution

These are their children, this is my child, this may be your child, your grandchild, your godchild, your niece/nephew, your best friend’s child:

An epidemic is defined as “occurring suddenly in numbers clearly in excess of normal expectancy”.  If this is not an epidemic in our children, it’s a definite concern for the future generations of our countries.

SPEAK OUT ON BEHALF OF THOSE YOU KNOW.     WE NEED YOU & THE FUTURE GENERATIONS OF OUR COUNTRIES ARE BEGGING YOU TO SPEAK ON THEIR BEHALF LIGHT IT UP BLUE

The Educational System (Part 2)

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So it’s the first week of September for Troy’s new school.  Unfortunately, we were guaranteed their new room would be ready, but it wasn’t.  It shouldn’t really be a surprise because these things never actually happen on time.  It was disturbing to me because as we know our kids like routine and since they were moving schools to begin with (as a reminder, the complete opposite direction of my other son’s school), it would have been nice had we considered the children in the process and have it ready in time.

The good news is they did an outstanding job on the room.  It was spacious and divided into separate work stations and they had transferred some of the EAs to that program from the previous school, so there would at least be familiarity.

What a difference a school and it’s administration makes.  Immediately, this principal cared and Mrs. Coleman, the teacher, wanted to excel with these students.  She was open to ideas and suggestions.  Three things stick out, she enrolled the children in a Special Needs Horse Program, she set up swimming lessons and she enrolled them in Special Olympics.  The teacher of this program ensured I was included at any meeting, was permitted to show up unannounced and included me in every step of the process.  I felt I was being heard for the first time and recognized that I knew Troy better than anyone did.  This was the beginning of a collaborative team for Troy.  I still had hurdles with Speech, but I always have.

Troy actually had friends in this classroom.  I mean real friends who liked Troy for Troy and considered him their friend.  The teacher also brought in a ‘peer program’.  Regular kids who became reading buddies and as well Special Olympic mentors for them.  One young woman became Troy’s buddy and she put her heart into everything she did with Troy.  I was fortunate to meet her parents before we left Guelph and I thanked them for bringing up such a fine daughter who had compassion.

 

This was a time when I saw Troy at his happiest.  We were just him, his brother and I, so life was new that way and the negativity was left mostly behind.  A new school with lots of windows and true inclusion, even though he was in a special needs class.  And friends.  Troy started to grow and achieve goals that were set out for him.  He was happy and we all know when our children our happy, it takes a huge amount of stress off of our lives.

The first year of June Avenue Public School, there was a concert in June.  I was invited and had no idea why.  There was a photographic presentation of the Special Needs kids attending ‘horse camp”.  When it finished, the entire student body cheered, hooted and hollered for my son and his classmates.  I broke down crying.  Troy was a part of them, all of them and they were just as proud of him on his horse Story, as I was.  He was now in a safe and happy environment, both at home and at school.  We met a milestone together.

One very significant event happened at that school.  One of the EAs that had transferred from Troy’s first school to his new school, died suddenly one evening.  She was quite young.  I took Troy and his brother to the ‘viewing’ and there was an extremely long line of people wishing to pay their respects that extended well outside the building.  Someone who was farther up the line, came outside and saw us and told us to follow them.  We were bumped up by about 75 people and I was very grateful.  Troy, the person we would all love to be, decided after 30 minutes of standing, would just sit on the floor.  It was at that moment, I overheard someone behind me comment on how shameful it was to bring someone so young to such a sad event. 

I could feel the rock in my throat and began questioning myself, thinking I had made a poor decision, bringing both my boys to the ‘viewing’.  I was agitated and upset and of course, Troy began to feed off this emotion.  We continued to patiently wait our turn, and as we entered into the actual room, the teacher of his former class and school came running towards us.  She swooped us away from the line and brought Troy up to meet the EAs parents.  She told them this was the side of life they never saw of their daughter.  This is what she lived and breathed for every day as an EA.  I honestly do not remember the rest of her words, but I took the hand of both her mother and father and I thanked them for the gift of their daughter.  For being the person she was, she had extended herself to our children and if it wasn’t for individuals like her, a mother like me could never rest peacefully.  Both her mother and father embraced me, as we shed tears in silence. 

It was due to that moment, I always extend myself to those that care for people like Troy.  If it wasn’t for them choosing the profession they do, my son’s life wouldn’t be as full or as happyas it is.  (I extend this to Respite Workers I see in my every day functions, not just Troy’s).

It was also due to this event, that I instilled something for the future.  I insist upon Troy having two EAs.  One for the morning and one for the afternoon.  There are several reasons, which I will explain in Part 3.

