Friday, 29 April 2011

Common Sense So Rare It's A Super Power

Before Dayton's diagnosis of PDD-NOS (a very, very high functioning form of autism), with no IEP (Individual Education Plan) in place, Dayton was failing kindergarten of all grades.  When I asked the school to hold him back and that I believed Dayton should repeat kindergarten as he started it late (in November, due to daycare issues), I was informed that the school division did not believe in failing students, and no, as a parent, I did not have the right to hold my child back a year.  While agreeing with me that Dayton did not meet the educational expectations for the school year, and that he would most likely not be school ready for grade one, the division's policy is not to fail him.  Would Dayton have even understood that he had failed kindergarten unless the teacher pointed this out to him?  Most likely not.  Failing kindergarten made perfect sense to me.  Especially since life got in the way.  My intent was to hold him back till the following year to enroll him in Kindergarten...

My little man didn't meet the educational expectations for grade one either.  Although this year, he did have an IEP in place.  "Can we please hold him back and have him repeat grade one?"  "No, we don't believe in failing students...  Even living in a different school division didn't help solve Dayton's educational needs.  The rules are the rules...  What about education?!  I gave up discussing keeping Dayton back in grade two.  He is now in grade three, and has not mastered the basics of reading, writing and mathematics.  He is coming home very frustrated, telling me his brain hurts.  The teacher does not believe in sending homework home for her students, so I do my best to try making some homework for him.  I purchased a grade one curriculum book from Scholar's choice (Dayton's cognitive skills are of a child half way through grade one), and he looks at me and says "What's the point momma, I'm stupid."  Yes...  social promotion (continually passing him from one grade to the next, whether or not he's met the educational expectations) is definitely helping his self esteem, isn't it?!  It seems to me that Dayton's low self esteem stems from not mastering the basics as the rest of his class has.  Furthermore, perhaps failing a grade would motivate him to work in the classroom setting...  Dayton struggles to do this not only because of his diagnoses of PDD-NOS, ADHD, and global delays, but because his full time aid is not trained to guide him to do his work.  The aid is not in charge of my child, Dayton is in charge of him as well as the class.  The school corrects his behavior by suspending him...  Let's get serious for a moment, shall we?  Suspending a child at 7, 8 and 9 years old is not a consequence to the child.  It is a punishment for the parent.  And yes, Dayton has been suspended since he was 7 years old.  His view of suspension is not "oops, I really messed up, I need to get my act together."  His view is more like "thank God I'm out of here!!!"  Sometimes children need CONSEQUENCES in order to be motivated.  If it is truly embarrassing and a blow to a child's self esteem to fail a grade, then perhaps facing the consequence of failing will motivate children to work.  Worked for me as a kid.  Makes sense to me!

I had a candid discussion with Dayton's principal last Thursday, discussing keeping Dayton back a year and having him repeat grade three next year.  I tried explaining to her that Dayton is fully aware that the rest of the class is far more advanced than Dayton, that it's no wonder that Dayton doesn't want to work in the classroom.  He's totally fine sitting on his own and listening to his teacher talk to the class, but once he's put into a "group discussion" with the other kids, he hides under his desk or misbehaves so he doesn't have to show his "group" that he doesn't understand what he should be doing...  Dayton's behavior is becoming out of control, and then I get the phone call to come pick him up early from school...  Every grade continues on the basics learned from the previous grade, and Dayton has missed so much!  And all this with a "full time aid at his side."  I stated my fears on what will happen when Dayton is older, expected to open a text book to learn about Science or English and expected to produce a report, when he can't read or write. 

The principal told me not to worry, as teachers no longer taught "curriculum" and taught each individual student by their learning capacity and that teaching from a text book is a thing of the past.  No one learns from text books anymore...  ARE YOU SERIOUS?!  Furthermore, the principal insist on passing Dayton to grade four next year, as it is more harmful to his self esteem if he has to repeat a grade than it is not meeting the educational expectations.  My son's self esteem has crashed to zero by knowing he is far behind his peers, and she sees him repeating grade three as being offensive to his self esteem?  What about his education?!  I need him to be able to read a job application and fill it out when he's eighteen...  I know I'm worrying way too much and thinking way too far ahead in the future, but my goodness...  Why is the school system not as concerned as I am about Dayton's progress?  While I realize that his autism provides him with an IEP because of his learning disability, it doesn't mean he shouldn't be taught!

Every school division in Winnipeg has adopted this policy!!!  Words can not describe how insane I think this policy is.  My child needs an education!  Every child out there needs an education!  What about our children's future?  Again, I'm not talking only about children with special needs, I'm talking about our future LITERALLY.  We seem to be a generation away from barbarism.  "Oh, you can't read?  No worries kid, you're gonna pass anyway...  You can't do basic math?  Don't worry about it mom and dad, we won't fail him."  So these kids are going to pass their current grade, but what about the following year where they continue where they've left off in reading and math, building on what they were supposed to have learned the year before?  How do you expect these kids to build on what they haven't mastered?! 

I am not concerned only about my son.  I am also concerned with children who are deemed "normal."  Ugh!  I hate that word:  "normal."  We view schools as the place for children to gain knowledge, skills and values to live their lives effectively as workers and citizens.  While I agree that this is also the parents role in their child's education, the school is ultimately responsible for their education, otherwise, why would we send our kids to school?  Our children, our future, are graduating high school and at least half of them are graduating without meeting the educational expectations!!!  Did you not see them last week at the annual 4/20 marijuana protest rally in front of the legislation building?  My neighbor's daughter was telling me that half of her high school population was there!

My friend's son who is 6 years old and in grade one has no disability label.  Early in the year, at the end of September, my friend was approached by her son's teacher and told her that her little guy needs a "reading recovery program" because he was not reading as well as the rest of the class.  It is now April, and the little guy is STILL ON A WAITING LIST.  Will the school fail him?  Absolutely not.  Whether or not he learns to read is not as important as his "social promotion."  The little guy will be going to grade two next September, whether or not he is able to read, putting him farther and farther behind the rest of his peers, because they don't want to hurt his "self esteem."  Can they honestly not see that his inability to read is hurting his self esteem more?  Can they not see that being able to master the basics of reading will give him the self esteem they are trying to give him in the first place?  No, no...  sending him home with the same book at minimum of twice a week titled "Buttons Buttons" will help his self esteem.  The poor kid has the book memorized, and is not even looking at the pages or the words on the page.  Does this sound like true learning?  No to this little boy's parent it doesn't, and it doesn't to me either.  Even though my friend wrote a note to her son's teacher, asking not to send this book home with him again, they disregarded her note and sent "Buttons Buttons" back home with the little guy the very next day!!!  In what moment of insanity did someone decide that this is acceptable?  Can they not find a book on zippers or something?!  Anything?!  If that's all they have to read, I think we're in some serious trouble...  It just doesn't make sense!

I do have one thing to be grateful for...  My step daughter Charlie-Anne...  she is every teacher's dream student.  She's smart, she's funny, and she CARES about her education.  She is on the honor roll and is not easily distracted by her peers.  She knows her education is important.  Thank God her mother raised her so well! 

Every single school division has different funding for their students.  Even if I move to school division one, my son can not attend their Autism Programs because they are full?!   Marlene Gregory of the Manitoba Education "student services," suggested that I fill out a "school of choice application form" and have it submitted by May 15th, giving me false hope for my son's future education.  More on this topic with my next post titled "Choosing The Right School Division For Your Child With Autism."  I'm hoping to get this post done for you for Monday.  It will explain all six school divisions along with the wild goose chase Marlene Gregory sent me out on.  I'm not a happy girl.

It seems that Winnipeg schools are not the only ones lacking common sense.  All of North America has adopted this same type of educational standards, believing in social promotion verses education.  Numerous books have been published on the subject, and it seems that our generation of educators have not only lost all common sense but completely lost their minds.  While there are teachers that do not agree with passing students who obviously have not met the educational standards, the principals are forced by their school divisions to continue passing students, whether or not they are able to read, write, or master the basics of mathematics.  As a parent, I have a major problem with this.  I rely on the school to teach my child how to read and write, and yet, my son can't do either.  It appears I may have to take Dayton to a Sylvan Learning or a Kumon Learning Centre in order to have Dayton learn how to read and write and learn math.  Where the heck is the common sense in this?  I'd like my tax money back, because this is NOT WORKING FOR ME!!!  And because it's not working, I need my tax money back to be able to enroll Dayton into one of these learning centres, as they're not cheap, and I don't think I should have to pay for the programs since I'm already paying for Dayton to go to school and learn these basics!  It just doesn't make sense to have to pay twice for his education.

