Monday 16 December 2013

An Evolution In Autism Diagnosis: Lets Bully, Manhandle And Threaten Parents Of Children On The Autism Spectrum

I have struggled with this story for eight long months.  The father approached me for help in his situation, and to be honest, I was hesitant in doing so because of what was happening in my own personal life.  Being accused of considering myself an expert in autism did not help, and I had neglected to continue my work on Autism Diva Help as a result of my personal life and accusations.  But this story really needs to come out to light.  Our children on the autism spectrum need a voice, and while I am NOT an autism expert, I have been wanting to advocate for our children for a very long time.  I also want to bring awareness to a society that likes to brush anything not "normal" under the rug.  You know, pretend that things that aren't pretty just don't exist.  That is why I created Autism Diva Help in the first place.

I also wanted to make sure I had all the facts straight before publishing this post.

I am grateful to be living in the Seven Oaks School Division.  The educators are actually educated and want to educate themselves further to better understand what a child on the autism spectrum may be experiencing. I had the pleasure of seeing some Dayton and Amber's school's staff at the Temple Grandin appearance at the end of October. Dayton has attended two schools now in this division, and doing extremely well.  Perhaps a part of his success can be attributed to the additional work we do at home with him, as well as his age.  He is now a "tween," turning twelve in February.  Dayton has more understanding and experience to fall on as well, giving him more "tools" in his "tool box," enabling him to mainstream more successfully.

Not all parents can say the same in their child's education.  As you know, Dayton and I have been "there" before.

I've had on and off communication with a father of two young boys attending elementary schools for the past year and a half.  He's joined our Autism Winnipeg PACE facebook page networking with other parents and looking for support.  Last April, I finally got to meet him in person with Mike, and he told us his story over a hot cup of Tim Horton's coffee.

Here is his story:

This father has two children, both boys, actually they are twins.  One has ADHD and the other is on the autism spectrum disorder.  While the child with ADHD and anxiety issues had an educational assistant since grade one, the child with autism who is in more need of an EA did not have one until shortly before April, even though everyone agreed he had the most aggressive issues in school.  The little guy's attention and behavior interfering with learning came in the afternoon, and the school's answer was to keep him in the hallway rather than give him a much needed movement brake.  He finally got level two funding.  In April, the boys were nine and in grade four.

These issues came to an all time high in April, ending with the principal calling the police.  Yup, another classic educator not educated or perhaps discriminating against a young elementary age child with developmental disabilities.

It has been apparent to the father that an elementary school in Pembina Trails School Division has had a history of "getting rid of" less than desirable children.  But this school was in the family's catchment area, and we know how school divisions like their catchment areas.  Just try to get your child transferred to another school, I dare you.  Then email me back with the outcome.

During the course of a few years, this elementary school had used CFS as a weapon against the parents, because (yes, here comes my all famous sarcasm) as educational professionals, it is common knowledge that autism is caused by the parents, it is a "discipline" issue.  Boy, I'm so glad we live in 2013, not in the mid 1950's.  You remember the cause of autism back then was "refrigerator mothers."  As you can see, we've evolved in discovering the true cause of autism, haven't we?

Anyhow, the principal called CFS numerous times, and at one time went as far as trying to have the young lad put into residential care.  In April, due to an autistic meltdown, she decided the best approach was to call the police, without telling the police that the little guy had autism and focused on the real problem (dripping with sarcasm):  the parents, whom I might add were not in the school.  She waited until after the police came to the school and the child to calm himself down before even calling the parents.  This incident happened on a Friday.  I mention this because that same week on Monday prior to her calling the police, and Thursday, the day before calling the police, the principal had called the father complaining about his son's behavior and actually told him that she was tired of calling him and threatened to call the police instead 'next time.'  Threats of police involvement were there for a few weeks before this fateful Friday.

I've been through many IEP meetings, and none of them had mentioned calling the police in the behavior plan.  It's always call the parents.  In my biological son's case in the past, it had always read call mother, for just about every issue known to man.  Calling the police on an elementary school child is 1) ridiculous and 2) a way to show the parents who's in charge.

As soon as the father opened the door to the school, he was greeted by the head police woman in charge, who pointed towards the principal's office.  The principal was waiting for the father along with four more police officers.  Ahem...  A little overkill, no?  Even Dayton (7 years old at the time), who had threatened to shoot his principal in the face had two police officers waiting for me outside of the school.

