Tuesday, 31 May 2011

Any Child Will Do A Chore If You Ask Them At Bedtime...

Me:
"Take the trash out."
"Clean up your room."
"Put the Lego away."
"Put your bike away."
"Clean up your mess in the washroom.
"Feed your cat."
"Put your laundry in the hamper."
"Get your homework out."
"Put your dishes in the sink."
"Dayton!  What did I ask you to do?"

Dayton:
"Dayton, blah, blah, blah, blah, blah..."
Me:  "oh no you didn't!!!"  picture me snapping my fingers, moving my head and shoulders like aunt Jemima.

You get the idea.  It's an every day task, keeping on top of your child's chores and teaching them responsibilities.  It just doesn't seem to end.  At the end of the day, I feel like a broken record.  I wait around for 7:25 pm, when I give my babe his Melatonin and say "mamma loves you baby, have a snack, then brush your teeth, wash your face and go pee following your picture schedule in the bathroom, then get Jack (his cat, who looks a lot like Puss in Boots, pupils dilated, earn pinned back, and if the cat could actually speak, I swear he'd scream 'nnnnooooooooo')...  turn your TV off after Sponge Bob... or no TV tomorrow..."  8pm, the TV is off and Dayton hugs Jack close to him, and closes his eyes to go to sleep...  Ahhhh blissful peace and quiet.  For me, that is.  Not the cat.  The cat glares at me as I tip toe past Dayton's room, look in and turn off his night light.  I think he actually hissed at me last night if I'm not mistaken.  On occasions like this, I gently remind Jack of the role in our little family, that he too needs to earn his keep.  "You get to sleep, eat and poop when ever the urge strikes, in return you get the bedtime job cat.  Don't look at me like that.  We've all got a job to do."

Now before y'all go calling PETA (People For The Ethical Treatment Of Animals), I need to let you know that no animal is harmed during Dayton's bedtime routine.  While yes, Dayton does hold Jack against his will, it is Jack's job to help him go to sleep.  My hair is damaged enough from Dayton's twirling it around his fingers, and I just can't afford the industrial strength hair conditioner to get the knots out of my hair anymore.  In exchange for his work, he gets treated like a king during Dayton's waking hours.  I sneak him outside while Dayton's in school, so he gets some fresh air, I get him his food (dry food mostly, but once in a while I like to treat him to wet food too, which means I have to change his kitty litter more often), and some kitty treats for doing a good job.  Jack also take cat naps from 8am to 3:10pm when Dayton gets off the bus, and then I allow him to hide where ever he pleases, until 7:30pm.  Then he's a cat at work.  Usually Dayton only has him in a vice grip for about an hour, and then Jack's free again.  I think given his only requirement is one hour of a little strong cuddling session with Dayton at bedtime, Jack's actually getting the better end of the deal.  By a landslide.

No body gives me treats for all the work I do.  Nope.  I've just found out (actually thee doctor's lab just found out on Friday) that while I have no infection in my urine, I do have blood in my urine.  The left side of my flank is in agony, and the pain spreads over my hip and into my abdmomen.  On Friday, I couldn't go pee, so thought I'd best get checked out.  "Looks like kidney stones..."  That's the treat I get for doing all the cleaning, laundry, cooking and let's not forget, cleaning the kitty litter.  I'd trade roles with Jack in a heart beat!  A heart beat I tell you!  Did I mention the cat gets his very own blanket and is the king of the house until Dayton gets home?  Yes he is, and I am Cinderella.  I've even got a sun tanned crown on my forehead, but it looks like a patch of dirt in a shape of a crown.  My skin just won't tan properly...  Just call me Princess Lou from now, OK?

Once in a while, it seems while Dayton strives on routine, routine, routine, he will find a chore we hadn't finished yet, naturally at bedtime...  "Oh, but mamma, we haven't done our home reading yet.  You wanted me to learn how to read, right?"
"You play dirty babe.  You're right, you need to learn how to read, so get the home reading and let's get 'er done buddy."  We finish reading, I tuck him in with Jack, again the cat looks at me with those big, huge pupils and ears pinned back, practically begging me to take him with him...
"Oh mamma...  I forgot to brush my teeth."
"Dayton, you have five minutes to brush your teeth, and after that, you need to stay in bed."  He brushes his teeth, for what seems like an eternity...
"Oh mamma, I'm thirsty..."
"I've had enough!  Get in your bed and stay in your bed!!!"
"But what if I get hungry in the middle of the night?"
"Then wake me up and I'll make you an onion sandwich (He won't touch an onion).

So, I'm thinking of how I can fix this, because the older he gets, the smarter he gets to be to find an excuse how to get out of bedtime.  So I'm thinking this...  Make the bedtime routine start earlier.  I figure if I tell him an hour earlier that it's bedtime, (his chores are on his magnet board in his bedroom.  For every chore he does, he gets a magnet, which is how he earns his things) he just might get some of his chores done to 'prolong bedtime.'

Hmmmmm....  Am I on to something?  I'll give it a try and let you know.  As always, I'd like to know your thoughts.  Email me with some suggestions, cause I'm running out of ideas.  While I'm at it, does anyone have a good handle on disciplining in the home and disciplining for things that happen at school, for example, how long should a child of 9 years of age be grounded?   What are acceptable consequences for a nine year old?  I need help here too people!!!  Help Princess Lou!  For the love of God, help me figure this out!  LOL.  autism.diva.help@gmail.com




Consider yourselves hugged,

Princess Lou

Sunday, 29 May 2011

Concern Over Autism Diva Help Blog - Need Your Help

I got a phone call from Dayton's school division to discuss their concern over my blog.  When I met with the lady, she was straight with me.  I like that.  There was no mistaking her intentions, and I felt comfortable telling her my own intentions with this blog.  Do I like criticism?  Nope.  But there's something about 'constructive criticism' that I don't mind.

The lady was concerned about the blog's affect on my relationship with Dayton's school.  I explained to her that after the principal retires, I basically won't have a relationship with the school, and so far, even with the principal there, the relationship has been very strained.  While I feel comfortable talking to the principal, I can not work with the guidance counselor, and as a result of her constant disrespect of me as human being, I'm having Dayton bussed to and from school, so that I don't have to enter the school.  How difficult do you think it is for me to have to send Dayton back there, day after day, when I myself feel so uncomfortable?

I do feel bad about one of my posts regarding the principal, where I titled the post Email To Ms Cruella Deville aka Dayton's Principal.   The post itself I don't feel bad about at all, but I suppose the title is hurtful, and it was not my intent to hurt the principal.  I never thought the principal would read it and therefore didn't consider her feelings.  I honestly didn't expect Autism Diva Help to be this popular.  I'm still in shock that in exactly 3 months of launching Autism Diva Help, I've had just under 5,000 hits! 
Pageviews today
45
Pageviews yesterday
125
Pageviews last month
2,881
Pageviews all time history
4,878 and it's only 11:15 am on a Sunday morning!
Do I really think that Dayton's principal is or resembles Cruella Deville?
Ummmm, no.  But you gotta admit, the title is catchy and interesting.  The goal is to entice people to read my blog, not make them think 'wow, how boring, NEXT.'  My honest opinion, and I hope she reads this, is that she's the only person Dayton responds to and respects.  She actually seems to care about Dayton, where others (well, I think the resource teacher does too) don't seem to genuinely care.  I don't want her to retire, but I think if she does, she'll get bored, and hope she comes back as Dayton's aid.  She's just got a way with him that no one else does.  Dayton loves his resource teacher and seems compliant with her, but the principal has a way of stopping his naughtiness.  Not all the time, but if she's present just before Dayton starts to lose it, she's able to stop it.  If she's too late, no one can stop him.  
There is a difference between a differing point of view and respect.  I do not agree with the principal most of the time, but I do respect her.  My 'beef,' I explained to the school division is not with the school Dayton attends, it's with the education system as a whole.  I understand that Dayton's school is working within the parameters they are given by the government.  I understand that they are doing everything they can within their means.  The problem is that it's not enough.  Who's fault is that?  THE GOVERNMENT.  Unfortunately, all I have is my experience with MY son, and can only write about Dayton and HIS experience.  Which means that I will talk about the issues he has at HIS school. So, how do we get around this?  

Well, I've got Wendy who has been a guest poster on Autism Diva Help.  I'd like more people to get involved not just in reading the blog, but in writing it too.  For those of you too shy to be an 'author,' you can email me your story.  I promise to change the names to ensure privacy.  For those of you willing to give blogging a shot, email me with your google account and I will add you to the blog as an author.  Dads are welcome too...  I wonder what would be a male equivalent to diva?  Maybe we can change the blog name?  Or edit it to include dads?  

Email me with your thoughts!!!  autism.diva.help@gmail.com.  If we really want to raise awareness to the global problem of education of our children, then we need to talk about our global experiences.  Help me do this.  Autism Diva Help is not MY blog, it's OUR blog.  A blog for all parents concerned with their children's education and how they are treated!!!


In the mean time, consider yourselves hugged,

Lou

Friday, 27 May 2011

Dayton's Principal Retires

I am so confused.  As much as I've disagreed with most of the Principal's views, she is the only person that Dayton actually respects at his school.  Respect and "like" are two different things, and while Dayton rejoices at the prospect of having this principal retire, I'm not so sure I care for this tid bit of news.

This principal is tough.  She doesn't take Dayton's crap or anyone else's for that matter.  She knows everything that's happening in the school, I swear, this woman is the mother you hear about with eyes in the back of her head.  She sees it and knows it all.  No student is able to get away with anything without her knowing about it.  Sure, she's sliped here and there, but all she has to do is give Dayton "the look."  You know the look.  The one that makes you shake in fear, the one that makes you stop, think, then do what you're told to do. 

Like I've said, her and I don't really see eye to eye on very much, but when it comes to Dayton...  I don't know...  But lately, it seems that out of all the staff, she's the one most interested in learning about autism.  I just think Dayton could learn a lot from her.  I think she's the type of person Dayton needs to have as an aid.