There are some good teachers out there, who wish their hands were not tied behind their back.  They too have a problem with passing students for the sake of social promotion.  In saying this, I don't think that a special needs student should necessarily fail every year.  We need to draw the line somewhere.  Let's face it, some on the Autism Spectrum are not going to graduate with a regular grade 12 diploma, but for those that are able, they should be expected to.  You may or may not agree with me, and that's OK.  But being a year behind your peers is not the end of the world.  Some parents with children on the spectrum have held their children back a year before placing them in Kindergarten, which is what my original plan was with Dayton.  But then life happened...  another story for another day.  My point is that parents know their children best, and since the child in question is our flesh and blood, the air we breath, as parents, we have the best intentions for our child and should have a CHOICE in how our child's education continues.  Makes sense to me.  WE SHOULD HAVE A CHOICE!!!  Should we as parents not be able to have the choice of failing our child?!  Does it not make sense to have us involved in our child's education?!

For those thinking I'm on crack for the above opinions, you may want to stop reading this post right now.  It's not going to get much better for you, and I don't really like hate mail...   and as you can see, I'm pretty angry, and just might respond to them...  Not good for any of us.

For those of you that are in agreement with my opinion, I encourage you to check out this book:

As I've mentioned in a previous post, I'm using my medical leave to read, read, and read anything to do with education and autism.  Reading this book, I thought maybe Michael Zwaagstra followed me for the last five years and wrote a book about my fight for Dayton's education.  I have posted a few newspaper articles on Michael Zwaagstra on my facebook page and the Autism Winnipeg facebook page.  Having an exceptionally bad day, I looked the man up, found his phone number and called his home in tears.  His poor wife had to calm me down enough to understand what I was saying in between sobs.  She gave me her husband's email address and assured me that while Mr. Zwaagstra was a busy man, he would return my call as soon as he could.  And he did.  He called me that same night.

We talked for over an hour on the phone.  He patiently listened to Dayton's story of discrimination in the school system, and tried his best to comfort me.  He offered to send me two chapters of the above mentioned book.  I read them.  I bought the book and downloaded it on my ever faithful Kindle.

When I read chapter 3, I needed clarification...  Here's my email to Mr. Zwaagstra:
Hi Michael,

I've just literally finished reading chapter 3 of your book, and need some clarification.  While I understand that children with intent to disrupt the class or show lack of respect to the staff of the school need to be punished, what is your take on children with a neurological  difference?  For example, Dayton's auto pilot word these days is "no."  He could have a huge grin on his face and be laughing, yet when I ask him if he's having fun, he will say "no."  In the school setting, when asked to do work, Dayton says no.  Without asking questions such as "what, where, when, who and how" and remembering not to ask "why," Dayton is not able to articulate "why" he's saying no.  Sometimes I also have to draw pictures for him. 
A clear example of Dayton's misunderstanding was when I got a note from the principal saying that Dayton didn't like this little girl playing with a boy, so he hit her in the head and dragged the boy away from her.  In Dayton's view, the little girl was attacking the little boy and he was trying to help him by dragging him away from her.  He does not remember hitting her and swears if he did, it was by accident.  Naturally, the school staff wasn't able to get a clear picture from Dayton, leaving that work to me, in the mean time the damage was done.  What sort of discipline or action would you recommend in this case?

Mr. Zwaagstra's email response to me:
Hi Lou,

As you noted in your email, chapter 3 is intended primarily at situations where students purposefully break the rules. It is important for rules to be stated clearly ahead of time and consistently enforced as this makes it possible to have an orderly learning environment. It also benefits special needs students for whom order and structure in the school is particularly important.

It's difficult for me to suggest a specific course of action in Dayton's case since I have not met him and did not witness the scene. The first question that comes up for me is where was his EA during this process? This is the type of incident that regular adult supervision is supposed to prevent from happening in the first place.

In this particular case, Dayton would need to be removed from the playground for the rest of this recess since the other boy and girl need to be protected. The supervising teacher and/or principal should speak with Dayton about his behaviour and explain to him that hitting is not acceptable and that even if he thought the boy was attacking the girl, he can best help her by telling a teacher right away.

Again, not having met Dayton personally or witnessed the situation myself, that's about as specific as I can get. The point of chapter 3 is to set out general principles of discipline that apply to intentional acts of disobedience rather than provide a detailed set of guidelines for unique situations.

Hope this helps.


Yeah it helps!  I have a direct link to the author to explain what I don't understand!  Thank you Mr. Zwaagstra!!!  And you know what?  He never got defensive with me on any of his "opinions."  He patiently, and I mean patiently explained his points and views.  What I would give to have him teach my son!!!

Mr. Zwaagsta is not just an author.  He is a high school teacher, right here in Manitoba.  He educates children with special needs and the typical kids.  His view is very much the same as mine...  There's a problem with today's education system and we need to fix it.  In his book, he talks about school of choice, the Edmonton model which I would give my right arm to have implemented in Manitoba.  This would not only benefit children on the Autism Spectrum, but typical children as well.  Our special needs kids would not be herded into a building as a dumping ground for the inept and hopeless...  They would have educated staff to help them cope with their autism, as each school would "specialize" in something.  One school division, one Super Intendant, and NO DIVISION LINES.  I could put Dayton in school division one, which has autism programs!  Wouldn't that be heaven?!   Maybe we could make Mr. Zwaagstra our Super Intendant!!!  

The first time I called Mr. Zwaagstra, I begged for help.  The man gave me help.  He not only responded to every single email and phone call I made to him, he contacted everyone  he knew who had an understanding of autism to help me.  He forwarded all of their emails to me.  Every single one.  Every contact believed my son could be fully integrated in the public school system with supports in place.  Not one of them suggested Dayton be segregated into a dumping ground for the hopeless..  

Thank you Michael Zwaagstra.  Thank you for your kindness, your concern and your passion for education.  I wish more people took education as seriously as you do.  Your students are truly blessed to have you be an influence in their lives.

Consider yourselves hugged, and thank you for taking the time to read this long winded post.  


Thursday, 28 April 2011

What The Hell is This Teacher's Problem?! I'm No Mother Teresa, But What The Hell?!

It's one of those days that you want to make a tinfoil Viking helm, stand in the corner with a broken broomstick and threaten everyone in a bad German accent!!!  

All right, like seriously?!  I'm super mad, and I don't know what to do about it.  I suppose there's really nothing I can really do, other than sit here and stew...  Ugh!!!  I hate Dayton's school so much!!!  Really, this post should be titled Rant 103, but I can't take the "Rant" series from Wendy, it just wouldn't be fair.  But Oh My God!!!

So, last Wednesday, I get a class assignment from Dayton's school on "poetry."  The students are to pick a poem and memorize it.  The assignment is graded on memorization (no problem), how fast the student is presenting the poem (may have a smidgen of a problem here, since Dayton rattles things off as fast as he can so he can get whatever it is done and over with, he has no patience), does the student speak monotone (are you for real?!  Yes, my son speaks in monotone most of the time!), does the student make eye contact (Oh My God...  Lord help me, I'm on my knees begging you to help my baby get through this!!!  Dayton has autism, so HE HATES MAKING EYE CONTACT), does the student gesture naturally or does he/she look uncomfortable (Seriously?!  Gesture?  Is this a play or a freaking poem?!  And no, Dayton won't gesture anything, nor will he look comfortable.  He pretends he's invisible for a reason!!!), is the poem challenging for the student?  I can actually feel a brain aneurysm coming on.  There's a pain starting in behind my left eye and I swear my right arm's gone numb.

I discuss the assignment with Dayton.  "Did you talk about poems in class today?"
"Oh...  do you know what a poem is Dayton?"
"Hmmmmm...  there's a homework assignment here (his second one this year), and it says you're suppose to memorize it.  Are you sure you weren't given another paper, a paper with poems on it?"
"No you're not sure, or no you didn't get a paper with poems?"
"No paper with poems."

Awesome!  How the hell is Dayton supposed to pick a poem?  Google poems?  How does the teacher determine what is "challenging" enough?  Are we talking Shakespeare?  My headache got worse and worse as I described the assignment to Dayton, who started freaking out...  I made him a nice warm bubble bath, set up Sponge Bob Square Pants, and rocked him to sleep.  My poor babe...