I have to say that June Avenue Public School and Mrs. Coleman, the teacher at that time, did a brilliant job with starting up a new program and with little direction ran with it to make the program a success.

The Educational System (Part 1)……

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it can definitely make or break, the progress of your child.

THE UGLY.  Where we lived was ideal for schooling, as our neighbourhood school was French Immersion, English and Special Needs. Troy’s brother is 14 months older and seemed very quick to learn, so we decided to enroll him in French Immersion, even though neither myself or his dad speak French.  Regarding Troy, we kept him back an additional year, as he is born in late September.  As I worked full-time and spent a great deal of time on the road, I would have to find before and after school care.  It was also too far a walking distance and across a major intersection; however, both boys would be in the same school.

It became clear by Troy’s third year, the school did not really believe in inclusiveness. You could see in the playground, all three groups segregated and very little interaction between the three.

I found the teacher of the Special Needs classroom very focused on herself and her own Special Needs children, which tended to be much of her conversations.  I also found she spent more time dealing with issues outside her classroom than inside. Though friendly enough, I couldn’t quite figure out what actually happened in the classroom.  I did my best to keep involved with the boys’ classes and I entrusted in the professionals and attempted not to intervene.

A few things I caught onto rather quickly were the specialists (PT, OT and Speech) seemed to attend to Troy right before an I.E.P. meeting or meeting. This annoyed me, and though I recognized their work-load was heavy, I found assessing Troy right before a meeting was wrong.  (The very last meeting at this school, I told the Speech Therapist not to show up, since she hadn’t participated in Troy’s program all year. Apparently, the two speech programs that are in that school system, Troy didn’t qualify for because he doesn’t speak. Yes, you did read that correctly.) Also, Troy was never invited to an I.E.P. meeting. Educational Assistants were also not invited.  By the third one, I would bring an 8 1/2″ x 11″ framed photograph of Troy to each meeting and as each  individual spoke about him, I would turn it towards the person speaking. I wanted them to realize they were speaking of a human being. I also noted that everyone else got to speak and my job was just to listen.  It didn’t take long for the school system to understand, though I may have to abide by their rules, there were things I could do to infuse a way that suited our situation better.  (One of my many sayings is: Rules can be bent, Policy can be changed.)

Then a series of events happened and I entered into “Mommy Warrior” mode.

1) I received a message in Troy’s diary that Troy had fallen out of his stroller. I contacted the school the next day and asked where this happened. Apparently,  it happened in the classroom and Troy had reached over to touch one of the wheels and caused the whole thing to tip over. This was a heavy-duty stroller  with 6 wheels.

The stroller had been brought to the school for two reasons a) for the baby-sitter to bring him easily back and forth to the school b) to be utilized when they went for walks. Troy had just learned to walk at 6, so he wasn’t very steady on his feet and could not walk for long periods of time.

I asked why Troy was in the stroller and the response was they were concerned about the chairs in the school and felt it was safer he be seat-belted in.  Visions of my son in a stroller throughout the school day gathered through my head and I went rangy, to say the least. Had this happened to his older brother, he could have at least told me. NO ONE told me anything, unless I asked. The next day, I took a day off work and picked up the stroller. I informed them, that they need to locate a chair that would not tip, if they were concerned about his safety and to NEVER, EVER strap Troy into anything EVER again. Troy had no behavioural problems and what they did was illegal. To be honest, I had no idea if it was or wasn’t, but in my red-headed heated moment, I couldn’t have cared less, because my next reaction would have been illegal.

2) For the first couple of years, Troy was integrated into a regular classroom for parts of his day. When entering the school one day, I found Troy’s EA outside the regular classroom, sitting with a student at a desk. I knew this student as he lived down the street from me. This was a boy who had behavioural problems, but not Special Needs. I asked the EA what was going on, and she mistakenly answered. The teacher and principal felt that since Troy was so easy-going that a better use of her time, would be spent on the child who was having difficulties. UHMMMM, say what!. Troy didn’t speak and this was Grade 2. Troy didn’t print, didn’t do math, didn’t colour, didn’t sort blocks. NADA, nothing. I called a meeting with the Special Needs teacher and the principal and reminded them, they had forced me into getting a Psychological  Report in order for THEM to get funding from the Province to meet Troy’s needs, no one else’s. They had advised me, this was their legal document, to ensure Troy got the best of the education system and that in order to provide the best for Troy, I HAD to succumb to this. I had been very opposed to this, but realized it was the only way Troy could be provided the support he truly needed.  Needless to say, once again, once I figured out what was going on, I put an end to it.

3) Troy’s agenda was not being updated on a regular basis for about 2 weeks. I had also noticed a change in Troy’s behaviour. Please remember, Troy is not known to have any behavioural issues and is calm and loves people.