Dayton's had good aids, that are kind, generous and have been able to connect with Dayton on a personal level.  He's had some bad ones too.  But even with the good ones, he seems to control them, rather than the aid controlling him and his behavior.  Perhaps the word control is not a good choice of wording...  But do you know what I mean?  At home, Dayton knows I'm the parent, and he will do as I say.  At school, he seems to be under the impression that he is an 'equal' with the staff, and doesn't seem to view the staff as 'authority figures,' with the exception of his principal that is...

Dayton's resource teacher is wonderful with Dayton, and he seems to work well with her, probably because she takes him out of the classroom to the resource room, where it's just the two of them, knee to knee, working 'together.'  I have never had an issue with the resource teacher, even though Dayton has stolen her pop and her apple...  The little rascal.  I wish I could talk to her more often.

The guidance counselor...  well, let's just say her and I do not get along.  Unfortunately, Dayton knows exactly what Glen and I think of her.  She's one of those hoity toity women who thinks she's above us all.  She's made me so uncomfortable that I have Dayton bussed to and from school.  I don't like meeting her in the school, as she just seems to judge me.  Whenever I see her, I hear all the negative things Dayton is doing.  Rarely ever do I hear a positive remark from her regarding Dayton.  Fortunately, I'm not the only one that's seen her hostility.  The CFS worker advocating for Dayton in the school has met her hostility head on, on numerous occasions, as well as my CSS worker and Dayton's behavior therapist.  The three of us have discussed her hostility, chawking it up as just her 'personality.'  Unfortunately for us, the principal is not taking this woman with her in her retirement. 

So, upon learning of the Principal's retirement, I first congratulated her, and told her how much I respect her.  Again, differing views and respect are two different things...  I then asked her if she would consider coming back as Dayton's aid...  I think she thought I was being sarcastic or perhaps joking, but I'm not.  She has the right personality for the job.  She's strong minded, just like Dayton.  She knows how to get him to cooperate.  Dayton knows that she is in charge, making it less likely for him to disobey or be defiant.  There are times when the principal was actually able to discern the difference in Dayton's autistic behavior and him just being a nine year old boy, trying to push buttons and see how far he can go...  Not always, not the majority of the time, but non the less, she's made some great progress with Dayton, and I fear her retirement will make a huge impact on Dayton's learning.  Maybe, just maybe, she'll get bored and come back...  as Dayton's aid.  Maybe...

In the mean time, I will pray for the new principal to have some knowledge on autism, to train the staff and give them some autism programming. 

Just my crazy thought for the day...


Consider yourselves hugged,


Lou

Thursday, 26 May 2011

Time To Take Off The Training Wheels

Oh my goodness...  My baby is riding his bike.  No training wheels, just Dayton's own leg power, focus, concentration and balance.  And lets face it, those of you that know us, this is a huge miracle!  My poor Dayton didn't stand a chance, inheriting my 'swag' (I don't call it clumsiness, I call it swag).

I'm constantly having to remind Dayton:  "Don't follow in my footsteps...  I run into walls, trip over air and suffer from swag."  I once had a friend who didn't think it was possible to fall up the stairs... then she met me.  Not only did I trip walking up the stairs, but I slammed my face on the wall going down.  It takes skill to get ran over by parked cars, trip over flat surfaces, get tangled up in a cordless phone and run into open doors and easy to see walls.  I'm pretty sure my guardian angel is thinking about switching careers.  I pray Dayton's stays put, because she's done a good job with him.

Anyway, my point in talking about me, is that my poor little guy has inherited these mad ninja skills of mine in pretending to hug the floor when falling down.  The poor kid is just as uncoordinated as I am.  He has no balance, just like me, and with his ADHD, he can't focus or concentrate on anything for long periods of time, so when I blog about his success, believe me, I'm celebrating.  And today is one of those days.

I had to downsize when I moved.  Going through marital  issues, I wanted a home that I could take care of on my own, and still afford to eat.  During my move, Glen decided to throw out Dayton's old bike, the one with the training wheels...  Ugh!!!  "Why did you throw it out?  What is he supposed to ride now?"
"It was too small for him anyway."
"Did you think of raising his seat?"
"Ummmm...  no..."
"Grrrrrrrrrrrrrr."
So this last Christmas, Glen got Dayton a brand new bike.  Sans the training wheels.  Dayton was over joyed to see a brand new bike, and asked "Where's the training wheels dad?"
"You're turning nine worm (yes, Glen's nick name for Dayton is worm...  I have a cute story about that one too), and it's time for you to learn how to ride a bike with no training wheels.  Mom will teach you how."  I'm thinking, jeez buddy, thanks for the vote of confidence!  The kid's got no balance, no coordination and no focus...  I have zero coordination.  It's the blind leading the blind here buddy.  How on earth am I going to teach him how to ride his bike?

Spring came.  I ask Dayton if he'd like to give it a go on his new bike.  "Yes!!!  Let's go mamma."  I struggle to get his bike out of storage, rummage through the closet to get to his helmet, and off we go to the playground which has a paved path all around the playground.
"OK Dayton, sit on the bike.  Put your foot on the higher of the two peddles and push.  Mamma's got your back babe.  I'm going to hold on to you the whole time."  Off we go...

We make it half way through the circle, and my back is killing me.  I call out to our neighbour's teenage kid who's walking the dog, and beg him to trade with me.  "I'll walk your dog every day this week, if you take a few minutes to teach Dayton how to ride his bike."
"Done!  Here's the bag to collect her doggy doo doo."  Awesome.  Just what the doctor ordered.  But I'm grateful for the help.

Dayton is struggling to keep his balance, peddle and focus all at the same time.  Things are not going well, and he's demanding to have his training wheels back.  Of course, Glen didn't think to get training wheels.  I'm not even sure if they make training wheels big enough for this bike.  I'm cursing his name right about now.  Our first day on the bike is a complete failure.  The good news is, the little dog didn't make a doggy doo doo for me to pick up!  I do try to find the silver lining in things.

On another day, I ask Dayton if he'd like to try to ride his bike again.  "No mamma, I got swag.  I want training wheels."
When Glen arrives after his day at work, I look at him and tell him to take Dayton out for a bike ride.  "I'm tired Lou, you take him out."
"Yeah, I don't think so.  You need to take him out, or you need to go to the store and get him training wheels.  I'm not arguing with Dayton to learn how to ride his bike.  Your brilliant idea, you go out and teach him."
"Ugh.  Fine.  I haven't had dinner, I'll teach him to ride his bike, you make supper."
"Done!"  We're having Kraft Dinner.  Have fun!"  (Glen hates Kraft Dinner, he's lucky I didn't put peas in it, he won't touch a pea).

Dayton does better this time.  Glen's face is all red from running behind him, and he's complaining of chest pains, but my baby does better!  I'm so proud of him.  He still hadn't mastered how to stop the bike and ran into trees and bushes to stop, but hey!!!  He's getting the hang of concentrating and focusing on where he's going!  Awesome!!!  He can't start peddling the bike unless he goes down a hill to start, but it's a start!!!  Dayton swears this is the last time he goes out with dad to ride his bike, and he hates the bike, but I had this feeling he's going to be just fine.  Here's a picture of Dayton on day two of learning how to ride his bike with his dad.


We tried riding the bike one more time...  Dayton was frustrated, but he did better.  He was able to peddle his bike non stop for half the loop around the playground, without me holding him on his bike!  It was awesome!  Slamming into a tree to stop, but hey, it's going to take practice, right?  I was so proud of him!  But to be honest, I started to get worried.  Would he ever learn how to ride the bike?  I had to slow down and remind myself that this was only his third attempt, with many days apart from the first attempt.  I needed to give it more time.  But with Dayton crying and having a melt down, should I push this to continue?  Not today.  We'll give him a break for a few days.

Today...  Dayton has been grounded for this week, due to an incident with a BB gun his six year old friend carries around outside.  I'll explain it another time, long story short, he grabbed the BB gun his buddy dropped and shot him in the head.  He swears the clip of the gun was missing, so he had no idea there was a BB in the gun because he doesn't know how to load the gun without the clip, but either way, he could have seriously hurt the little boy, and I'm done with his gun obsession.  While I understand that he was not at fault for loading the gun and that his intent was not to hurt his little friend, the damage has been done, and there must be a consequence to his actions...  He's no longer allowed to play with anyone that carries a gun onto the playground.

Anyways, he's grounded until Friday.  I made a decision I figured he would not like, but I made it just the same.  "Dayton, you're grounded and have to stay inside until Friday after school.  The only way you get to go outside is to ride your bike."
"Well, I guess I'm not going outside then."
"I guess not."

So when he got off the school bus today, I asked him if his aid put books in his back pack for home reading.  Of course the answer was still "No."
"All right then, mamma is going to figure out what to do for homework.  We'll do some writing."
"No mamma.  I do work at school with the rest of the kids."
"Yes babe, but you need some extra practice."
"Ugh."

We get inside and I give him one hour with his Nintendo DSI, after which I explain we will do some work.  He plays with his DSI for the hour, and then I tell him it's time to do work.
"I thought you said I could ride my bike."
"Yes, I did say that.  So are you saying you will ride your bike instead?"
"Ugh...  Yes mamma..."
"Awesome, let's go."

He rode his bike.  I couldn't believe it.  I didn't need to hold him on his bike, he didn't need to go down the grassy hill to start it.  He struggled at first, but was adamant to push off on his own.  HE DID IT!!!  He rode the bike many times around the playground, pushing off all on his own!  I was even able to teach him how to stop his bike without running into the bushes or trees!  HE DID IT!!!  And after supper...  HE DID IT AGAIN!!!  Hooooooooraaaaay!!!  Way to go Dayton!!!  I screamed so loud, cheering him on, one of the neighbors offered me her pom poms...  Oooooops, maybe I carried it a bit too far.  But she has no idea how difficult this was for him to learn.  She doesn't know of Dayton's autism, his ADHD, or his global delays.  My baby is a gem!  And I am so very, very proud of my boy.

Look at him ride his bike today:



Now I just got to convince him that wearing a helmet is OK, and won't 'mush his brains.'  I keep telling him if he falls on his head, it will be much worse, but he just can't get past the sensory issue of something on his head.