The next day my friend's in a bind and can't pick up her little guy from school, (the little guy is Dayton's only after school buddy) so I volunteer to pick up both of the boys.  Both boys go to the same school, so it's not a big deal... I call the school to inform them that I will be picking up the boys from school, so they can cancel Dayton's bus and get Dayton's weekly reading material ready for me to pick up.  After saying hello and asking how the receptionist was, I introduced myself as Dayton's mom, and she interrupted me with an "perfect timing!" and the line goes silent.  I'm thinking did the woman hang up on me?  Did she put me on hold?  Better wait and find out.  Then I thought, "wha'dya mean 'perfect timing?'  What the..."

"Hello Lou!  Did you know I was just about to call you?  How strange you would call at this moment!"  Ugh...  It's the principal...  and yeah lady, I'm psychic...  My good day's gonna turn upside down again, I can just feel it...
"I'm not sure what Dayton did, but I'm on my way to the school right now.  The two of you can tell me all about it when I get there.  Be there in 3 minutes..."

Here's her email to me to shorten this post, explaining what happened... 

From our discussion today, here are the behaviours we talked about and the time frames:

Mid-morning - Dayton left the building and informed Mr. J. that he needed to poop and he only pooped at home or outside. He ran around the corner of the building telling Mr. J. he needed privacy. He undid his pants but did come back inside with Mr. J.
At lunch recess, he was running around the halls, entered the gym, took a hockey stick, and ran outside.
Mid-afternoon, - He entered the office and took candies from the secretary's container. We took the candies from him.
mid-morning - He gave the middle finger to students
mid-afternoon - He ripped Jack's work - tore his paper in half

We shared with you some drawings that still contain weapons. He has been more off-task for the last couple of weeks - less focussed and less work produced.

Lou, please keep me posted on the situation on the bus with the boy from Middle School.
Have a wonderful Easter weekend!

Oh yes, we're so going to have a wonderful weekend...  You drip!  Where the hell was Dayton's assistant throughout all of this?!  

We had also discussed the poem assignment...  She agreed with me that it was inappropriate for Dayton, and she had suggested that Dayton could memorize a joke instead.  I'm thinking "AWESOME!!!  Dayton LOVES jokes!  Great idea!!!  Gotta give the devil credit when it's due I suppose.  

So we spent the Easter weekend looking at and memorizing four jokes...  We pretended to be comedians, we actually watched a stand up comic so Dayton could see how they behave on stage (for the gesturing part of the assignment), how when the comic asks a question, he waits a few seconds before answering, because obviously the audience won't have the answer...   What a waste of time...

"Really?  Are you sure Dayton?"  He looks at the floor, "yes momma..."
I get on the phone.  To summarize our conversation, and this post, here's the email I had sent to her early this morning, making sure she gets it right away...

Good morning Bev,

I'm a little confused...  and a little miffed. 

Last Monday afternoon I called the school to speak to you about the Poem assignment I had found in Dayton's agenda, and explained that the Principal and I had discussed the assignment and decided that Dayton could memorize jokes instead of my finding a "challenging poem," when I had no idea what kind of poem to look for...  You had told me that we didn't have to memorize anything, that Dayton was not suppose to have this assignment in his back pack.  I had expressed to you that Dayton and I had spend the weekend choosing his jokes from a joke book and had been working very hard to memorize them, read them to you over then phone to ensure that they were appropriate and promised to email them to you as his handwriting is difficult to read.  On Tuesday, Dayton tells me he's reading a poem with Mr. J... 

When I got to the school to volunteer for the hot lunch program in your classroom, I had asked Mr. J about the poem.  He informed me that you want Dayton to memorize a poem, in 2 days?  While I realize it's a short poem, and Dayton has "most" of it memorized, having things changed on him at home for his assignment caused major upheaval last night.  Furthermore, my time dedicated to Dayton memorizing his jokes now seems like a complete waste of time.  While yes, he has them memorized, I was hoping to work on his "monotone" issue, and eye contact, and having him pretend to be a "comedian," so he would look more at ease for his assignment, all things the other students are being marked on, because I wanted Dayton to feel successful.  I really wish you could communicate with me when it comes to his assignments.  It makes it really frustrating for me not having you communicate your thoughts on Dayton's progress and especially the expectations.  Thank goodness Mr. J took the time with me yesterday and explained what he'd like us to work on at home to prepare Dayton!  I had one hour to help Dayton memorize this poem last night, as after that he had a melt down because he really wants to tell his jokes. 

I would appreciate it if you still allowed him to tell his memorized jokes, he deserves that much.  Dayton has worked very hard to memorize them, and it took a lot of work for him to pick them out in the first place.  Trust me, he only likes one of the four jokes, I'm sure you can guess which one. 
1) What do witches put on their hair?
- scare spray
2) What does a monster call his parents?
- mom and dead
3) What do you call a cow with no legs?
- ground beef
4) Why is 6 afraid of 7?
- Because 7 8 9

So maybe we can come to a compromise for Dayton's sake.  Let's have him recite his poem to the class first, then follow it with his jokes? 

I would like an email at the end of the day, telling me how well Dayton did on his reciting his poem and jokes.  It is important that I know he complied as I promised him a major treat if he did well.  We haven't decided on the treat yet, as I told him to think about it.

Thank you, and have a good day.


So, all I can do now is cross my fingers and pray to our Heavenly Father that Dayton is prepared for this.  Either way, no matter what his mark is, I am proud of my son.  He's a true gem, and I love him more than life itself.  I thank God every morning for choosing me to be this precious boy's mother.  

Now that I'm done ranting and raving, please understand that yes, while I talk about my life with autism on Autism Diva, I am not asking for your sympathy.  I hate it when people say "Oh, it must be so difficult raising a child with autism, you poor girl."  And I'm thinking to myself, no, it's not Dayton that makes my life difficult, it's stupid people like you, but don't say it, cause I'm really not THAT mean...  I'm blunt, and honest, but not mean...  I know people don't know what to say...  But it really ticks me off, I mean, Dayton's healthy.  He's not dying.  So his brain is wired differently...  Anyway, back to my point.  Yes, I discuss Dayton here and our life, but Autism Diva is not about feeling sympathy for us.  I love my son.  Autism Diva is about explaining the complexity of autism.  Sharing with you is to let you know you're not alone out there, and for those of you that don't have children on the spectrum, Autism Diva will hopefully explain what autism is and what parents with children on the spectrum have to face.  Autism Diva is about awareness...

Consider yourselves hugged!  


Tuesday, 26 April 2011

An Email To The Premier Of Manitoba Regarding Our Children With Autism Spectrum Disorders

Dear Mr. Premier,

This email is written to you in the hopes of getting your attention to the problems faced by parents with children on the Autism Spectrum.  I ask that you read this email with an open mind, and recognize that I am not merely criticizing the school system, but desperately seeking some change.  My son Dayton's diagnoses are as follows:  Global Delays, ADHD and PDD-NOS (Pervasive Developmental Disorder, Not Otherwise Specified, a very, very high functioning form of Autism).

First, I would like to say that I am very pleased that the government does not shun our children into a "special school" where the building is considered more of a dumping ground for the inept children.  I am glad that in the government's eyes, my son is entitled to the same education as anyone else.  I love the "theory" of inclusion. 

My concern is that not all schools are equipped or skilled to follow through with "genuine inclusion.'  Most of my son's inclusion has proven to be "cosmetic inclusion."  Dayton spends the majority of his time in the hallway.  The school he is currently attending claims that this is by his choice, not the school's, but it appears they have no control of my son or his behavior.  If they did, he would genuinely be included in the classroom.  I think the problem stems in their misunderstanding of the Autism Spectrum.  Please don't take my opinion as though I'm suggesting that the school Dayton attends is not working hard with Dayton, but they are not skilled or knowledgeable in teaching or including a child with autism.  The Autism Spectrum is a very, very broad spectrum.  If you've had the pleasure of meeting a child with autism, you've met a child with autism.  Not one child is the same.  What works for one child, will not necessarily work for another. 