The principal began to tell her story, admitting that she had placed her hands on the little boy's head and pushed him backwards into a closet several times...  Ummm...  HELLOOOOO!  In what moment of insanity does someone decide shoving another human being by the head into a closet is 1) appropriate and 2) comforting???  You don't need to have autism to feel completely ridiculed and as though you are worthless when someone does that to you, do you?  Furthermore, just a week prior to this incident, a meeting was held with the principal and the boy's psychiatrist and parents of course, in which the principal was explained to by the psychiatrist that the little boy should not be forced to be in a small space by himself, as this would not help in any way to settle the child, in fact, it would cause extreme anxiety and exacerbate the behavior further.  I'm sorry, but you really don't need to be a psychiatrist to figure that one out.  It's not rocket science.  The father, mortified, simply asked a single question:  "Did you think that was safe?"

The father tells me that the police immediately came to the principal's rescue.  The police threatened to arrest him and bar him from the school, which quickly made the father choke up and come to the realization that the police were not there to be helpful to his child, they were there to sustain the authority of the principal.  In the principal's own words:  "We've wasted enough time on this 'proactive stuff,' we're moving on to 're-active' now.  Let's go back and talk restraint again."

The father was speechless.  He tried to walk away towards where his son was drawing, and the lead police officer grabbed the father by the arm and said that she would escort him.  The father, concerned about his child seeing him escorted by a police officer, pulled his arm away from the woman, explaining as politely as he possibly could in this situation that he had picked up his son many times and new the way to go, but it didn't matter.  She would escort him, end of discussion. The police and principal further stressed the family by escorting the family with the boys out of the school at the end of the day when all children were being dismissed, with the police threatening the father that they could arrest him and ban him from the school, because the father's body language was 'intimidating.'  This was all done in front of the children.

Needless to say, the parents decided that this school was no longer an option for their twin boys.  They have moved to another school, where some of the toxic brew seemed to have followed them at first, but now that the school staff have gotten to know the family and the boys, they're all doing much better.  This new school is much better equipped to help children on the autism spectrum, having two quiet rooms and a sensory room, whereas the old school had one quiet room, a windowless supply closet converted to be a quiet room. The principal is more informed and aware of autism and acknowledges that autism is not a "discipline" issue, it is a developmental disability.  She has full confidence in the parents and sees that they only want what is best for their children.

The boys are now ten years old and in grade five.  As of last week, both boys now have an autism spectrum disorder diagnosis.

Is there closure for this family?  Did I have closure with the incidents of physical and mental abuse that happened to Dayton in our school system?  I don't think I'll ever forget what happened to my son, or the discrimination against my family.  I don't think this father will forget so easily either.  It is a pain that leaves scars no one else can see, but I assure you, they are there. With time and a good school and fantastic teachers who care, the pain slowly dissolves, and we begin to trust humanity again.  I've come to the point of peace with my children's diagnoses, yes they have more than one diagnosis, with the exception of my youngest two.  Four out of six children have more than one diagnosis and the fifth has the one diagnosis of ADHD.  My youngest babe is neurotypical.  We have high expectations of him, just don't tell him yet.




Consider yourselves hugged, especially those of you fighting for your children's and your own rights as the father in this story...

Lou

Friday 29 November 2013

Feisty And Non Compliant - Can I Get A Behavior Plan Over Here???

Ah yes, t'is the season for IEP meetings.  Quick pop quiz...  What's an IEP meeting?  Come on, you can do it!  That's right, it's the individual education plan meeting.  All parents with special needs children get to have those twice a year.

Did you know there is a sales market geared at IEP's?  I'm serious.  Here's a couple of links for you to check out:
http://www.zazzle.ca/no_crying_in_iep_meetings_aprons-154740917622695277

This one is a little scary, but here you go:  http://www.beautifulmindsinc.com/video-right

http://hooverlaw.com/wordpress/?p=74

http://expertbeacon.com/successful-iep-meeting-requires-effective-parent-participation/#.UpltJMSkpRo

Love this picture I recently found about IEP's



If you've checked these out, you can understand why most parents come to these meetings prepared for battle.  We know what's waiting for us:  a cold, impersonal boardroom kind of place, with the school team on one side of the table, usually consisting of the educational assistant, teacher, principal, guidance counsellor and sometimes, if you're really lucky, the speech and language pathologist, physiotherapist and the special needs coordinator from the school division.  All these people are sitting at a table, together, right across from you and whomever you're lucky enough to have talked into coming to the meeting with you.  If you go alone, you sit alone.  It kind of feels like you're sitting rather than standing in front of a firing squad...   The feeling of judgement day is all around you.  The people across the table from you look down at you.  Uncomfortable?  Nooo...  A root canal is uncomfortable; this is a whole new level of discomfort my friend.  While the whole table agrees that there are delays in speech, language & communication, play and learning, no one seems to know how to help the child mainstream into the classroom in a way where he or she can learn and be a contributing member of the class.  So, since the self proclaimed professionals don't know how to help your child, they assure you that they are doing everything they humanly can and that you, as a parent... well... you  suck.  It is a discipline issue, that needs to be addressed at home, even though the behaviour generally only takes place at school.  So, the professionals now need to draft a behaviour plan, which in a nut shell, tells the parent 1) how to parent and 2) typically says that you will come and pick up your child early from school when there's a meltdown.