Consider yourselves hugged,

Lou

Wednesday, 25 May 2011

Accusations And Hate E-mail

Awwwww, shucks.

It appears I've ruffled a few feathers out there.  I seemed to have raised some controversy, and made a couple of people a little "uncomfortable."  Believe me, I don't take this lightly, as I am a people pleaser, constantly bending over to make people comfortable and desperately wanting to be liked by everyone involved in Dayton's care.  So, hearing that there are people out there that don't like what I have to say does hurt, but I have to keep my focus on what's most important at heart.  This really, really sucks!

Being accused of not having respect for people, their positions in organizations, their work, etc. is disturbing to me.  I have a lot of respect for Dayton's teachers, his principal and especially his resource teacher.  Dayton's guidance counselor and I have a major personality clash, but in saying this, I respect her position with the school.  Do I agree with every view these women have?  ABSOLUTELY NOT!!!  But there is a major difference between 'disagreement' and 'disrespect.'

I have never spit in any one's face, kicked them in their shins, publicly humiliated or threatened them in a personal or professional way.  Dayton does this on his own when he's treated with little respect.  In saying this, I do not appreciate or respect people or organizations that are working for their own gratification, for recognition or helping our children only if it helps their political ambitions.  What do politics have to do with our children's disabilities?  Your own political agendas and your ambition for recognition does nothing for our children, or for me, so please spare me your hate E-mail.  I have bigger and better things to worry about.  When those of you worried about lining your own pockets make our children's education a priority, I will show you respect.  Look at my son's face.  Does this look like you have our children's education and safety in mind? 


This happened during school recess, with a full time aid, two weeks ago.  The school staff told me Dayton "fell off the swing," while Dayton tells me he was "pushed off" the swing.  Somewhere in the middle lies the truth.  Either way, I'm not impressed.  When I picked Dayton up from school, blood was coming out of his mouth and face.  The white of his right eye was an angry red, and I feared for his eye.  Driving like a maniac to the nearest hospital, my son was speechless.  I was told by the nurse that Dayton was in pain and in shock, which is why he wasn't speaking, something common among children on the spectrum.  Dayton didn't speak for two days. 

For those of you thinking I have no respect for you, look at my baby's face one more time.  Ask yourself "if this was my child, what would I think?"  Then put yourself in my shoes.  Do I blame the principal?  No.  Do I blame the resource teacher?  No.  Do I blame the guidance counselor?  No.  Who then do I blame?  The Manitoba government for not educating our educators and aids.  That's who I blame. 

When Dayton is playing in our back yard, I'm right there with him.  When he plays on the play ground, I'm outside on my camping chair with him.  When he goes swimming, I'm in the swimming pool with him.  I don't do this because I can't bear the thought of not seeing him 24/7.  I do this because when Dayton gets an idea, he follows through with that idea, without thought of the danger it poses to him or others.  It's called AUTISM.  I know my son looks good, he gets his good looks from me.  But even though he's the handsomest little man I've met in my life, he has AUTISM.  This means I can not leave him unattended.  He needs care every single second of the day.  Our schools do their best with the funding they receive and within the parameters they've been given, parameters and funding given by the Manitoba government.  So, my problem is with the government, not you personally.  Just because I don't agree with your views of removing God from our classrooms, does not mean I don't respect you.  The minute you're more concerned with your own agenda and acknowledgement than our children's education, is the instant I lose respect for you.

I hope I've made my stand clear.  This is Canada.  We have freedom of speech here, do we not?  You don't like my blog, don't read it.  No one is forcing you to.  Be assured, you will not silence me, no matter how many hate E-mails you send me.  I will continue to fight for our children's education, they are OUR future!



Consider yourselves hugged,

Lou

Tuesday, 24 May 2011

What Happens At The Camp Fire, Stays At The Camp Fire

What happens at the camp fire, stays at the camp fire, unless you go camping with me ;)

There are no realistic written camping guides out there.  All the lying, glossy brochures capture a super happy dad, reeling a huge fish in, wearing a baseball hat, sun glasses, shorts and a tee shirt.  There's a care free mom with her happy go lucky children, all wearing big smiles, as warm and fuzzy as the hot sunshine, secluded in a small paradise.  Ever notice how the moms are all young, slim and tanned, belonging on a Vogue magazine?  Some are even pictured tubing or water skiing.  The children are pictured smiling around a campfire, singing songs and roasting marshmallows.

It never rains on the covers of camping guides.  Mother is never shown sweating over the picnic table, frantically protecting the food from rain, or running after a toddler running the opposite direction of the washrooms.  To answer your question, no.  I don't have a toddler, but the campers next door to us sure did, and what a little rascal he was, LOL.  Made me grateful for Dayton's current age.  The mother is never shown waving with her arm held high, with the fat under her arm waving right back at her.  I'd also like to add that the brochures do not mention ticks, and yes, we most certainly did encounter quite a few of those.  My poor Dayton got two of them on the same day on the back of his neck.  Grandpa got one on his belly, and Glen...  This one's funny...

Just after we all go to our beds for the night, Glen crawls out of his bed, walks over to mine and wakes me up.  "Check this out!"  In a sleepy haze, I see a brown spot on the top of his wrist.  "Congratulations, you have a birth mark, now go back to your bed.  Show your dad tomorrow.  I'm sure he'll be super impressed."
"Seriously, check this out..."  I rub my eyes and look a little closer.  It looked like a flat body of a spider with really short feet.  "It's a tick," Glen says.
"Well, what do you want me to do?  You know I hate bugs...  get away from me."
"I need to set it on fire."
Now, you'd know how comical this is if you'd ever met Glen.  He's a hairy guy.  I mean Chubaka hairy.  I pray to God my baby doesn't get to be as hairy, but between my genes and Glen's (my arms are so hairy, I shave them in the summer, this summer I'm thinking of waxing), I'm sure my little monkey man doesn't stand a chance.

I hear mom roll over on her bed.  "Want some matches?"
"Yeah, that should do it.  Thanks."  I'm wide awake now, trying to contain my laughter, waiting for Glen to set himself on fire.  He lights the match, blows out the flame and presses the burned end of the match to the tick.  I'm thinking "dang it!  No fire and dance of pain tonight."  With the first attempt failing, Glen tries it again, and again, and again.  Finally, after four tries, some singed wrist hair, and this all frustrated look, he announces he's pulling the tick out.  I thought he should have done this to begin with, but what do I know.  This was the first time I'd seen a tick up close. 

After pulling the tick out, Glen says he's got to kill it.  The only way to kill it is to set it on fire.  Would you believe this thing is fire resistant!!!  It just would not catch on fire.  I finally drowned it in the sink.  "Good night everyone.  See you in the morning."  That was our first night camping.

Our second day at camp, it rained all day.  Dayton was losing his mind.  He was getting bored, and towards the evening, I allowed him to run around the campfire to do a "sun dance."  In the process he ran and knocked over the propane lantern.  To say that Glen was a little 'miffed' would be an understatement.  Poor kid.  I further aggravated Glen by pointing out one of the camper's drawers was busted.  Even with two grown men, the drawer still needs repair.  We ended the night playing the Phase 10 card game and went to bed.


The Lord must have felt we deserved some sun shine, so our last full camp day we enjoyed some nice weather.  The couple next door to us (not the ones with the toddler, the other side of us ;), had a little girl camping with them.  The couple seemed nice, and threw bacon to Glen and mom, no doubt feeling sorry for the beggars smelling their cooking and screaming "bacon, bacon, bacon!  Bacon good!"  The couple (Gwen and Brian) seemed nice enough, so I talked to them and their daughter Alysha.  Turns out Alysha is the same age as Dayton, a few months older and a grade ahead of Dayton, but still!  A girl Dayton's age!  Playing her Nintendo DS!!!  Dayton came out of the camper with his DS and when he saw Alysha playing her DS, I swear, his jaw dropped.  I invited Alysha to come on over to our campsite with her DS.  The two of them were attached at the hip for the rest of our camping trip. 


Dayton and AlyshaAlysha's an amazing little girl.  I say amazing because Dayton just doesn't play with other children very well.  It always ends in a physical fight, or at the very least, a nasty argument.  But not with Alysha.  No meltdown, no anger, only bliss.  So wonderful!!!  I just had to exchange contact information with Gwen and Brian.  If they hadn't given their contact information, I was prepared to follow them home, no joke.  They're a great bunch of people!!!  Did I mention their daughter is amazing?  They made our camping trip so much fun!  They're a great couple, with an awesome sense of humor.  So easy to get along with.  Not many people like them left around.


Hope everyone else had a memorable May long weekend ;)
As always, consider yourselves hugged,


Lou

Friday, 20 May 2011

What Do You Do All Day?!

I stole this from a friend of mine who posted this little skit on facebook.  It made me laugh and totally reminded me of my life, in the current state it is in...

A man came home from work and found his three children outside, still in their pajamas, playing in the mud, with empty food boxes and wrappers strewn all around the front yard.   The door of his wife's car was open, as was the front door to the house and there was no sign of the dog. Proceeding into the entry, he found an even bigger mess. A lamp had been knocked over, and the throw rug was wadded against one wall.   In the front room the TV was loudly blaring a Cartoon channel, and the family room was strewn with toys and various items of clothing.   In the kitchen, dishes filled the sink, breakfast food was spilled on the counter, the fridge door was open wide, dog food was spilled on the floor, a broken glass lay under the table, and a small pile of sand was spread by the back door.
  
He quickly headed up the stairs, stepping over toys and more piles of clothes, looking for his wife. He was worried she might be ill, or that something serious had happened.   He was met with a small trickle of water as it made its way out the bathroom door. As he peered inside he found wet towels, scummy soap and more toys strewn over the floor. Miles of toilet paper lay in a heap and toothpaste had been smeared over the mirror and walls.   As he rushed to the bedroom, he found his wife still curled up in the bed in her pajamas, reading a novel. She looked up at him, smiled, and asked how his day went.   He looked at her bewildered and asked, 'What happened here today?'   She again smiled and answered, 'You know every day when you come home from work and you ask me what in the world do I do all day?'   'Yes,' was his incredulous reply.   She answered, 'Well, today I didn't do it.' 