The most common thread of these children is their inappropriate behavior due to their inability to control impulse and their inability to cope with emotions and sensory issues.  I have moved through three different school division to get Dayton the education both you and I believe he is entitled to.  Dayton's current school thinks that at the core of Dayton's inappropriate behavior is my parenting.  They have called CFS about my parenting twice in the last year. I can not begin to explain the humiliation of this experience.  Furthermore, they did not believe that Dayton's diagnosis of PDD-NOS falls under the Autism Spectrum, which has resulted in them "disciplining" Dayton in the way that makes sense to with a typical child.  Sometimes even worse...  An extreme example of their discipline was when they had four teachers force my son to the floor, all of them laying on top of him over a misunderstanding because of a torn back pack, at eight years old, weighing fifty pounds...  This resulted in my loss of daycare, forcing me to work part time.  The incident traumatized my child into hiding under his bed for a few days, not being able to eat because of a sore throat due to his screaming at the school staff to let him go.  Suspending a seven, eight or nine year old child who is delayed by two years is not teaching him a consequence, it is a punishment to the parents.  My son is now looking for ways to get suspended, as to him it means that he doesn't have to show his peers just how far behind is from the rest of them.  The suspensions have been a "reward" for him.  In his mind it is better to be seen as "bad" then "stupid" in front of his peers.  Dayton's self esteem is at an all time low, as he constantly tells me he is stupid, he can not learn, so what's the point of me trying to help him at home...

The last CFS call resulted in them immediately closing the file, and asking me what they could do for me.  I wanted an advocate from the system to advocate on my son's behalf in his school.  They provided me with Brenda Suderman, an amazing woman, who is fighting for my family.  She is a true advocate, and very much a support to my family.  I have humbled myself and allowed a worker to come to my home to give me advice on working with my son once a week, but even the worker is telling me that I am doing everything with Dayton that she would recommend herself. 

On calling your office, my call was transferred to my MLA, whom I had already spoken to.  The MLA's office promised to  contact Manitoba Education with my concerns, and assured me that someone would call me to discuss my concerns further. 

Marlene Gregory of the Manitoba Education "student services," suggested that I fill out a "school of choice application form" and have it submitted by May 15th, giving me false hope for my son's future education.  It turns out that school divisions do not accept this application if the student it is being filled out for has special needs!  Even if there was a chance I was able to move to their school division (rental availability in the city is sitting at 0%, furthermore, my child with autism needs stability, and I've moved from school division to school division three times to get him a "promised education"), I can not get my child into an autism program or an adaptive program because they are all full.  When I called Mrs. Gregory back and conveyed my results, she informed me that the school divisions have the right to deny the application...  I have every reason to believe by Dayton's child psychiatrist who diagnosed Dayton with PDD-NOS, that he can live a productive life, become a contributing member of society, providing he gets the services and support his current school division is not providing him.   

Mr. Premier, I ask for an appointment to see you, and discuss my son's education.  This is not only a concern for my son, but for all children who have been diagnosed with an Autism Spectrum Disorder.  One in a hundred and ten children are being diagnosed with a form of Autism Spectrum Disorder today and the numbers increase every year.  These children are our future and they need your help.  Help them...  You can make a difference in these children's lives, if you want to, and I know you do.  You are a wise man, if you weren't, you would not be the premier of Manitoba.  Imagine our future if these children do not receive your help...   You are our leader, our voice of reason.  I know that as a parent alone, I can not make a change, but you...  You can make all the difference to our children's lives and education. 

The stress I have endured as a result of Dayton's discrimination has taken a toll on my health.  I am currently on medical leave, and am available at your earliest convenience to meet with you. 

You may reach me at home at 837-6308 or by cell phone at 771-4546.  My email addresses are and  I look forward to your call.


Lou Lovrin, a mom of a beautiful nine year old boy, who desperately seeks your help.

Sunday, 24 April 2011

Autism Essay

Wow, I read this essay on Maximum Potential on facebook, and I just had to share it with y'all. It is absolutely fantastic!!! Hope you enjoy it as much as I did.

I have autism. I hold only a few similarities to the character in “Rain Man.” When I am out on the playground, never say to my mother, “I would have never guessed that; he looks so normal” The face of autism is not a defined one.

I have autism. This does not mean I am deaf, nor does it mean I can’t understand your words. When cruel things are said, it hurts just like it would anyone else. Sometimes even more, as I am very sensitive.

I have autism. I am not blind. When you stare at me, point, and whisper – I don’t like it. I sometimes cannot control my emotions; however, I still can see you.

I have autism. I am not spoiled, undisciplined, or disrespectful intentionally. Don’t tell my parents I just need to be smacked, as that would never work and I smack back! All I know is if I am being hurt I must defend myself.

I have autism. This does not mean I am mentally delayed. I am very smart. I may focus on only a few things, but I have become an expert on them.

I have autism. Don’t think I am not capable of love or am emotionally detached from the world around me. I am very close to my family and sometimes need to be hugged. I do have the capacity to care. Especially if I see someone else being hurt or teased.

I have autism. I will line things up on the floor in my room in perfect order. This may be strange, but to me it is contentment. I can only relax if things are in sync.

I have autism. Which means I am super sensitive to sounds; I hear all of them. Even the smallest of sounds. When I get overloaded with too many sounds at once, It is hard to cope and I must step away and be alone. This does not mean I can’t handle the world, I just have to have more time to tune out as I hear more than everyone.

I have autism. I live by schedules. This is one of the ways I have found to cope with the chaos around me. Knowing what is going to happen at a certain time each day helps me prepare for transitions. That is why it is difficult for me to deal with a schedule change. I have to have order to obtain peace.

I have autism. It is very important for people to mean what they say That is why joking with me is never understood. Things are black and white to me, like a set schedule. If you say you are going to turn blue in five minutes, I expect you to do so.

So remember, having autism does not mean I am blind, retarded, unresponsive, incapable of love, or unable to function in the real world. I am unique and gifted because I have found a way to coexist within two very separate worlds. Take a moment to think about how many of us have difficulty within just the one world we live, now imagine juggling two. This is something I have learned to do. So forgive me if at times I have trouble separating the two, again I am only human.

I often hear people say to my mom, “It must be so hard for you” – no one ever says that to me. In fact, no one expects me to understand or respond because of the face society has painted autism to be. I do not know all that autism is, but I know who I am. I am special, and cherished. Almost like a superhero I was set aside to have these unique abilities. They are not a disability. They are not something to fear. In a way they are magical. I have unlocked parts of my brain that others cannot.

When you look at me, don’t look at me with sadness or feel sorry for me. Look at me with wonderment and I will amaze you every time.

This “In Their Own Words” essay is written by Tonya Procor, a loving mother of a son with autism

Happy Easter everyone!  Consider yourselves hugged!!!


Friday, 22 April 2011

~pro choice~

As I've said before I am proud to be from Canada. We have many choices. Now some of us this is always an easy task. You have the choice to spend your money, or save it. Coffee or tea. House or condo. college or work. You have the choice to have a family and get married or stay "urban single". Now yes in life sometimes you can't help fate. Things happen that aren't really a choice but you do have the choice of how to deal with it.

We have a country that allows us to make the choice of province/city/town we want to live in, the job we want, and even the CHOICE to vote. So with a proud country of choices, why aren't we able to make the ?simple? choice?

Other provinces offer you choice of home phones, cable companies, and which brand of milk you want to buy. They even offer you what school you would want your child(should you choose to have any) go to. Now here it's a little different. This is where choice has some what been eliminated. Here you have the choice of school, however, remember your choice needs to fall into the division and catchment in which you live in. So if you don't like your "home" school, get your boxes and move. Then you have the choice of english or french. Now with a speech impaired child that choice is fairly easy. We also have this thing called an "inclusion policy". Now the intentions behind it are good. I will not knock that. They tried to offer change compared to 40-50 years ago, but it's not yet perfected. Here's the other catch. Your "choice" is simple. You send your child to school or you don't. Again seems like a pretty simple choice. You want your child to have a proper education and make something of themselves and be a active member of future society. Now if your child is different/special/high needs/low needs the policy is meant to include your child. It's meant to treat all children regardless of "needs" the same. It does work, for some! The point of inclusion is to include ALL children. Now any professional will tell you that special need children are all different. They might have the same "label" but everyone is different. They need to be addressed differently, and taught differently. So in a world of choice where either you go or you don't to school, which has a policy that is suppose to make all kids feel equal you ask what's the problem?

The policy isn't including everyone. It doesn't include mild to moderate need children, and for the high need children you aren't getting a "trained" professional in their special needs area. Now other provinces offer you a real choice. You can take the public school system, or there is things like school of choice, chartered schools. So why not here? We're all from the same country. We're all under the same FEDERAL laws, and policies. Why such a difference?