In the past, rather than go to these meetings alone, I called my CSS worker to come with me as well as Dayton's behavioural specialist.  Finally, I had asked a CFS worker to come join me in my fight for Dayton's rights at his school, as the three of us alone could not seem to get the school to understand that Dayton had a pervasive developmental disorder, along with ADHD, GDD and ODD, all contributing to how he relates with others, learns and understands the world in general to be.

This year is different.

We're in a new school division, and I am free to name it for you.  Seven Oaks School Division.

I prepared for the IEP meeting dressed to the hilt, red nails and all, ready to fight for my children and their rights.  Dayton's IEP came first.

There was no boardroom.  There was a small desk, three chairs, Dayton's guidance counsellor and his educational assistant, Mike and myself.  Even numbers...

"Dayton's had an amazing start to the new school year.  We're so impressed with how he's adjusted and how he's wanting to learn.  In fact, I've filed the negative notes from his past school in a different filing system, away from others, for my eyes only, as they do not describe the boy we have the pleasure of working with today..." said Dayton's guidance counsellor.  "We're actually shocked at how well he is reading, we weren't expecting him to read..."

Wow...  I sat on my hands, shamefully hiding my red nails.

I got to sit and listen to Dayton's educational assistant tell us how well Dayton works with her, and how yes, he does need constant guidance and supervision, as without her present, he figures he doesn't have to work, but still...  My baby is learning!!!  He's working hard!!!  No meltdowns as the staff nip it in the butt and are proactive!!!  They've gotten to know him and see trouble coming before it happens, stop it, and move on!  I left the meeting SMILING!

Next stop:  Amber's IEP meeting.

Friends, I was stunned.  As I walked into the room, we had a few more people on the other side of the table then we had at Dayton's IEP meeting:  Amber's teacher, her educational assistant, the speech & language pathologist, and someone from the school division.  On the table in front of us, they had Tim Horton's coffee and Timbits waiting for us!!!  Seriously!  No joke, this is a true story!  I've never been served anything during an IEP meeting other than "your son is feisty and non compliant, here's his IEP and behaviour plan, fix him, yourself and his father, you're wrong, we're right, you suck, now get out."  In fact, his old principal three years ago tried to tell me my son was a psychopath, etc...

I was in for another surprise.  The school staff sitting in front of Mike and myself were genuinely concerned about Amber and our took our fears of Amber's regression seriously.  They too noticed that she has been regressing, and had questions for us about how things were going at home, and what they could do to (wait for it, you're not going to believe it because I nearly fell off my chair when I heard them...) HELP!  The women sitting in front of us wanted to know how to help Amber!  They didn't criticize our parenting, they didn't blame us for her disability or accuse us of not disciplining our daughter.  They wanted to support us and praised us for everything we do for our children!

I quietly and as discreetly as I could, began to chip away at my nail polish under the table.

There is a reason the rear view mirror is very small in comparison to the huge windshield in front of me.  Where my children are headed is far more important than what we've left behind.  This school gets it.  And I am humbly grateful.

I left the school smiling so hard, my face hurt.  I've never left an IEP smiling before.  It always ended in tears and self loathing.



Consider yourselves hugged, especially those of you waiting for your turn in the dreaded IEP seat,

Lou

Thursday 24 October 2013

Project Annual World Autism Awareness Walk (Our Second Year)

PACE (Parents Of Autistic Children Everywhere) has grown in the last year.  There are now136 members to date, with 5 administrators:  Mike Wilwand, Arlene Reid, Jacqueline Mason, our resident sage Anne Fountain and of course, your's truly, The Diva.

We've learned from our first World Autism Awareness Walk last April.  We've heard people's suggestions and are working hard at coming up with a better plan.  We want to make April 2nd 2014 a moment that brings a little something to your life.