I attended the school to pick Troy up one day and asked the teacher if she had noticed anything different about Troy. She had said ‘no’. So I asked why the agenda wasn’t being updated and if anything was different in his class. Her response was “Well since you are asking me the question, I am permitted to answer”. Apparently, a medical fragile child had arrived in the class and no funding was provided for that child. So therefore, under the direction of the principal, the school had pulled EAs to assist with that child.  They were also advised not to tell the parents, unless we asked.  EXCUSE ME! “What right do you have to do that?”, I asked.  The response was we had to do this as she requires a lot of medical attention. I was as livid as I have ever been. I immediately went home, wrote a letter to the school board and hand-delivered it before the close of their day. The last line stated “Any future communication regarding Troy, will come on my lawyer’s letter-head”.

The following morning, the principal was waiting at the front doors for me. As she called my name, I told her ‘too little, too late’ and I am not interested in talking with her. Eventually through Board conversations, I had to meet with the Principal.  There had been times previously I had tried to be co-operative with her regarding my other son, but this was the last straw. I knew this wasn’t the environment for Troy.

There was many other situations, like finding Troy unattended in the library with no EA or teacher in visual vicinity or the time the school insisted Troy be taught PECS in order to communicate. I had training and they had training and we would all work collectively during the year. End result – they never bothered to do any of it and I found out in June, a full school year after we started.

This school only went to Grade 6 and when Troy’s older brother was in Grade 5, a decision was made to close the school. That decision was altered to keeping the French Immersion part and the English kids would move on to another school instead. Oh wait! That announcement was made on public record and in the media  with no mention of the Special Needs Program.  Though never admitted, they had been completely forgotten about.   It wasn’t until the second last week of school, we received a letter  informing  us, our kids were going to move to a completely different school in the opposite direction of the English school.

To Be Continued…………..The Good

You are so lucky!

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Every once in a while, someone decides to remind me how lucky I am to have such an amazing man in my life.

When I hear it, I cringe.  Sad to say, but it’s true.  How come they aren’t lucky that I am in their life?  I rarely, if ever hear that and I get icky inside and then I feel guilt.  Don’t you just love how guilt can take over your life in a blink of an eye?

Let’s backtrack a bit.  When previously married, I would hear far too often how lucky I am to have that man in my life.  He took time off to be with Troy’s older brother, when I was called back to work early.  I was lucky to have a man who loved to cook.  Lucky, he would change diapers.  Lucky that he would stay home at night while I went to Bingo (hangs her head in shame).  Lucky to have someone who read to the boys.  Lucky, lucky, lucky.  Yup I was lucky to have found such a wonderful man.

But you see, though he really did do all those things, it all came with a price.  Partly, it was showmanship, partly because I saw a lazy sod on the couch watching 24/7 golf.  I mean outside of watching tennis on t.v., nothing is more boring that watching golf on t.v. ( maybe bowling is up there).  Partly because every time we went somewhere as a family, he referred to it as a ‘dog and pony show’ and partly because he rarely did anything with his boys.  Outside of that, there were some pretty serious issues as well.  But, I was lucky according to him and well his mother, I guess.

One day I woke up.  I mean really woke up and realized if I am so lucky, why am I not feeling that way.  And so I began a new journey in life and that was to become a single mom.

Yet, life once again took me in another direction.  Stubborn as I was to never be involved with another man, lo and behold a Knight in Shining Armour appeared.  Well, he was actually a Theurgist in an online multi-media game, called Dark Age of Camelot, but he was on a horse.  (That’s him on the right and me on the left).  A friendship began, then a meeting, and then a new path that brought me to Winnipeg.

He is charming and witty (though I try often to remind him he is not funny).  He is handsome, with stunning blue eyes and long, lean legs.  He is a romantic and a care giver.  He has a passion for photography, movies, books, and s*x (my dad maybe reading this).  He is the father of his own two boys and stepped up to be a father to my oldest son and of course, he chose to parent Troy.  He puts up with me, a red-head, who equates her life to the best damn roller-coaster ride ever ridden.  He is my strength, my foundation, and my will, when I need it most.  He has given me laughter and friendship. Most of all he has given me the ability to trust again.  He is my life mate.

So yes world, I am lucky!  For I truly have been given The Greatest Love of All!  The love that is spoken of in fairy tales and Tom Hanks/Meg Ryan movies.  In the songs from Baby, I Love You (Andy Kim) to Sweet Child O’Mine (Guns N Roses).

Happy Valentine’s Day Mr. McKay.

Love Mrs. Thatcher <moah>