Why does this remind me of my life?  Well, maybe this couple had a child with autism?  Sounds like my house, for sure!

It just seems to me that since I've been off work, my life's been actually busier than it has been while working.  All the appointments that I've had, the advocating for Dayton in his school and with CFS on board advocating beside me, I've just earned two additional appointments a week, not including the behavior specialist and CSS worker appointments or Dayton's child psychiatrist appointments which take place once a month.  Check my post on How Autism Changes One's Life for more info on just how many appointments happen for a family with an autism diagnosis...  Then I get home in time to pick Dayton up from the school bus, and he wants to play outside.  I can not leave him unattended for even a second, which means I'm out there with him.  By the time Glen comes by after work, I feel super guilty because he's worked all day, and now he has to make supper.  On the odd occasion, I'm able to BBQ something and convince Dayton to play by the patio so I can make supper and still keep an eye on him and his friends.  

There are days where I feel like I need to take a day off.  I just feel overwhelmed.  I wish I could lay in bed all day and let Dayton do as he pleases, but that's just not possible.  I have however taken advantage of the sofa and my kindle, allowing him to watch TV or play a couple (or a few more, or a lot more) video games so I can "catch a break" and read.  Naturally, Since I got myself my kindle, I've downloaded 11 books on education or autism...  so, even reading, I'm not really "catching that break."  Let's not even begin to say how much time I spend blogging.  It's as though I've replaced my passion for curriculum work with blogging, LOL.  I just can't seem to settle down.  Then I wonder what Dayton's problem is...  Poor kid never stood a chance between Glen's and my own genes.


There are days (most days) where my home looks like someone broke in but didn't find anything worth stealing.  I do try to keep up with it all, but it seems as possible as shoveling snow during a snow storm.  There's always someone behind me "helping" me not be bored while they're away during the day.  While I appreciate their concern for my boredom, I wish they would be less concerned with my boredom and more concerned with their own.


And then Glen arrives, looks around and asks "so, ummm, what did you do all day?"

At the end of the day,  I'm just grateful for the little things in life: medication, naps, and multiple personalities to help deal with it all.   

And on this note, I bid you a farewell for the long weekend my friends.  I'm going camping ;)
Wendy promised to take care of you all for the weekend, and I promise to have more to write on Monday.  Let's hope I have some interesting topics waiting for me in my email box, so email me with a request on the topic you would like me to discuss.
autism.diva.help@gmail.com


 Consider yourselves hugged,




Lou



 

Wednesday, 18 May 2011

The Clouds have cleared...

So it's me again, Wendy.  It's been a little while since I did a guest blog and like my last one stated, I must have been fogged over from the clouds of hope. Don't worry folks, the clouds have left and I'm more confused about the "system" than ever.

First, I had my second "autism" meeting and it was good. The kids took SO well to each other and I was thrilled. Finally parents that get me, that understand. The saddest part was there was a little boy (not even 3) who appeared to be of "normal" and people would expect our children to be wild and crazy, yet this tiny little boy was attacking, punching, yelling, bashing heads with our kids. Where was his mom you ask? Sitting on her cell phone smiling. Yup. For all the ignorant ppl that give us moms dirty looks, and ask why we let our children out, excuse me? My "special" child behaves better than some of the "normal" children. So check yourself.

Okay onto the clouds clearing, sorry just really needed to get that out of my system. Okay so this is Nik's 3rd week at the new school/daycare. Maybe my hopes were too high? Or maybe I was just clouded by the thought that after fighting n crying he might actually get the help he deserves.

Well on the daycare front- The staff is amazing, he's integrated SO amazingly, he loves going, he's "comfy" as he calls it. Then yesterday I get the dreaded news. "Ms Thede, Nikolas is doing amazing, but we just wanted to let you know his 1-1 worker that he LOVES (they are allergy buddies) is leaving on May 27th. Don't worry though, although nik loves her we will be replacing her." ***WTF*****OMG***ARE YOU CRAZY*** Yes these are the thoughts that ran through my head. A child that doesn't warm up to everyone, is still in a transition phase, doesn't handle transition well but now your taking about his "safe"zone and replacing her? OMG. On their side, I do want to say they are amazing. I haven't felt this safe at a daycare in a LONG time. But seriously?

Onto the school front. Hmm where do I start. Maybe I should start by everyone says "no news is good news". Well I hear nothing from the school. So I assume it's all okay. Then 7:45am, I'm walking Nik to daycare and the resource teacher approaches me. Being without my morning coffee (slept in), and half asleep I'm bracing myself. She comes to tell me he's doing awesome. He understands his visual pictures up in his room, and he's understanding what's expected of him. he's doing awesome work with his EA which is shares with another non funded child. He knows every type of bird (it's spring month at school). I'm thinking, WOW this is awesome. So glad we moved, so worth the money and stress and everything. Then a zinger comes from left field. We're not putting anything in place for Grade 1. No funding app, no nothing. We are willing to hear what MATC has to say but we think Nik will be fine cause he's handled the last two weeks great. **OMG***ARE YOU FRICKEN KIDDING ME** SERIOUSLY?** Yes it appears we are back to where we were at the start of this school year, and 6 months ago, and a month ago. OMG. Now what?
Here's the other thing that she brings up to me. As some know Nikolas is a bubble child. If they made one, I would own it. He's allergic to EVERYTHING you can think of and stuff you can't. He has severe asthma, and sleep ap we also just found out he has a problem with a liner in his brain. Needless to say he's my worry kid. So anyways. Chronologically speaking, he's almost 6 (may 30th), mentally 3-4 yrs old depending on the day. According to the province of MANITOBA, although my child is special needs, and mentally not the same age as he is physically, he is required to carry, dose, and administer his own medication. He's a large child (some moms have been able to see that first hand) he needs an ADULT EPI. Now at daycare it's no problem to have the staff carry and give him his meds as needed. However at school, he is expected to carry, and determine when he needs and how much, then administer himself. I'm sorry but he's terrified of needles. Do you really think if he's having a reaction and has to decide between Arius and EPI, he's going to be able to make the right choice? Yes I understand he needs to learn, I'll give you that. I find it shocking that in daycare it's no questions asked, yet in School medical isn't a consideration for funding, because they are expected to do it themselves. Let me remind you, in September (first day of school), an older child stole Nikolas' EPI and shot it off in the air, but you want me to let my kid walk around with it?

I love the idea of public school, and I think daycare has made an amazing difference in my families life, however I just don't understand how it's through the same government yet SO different. I've said this before and I'll say it again. Just because my kid turned 5, his Autism didn't go away. This crap of losing everything at the age of 5, are you kidding me? This is the age they need help the most. Lots of transition to go through. With that being said I was shocked that I know a mom (original blogger herself), who's school will not hold a child back even though it's been requested by the parent, I get a letter sent home last night stating Nikolas is required to attend 5 weeks of summer school. Huhh? He's doing awesome, he's "so smart", he needs no help, but he is REQUIRED to attend Summer School?

I have yet to figure out who you have to speak to in the province to actually get answers but don't worry followers, I will figure it out. This system just doesn't make sense. At my mommy date this past weekend I asked the question, with the new diag. system/scale that states there is NO longer low and high, middle it's ALL Autism, what is the province and agencies going to do? Right now if your low functioning you do have A LOT more resources. Still not enough, and not always with trained staff but you do have some options. If your child is mild to high functioning, sorry your shit outta luck. There is some places that don't take high functioning children, so what will happen when it's all changed?The funding criteria allows for low functioning, but declines high functioning, Is the province going to re-write the entire Inclusion Policy? I doubt that, but don't worry. I will find the answers. People may not agree and that's fine, I've said this before and I will say it for the rest of my life.

As a mom I'm suppose to chase all the monsters away, fix every busted toy, and protect my child. When my child cuts his finger I put a band aid on it. Guess what folks? Shoppers Drug Mart is fresh out of Autism Band aids. As a mom I go through lows of feeling like I've failed. My job is to protect him and I just can't find the damn band aid. So while some of you dis-like my approach to things that's fine. We all do it different but I will find that band aid or die trying.

Until the next time. Get out enjoy the weather and as my partner in crime would say "Consider yourself hugged" or kicked depending who you are.lol.

Wendy

The Autism Winnipeg Facebook Group

I gotta tell ya...  Here I was told by the Children's Coalition that for the majority of the kids on the autism spectrum, the school system is "working well."  This does not seem to be the case for many of the parents on the Autism Winnipeg Facebook Group.  If the "woman" I spoke to at the Children's Coalition is paying attention to this group, her blood has got to be boiling. 

I had originally sought out the Autism Winnipeg Facebook Group for support from other parents, to share what's working with some of our kiddos and what's not.  Lately though, I've been getting a lot more out of this group.  I asked the group to come out and meet, and I did get to meet three new ladies.  Not a huge turnout, but non the less, a turn out it was.  Better meeting three parents than none.  I got to meet their beautiful children, and finally met Wendy face to face, the autism mom who's been blogging on this blog with her "Raving Series." 

What a rush of ideas coming from this facebook group!  One of the moms had asked the following question just 13 hours ago:  "So if you went to a discussion/questions/comments meeting with all the Societies of Manitoba - including Asperger's/ASM/Mfeat/MATC/etc. what would your questions or concerns be?"  In 13 short hours she got 43 responses to the question.  What a terrific question!!!  I didn't know where to start with my questions!

Another mother had posted:  "Letter-Writing Campaign..............EAs are a good start, so therefore it would be the Honourable Minister Nancy Allen. That who the focus needs to be on and why the need."  In one short hour, she got 13 responses! 

Our own dear Wendy had posted an online survey regarding what parents thought of our education.  Here are her results so far:  83.3% have children in the school system, 60% have a special needs child in the school system, 16.7% think inclusion is working and perfect, while a surprising 66.7% think it needs some tweeking. 60% of ppl who answered do have level 3 funding, 50% did think have special needs children in class benefited everyone, very shocking, 100% of people who have taken the survey stated teachers and aids should be fully trained to work with special need training. Thank you everyone who has already taken it, looking forward to future takers.