Not everyone agrees with schools of choice, and chartered schools and a lot of people feel it's a step backwards. Now in Canada we're all "free of opinion". I'm not saying your right over another, or she's wrong over him. I'm saying in a country that I proudly call home, and a country that prides on our CHOICES, why don't we have equal choices. "Special Need schools" or placements, or segregation may be a thing of the past but it's my CHOICE to explore. I don't feel the inclusion policy is working at least for my family and a few others I know personally, and I don't think home schooling is an option. Maybe it's a thing from the past, and maybe just maybe it won't work. That's the thing with choices. You never know if it's the right one till you try it. I'm not saying if my child went to a chartered school his Autism would be cured. However I would like to have the choice, to see if it will benefit him since the current "choice" isn't.

So on the ending note,

we're all different, and we all choose differently but being Canadian we have the same great gift of being able to choose. I'm simply saying I want my choice. Everything with my son is trail and error. Somethings work, some don't. That's just the road that I'm on. I've tried the public schools, and the "inclusion" and it's not working for us, so I'm ready to try the next thing. My end goal is not to set us back(as a society), it's not to put down others that feel the system is working, I'm simply trying to find the best system for my child.

maybe people need to start being open to having more than one right answer to a problem that is much larger than single answer.


An Autism Outsider

The current estimate of autism incidence is about one in a hundred.
1 in 100...

I know far more than a hundred people. So do you. Chances are, we know a lot more people on the spectrum than we think we do. There are probably three or four kids at your local primary school who have autism and you almost certainly have a colleague, relative or friend.

It doesn’t work out quite that neatly of course, there are clusters in families and professions, and you aren’t going to find deeply autistic people hanging out at the local coffee shop. But on average, you know someone with autism.

But how do you know? It’s not as if they walk around with a bright red ‘A’ stamped on their foreheads. And I know enough about getting a diagnosis to know it’s not simple and straightforward even for experts. There’s a reason it’s called a spectrum – just about everyone on it has autism in their own unique way.

They might not even know themselves. The rate of diagnosis of autism disorders has increased dramatically in the last 20 years, but there is quite a bit of evidence that the rate of autism has remained fairly constant. The increased diagnosis is probably because of doctors becoming more familiar with the disorder. The practical meaning of this is that there are a lot of adults out there who have lived their whole life with ‘quirks,’ ‘habits,’ or ‘social awkwardness,’ who would be diagnosed if they were children today. There are middle aged people being diagnosed for the first time. There are both adults and children who don’t have easy access to specialists to be assessed. And if they don’t know, how would you?

You can’t. As a lay person, even as an experienced parent or teacher or paediatrician watching someone casually, you can’t possibly know if they have an autism spectrum disorder. The best you could do is guess, and some people’s guesses are more likely to be right than others. Most people won’t even think of it as a possibility, although the people reading this blog are probably more aware than most!

Have you thought autism could be the reason your weird colleague sits by himself? Or the kid at school who is far too old to be having tantrums? The annoying preschooler at the library who was copying what everyone said and wouldn’t stand still? The twelve year old who really should be able to do a sleepover by now? That kid whose parents let them live on cheese sandwiches, it can’t possibly be healthy. Someone pushing a shopping trolley all over the place because they’re only stepping on the black tiles, haven’t they grown out of that game yet?

Sure, they could just be awkward, rude, badly parented, indulged, tired, nervous, hungry, or out of sorts for all sorts of reasons you don’t know about. You could be impatient, rushed, stressed, tired, hungry or out of sorts. Or they could have autism.

You’ll probably never know. All you can do is remember that there might be more going on than you know, and have compassion.

Have a great Easter weekend!

Consider yourselves hugged,


Wednesday, 20 April 2011

~No label~

Again I thank my dear friend for letting my guest on here. Although it has been a daily thing this week, It will start to become more casual or when something really bugs me. Again I'm not here to upset people but just get people talking. There is a lot of people that are too shy/scared etc to say what's on their minds, or ask the questions that I am bringing up.

As my previous blog I stated, I would return to the topic of labels. Up until Nik’s “label” I couldn’t say I knew anyone with Autism, let alone that I knew someone with PDD-NOS. And like many others when I heard the word Autism, I thought Extreme Makeover. I laughed when the doctor said it. I asked him if we were talking about the same child. My son doesn’t rock, doesn’t flap his hands. Hell if you look at him, the only thing you could say is “WHOA, he’s a big boy”. Then I started reading. Man oh man have I read. It’s almost become a bad habit. A night, with nothing interesting on TV, I head over to old Bertha and start reading. Everything and anything really. Then I started reading that my son is Autistic.

I guess I should give a bit of a back story. Nikolas was the perfect baby. Other than the late delivery, perfect pregnancy, no midnight feedings, never cried. Such a happy, healthy baby. Then he turned 1. It started with a couple allergies, asthma, and severe skin problems. Then came age 2. More allergies, worse asthma and a “speech delay”? WTH are you talking about? He’s two, how many words does a 2 year old need to know? Well, apparently more than 5. Then age 3 came. Our first appt with CDC  (a place I had never even heard of). “Well miss Thede, he has a severe speech delay, and global developmental delays. We also aren’t able to rule out a form of autism at this point, so come back in 6 months and start therapy ASAP”. Umm I’m sorry, what just happened?  We went to the doctor with concerns that he couldn’t feel pain and now he has all these “LABELS”?  So I left. Angry, scared, confused and just plain lost. 6 months went by, and we returned. All the labels stuck and now they wanted more people involved. Not to mention at this time his asthma had gone insane and my newborn baby was fighting a blood infection in the hospital. What a life at the ripe age of 22.

At age 4, therapy wasn’t helping, everyone was hitting their heads lost at what to do. One person said, well if only he had a diagnoses, everything would change. Huhh? I thought we already had that? Now you want more labels?  So back for yet another assessment. This one took over a year, and landed us at MATC. Within the first 20 minutes of being terrified, the AMAZING doctor looked at me and said, "Yup he’s autistic."  Huhh? Are you crazy? Again, this is the time I honestly started laughing. What was he talking about. He has all these other labels and now a new one. So we present the new information to the workers, and they all agree. This was something we were all expecting, “this is good news, we now have a clear diagnosis and things will start rolling now”. Summer came, we moved, took the summer off to soak it in. School started. With all his medical diagnoses and all the labels, I have my head held high and so happy cause “we’re labelled, we’re gonna finally get help”. Nope. Now we’re not labelled right. Apparently although he is autistic, according to a school worker “ he’s just not autistic enough” Come again? Years of assessments and waiting, and all these LABELS added and now he’s not autistic enough? This has been the story since September 2010.

Now depending which family member of mine you talk to, some say more kids are effected now than before. Other’s say there’s too many labels. Maybe they're both right? Are more kids being effected? What has changed to make our kids a lot sicker now? Are they sick? Is the bar just set to high? I don’t know these answers. What I do know is that it shouldn’t matter. If a person loses both their legs, you sympathize. But if they only lose one, do we tell them, “sorry you still have a good one, start hopping?” No. Why does it matter what degree of disability a child has? I have always thought, if a person/child/dog/ cat whatever needs help, you help them. No questions asked. Today that is not the case. Those that need help, aren’t getting it, and the ones that don’t need help are clueless to the situation.

I admit I haven’t been the perfect person. I caused my shit, and trust me I’m laying in it. My child didn’t ask to be different. I think it’s time we get back to basics and stop caring about the stuff that doesn’t matter and start focusing on the important stuff. Our children DO matter. They are our future. Just because society looks at labels and difference we don’t have to. My son doesn’t see the difference between him and another kid. He doesn’t see the difference between an adult and a child. To him we are all equal. Why is that an almost 6 year old “labelled” child can see this, but well educated, over paid adults cannot? I have to admit I’m guilty of wishing I didn’t have to list all his “labels”. With him getting ready for a new school, part of me doesn’t want to tell them all his labels, weaknesses. I want to go into a meeting and just smile for all his strengths. Luckily my child wants to learn. He has dreams and goals. I know “normal” children that don’t even have that. My son is nice to people because he wants to be, and he knows it’s not nice to be mean just because someone is different. He’s passionate about music and numbers, and trying new adventures. Why have meetings about everything he can’t do, and all the “bad/wrong” things about him. Why not change some of the labels? Instead of saying, Nikolas is autistic, delayed, large, allergic switch it up to caring, loving, funny, brave, accepting? At the end of the day we all have labels. We all use labels. She’s “fat”, he’s “skinny”. You're “ugly”, they’re “perfect”.

So this is my take on labels, I’m also signing off with my own label,

Wendy-passionate, mother, daughter, sister, friend, mommy tummy:D

Autism Behavior - Communication

Behavior is something which all children display in one form or another. Our child's behavior tells those around them many things about their wants, needs, and desires. The most important thing to understand about behavior is that it is a form of communication. It is a complicated form of communication, but a truly basic one.