As great as our first annual walk was, we kind of boo-booed on one small detail...  how to get us back to our vehicles...  OOOOPPPSSS...  We've addressed that issue for this year.  I can't give you all the details yet, but what I can tell you is that from now on, you won't have to do the walk twice.  Sorry about that.  I really, really am.  But even with that small boo-boo, you gotta admit, overall, we had a great walk.  I loved the pictures our photographer Anthony Schellenberg took of us.  Again, if you're looking for a professional photographer, please check out Anthony's site at:  http://www.anthonymarkphotography.net/.  If you want a patient photographer who knows his stuff, you need to be checking in with Anthony soon.  The holidays are coming, so I'm going to bet he's going to be booked solid fairly quickly.

If you didn't come to the walk last April, I really hope you make it out this spring.  If you did walk, who did you walk for?

Being around children with autism has changed my life in a way only the sweet innocence of someone with autism can.  Autism has changed my life...  I am twice the woman I used to be because of it.  I've had to change my way of thinking to understand my children, think outside the box.  It's not an easy thing to do, but I learn something new every day to help me along.  I think the greatest obstacle that any person with autism has to overcome is other people telling them what they are and are not capable of doing.  My children know that I am one person that they will not have that challenge with.  Bill Gates, Thomas Jefferson, Thomas Edison, Beethoven, Emily Dickinson, Mark Twain, Mozart, Einstein, Van Gogh...  What would our society look like without these brilliant minds?  And they HAD AUTISM!!!  This is why my children will never have to battle with me as to what they are capable of, because of these people, I will always PUSH my children to do their best in everything they do in life.

That is why I walk.

There are other children who are much more severely affected with autism than mine, and I know a few of them.  They may not be the next Einstein.  I know that people think they are less capable, less knowledgeable, less, less, less and less.   I walk for them too, because people who think my friends are LESS need to understand that different is NOT less.  My friends and family are MORE deserving than anyone in this world of understanding, patience and love.

That is why I walk.

So, I hope to see you walk beside me, because the more people we have walking, the more others will see that we are here.  Life isn't watching the moments in your life pass you by, life is making those moments count for something.  April 2nd is your moment.  Make it count!

In order to make this walk a moment in your life that will count for something, I need some feedback.  I would like input from those who attended last year's walk.  What would you change?  What should we add? Email me at autism.diva.help@gmail.com.


In the mean time, consider yourselves hugged!

Lou

Monday 14 October 2013

Did You Know?

A dear friend of mine posted these seven statistics on facebook and I thought I would share them with you here:

1)  Autism now affects 1 in 88 children (1 in 54 boys).
2)  Autism prevalence figures are growing.
3)  Autism is the fastest growing serious developmental disability.  More children will be diagnosed with autism this year than with AIDS, diabetes and cancer combined.
4)  Autism costs a family $60,000 a year on average.
5)  Autism receives less then 5% of the research funding of many less prevalent childhood diseases.
6)  Boys are nearly five times more likely than girls to have autism.
7)  There is no medical detection or cure for autism.

Here's a look at a homework assignment of a child living with autism.


How many teachers out there would look at this and think that the child who wrote this is being uncooperative?  At first glance to me it seemed as though someone was making fun of a child who can't spell.  Then I read the teacher's instructions again.

I wonder how many teachers out there are looking at this and thinking that this child is being uncooperative?  How many teachers are looking at this and feel offended?  How many teachers are looking at this and having an 'aha' moment?

As a parent, looking at this makes me think if perhaps my eleven year old can't write because he's over thinking the rules?  Maybe.  Could it be that the letters themselves standing alone make no sense to him?  Maybe.  I wish he could tell me, I really do.  But this picture clearly shows that the child who finished the homework assignment wasn't 'lazy' about his work.  He or she clearly takes pride in his work and put a lot of effort into it.  He or she made certain to follow the rules and did what was asked.

Rules...  just one small deficit area for our children.  A rule is a rule is a rule.

Autism...  It's not a processing error...  It's a different operating system altogether.  Most of us can overcome a mistake in direction and read between the lines, but our children really struggle in letting go of the details.  Every detail is important to them, and they just can't decide which detail is the MOST important.

In my home, it doesn't help that my career is detail focused.  If I don't pay attention to details, people can die, so my motto at home with my children is 'pay attention to details people!'  I think I may have to make a slight adjustment to my motto...  Not sure how, so if anyone has suggestions, please share!


Consider yourselves hugged,

Lou

Thursday 19 September 2013

YMCA--YOU ROCK

I did it.  Totally stepped out of my comfort zone and spoke to between 50 to 100 people.  I can't be certain as it took all of my effort to 'keep calm and carry on' and keep my head held high.  Yours truly can now put "guest speaker" under her belt.

Again, I'm no expert on Autism...  Wouldn't want to pretend I am either.  Heaven forbid.  Did I mention I'm no expert?  But I am a mom, and co-founder of PACE (Parents Of Autistic Children Everywhere).  And I'm happy, so very happy to have had the opportunity to meet all the wonderful people I call my friends through both PACE and Autism Diva Help.  They are my family!