The online survey was a brilliant idea, and I wish more parents would answer the survey.  The survey is completely  100% private, and Wendy has no idea who answered or what their answer was.  We're thinking of doing another survey and post it on this blog.  I hope for those of you reading Autism Diva Help that you take the time to answer the very short survey as it is confidential, and it would take less than a minute to answer.  The intention (once we post it) is to take all this information to the government and the media.  


I love the Autism Winnipeg Facebook.  During the last couple of weeks, it's been found to be highly interactive, with questions posted getting almost immediate replies.  No one is belittled for their beliefs and everyone in the group cares about each other's struggles.  We may not all have met face to face, but the care is most evident.  Get some autism support!


Thank You Marni Wachs Zuke for creating the Autism Winnipeg Group.  Thank you to all the parents contributing to the conversations and posting your opinions and questions.  You are all truly amazing parents! 


If you're not a member of this group, it's open to the public.  Check out Autism Winnipeg and join in the conversations, ask questions, get advice!  This group is not only for parents.  It's open to grandparents, aunts, uncles, sisters, brothers, cousins, and friends.




Consider yourselves hugged,


Lou

Tuesday, 17 May 2011

A Sneak Peek Into Date Night For Parents Of A Child With Autism (Well, at least our first date night in a long time)

It's been such a long time since Glen and I went on a date.  A looooooong time.  So long in fact, I snuck my kindle into my purse, just in case. 

We both kind of felt awkward.  Neither one of us knowing where to go or what to do.  During the last week I told him to think about where he wanted to go, letting him surprise me and asked what time to book the respite sitter for, only to be told "I don't know."  I booked the respite sitter from 6pm until 10pm. 

Finally, date night arrives, and with it, the respite sitter.  I grab my purse (my trusty kindle ready with a new book to read, just in case) and Dayton's Sensory Profile for us to review.  I know, I know...  how romantic.  But I like to be efficient.  I didn't want to review this with Glen and chance Dayton overhearing me trying to explain to Glen what it all means.  You see, I am Dayton's main care taker.  When the appointments are booked, they're booked with me - all of them.  I can count on one hand how many Occupational Therapist, child psychiatrist, Speech therapist, pediatrician, CFS, school, school division, advocacy group, social skills and doctor appointments Glen has attended during the last nine years.  When I start talking "sensory issues, picture schedules, social stories, shotty neurotransmitters, autistic behavior, phonics, behavior therapy, wait watch & wonder, floor play, etc., Glen's eyes take on a kind of glossy look.  I can tell he's not hearing or understanding what I'm talking about, but nodding his head and making grunting noises as if he understands, just to make me stop talking.  So I figure it's time for a crash course in autism lingo and hopefully an understanding of what is happening for Dayton in his world.

We jump in the truck and he asks me where we're going.  I told him he had a week to decide, "so start driving."  At this point I just want to have one meal without little fingers in my food.  He decides on Olive Garden.  Sweet!!!  My favorite restaurant!!!  I didn't think he cared...  See, we're having some "issues," seperation does that.

When we were told there was a 45 minute wait for a table, my immediate reaction was to look down to my left and begin to say "there's no way Dayton will be able to wait that long," then realized he wasn't with me.  It was just Glen and I.  I felt a pang of guilt leaving Dayton at home while I dined at the Olive Garden.  I then wondered if Glen would be able to patiently wait for 45 minutes. 

We waited outside, enjoying the sunshine and the light wind.  We talked about the weather, Glen's truck making funny noises, our camping trip we're planning for the May long weekend...  then just kind of sat there silently.  Finally our table came up!  Awesome, by now I'm starving, and getting bored to the point where I had used my blackberry to go on facebook...  We're so out of sync!  What happened to us?

We sit down, open our menus and discuss our food choices.  I feel this kick at my shin."What did momma tell you about kicking under the table babe?"  It was a knee jerk reaction.  Glen just kind of looked at me sideways.  "Sorry, I was just trying to stretch my legs.  Where's the bathroom in this place?"
"Right in front of us to the left.  Don't sit on the seat and don't forget to flush the toilet."
"Seriously?"
"Sorry, habit..."
"I'm back.  Did the waitress come by yet to take our order?"
"Not yet, I see her coming now.  Did you flush the toilet?  Did you wash your hands and turn the water off with the paper towel like momma showed you?"
"Stop it." 
"Here we are, here's your napkin, and don't forget...  Talking with your mouth full is rude buddy, so remember to chew, swallow, then talk.  Don't want you choking."
"You don't have to cut my meat for me...  Stop it!  You need help woman.  Maybe there's a momma anonymous somewhere in the city.""
"Sorry, habit...  Speaking of Dayton and habit...  I want to review his Sensory Profile with you.  You need to understand..."  You can imagine the rest.  By the end of the profile, the man actually had drool coming out the side of his mouth and his eyes were mare slits from the sheer boredom of reading the twenty page profile.  I almost felt sorry for him, but then remembered my life, and the expectations placed on it.  I remembered the crankiness, the IBS from the stress of it all.  I need to share this responsibility with him, get his input and have Glen understand that there are things he's being unfair towards Dayton with.

Just because Dayton looks typical, does not mean he understands.  Reviewing his Sensory Profile hopefully opened Glen's eyes to this.  Dayton has visual, sensory and auditory issues.  Asking Dayton what is 1+1 is difficult for Dayton to process, but writing the same question on a piece of paper helps him better understand the question.

So, in other words, our date ended up revolving around Dayton.  Go figure.  LOL.  Maybe our next date will have more focus on us as a couple.  The good news is that we both got home and no one got hurt.  No arguments, and I felt like we had a calm discussion regarding Dayton's future.



Consider yourselves hugged,


Lou

Monday, 16 May 2011

Grocery Shopping With Your Child On the Autism Spectrum

O.K, I'll admit it.  I have not mastered this skill "gracefully."  I prefer to go shopping for anything without Dayton coming with me.  This is much, much easier to do now that I'm on medical leave and he's still in school.  But when I do have to take Dayton with me, I need to plan and prepare.  A simple trip to the grocery store requires the preparation of a military invasion.  Hiding in every isle is the potential for a super duper melt down.  These kids have sensory issues, right?  Sensory meaning sight, sound, taste, motion...

I love to shop at Costco's.  I get everything I need there, in bulk, making grocery shopping less frequent.  Also, Dayton is a tall nine year old boy, and Costco's is the only store with them huge shopping carts my boy can still fit into while I shop.  Efficiency is everything in my world with autism.  For Dayton though, the lights are too bright and they emit a buzz that only one with autism and perhaps dogs can hear.  When Dayton can't handle the crowd, or the lights, or the "buzz," he curls into a foetal position in the shopping cart, and covers his head and the rest of his body with his jacket to muffle the sounds of people speaking and protect his eyes from the light.  If I take Dayton shopping with me, I can not take his father with us, he gets "embarrassed" when Dayton does this because people keep staring, and he of course wants to "punch them out."  Much, much easier to go alone with Dayton then, less chance of losing my Costco's membership and having to bail Dayton's father out of jail.

Not only do I have to worry about the Nutella being moved to a new location when Dayton knows exactly what isle it's in, the shelf and location, and when he sees it's not there, he enters what I call the "point of no return."  Melt down city baby...  I also have to protect my baby from stupid people.  Yes, I said it.  Some people are just too stupid to mind their own bee's wax and not meddle in my affairs.  This is where an autism mom's military precision of executing a grocery shop kicks into over drive.

For those of you with kids not on the autism spectrum, think back to the days when your own child was a toddler.  Ahhh yes...  fun times!  Remember when they'd throw a fit, and you got the "look" from women glancing sideways at you with their nostrils flaring and blowing out fire?  Yeah, I get that A LOT.  I call those women the grocery store snipers.  I whip out my grenade launcher, just in case.  While Dayton may not be able to read their facial expression, I CAN, AND LADY, I SEE YOU!  Take cover, cause I'm gonna blow!

Them snipers get their panties in a tighter knot when Dayton is walking beside the shopping cart in Safeway (since I can't put him in their shopping cart, there's just not enough room for groceries then).  When Dayton didn't hear the sniper say excuse me to him (for him to get out of her way) and neither had I, she actually pushed Dayton out of her way with her shopping cart as he stood there stimming (self stimulating to cope)!  I fired my grenade launcher that day, and pushed her out of my way with my shopping cart without asking her to "excuse me."  She whipped her head around and asked me what my problem was.  So I told her.  "Well I asked him to excuse me and he ignored me!  You should really talk to your child about respect and maybe discipline him and give him a swat on the butt."  I fired my grenade  launcher at her "You clueless twit, my son has autism, what's your excuse?!"  And so I left her standing there with her jaw on the floor.  I picked up Dayton who now is getting vocal and parroting the word "twit" over and over, knowing somehow I was protecting him, but not understanding what I was protecting him from.  His sense of safety broken, I pick him up, put him in the grocery cart and wheeled us out of the store.

God gave us mothers two hands, I need both of mine to maneuver my way around the grocery store and ensure Dayton is where he should be.

Am I proud of my behavior?  Do two wrongs make a right?  No...  But sometimes, I just can't help myself.  Sometimes I'm just tired and don't have the patience for ignorance.  Sometimes I just want to pull my baby and me in a little cocoon and be left alone.  Sometimes...   I turn into GI Jane (without the muscle...  see, I don't like to make others jealous, so I've covered the muscle with a layer or two of adipose tissue).

"In my opinion, we don't devote nearly enough scientific research to finding a cure for jerks." - Calvin & Hobbes


Consider yourselves hugged, and keep the bazooka loaded!  I prefer the grenade launcher, more efficient in it's wake of damage...  but to each their own,

Lou

Sunday, 15 May 2011

Just Like Daddy

I only take credit for the first 9 months. After that, he was exposed to his father.