Typical children are much better at verbal communication skills than children with autism. Typical children do not always rely on physical behavior to relate a message. Often, children with autism are telling us a lot with their behavior. They can be giving an answer, asking a question or expressing a frustrated response.

Some behaviors expressed by children with autism may be appropriate or inappropriate depending on the situation. Inappropriate behaviors give a negative aspect to our children's learning experience.

It does not matter if the negative behavior occurs in a social situation or academic situation. A negative behavior must be dealt with so that the child with autism can acquire as much information as possible. Some undesired behaviors can not be eliminated. In that case those behaviors should be exchanged with desirable behaviors the child can use.  In order to do this, it is both the teacher's and parent's responsibility to teach the child to "change their mind" as my dad says.

One of the stories a family related to me was a teacher who was asking their child a question. Just for example we are going to say the question was 'What is 2 + 2?' This family's child did not understand the question. Their child did not even know how to answer the teacher.  It is very common for children with autism to have auditory deficits and not be able to focus on what he's being asked. As far as I'm concerned, if the government insist on inclusion, then this bit of information should automatically be listed in the teacher's handbook.

The first thing their child did was to become withdrawn. The well meaning teacher went closer to the child and asked again. Now this family's child became aggressive and used some really choice curse words.  While the well meaning teacher wants to help the child, the child with autism perceives this as an invasion of his space, or an attack.  Dayton's perception would be that he's in trouble and under attack. His auditory processing is severely impaired, and he while he can speak, it doesn't mean that he is able to process verbal questions or instructions all of the time.  For the most part, he's pretty good at it, but sometimes...  let's just say that there are times were he's over stimulated by sounds, smells and too many things going on in the classroom...  Auditory processing (hearing and understanding what the speaker is trying to convey to you) and speaking yourself are two completely different things.  While closely connected, they are not the same thing.

A little understanding of a child with Autism and communication can help this situation. If a parent and teacher wish to change this undesirable behavior they need to replace it. This is done by teaching a child a different technique or method of getting what they want.  In order to do this, parents and teachers MUST work together.  Furthermore, the policy of "inclusion" orders for the teacher to accommodate special need students.  Most children with autism are very visual learners, so the teacher should accommodate visually to the child, instead of giving auditory instructions.  Furthermore, replacing the behavior is NOT ENOUGH.  The child needs to practice the replacement behavior.  Children with autism do not automatically learn things like typical children do, they must practice over and over in order to "get it."

Tell the child with autism that when they do not understand what someone is asking they can raise their hand. This is a technique to let the adult know what is going on. Another technique is to teach the child to say a special word or phrase instead of cursing. This also gives adults involved a cue that they are feeling frustrated. 
Then everyone involved has to understand if they do not respond to those cues the behavior will escalate!!!  These are two simple but possibly effective way to help or change behavior in a positive way. Changing or shaping the behavior will help the child with autism have an environment more in line with their learning needs.  As most children with autism have difficulties with auditory processing, the teacher could then write down or draw the question out for the child with autism, which would most likely have a better response.

Now many of you would say "a child cursing?  That is highly inappropriate!  Where is the child learning these words?" as many of the teachers themselves think.  Let me assure you that parents of autistic children do not condone cursing from their children.   It is not acceptable behavior.  To answer your question, it is not the parents that teach their autistic children how to curse.  Dayton NEVER curses at home, EVER.

The trick is to convince the school your child attends, that they should heed your advice, and not be judgemental of your parenting.  If you're fortunate enough to have a school that works with you, this should not be a problem.  If you're fortunate enough to have a school that understands autism, then again, your job will be easier.  For those of struggling on both counts,  we need to figure out a solution...  Any suggestions or ideas are most welcome!!! 

Consider yourselves hugged,


Tuesday, 19 April 2011

Ranting 102

I'm so glad my dear friend invited me to guest blog with her. I don't expect people to agree with me all the time, but if I made you stop and read this I've done my job. As long as people are talking about the problem we're headed in the right direction. Thank you again Hun for allowing me this.

Ranting 102

So my last blog got me started, and then I realized, maybe everyone is at each others throats because the correct information is NOT being given out. Again this is just my opinion, I’m sure there are many who won’t agree with me, but that’s ok. That’s democracy. It doesn’t matter if you're pro inclusion, pro private, whatever. At the end of the day we all need to have a common goal of providing the best quality of life to our children. Regardless of their label(I’ll touch on labels later on)

First the schools in Manitoba, here in Manitoba we have 686 public schools, which house 13,100 teachers and teach over 179,802 students each year. Now a report out earlier this year stated the government of Manitoba spends approx. $10,000 a year per student to attend public school. Since January the province has announced it spends about 3 million dollars a year in a “bright start” program, which will help students remain in school and graduate. They have also suggested paying students. Yes that’s right. If you want to be a drop out, the government is willing to pay you to finish school. On January 27th, they also announced that they would increase the funding to “special need students”. Apparently since 1999 they have improved the funding for special need students and now spend $186.1 million dollars annually. They have also stated in the report that for the 2011-2012 year they will increase the special needs funding $1.3 million dollars and increase level 2 and level 3 funding by 3%. Now from a bystanders view that’s pretty good, no? If we re-elect the government they will increase the funding for special need students. Hmm it should be a win-win for all special need students. Well as the report in the Winnipeg sun showed, although there is new funding and not just for the special needs department, once you pay ALL the division people, and janitors, ALL the new funding the province announced will trickle down to less than $60 a student. That’s right. ALL the announcements this year, and by the time they pay all the high end people who don’t even work with our children, our children will actually see about $60 in the class. Now I’m still looking on stats to find out how many special need students there are in Manitoba, but I’m going to take a rough guess. If 1-6 students are “disabled” that’s roughly 29,996 students in Manitoba have “special needs” Which isn’t a lot compared to the yearly enrolment. Now take the 186.1 million dollars a year for special need funding, That’s about 6.2 million dollars a year per special need student. SERIOUSLY? Yes it took me a little bit to do that math, but if the province is stating that they spend 186 million dollars a year, and we roughly have 30,000 special need students in this WHOLE province, 6million a piece. I can tell you right now that in my son’s education, he does NOT see 6 million a year. This is his first year in school and all year the school has been complaining because they won’t get the level 2 funding GRANT, which is just a $8500 tax credit to the division. Without the grant he’s not entitled to anything. No 1-1 aid, no modification, no speech, no OT, NOTHING. Seriously? Something is seriously flawed in this system. If we’re spending 186.1 million dollars a year and 76% of special need kids ARE NOT getting help, where’s the money? Even the 34% of kids that do get help, aren’t getting TRAINED help. The province is quick to offer tuition rebates to “in demand jobs”, doctors, trades, ect. But you can’t offer something to interest people to work with our children? I think if this is the ONLY option. Because really here in Manitoba it is the ONLY option. If you home school your out on your own(jeez give me the 6 million dollars a year and I can assure my son will get ALL the modifications and resources he, public for our kids is the only choice. Maybe we should have more say. In daycare 2/3 of the staff have to be TRAINED. You cannot operate a daycare full of CCA’s. At least 2/3 of the staff has to be ECE2 or ECE 3. So why aren’t we applying the same guidelines to our education department. 13,000 teachers in Manitoba and how many are trained to modify, adapt, and teach these children?

So again, these are just my thoughts. To the parents that believe the system is working for them, that’s great. The sad part is, for all the fancy announcements and all the “promises” a lot of our children are NOT getting the help. I know of several people who aren’t getting the help. So I think it’s time we as parents step it up and start demanding what our children need. Not just assuming that they are getting the best because personally when my child is being told to “stay home” or “I should just accept this is as good as he’ll get” this is not the best situation.


Monday, 18 April 2011

Ranting 101

Guest Post, I figured you're all tired of listening to my rants...

Introducing Wendy, a facebook friend of mine, who's 5 year old boy has been diagnosed with PDD-NOS (Pervasive developmental disorder, not otherwise specified) and global delays, just like my little guy.  Wendy has endured incredible dissapointments with her school division and is being forced to move to the city in order to get services for her little guy.  

-Ranting 101-

I’m sure I don’t know all there is to know, but someday I will. One thing is for sure what I do currently know is disturbing. The system sickens me and this may offend 1 or 2 or more of you, I apologize in advance for that. These are simply my opinions and if you don’t think, your not forced to read them. I do ask that you stop and think outside the box that you have surrounded yourself with. Maybe the thing you thought was right, has another side?