So, my friend Marni facebook messages a couple of us autism friends and asks if anyone would care to be a guest speaker and talk about autism in our lives to the YMCA staff of angels.  I call these awesome people 'staff of angels' as these people take care of our most precious possessions in life - our babies.  Not only do they look after and ensure our kids' safety, they WANTED to learn about autism.  They came to LEARN what they could do to HELP our kids!  Do you have any idea how rare that is?!  Naturally, Mike tells me I should do it.  Well, actually...  he dares me.  You know me and dares, how could I pass this up?  I didn't really think that anyone would actually follow up with me...

In the 11 years of Dayton's life, I have never had a phone call from an organization asking if I could donate some of my time and talk to their staff of angels about autism.  Not once.  Until now.  I was FLOORED.

I explained to everyone in the room that it was my first time speaking to an audience, never mind the large turnout I had to speak to.  They heard what I had to say, they asked questions and took notes???  I am honoured to have shared three hours with these people, and I pray that what I had to share with them will be of some help in their work.

What could I have had to talk about you may ask...  This is me we're talking about, and I have a lot to say.  I spoke about consistency, and about picture schedules, about visual aids, organization and routine, routine, routine!  I talked about how literal some of our kids can be and that before you know it, you're having two arguments in one, because our children are focused on either a technicality (I said red when it was brown) when the argument itself is of much greater importance than colour, or literal thinking (you're as fast as a bunny rabbit--I'm not a bunny rabbit!!!)

I brought samples or workbooks that I've been using at home for our kids, as our kids need to be taught most things, things don't naturally just come to them.  And of course, I brought a magnet responsibility board for them to see in action.  Most people that see it, LOVE it.

The most important information I shared with them was how parents feel, and to cut us some slack from time to time.  We may not always show it, but we love the people who look after our kids and we appreciate more than they will ever know.  It may not seem like it, but for those that look after our kids with kindness and really want to understand our kids, we could even say we love those people.  I explained that we come into their day cares looking like hell sometimes, and may not smile, but it is no reflection on them.  We may be rushed, but it isn't because we don't care enough to say 'hey, how was your day?'   We're running out the door and doing it quick because we want to avoid a meltdown, either because our kids have a hard time with transition, or they have this obsession with pulling the fire alarm on their way out and we're not looking forward to the wrestling match preventing them from actually pulling it, or there's construction on the road on our way home that wasn't there yesterday, and change is upsetting to our kids, or, or, or...  Or we've had a bad day at work because we got a phone call from school because little Johnny yet again swore in the classroom or disrupted the class with echolalia (repeating words without being able to use them; there are two types:  immediate and delayed),  or our child did something inappropriate (Dayton did a lot of that on a daily basis, but has progressed nicely the last two years, outgrowing some of his autistic traits, which gives me high hopes for his future--a lot of work and therapy, and most importantly--consistency and routine).

I was asked how I could handle having four of my children on the spectrum...  Well, it helps that one is of age and moved in with grandpa, it really does.  And as for the rest, I firmly believe God will never put any weight on your shoulders that your knees can't handle.  I think that's why mine are so big.  In fact, yes...  I'm sure of it, LOL.  Sorry, I'm not a fan of the teenage language, but am having to learn it because of my oldest...  You know OMG, LOL, LMAO, ROFL.  I've come up with some new ones...  TDKM (Teenage drama is killing me) and my favourite DTD (do the dishes).

The hardest, most stressful, emotional, but most rewarding job in this world is being a parent.  True happiness is the sound of my kids playing, laughing and even fighting, because when they're gone it's silent, and I miss the noise and want them home.  This is even more true for those of us raising children on the autism spectrum.  I love my babes!

I told them how much care takers mean to us.  How we couldn't go to work without them, and without work, we couldn't afford the medication our kids need to be successful.  I told them how much we love our kids...  They make me laugh, they're silly, hyper and sometimes a complete mess, but they have the sweetest kisses and the strongest hugs.  They are my world and I love them.



Until next time, consider yourselves hugged,

Lou

Thursday 4 July 2013

Lou Lovrin, An Autism Expert

I have been accused of being arrogant because I am the author of Autism Diva Help, therefore I consider myself an "expert" on autism.  This accusation made me doubt myself and made me take a long, serious look at what I have accomplished through Autism Diva Help.  Through many nights of prayer, I've come to the conclusion...  drum roll please...  As long as my children, friends, family, fellow autism parents and Mike and of course I know who I am, others' opinions are just  background noise.  And so, I will continue my work.