"Dayton...  Put the hammer down."
"Sweetie Pie, Honey Bunch, there's no way I'm letting you shave yet."
"Muffin...  telling your teachers you have to 'drag your lizard' (Glen's way of saying he needs to use the washroom facilities) is not appropriate."
"Babe, I know daddy torments the cat with my yarn, but you're going to strangle the poor kitty."
"Honey, no, you may not play Call of Duty Black Ops.  I know daddy plays it, but you should not."
"Angel face, yelling, screaming and sticking your middle finger at motorists like daddy is not polite.  Yes, I know they cut mommy off, but still..."
"WHY  ARE YOU HOLDING THE CAT IN ONE HAND AND THE SCISSORS IN THE OTHER?  PUT THE CAT DOWN!!!"

Ah yes, my babe loves his daddy.  He wants to be just like him in every way.  I suppose it could be worse, he could want to wear make up, and it did scare me just a little when he demanded a pedicure with nail polish the last time I went to get my nails done.  I compromised with him and allowed him to soak his feet while in the massage chair, and allowed the beautician to cut his toe nails, but that's where I drew the line!  All the ladies giggled and cooed and thought he was soooo cute...  And there I was biting off my newly polished gel nails.  Money well spent.  Of course, he just had to have a handful of candies on our way out.  Needless to say, the sugar rush took over half way home.

When his sister Charlie-Anne came to visit us for a weekend and wanted a girl's day out at the spa, Dayton wanted to come with us.  He wanted a pedicure AGAIN.  Glen naturally glared at me, as "men don't get pedicures, blah, blah, blah..."  So, once in a while, my babe wants to get a pedicure...  no big deal, right?

For the most part, my babe wants to be just like daddy.  Dayton chose rubber boots that were the same color as daddy's hunting boots, the same camouflage style winter jacket that daddy has when he goes hunting, camouflage flip flops to make daddy jealous, camouflage base ball cap because daddy has one identical to it, etc...  In other words, he wants to be just as red necked as daddy.  Awesome :(

We have a magnetic chore responsibility board nailed to the wall in Dayton's room.  Every time he does a chore, he gets a smiley face magnet.  Each magnet is worth a dollar.  His chores right now are:
1.)  Put your toys away in your toy box
2.)  Put your dirty laundry in the laundry hamper
3.)  Say Please and Thank You (I only allow him one magnet a day for this, as otherwise Dayton would run around all day, just saying "please and thank you, please and thank you, please and thank you..."  He tried that this morning:  "I'd like to go pee, please and thank you.  Mom, give me my magnet."  Like I'm falling for that...
4.)  Feed Jack (his cat)
5.)  Help with indoor chores (I have him vacuum and take out the garbage)
6.)  Put your plate in the sink
7.)  Do your homework (I've finally convinced the school to send some books home.  When they forget (we've just started this last month, so sometimes they forget), I pull out the Pokemon books to read or we pull out the Canadian Grade 1 Curriculum Book (you can get these at scholar's choice, or at Costco's for half the price for every grade; and yes, Dayton is in grade 3, but he's about half way through grade one or so I'm told by his principal)

Dayton gets to cash in his magnets for things he wants:  Pokemon cards, video game time, video games, gum, etc.

So this one day, we're at Blockbusters checking out the videos, and after picking our selection, we go through the maze line.  Of course the maze was made of wire bins full of merchandise.  One of them had a set of ear buds on sale, the kind that wrap around your ear.  Super cool looking things.  I figure they're on sale for $9.00, and I imagine buying them at Best Buy would cost much more, so I thought sure, why not.  I remind Dayton he must earn them (of course I hear a chorus of  "awwwww, do I have to???") by doing his chores, and that he needs to get ten magnets in order to have them (yes, I'm aware I just made an extra magnet, but I'm the mom!  LOL).

In a few days, Mr. Dayton presented me with ten smiley faced magnets.  "I want my ear buds please and thank you, and a new magnet please for saying please and thank you."  The ear buds lasted for all of ten minutes...  I didn't see the scissors.  He comes out of his room wearing one of the ear buds, and the rest had been cut off.  "What?!  What made you do cut your ear buds Dayton?!"
"Oh mom, it's not an ear bud, see how it wraps around my ear just like daddy's?  It's a blue tooth, just like dad's.  I gotta go to work."  He walks away babbling into his "blue tooth."  All of a sudden I hear him say into his "blue tooth":  "and how is my short peckered friend today?"
"Dayton!"
"What?"
"You can't talk like that, not in this house!"
"But daddy does it."
"Not anymore he won't!  Don't ever say those words again!"

We had to empty the tent trailer this weekend, and get ready for camping.  We had some of the stuff out on the patio, and Dayton of course just had to go through one of the buckets, pulling out this red long thing called a "ratchet strap," which is used to hold things down...
"Dayton!  What is that?"
"I don't know, but it's dad's and it's cool."
"You are not supposed to be touching dad's things, put it back, right now!"
"But moooooooooommmm!!!  I'm just like daddy!  You tell me all the time that I'm 'just like your father.'"

Oh good Lord.  Be careful what you tell your children.  It just might bite your right in the you know what.





Consider yourselves hugged,

Lou

Friday, 13 May 2011

Where Do I Come From?

Sex education...  my goodness.  I'm so not ready for this.  It's a delicate discussion even with a "neurotypical child," but not having autism myself (at least not diagnosed by a doctor, but sometimes I wonder...), I'm not sure how to approach this one...  So any suggestions, please, I'm begging you, feel free to share you input!!!  I don't want to blow this and traumatize him either, but it is a valid question which requires an answer.  My dilema?  You see, Dayton and I communicate most effectively through me having to draw pictures for him to "get it," as he thinks in pictures.  This is not an uncommon style of communicating among children with autism, but I just can't draw a picture of this, you know what I mean?

I've got this horror of ending up like the woman in the old joke who was asked by her child where he came from, and after she explained the technical process in a well chosen medical vocabulary, (seeing as this is part of what I have to teach my college students, I can't help but wonder if I'll end up doing the same) the  boy looked at his mom intently and said, "I just wondered, because Mike came form Hartford, Connecticut."

This may be a joke to us, but really, this is exactly how a person on the autism spectrum thinks.  They're literal...

So, when Dayton came to me and asked me... I blew it...  Royally...  and now I need to fix it.  Remember, Dayton may be 9 years old chronologically, but let's not forget his delays, which you can easily say he's 2 years behind.  Emotionally, he's more a of a five to six year old.  I don't think I stood a chance of not blowing it...  I also keep forgetting about Dayton taking things literally...

So Dayton came to me and came out with the question.  "Where was I before I was born?"  I tell him nowhere.  The word nowhere is an abstract word for most children on the autism spectrum, and so I could see he was getting frustrated trying to understand, so quickly I say, "well actually babe, you've always been in my heart, and always will be, my love."  His face turned less frustrated, but still frustrated...  OK, I'm thinking I'm making progress, but then he asks me "where am I now?"  "Babe, you're right here, standing right beside me."

He seemed to be getting a wee bit more confused...  I didn't know what to do, I can't read his thoughts, and as a mom, I want to get the right band aid for his auwee..  Finally, finally he spins on his heel to look at me, and says with a straight, determined face...  "I like being beside you, but let's tell the doctor not to open your chest to put me back in your heart.  Deal?"

Holly crap.  Literal thinking.  It took my breath away.  See, it's not like this is a constant with Dayton.  Some days he's like a regular kid, and then others...  It's like he's menstruating or something...  Or maybe it's me, some days more aware than others...  If it was constant, I'd probably not forget the literal thinking, but it's just not that simple...  

Hey, it got me off the hook for now!  I was able to distract him off his true question.  So yeah, I took the deal!!!

Again, any ideas, I'm all ears!!!



Consider yourselves hugged,


Lou

Wednesday, 11 May 2011

Physically Restrained And Suspended Over Eating Food?! Are You For Real?!

Oy Vey.  I'm mad.  Angry.  Sad.  Angry.  Confused.  Angry.  Discouraged.  Angry.  Conflicted.  Have I mentioned that I'm angry?  'Cause I'm pretty p!553@.  I literally needed some time alone and had to tell Dayton to go to his room until I cooled off.  It took an hour for me to calm down enough to feel comfortable that I wouldn't give Dayton any inappropriate "bad language" for him to pull out of his tool box of magic words used to shock or upset people.  No because I'm angry at him, but because I'm just plain mad!

I bet you're wondering what happened yesterday to get my knickers so terribly twisted...  Well, let us not keep you in suspense...  Put your seat belt on, it's going to be a fast and furious ride!

The division's behavior therapist came for a visit.  She came for a visit last week too, after I insisted the principal call the division's behavior team, even though the school ensured me that they had everything "under control."  Perhaps I should have been a little more specific and requested the school contact an "educated," or "real" behavior therapist," you know, the kind that actually went to University AND has at least a wee bit of common sense.  I have to admit, the behavior therapist looked the part, and seemed intelligent, but what happened was very much the contrary to smart.  I hate to call people stupid, but I suppose if the shoe fits...

Dayton was hungry, and after recess was "caught" eating.  The guidance counselor asked Dayton to put his food away, and Dayton told her he was still hungry.  When she asked him why he didn't eat his snack during recess, he told her that there wasn't enough time.  The "behavior therapist" steps in and gives Dayton two options...  "Pick one snack and either put the rest back in your lunch box yourself or we can help you put the rest away.  Either way, you are to pick one snack, and the rest will end up in your lunch box."   (you've seen pictures of my son, right?  He's sooooo skinny, I'm thinking let the kid eat!!!  For the love of God, let him eat!  What's the freaking problem of letting him eat?  I don't get it!!!  But what do I know, I'm just a mom).

Dayton pleaded with the teachers to let him eat, and the answer was still "no."  He threw a fit.  He got restrained by the behavior therapist, and Dayton struggling to get free, bit her in the arm, drawing blood.  By the time I got there, there was an angry, swollen bruise surrounding his little teeth marks...  How could my baby inflict such damage to another human being?  This is so unlike him, I've never had Dayton hurt me at home, or curse at me for that matter...  I'm confused...  Mind you, if someone laid their hands on me to restrain me, I'd fight and bite to get free of them too...  And why are we fighting over FOOD?  Seriously?  There's much more disturbing behavior to work on, let's not focus on how much food my little one feels he needs to eat.  Save the fight for something of more value.  Choose your battles wisely. 