So I am the mother to two beautiful children. Some would say I have the perfect family. The handsome son, and beautiful little girl. However behind the perfection there is sadness, fear, anxiety, and anger. There is struggle, and frustration with understanding how this world works. I am proudly Canadian, and although some would argue I am proudly a Manitoban. So here is a taste of my issue I am having with being a proud Manitoban.

I am a mother of a little boy with more than enough problems on his plate. Now although he has problems and is “special needs” he’s still my amazing child. The past 4 years have been hell. There is no simple way of putting that. There have been highs n lows, and many cry fests in my bathroom, or the public washroom at the clinic, ect. My sadness has turned to anger, and my anger is driving my determination. In Manitoba some would be proud to say we have a “inclusion policy”. here’s the catch, it DOESN’T include everyone. It only includes the families on the higher end of the spectrum, and only if your school/division feels like enforcing it. It also doesn’t “include” trained professionals. Yes we have teachers, and resource and principals, but in this “amazing” policy, you will not find a “trained” teacher for every disability and “it’s too costly, and time consuming” . Here’s the other catch, it’s the ONLY policy. So even if your don’t agree or feel that the policy is working your only option is to quit your job and home school your child and cover the costs yourself because if you don’t like the policy your shit outta luck. In several other places in Canada and the US you as the parent have the option. You have the option of private school, public schools, funded private, special need schools, ect. Here you don’t. Your either in or not. Not to mention during election years(like this year), the government has reduced the number application approvals to UNDER 40%.Don't worry though, if you re-elect them, they will increase it back up. Here’s the other catch, they say early intervention is key. However most families will tell you they spent more time on bottomless wait lists, waiting to the point that by the time they got into it was too late for any help and were told to go to the school division as that’s your only option. Here’s a thought, instead of telling me what I have to do and painting it like I have a choice, why not give me an actual choice?

Now I know some parents feel the inclusion policy is working for them, that’s great. The point however, an inclusion policy is suppose to include ALL, not some, not 34%, but ALL kids. Here’s my other issue. Now maybe there are people out there that need to know “why”. Why is their child Autistic, what happened, what caused it, ect. Here’s the truth. You’ll never know. Every day, and every month we are wasting money trying to figure out WHY it happened, instead of looking for ways to treat it. Instead of spending money looking at vaccines(personally I don’t care), put the money towards more trained professionals. Short wait times, more staff, more resources.

Now here in this province, approx. your child will be diagnosed between the age of 3 and 6. Some later, some earlier. If your lucky to get in prior to 5, you have more options. Post preschool there’s not much out there other than the school. Now if your child is “mild” most schools will NOT help. There are even some sadder situations where “higher functioning” kids aren’t getting help(that’s a different rant). So your child is too old for the programs and services, and the school says they can’t help, what do you do? Well depending who you talk to in the am from the pm, they will tell you “nothing, it’s politics, pay for private, home school, it’s your parenting, try different diets, blankets, this that and this next thing”. So let’s say your child makes it through school, good grades or not, finishes school. Now I’m not an expert but from what I’ve heard, and read, as well as compared to other cities in North America, what choices do you have? Some may be able to get into one of the few programs offered by the province, city. Others? Well they will be cut a monthly cheque.
Why not follow other cities and start young. Start guiding and informing and “training” these people(yes i said, they are people!) to be independent and live full healthy lives as adults? They like to say, “invest in our children now, and great things will come in the future” So I ask, why are only some kids being invested in? Who has the right to say one kid deserves a chance over another? For a society that has come along way since the 40’s and 50’s, we are still very far from where we need to be.

My child is a person. He has thoughts and ideas, and strengths and weaknesses. Why is he looked at like a weakness instead of being proud of his strengths? He’s not alone. Over 40,000 Manitobans alone are disabled in one form or another. Not to mention the families that are effected. I don’t expect to move mountains, or try to upset people. I just think there isn’t always one answer to every problem. These are our children, why is the government telling us what they need? Why not ask us? Has the minister of education ever called you up and said, “hey, how’s the policy working for you?” No. It’s next to impossible to even get a email from her. This isn’t just Autism families either. A lot of families are hitting brick walls, fighting with schools, ministers, ect. This is not working. I think it’s time to re-think things and maybe be accepting that there might be another option. If we can figure out how to squeeze 4000 new people into this province every month, then I’m sure we can find a solutions that works for ALL children.

Yes there are MANY more problems and this is just a tip of my rant. The last year has been one of the hardest years of my life. The saddest part is, it had nothing to do my kids. All my stress and sadness came from dealing with these so called "experts", ministers, resource ect. I don't care if you've gone to school for something "kinda like this". I wake up everyday and deal with it. I wake up and have to explain to my son why he's different, why kids laugh at him. Also on a closing note. If my "special" son wants to piss in the stall who cares? At least he's doing it by himself and taking some control of his day. Like really, PICK your battles cause I promise a urinal or a stall is not a battle worth fighting for.

Till the next rant,


The IEP Meeting

I had blogged about Autism Winnipeg a couple of weeks ago, and how the creator of the Autism Winnipeg Facebook page met up with me to talk about Autism Winnipeg.  Instead of discussing it, she insisted on talking to me about Dayton, and wanted to prepare me for Dayton's upcoming IEP meeting which would be taking place a few days after our talk.  Her pep talk helped immensely, and I took her advice literally:  "I am Teflon!"  Acknowledge the school's remarks and deflect right back at them.  Teflon.

Armed with Marni's pep talk and her image of Teflon, off I went to the Dayton's IEP meeting along with our CFS social worker, Brenda, who has been involved in our family strictly to advocate for Dayton's rights and education in the St. James School Division.  Brenda's like a fire cracker, and I felt confident walking in with her along with Diana, Dayton's social worker for Children With Special Needs And Disabilities.

When we enter the board room, we are met by the school division's special needs co-ordinator.  This will be the first time she'd sit it on any of Dayton's IEP meetings, thanks to to fire cracker social worker from CFS.  Somehow, her word carries more weight than mine.  There's also the school division's child psychologist, again, her first time involved in Dayton's IEP meeting as well.  The Occupational Therapist and Speech Therapist are not available for the meeting.  Surprise, surprise!  The Occupational Therapist has only observed Dayton's classroom once, and the Speech Therapist has not yet seen Dayton, as far as I know.  The principal, guidance counselor, Dayton's classroom teacher, his aid, and the resource teacher were also present.

The guidance counselor, a real piece of work, sits there with a fake smile on her face.  Her and I do not get along.  She seems to think I'm some how beneath her, and she thinks the same of my husband.  She's the one who's called CFS on myself and my husband claiming that Dayton has access to Glen's hunting rifle, and that Dayton was going to come to school and shoot them all on the first call (the principal had also called the police), and the second time she called CFS because Dayton had cut a picture of a man bent over and another man with a paddle tapping his tushy.  Apparently Dayton told them that "daddy paddles my butt" and they took him literally (who's autistic now?!).  This guidance counselor is also the one that sent me the email I had posted on the blog asking me whether or not I feed Dayton breakfast...  She thinks that Glen and I have created (and I quote) "a hostile environment" for Dayton at home by allowing him to play with water guns in the summer, Nerf guns all through the year and of course because Glen has played the "Call of Duty" video game with Dayton.  While I am not a big fan of guns, and may not agree with Dayton playing "Call of Duty" with his dad, it doesn't seem to matter where we go:  the play ground, the swimming pool, or his 6 year old buddy's house, we run into the same problem.  The boys and girls at the swimming pool are playing with water guns, the boys on the playground have brought out their toy guns and his 6 year old buddy plays "Call of Duty" all the time. 

Anyways, back to the IEP meeting...
That woman (the guidance counselor)!!!  Unbelievable!!!  Grrrrrrrr...  I guess there's just no pleasing me I suppose, but that woman!!!  Pardon the expression, but I hate it when people try to blow smoke up my butt!!!