Not that most of you need me to clarify this, but I will for those who think me to be arrogant enough to believe I am an expert in autism...  I AM NOT AN EXPERT IN AUTISM.  Autism Diva Help is about MY life and the lives of autism parents who have shared THEIR experiences with me.  Autism Diva Help exists for those who believe they are all alone and need to see that others like myself may be living with the same concerns for their children.  It is my diary of research into schools and school divisions.  I've met a number of people through Autism Diva Help that I would never had the chance to meet without my work.  While I consider all of the people I've met through Autism Diva Help of great importance in my life, the most significant person I've met through my work is Mike.  He's changed my life, showed me that I am worthy of love and respect and that I deserve to be treated like a princess, even on days where I am not at my best.  And then there are the kids.  I am now a mother figure to five children.  I see the miracles of God every day when I look at my beautiful, talented children, and every day, I am blessed.  I truly am blessed to be called "mom."  I have the most wonderful children, they are my heart, my soul and my life.

An expert in autism...  Is there such a person?  Even professionals with their diplomas and decades of education and experience agree that if you meet one child with autism, you've done just that.  You've met A child with autism.  Autism is a Spectrum Disorder, it is a very large spectrum.  No two children or adults with autism are the same.  While they share similarities, they have different challenges.  And while there are no 'experts' on autism, there are 'experts' on YOUR children. That expert is YOU.  No one knows your child the way you know them, and the same goes for myself.  I know my children, and I love them very much.  There is little I wouldn't do for them.  As their "mom," I also have a responsibility towards them, as do you to your children.



As dad (Paul) has taught me, consider yourselves hugged,

Lou and family

Friday 24 May 2013

A School Division Is Only As Good As Their Weakest Teachers

Dayton has started a new school starting April 1st.  We now live in the Seven Oaks School Division, and all I can say is WOW!!!

I'm not really sure what the deal is, it's either
a.)  they know Mike (with 5 kids, 3 on the autism spectrum, everyone knows Mike...  During Dayton's transition to another school meeting, everyone from the Seven Oaks School Division as well as the principal from the school Dayton will be attending in his middle years said "oh yes, we know the family well," and smiled a warm welcome; or
b.)  they're amazingly awesome!!!

Either way, I'm tickled pink.  Dayton's having really great days at school, coming home happy and smiling and when it's his turn at the dinner table to tell us about his favorite part of the day, he tells us "everything about today was awesome!"  I LOVE IT!!!

Dayton LOVES his teacher.  The relaxed atmosphere and laid back disposition of the school principal and his staff is so much different than what we've experienced in the past with school division 1, Louis Riel and school division 2.  Dayton is thriving, and actually LEARNING!  I'm absolutely amazed!  The last school Dayton attended physically removed him from Social Studies as they didn't think Dayton would understand the subject and worked on his IEP goals, and this new school includes him, and he's LEARNING!!!

For example, during dinner time, I ask all of the kids to tell me about their favorite part of the day, as well as what they've learned 'today' they didn't know 'yesterday.'  Dayton starts telling me about the talking circle he learned about at social studies.  "Momma, did you know how the talking circle started?"  I'm dumbfounded.  What the heck is a talking circle, but rather than looking dumb and admitting to my son that I had no clue  what he was talking about (although I think my chin dropping to the kitchen table didn't help in convincing him otherwise), I just asked him to explain what he learned.  "When there was an 'issue' (holy crap, my son said issue...) or a problem, people would gather (yes, he used the word gather!!!) around in a circle, sit down and talk about it and come up with ideas how to fix the problem."
"Wow Dayton, that's great!"
"I know!"

On another occasion, Mr. Dayton was writing out math questions and answering them!!!  No joke, true story!  I was especially blown away when he came to me with his notebook and asked me to write a few math questions, especially some subtraction questions, which he wasn't able to do without manipulations in the past.  Not only did he answer them correctly, but he solved them in his head or used his fingers!

I have received ZERO phone calls from Dayton's new school about bad behavior.  In fact, after a rather difficult counseling session in which Dayton had a major meltdown about his biological father hurting him by lying to him a few times (I really wish Dayton would move past this issue with his dad...  I keep trying to explain to him that forgiving his dad would actually help him too, not just his dad, but he won't listen to me), I stopped to speak to the principal.  Explaining to him that Dayton may have a rough day at school and that he can call me on my cell phone if I wasn't home as I had the day off, he told me that they already have a game plan for Dayton that's worked for Dayton and not to worry.  "A game plan?  You mean he's had rough days?"
"I wouldn't call them rough, but he's had to leave the class room to settle down, and it's been dealt with here and I didn't think you needed to worry about it.  We're more than happy to help him when he needs it, and he's more than happy to comply with our game plan."