So I ask the grand pupa why on earth she wouldn't let him eat.  "Well, recess was over.  If we allowed Dayton to eat, then we have to allow the rest of the children to eat."
"So let me get this straight.  If my child was diabetic, and he needed to eat after testing his blood which showed he had low blood sugar, you wouldn't let him eat because it would encourage the rest of the class to do the same?"
"That is an unfair question.  Dayton does not have diabetes..."
"You're right, he has autism.  I've emailed the school telling them that Dayton eats when stressed.  Also, his medications mess with his appetite, and I was assured that he would be allowed to eat when he felt he needed to."  (You can view the full email in my post titled "A Froot Loop In A World Full Of Cheerios")  here's the part of the email where I mention Dayton's food issues:

"On weekends, Dayton most often grazes.  I find he eats more because I don't need to give him the second Biphentin as necessary at school.  One of Biphentin's side effects is loss of appetite. 

There are times when Dayton is uncomfortable, and sometimes he copes with his discomfort by eating.  He takes after me in that respect, and thankfully has his father's metabolism.
"

Could I have made Dayton's food issues any clearer?

Behavior therapist:  "Lou, Dayton was not hungry.  He was trying to be in control."
"How do you know he was lying about being hungry?  And how could he use food as control against you?  Did you want some and he didn't want to share?"
"Because he didn't want to do work."
"What work did you ask him to do?"
"We didn't.  It was right after recess."
"Did Dayton know what kind of work he would have to produce after recess?"
"No."
"Well, if you didn't ask him to do work, than how can you say that he was avoiding work by pretending to be hungry and using his food to be in control of you guys?"
"It was obvious..."
"Did you know that Dayton is on medication which alters his appetite?"
"No..."
"Don't you think you should have had that information before making a judgement on Dayton's behavior?"
"Well...  either way, your child should not have attacked me."
"My child has a name.  His name is DAYTON.  And if you disrespect him to his face the way you're talking to me about him right now, I wouldn't be surprised if he wanted to disrespect you back.  Understand this:  Dayton is my son, he is my blood, and he is the air I breathe.  I will ALWAYS take HIS side, and NEVER yours.  I don't care what your problem with Dayton is, but you need to get over it.  All I need to know is how long you're suspending him, again."

The principal:  "Well you know Lou, that I don't believe suspensions teach students anything..."
"But you're still going to suspend him."
"Yes, I need to teach the rest of the students that they can not behave this way."
"But it's not really teaching them anything if suspensions don't work, is it?"
"I still need to make a point."
"Yes, make an example of my babe...  got it.  We can't have children eating at their whim!  So when is he suspended till?"
"Thursday."
"Excellent.  Can I please have the work Dayton will be missing during his suspension for him to do at home?"
"Well...  we don't have that ready yet."
"I can wait.  It's not like I have to rush to work, I'm on stress leave, remember?  I'm free until June 11th.  Where should we wait?"
"I just don't think it's a good idea..."
"... for him to work at home?  Never mind.  I'll find something for him to do.  Thanks for your time."

As I took Dayton's hand to walk out to my car, the guidance counselor stopped me "you know Lou, you should write a book."
"Excuse me???"
"You're just so good with words, I think you should write a book..."
"Thanks for your vote of confidence.  We must be going home now..."  I walk away thinking what the hell?  Is she being sarcastic or is she trying to complement me to simmer my anger?  Either way...  I'm out of here.  This place is just too toxic for me and my kind.  At this point, nothing she can say is going to give me that warm, fuzzy, loving feeling about her or the school and its division. 

Yes, I'm sure she'd be the first in line to buy my book, then turn around and sue me.


So...  I'm mad.  Angry.  Sad.  Angry.  Confused.  Angry.  Discouraged.  Angry.  Conflicted.  And a little disgusted.  Did I mention I was angry?  Yet again, my son is failed by teachers' ignorance and lack of common sense.  I'm tired, and I need a break from all of this negativity.  Perhaps my babe's suspension will give us the break I crave.  I'm thinking we're going to eat ALL DAY LONG.  Take that School Division 2! 

And here I was worried about what I would write about this week...  Leave it to Dayton to be my muse. My little man.  My inspiration. 


Consider yourselves hugged,

Lou

Tuesday, 10 May 2011

Ranting 103

First I do apologize for my lack of blogs. I was on a roll then had to place it on the back burner during a HELL like move. Don't worry folks I'm back, and trust me I have more questions and concerns than ever. Hmm where shall I start on this gloomy Tuesday,

Well although most are already aware that I don't agree with the current system, and clearly I'm outspoken and don't hold back. I have many concerns with this government. Now with the election over and hopefully not having to do another one for a couple years this was a touchy subject. Normally I swing Liberal. However when it comes to my family and children's futures I do agree with the conservative party. Now if we want to be totally honest and lay everything on the table. I don't think any party should have the power to say whether a person can or can't marry another person. I also don't think they should look at your sexual preference when deciding if you can adopt. I know a lot of same sex parents that honestly are doing a better job than some of the "straight" families. Their divorce rate is lower than hetero marriages, ect ect. However, In other provinces that are Conservative lead they have "School of Choice", "Chartered" and many other options. So with that being said, it was clear that in this PROVINCE Conservative won leaving 1 Liberal and 2 NDP running. Does that mean we might actually see a change? In all fairness and reality most likely not. The biggest problem is education. People who aren't dealing with it on a day to day base have no clue the problems that parents of special need children go through. Although we have a inclusion policy and there are rules and guidelines that are suppose to be met, they aren't. Somehow school officials have found loop holes and the general public is left in the dark.

As many are aware my son was in a rural school and got NOTHING. Even when switching schools the new school was SHOCKED that he has had nothing. NO SPEECH, NO OT, NO EA'S nothing. Even though both the specialist and doctor clearly stated. We had St Amant step in and give the school tips and ideas. Everything was shut down. Now we've been at our new locations for "7 school days" and it's amazing the difference. First day of daycare he has a 1-1 worker with him at all times, there is a general EA in the class, as well as his EA who works with him and another child. He is getting BT and ST daily. Not long period but close to 20 minutes for each therapy. So you ask what's the problem? Honest to god we live 11 minutes by car from his old school. We are one division over, we're separated by a highway. Still in the same province yet totally different. Anyone pick up on the problem yet? in the province of Manitoba there is a "Inclusion Policy", standard policies and bi-laws that ALL schools are meant to follow. No school or division should be any different than another. Yet by driving 11 minutes we went from hell to what appears to be heaven(might still be a lil cloudy from the drive..lol). Here's the other funny part. We're now in a LARGER school, with almost 4times the students as his last, a division that has 3 times as many schools as the last division so how is it that a smaller school, smaller classes weren't able to help but large one can?

Now I'm not holding my breath that things will remain perfect like I said I might still be seeing cloud from the drive, but the change has had a POSITIVE impact on my child. I'm not saying every parent should pack up and move to Pembina Trails as believe me I've had problems with them in the past, but for a province that is suppose to have policies that cover the entire province, why the difference? Parents shouldn't have to move. We have to deal with enough life changes, changing postal codes really shouldn't be one that is thrown on the list.

As you've read before one big problem is staff isn't trained. Why you ask? Good question. From researching between myself and my beautiful friend Lou we've discovered a lot of things as per training. Here's a couple. You need to be trained to become a doctor, and the province will even help pay for your school if you agree to stay here. Certain ethnic backgrounds are also given a break when it comes to schooling. If you go the childcare field the province will assist you in your tuition and schooling as childcare is a major shortage here. Want to do a trade? No problem they will help with that as well. Here's a funny one. If your a hooker,(Oh yes Lou I'm going there) they will pay for you to become a Social Worker and give you a job with a Government Agency once you've completed your training. Well on a side note I have always wanted to be a social worker and help teens and families however the 4+years of schooling at high costs per year have made me place that on a back burner, but if I decide to sell myself on the corner of Ellice I can go for free? Really sign me up. So let's recap a bit to catch everyone up to the point. Doctors=ok, trade=ok, hookers=ok, People who hold our child's future in their hands=nothing. Yes that's right. There is NO incentive for teachers, EA's, Speech, OT, NOTHING. hmmm also are you aware most EAs have NO pension, NO benefits and NO RRSP through work? Yup the dedicate their lives to helping our children and come old age, they are screwed. Not to mention if you care about the children you are helping and you want to take some extra courses so your PROPERLY TRAINED for these kids it comes out of your POCKET. Let's face it, EAs and Teachers aren't raking in the 6 figure salaries like the superintendents yet they are suppose to pay out of pocket to be trained to do the job that they are hired for. When I asked our previous Resource teacher why staff weren't trained she stated "there's too many different disabilities, and it would take too much time and too much money." Seriously? So the province wants us parents to place our children in the public school system, have tax payers pay for it, yet they aren't going to have trained professionals to teach our children? Would you take your dyeing dog to a hairdresser because a trained VET would be too much? How about your aunt suffering from Cancer, why not take her to McDonald's? I know that's a little extreme but that's sadly the Manitoba Way.

So until next time, trust me there will be a next time take care, and thank you Lou for allowing me to vent my feelings

Wendy

Winnipeg's Children's Coalition - Help For Our Children With Autism?

The first time I published this post, I had 2 extremely negative emails from the person I spoke with at the Children's Coalition, telling me that I have no respect for privacy or regard for the "process."  I took the post off the blog, apologized to her, told her I am willing to work with her, but sadly she sent me another negative email, telling me she will not work with me as I mentioned the Children's Coalition (without mentioning her name) on facebook, and how disappointed I am with her unprofessional behavior of sending me the "hate emails."  I received her third and final email as I was in the emergency room with my son, the right side of his face covered in blood while playing at school...  A complete nightmare.  I was so angry, I unfortunately became quite unprofessional myself, telling her off...  I'm not proud of my words to her, but she really caught me at a super bad time...  Here's her third and final email (so she promises):

I cannot work with you.  Too bad but you obviously have no respect for me and the work that I do. 