Remember the email I had posted on the blog titled "Email to Ms. Cruella Deville, aka Dayton's Principal?"  The one where I said "I walked away from the meeting feeling as though no matter what I say, there will always be that unspoken insinuation that at the core of of Dayton's behavior problem is my parenting.  It has become exhausting to prove to your staff that I am a loving and caring parent, who is trying to instill values and morals in my child."  Well, I think the principal had a little talk with her staff perhaps, because the guidance counselor started the meeting by telling me that she wanted me to know that the entire staff of the school had the utmost respect for me as a parent.  That they were impressed with how I am always advocating for Dayton and that I refuse to give up on him.  I sat there stunned, first at her claim of respect, second at the thought of giving up on my son?!  How dare she voice that out loud? I'm not going to get into the profanities that had run through my head.  This woman sat across the table from me, with this big fake smile on her face, putting on a show for whom?  Certainly not me, she's made it abundantly clear that I am the scum at the bottom of her shoe by her past actions...  Actions speak louder than words she was uttering now.  I'm thinking she wanted to impress Brenda or the her boss from the school division?  Or had the principal forced her to complement me?  Either way, it was not genuine, and definitely not appreciated.  If you respect me, then you will treat me and my child with respect at all times, not just in front of your employers!!!  It took every ounce of strength not to reach across the table and wipe the smug grin off her face.

The show continued on with the guidance counselor telling us all how she thought about Dayton and I during her holidays...  While cleaning out her basement, she had come across a book she used to read to her children, and this children's book reminded her of Dayton and I, then proceeded to read it to us all.  Yes...  she read us all a children's book during the IEP meeting.  Every other IEP meeting we've had took half an hour, this IEP meeting took well over an hour and a half because the first half hour was spent on telling me how much the school staff respects me and reading a children's story...  I had to leave an hour into the meeting to meet Dayton's bus.  None of my questions about his IEP had been answered and the meeting turned into a non meeting as usual.  Again, nothing is accomplished.

Turns out after I left the meeting to pick up Dayton, the guidance counselor showed her true colors to everyone present when Diana had asked for a meeting of all professionals involved in Dayton's education.  The woman LOST it!  Brenda had called me later to let me know that she refused to attend this meeting, and that her face turned red and her lips turned white in anger.  Had it not been for the school child psychologist agreeing with Diana that this meeting is a good idea, the school would never had agreed to it.  Their meeting is next Thursday, and I'm a little stressed over it.  It's a meeting for professionals only, which means I am not to attend the meeting.  If I could be a fly on the wall for this meeting...  Brenda promised to put the guidance counselor in her place during this meeting if she is to exhibit the same type of behavior she had during the IEP meeting...

The guidance counselor also practically "sneered" at Brenda, telling her she knows I've been looking at other schools for Dayton.  Brenda  calmly gave the group an analogy of going to the same grocery store wanting to buy apples, but the store never carried apples.  The store than should not be upset with you for visiting the grocery store next door to purchase your apples, should it?  The St. James School Division only has one Occupational Therapist, and this therapist works for the whole division and works only part time, which is why Dayton has not received any therapy.  Same goes for the speech and the physical therapist.  If the school can not meet Dayton's needs, then we need to explore other schools, right?

Please consider a prayer for us. 
Consider yourselves hugged!!!


Friday, 15 April 2011

Outcast Parent

I remember a time when I was just a mom without any worries about autism. That time was before Dayton was diagnosed, when life felt normal, like everyone else's life. I figured Dayton would make friends, be a typical  teenager, go to college or university, get a job, get married, have kids of his own (I wanted 5 grand babies) and live life to the fullest, be a contributing member of society, and most importantly, be happy and successful.

I remember what my life felt like before the diagnosis.  Why didn't I appreciate it more? Instead I worried about stupid things like finding the the best quality baby food, debating whether I should just make my own.  My worries are so much greater now. Will Dayton make genuine friends, friends that care about him?  Will he get married? Will he be able to hold down a job? Will he have the five grand babies I've dreamed about?  Will he be independent? Will he have the means to take care of his family?  Will he be able to function without my support?  On "bad days," there seems to be one thought running through my head...  I know what needs to happen.  I just can't die.  It's just not an option. Who else would take care of my babe?

I want that carefree feeling I had before the diagnosis. I'm thinking we both do, so I take my babe to the park!!!  The park is literally in my back yard.  I make a deal with myself that I will bring my camping chair and a book that has nothing to do with autism and read while he plays, you know, like the rest of them parent folk do.  I will not sit there and assess Dayton's behavior and wonder how and when to "jump in" and intervene. I will foster his independence by trusting he will take care and remember the rules.  I will talk with the other moms and join in their conversations. I will not let autism dominate my thoughts and I will relax and enjoy the company of moms my own age.  "Hoooooo Raaaa!!!"

Before we head out the door, we must go over the rules:

“No touching anyone, keep your hands to yourself”
“No screaming”
“Find mom if you need help” etc.
I ask Dayton to repeat the rules back to me and check for understanding.

I grab my Kindle and chair and Dayton races ahead of me to the play structure. I take a big breath and think of how relaxing this outing will be. As I approach the play structure, a friendly woman says "hello."
“Hi” I introduce myself and point to Dayton "that one over there is Dayton."
“Dayton, yes of course. It’s nice to meet you.”
Dayton, yes of course... What does she mean by that? Does she know him? Does she know about his diagnosis?
“Stop it!” I tell myself as I unfold my chair. “Stop it right now!”
Two other women are seated on the super uncomfortable bench.  They both turn and smile at me.
“We were just talking about St. Malo” a mom tells me. “Have you been there?”
“Oh yes, I love camping there, so much fun for the kids."
“That's right” she beams. “The kids go off on their own for hours while the adults hang out at the camp site. It's such a relaxing day."  I'm thinking wow!  Their kids might go off for hours and come back, but I'd probably never see mine again. I stamp the thought out of my mind and turn back to the conversation.

“And if you add a little more seasoning and put it back in the oven for another 30 minutes, it will be the best pot roast you've ever tasted” one of the women says.
Pot roast! They have time to make pot roast on a week day?  Am I the worst mother ever?
I listen in amazement as the women around the table share their recipe secrets. By the time I've finished prodding my son to do simple tasks all day long, I can barely remember my name I'm so tired. Cooking a pot roast would not be on my list of things to do.

With nothing to add about pot roasts, I turn towards the play structure to see how my babe is making out. Sitting at the end of the slide happily arranging his pokemon cards, he appears completely oblivious that every other child is playing tag. I resist the urge to go over and prompt him to participate.
“Focus” I tell myself. “It's time to relax.”

The conversation has turned to homework. Now here's something I can talk about! “Can you believe how much homework they get?” one of the mothers says.
“I know!” I chime in.
“I'm thrilled about it” says the short one. “It keeps him off his video games and gives me time to make dinner.”
“That's true” adds the third one. “I use the time to do laundry. Every now and then Stuart has a question but for the most part, he does his work on his own.”

I'm frozen in shock! What? Did they just say they use this time for themselves? Did I hear that correctly? My mind drifts to our homework sessions. Armed with motivators and lots of patience, I coerce my babe to complete his homework every day. After an hour of prompting, presenting questions in different ways, silly diagrams and theatrics to keep Dayton interested, homework is finally done. He races off to his video games while I stare vacantly into space, too exhausted and emotionally drained to move for the next five minutes.
I snap out of my trance and smile. The women are chattering about their children asking for cell phones and wanting Facebook accounts. But I can't relate to any of it and I'm bored. It's as if I’ve been dropped here from a distant land, with a culture so foreign that we might as well be speaking a different language.  Think it's time to go.  I announce to Dayton he has 10 minutes left to play.  Then 8, then 5, then 3, then 1 minute left.  I'm sure the women behind me think I'm nuts.

While I'm saying my goodbyes, Dayton begins to stim and flaps his hands while doing a little jig. I think it was the first mom that spoke to me that stared at Dayton incredulously, and not being able to resist, she glances at one of her friends as in “Are you seeing this weird behavior?” Part of me tries not to think of their conversation when I leave and the other part of me doesn't care.

Walking home, I ask my babe if he had a good time.
“Great” he says. Looking at his delighted face my heart feels like it might just burst. In his pure innocence and naivete, it never occurs to him that people might judge or gossip about him. Why would it? He accepts and commends others just as they are. The world might think he should change his ways but my son doesn't care. He's not out to impress. People spend a lot of money on workshops trying to develop that kind of self confidence.

With a smile on my face I hold his hand. It's true, sometimes I long for my fantasy world where I have time to cook pot roasts and relax in a park while my son plays with his peers. I don't have that luxury but my son has enriched my life in so many ways. With a new perspective I have developed a compassion and respect for people with differences that wasn't present before. There was a time when I looked upon people with challenges in pity. Now I desire to know them and discover their depth within. Now I strive to make a positive difference in other people's lives. My son has made me a better person. It has come with a price and plenty rewards but I am grateful because I wouldn't want it any other way.

As my dad always says, consider yourselves hugged,