Say what?  Have I walked through some twilight zone?  WOW!!!

Dayton has also learned how to cook as he likes to watch his teacher cook breakfast in the morning??? This is no joke - the boy is so good at cooking that he is now in charge of cooking our Saturday morning breakfast!  The whole family looks forward to Saturday morning breakfast by Dayton, but I refuse to give up our Sunday morning french toast...  That's my time!

A mother's treasure are her children.  They are the gleam in her eye, the beat of her heart and the warmth of her breath.  To her, they are her everything, and seeing all my kids go to school where they are truly including all of my babies, not just cosmetically, but genuinely including them, is the best feeling of all.  My babies are being treated with respect and dignity.  They are happy, and that's all that matters to this proud momma.

Unfortunately, it's taken me six years to get here, to finally find a school division I can trust with my babies.  We are not all this fortunate.  Stay tuned for my next blog piece about a father and his two sons, coming from another school division where the school actually had police waiting for him to come and pick up his children, and an officer escort them out of the school...


In the mean time, consider yourselves hugged,

Lou

Saturday 6 April 2013

WE DID IT!!! THE FIRST EVER, ANNUAL WORLD AUTISM AWARENESS WALK!!!

One of my dreams has finally come to life.  An autism walk in Winnipeg, with a rally in front of the Legislature Building.  Until last year, my dream was to have my son Dayton beside me, and as you know, my family has grown, by many, many more children.  So my dream came true, with not only Dayton, but with Katie, Amber, Athena and John.  Ashley (My 18 year old, Asperger's, OCD, anxiety disorder, ADHD) couldn't be there with us, she was the one missing piece of our family's puzzle, but the rest of the attendees more than made up for her absence with sheer numbers and amazing energy!  And let's not forget about Mike, my better half in every way.  He was waiting for us at the end of our walk, organizing the speakers and band.

It is a blessing to be in a relationship where my goals and dreams are the same as my spouse's.  Something I need to get used to though (and it won't take long, human nature won't allow it), is to have someone care about me so much, that he makes decisions based on whether or not he thinks I'm ready for it...  At first, I thought Mike was treating me as a child, but upon further reflection, I realized that he was actually 'protecting' me!  I'm not accustomed to someone taking care of me at all, and between you and I, I really, really like it.  And when he thinks I can do something, and really believes in me, he fully supports me and does everything in his power to help me accomplish my goal.  Especially if that goal mirrors his own...  On April 2nd, 2013, the world celebrated the 6th annual World Autism Awareness Day, and this was the first year that Canada has recognized the day as such.  Finally!  

I really wanted to be a part of this day...  And Mike agreed.  He wanted the same.  And while I'm not sure if Mike deemed me ready for this or if our vision was in sync, I am happy that we were involved. 

And then, my friend Arlene...  While she's not nearly as protective of me as Mike, in fact, I'm certain that during the planning stages of the walk she was prepared to throw me under a bus, our goals were in sync.  She worked very hard to make this walk a success.  This walk would not have been possible without all of our joint efforts.

Anne Fountain's speech made me cry.  It took me a while to get my wits together after hearing her speech for the first time.  She is an amazing woman, a woman I respect and who's opinions I value very much.  Even when it comes to my personal life, I call for her advice.  God has given her the gift of wisdom, and she shares her wisdom with those who need it the most.  Here is the link to her own blog and the wisdom she shared with us the night of our walk.  WARNING...  You will need a box of tissues before opening this link:


And so, the autism walk!  Not only did my dream come true, but it was a huge success!!!  I expected an attendance of maybe 50 people if we were super lucky...  Our numbers were so much more!  Thanks to Anthony Mark Schellenberg of Anthony Mark Photography, I can show you the story of our  First Annual Autism Awareness Walk.  WARNING...  Tony's work is absolutely AMAZING!  He is an artist, who shows a story through his pictures.  The pictures you are about to see are beautiful, so make sure you have a box of kleenex beside you before you begin!!!