This is what was written on the Autism Winnipeg Facebook page:

Ljubica Lovrin Mary, I think that the school staff is not ABLE. I'm not opposed to inclusion, let me make that clear, but I think we missed a fundamental step towards inclusion, which is autism training for the schools. I've been emailing the premier, calling my MLA, and both forwarded me to MB education, who as you've said may make suggestions, but the schools do not have to apply these changes. I've even contacted the Children's Coalition group, blogged about my experience and got a hate mail from the woman I spoke to, actually two hate emails... Rather disturbing, her claiming I have no respect for "privacy" because I posted her contact info, which she said in the same sentence is publicly available... I ended up taking the post off the blog... She's under the impression Dayton's issues in the education system is an isolated incident?! No body seems concerned about autism training in the education system, and I have a major problem with that. How on earth are they supposed to teach our children and keep them safe when they don't seem to understand that while a child with a form of autism can speak, may also have sensory issues, verbal expression issues, etc... It blows my mind!!! I'm just tired of being sent on all these wild goose chases! I've actually contacted CJOB and they're interested in interviewing me, after the flood crisis. Wendy Thede, a member of this group is willing to come with me to share her experiences with her son's education experience. It's sad that each parent has to fight for their child's education alone. I think it's time we banded together and spoke as one voice, loud and clear: Autism training is a must for school staff!!! It not only empowers the child, but the teachers as well. Thing would run much smoother with some support and understanding, instead of school staff believing at the root of a child's behavior is bad parenting.


And then my not so classy response back to her:

No problem! I have bigger and better problems to deal with. Your wonderful school system has landed my son in the emergency room, that's where I am right now! The whole right side of his face is covered in blood, thanks to the wonderfully trained autism staff our government has provided us with. Your delusional thought of our system is DEAD WRONG lady! I have absolutely no respect for someone who lies about how much they care about our children. You can be assured if Dayton loses the sight of his right eye, I will be contacting a lawyer and tell the world how much you've helped me! Congratulations! Your work has definitely changed our life! When I get home, I will be contacting the media. I will not be silenced!

Sent from my BlackBerry® smartphone on the MTS High Speed Mobility Network

Like I said, I'm not proud of myself.  But there's only so much a mom can take in the middle of an emergency room...  I pride myself on being honest about my life to all of you, so I return the post to you...  So here's the original post, minus the "woman's" name.  If you really want to know who I spoke with, shoot me an email.


In talking to Brent Epp at Manitoba Education, and telling him how frustrating it is for me as a parent not to have choices when it comes to Dayton's education, he asked me if I would be willing to speak to the Children's Coalition.  He thought they may be helpful in my plight for children on the autism spectrum to have educators skilled to successfully include them in the classroom.  "Sure, I'll talk to them.  What have I got to lose?"

Here's our email correspondence before our meeting yesterday morning:

Hi Lou;  I received a message from Brent Epp
I trust that this provides you with a bit of a background and welcome your questions if you would like to know more.  Bye for now,  ---- The Children’s Coalition


Hi----,


I'm not sure we view inclusion in the same fashion...  Let me clarify my view.


I love the "theory" of inclusion and fully believe that my son Dayton can be integrated or mainstreamed in public school.  However...  It seems the schools either choose not to genuinely include our children or they don't have the skills to include them.  I've been fighting an up hill battle for the last 4 years, and frankly, I'm tired of it. 


My son has PDD-NOS, so we're talking high functioning autism.  He's also been diagnosed with ADHD, ODD and global delays.  He spends more time in the hallway than he does in the classroom. 


I think the two of us have spoken last year if I'm not mistaken...


Feel free to give me a call, and we can discuss further.  I'm very interested in making inclusion work, providing that it is genuine inclusion.




Thanks,


Lou


Hi Lou;  The situation for you son does not sound very appropriate or inclusive, as you say.  Have you spoken with the student services administrator for your school division to discuss this?  I might also suggest getting in touch with Joanna Blais at Manitoba Education.  You have already spoken with Brent Epp so perhaps you have already gone this route.  Which school and school division are you in?  I would welcome the opportunity for a discussion but prefer face to face if that is OK with you.  Let me know if your schedule would permit this.  Thanks,----


I am on medical leave due to developing irritable bowel syndrome due to the stress from experiencing our wonderful school system. I am available most of the time, with the exception of this Friday morning and next Monday afternoon. Give me a call and we can arrange an appointment to see each other.


Lou
Sent from my BlackBerry® smartphone on the MTS High Speed Mobility Network



Deja vu...been there and done that.  This too shall pass...a good mantra to keep in mind as you go along.  How does Monday at 10 am sound?  We could meet at 120 Maryland in the CL-MB office (main floor opposite the board room). ----


That sounds great -----. I will see you at 10 am Monday April 9th.

I look forward to seeing you then,

Lou

Sent from my BlackBerry® smartphone on the MTS High Speed Mobility Network


I should have known it wasn't going to be this easy...
"Hi Lou?  This is %$^&$ school calling.  Dayton doesn't seem to be feeling well this morning."
"All right, I will be there in 5 minutes..."

Hi ----,

I have to pick up Dayton from school, so I may run a little late... Hope you get the message before ten :(

Lou

Sent from my BlackBerry® smartphone on the MTS High Speed Mobility Network



I wish she had given me her phone number!!!  Maybe Marlene Gregory from Manitoba Education warned her before she made the first email contact.  Would have been super helpful for me to have her number at this time...  Dayton was sick, and expected me to pick him up and take him home.  Finding out we were on our way to a meeting sent him into a melt down, which fortunately I calmed down before entering her office.  Non the less, it would have been nice to be able to have the option to reschedule...



Here's her email to me after our "meeting:"

Potoula Locken from the St. James School Division and really have a heart to heart on how things have been going with Dayton, what you concerns are and what you would like to see for him in the future.  Be specific re: the numerous suspensions, the incident report, his perceived threatening behaviour.  Explain your perceptions of how the school is dealing with Dayton’s personality and how you are able to deal with it at home.  Bring along the report from MATC with their suggested strategies.  Then ask Potoula how St. James supports students with needs like Dayton’s.  Is there a behavioural support team who can consult with his school, teachers, principal?  What kind of supports are there within the school division for students with autism and global development delay.
In short, you want to work with her to figure out what appropriate education looks like for Dayton and where that can happen. 
It would probably help if you wrote down your comments and questions to keep the conversation focussed so that you leave with answers as opposed to more questions.  If you would like someone to come along, I would be willing, or you might consider a close friend, or someone who knows Dayton and has worked effectively with him. 
This is really a fact-finding mission for you and should help you get a clearer idea of how Dayton can be supported to have a successful educational experience at school.
Let me know how things go. ----

Yes, me thinks the lady didn't hear a word I said...  She must not have heard me when I told her how Dayton's been to three different school divisions and that the problem is staff understanding or even acknowledging that autism is a neurological disorder, not a choice.  She also seem to have missed my point of how this isn't just about Dayton, but all of our children!!!  Now, I understand that people have worked very, very hard in making "inclusion" a policy in this province in 2004/2005.  I get it.  We don't want go 'regress' to the way things used to be where our children were segregated.  I totally get it.  Who wants that for their child?  But I think we've missed an enormous step here...  the training of teachers, educational assistants, guidance counselors, resource teachers and principals in HOW TO INCLUDE  OUR KIDDOS!!!  Successful inclusion is one in where the staff understand the difference between a child being difficult or misbehaving and a child having sensory issues and is just not able to cope.  Also, common sense would be a nice touch.  We need educating staff with COMMON SENSE!!! 

It almost seems as though I may have to start a 'grass roots movement' so to speak.  Apparently my voice is just not loud enough.  I ruffle feathers everywhere I go, and seem to piss people off left, right and center, but it's just not enough!  The people who seem to understand me when I say that at the root of our education problem for our kiddos is under qualified staff get seriously offended and therefore won't do anything about it.  These people I speak of is the school division of course.  And then there's the ones who could potentially do something (like the premier's office), but freaking well miss the boat, possibly because I'm one lone parent, who will get tired of the fight and just disappear as long as 'we' continue ignoring her and pretend we misunderstand her.  They understand me all right, they just choose to ignore one lone parent's voice.  Manitoba parents, I think I may be needing your help.  I can't seem to do this alone, so if you feel your child is not being included or taught or cared for, discriminated against, is not understood, etc. email me at autism.diva.help@gmail.com. 

My view is whatever option works best for our children is the direction to go.  Contrary to some belief, I am not against inclusion, I just want genuine inclusion, not cosmetic.  With your email, include your views on your child's education.  We don't all have to agree on everything, but I see over 2,700 views on this blog since I started it on February 28th, so I'm just gonna say there's enough of you out there that are unhappy with your child's treatment or education.  Let's start our own coalition!  A coalition where a parent has a CHOICE in their children`s education.  Where division boarders are not an issue, and we can support our children`s education with staff that is qualified to include them in our public schools.  Or perhaps we need a school designed for our children?  I'm not sure what the answer is, but I WOULD APPRECIATE SOME FEED BACK.  Please email me and let me know your thoughts, and also email me with things you would like to be talked about on this blog.  If you would like to share a story, email it to me and I'll be more than happy to post them on the blog.

I would like to extend this invitation not just to parents, but to educational assistants out there, teachers, grandparents, friends of parents who are raising a child with autism, or other diagnoses such as ADHD, global delays, SPD, etc.  Come and join me on this crazy road trip, one that begins with a drive to the schools, school divisions and government and ends with a detour through legislation to make a change.  This adventure will take you deep into the beautiful minds of our children and deposit you safely back at your original destination.  Please remember to fasten your seat belt and hold on because otherwise you might get thrown into a serious state - and that's seldom a fun place to be.  Advocate with me!  In your email, include an organizational name you'd like for us to be known as.  LET'S DO THIS!

Even though the Children's Coalition information is PUBLICLY AVAILABLE, here's her information to shorten your search.


Community Living - Manitoba
#6-120 Maryland Street
Winnipeg, MB
R3G 1L1
Phone:  786-1607

organization's email:  aclmb@alcmb.ca
website:  www.aclmb.ca


Consider yourselves hugged,

Lou