Our walk banner made exclusively by Arlene
Arlene and I carrying the banner with my daughter Katie (14 years old, autism, ADHD, GDD).  I LOVE this couple that joined us at the front, namely their enthusiasm and energy!!!  Wish I knew who they are
Some brought friends along.  What a beautiful sight!
Anne with her son
Arlene gathering the participants to get ready to begin the walk
Me, freaking out to Mike about the enormous turn out of people, Mike calming me down at his booth of information and jewelry
The live band waiting for us at the legislature building, our final destination
My Mike...  The master of ceremonies
Arlene happy to hold her baby boy after the walk
Anne making her wonderful speech
Arlene celebrating the end of our 35 minute walk from the Forks to the Legislature building...  Wait a minute...  That is NOT her husband...  Arlene, you have some explaining to do!!!
My son Dayton (11 years old, PDD-NOS, ADHD, OCD, ODD, GDD), somewhat relieved and tired after the walk was over
Johnny, my 5 year old
Mike and my 5 year old Athena
The live band:  Beggars Brawl
One of my favourite families I don't see often enough
Arlene's family
Some brought their own posters to wear
The founder of Autism Manitoba - for parents and caregivers.  Link to her facebook group:  https://www.facebook.com/groups/244966218954875/
Ian McArton, Athlete Development Manager of Special Olympics Manitoba making his speech
A beautiful symbol of unity...  I'd recognize that ring anywhere...  Love it!
Our entrance to the Legislature Building!!!  We did it!!!
My daughter Amber (12 years old, PDD-NOS, ADHD, GDD)
What's left of our posters after every walker received one
Dusti with Bella, an autism service dog and a loving member of their family
During Anne's speech...  Everyone was moved
People enjoyed our posters!  Yey!  Lord knows we spent countless hours making these, so it was great seeing people truly enjoy them
Athena, watching Anne during her speech
Bella, my favourite autism service dog
Loved these!!!
Love the autism spirit!
Arlene manning the information and jewelry booth for Mike.  He'd locked his keys in the van and I had to call CAA...  
The autism awareness bear! Isn't he adorable?!
Just thought it was a pretty picture...  Good work Tony!!!

There are 155 beautiful pictures to show the story of the event.  Thank you Tony for giving us all access to the photo album.  To see more of the event, and trust me, it's definitely worth seeing the pictures, go to:


While you're at his site, check out the rest of his work, and book your next portrait appointment as soon as you can, as he's getting to be busy.  Mention you saw his work on the World Autism Awareness walk for him to fit you in sooner.

The event was a success, and while I'm happy we were a part of it, I'm also relieved that it's over and we can start working on things in our lives again.  I'm hoping to have some help from others for next year's walk as this walk will be an annual event for us.  I can hardly wait to invite people to our 10th annual World Autism Awareness Walk!!!



Hope you've enjoyed Tony's picture story and Anne's speech as much as I have.  Consider yourselves hugged,

Lou and family

Monday 25 March 2013

Pary Deux Of Our Our Very First Annual World Autism Awareness Walk

There's a week left before the walk, and I'm starting to panic.  Mike and Arlene are strong and steady, me...  I'm about to puke.  But I've always been a bit on the diva side, and being able to recognize that is the first step in recovery, right?

Mike has been able to confirm the attendance of Special Olympics.  Do you know what that means?  It means we need to do more posters!!!  If I sniff one more marker...  Thanks a lot Mike!

Anne, my dear Anne has found volunteers to help us color more posters, sparing my nervous system from the fumes of highness.  Thank you Anne!!!  Personally, I think she's just trying to save the rest of the posters from me.  I'm starting to color outside the lines...  It makes me feel dangerous.  The purple penguins and the yellow leprechauns are trying to steal my coco puffs!  I'm gonna team up with the rainbow unicorns and defeat them!  Who's with me?!

Arlene's gone as far as making a logo for PACE.  Mike's gone nuts and started making T-shirts for the walk.  I think he's trying to stroke me out from the pressure.  If you want a T-shirt, honorariums of a minimum of $20 would be appreciated to cover the cost of buying the shirts and the thingies to iron the logo thingies on them and the ink thing of a bob dooey.  Next year, we'll be a little more prepared and hopefully be able to buy the T-shirts on line for much less.  Hopefully...  If you would like one, call Mike at 204 632 5539 or 204 795 2625.  There's 20 shirts in medium, large, x-large and 2xl, so first come, first serve.


I've got a photographer!!!  Yey!!!  And not just any photographer, I've got the best photographer!!!  Tony Schellenberg of Anthony Mark Photography is going to document our very first World Autism Awareness Day Walk with his beautiful work of art.  Check out his work at www.anthonymarkphotography.net.  Tony is also a father of two beautiful children on the autism spectrum, so if you're looking for a photographer who 'gets it,' that has patience and knows what he's doing, you've really got to check him out.  Mike and I will be making an appointment with him soon to get some family portraits done.

We're collecting boxes to use the cardboard to glue our in excess of 200 posters to them for the walkers to carry or wear, we're still trying to decide how to do this.  Maybe we'll give y'all the option.  Any suggestions?  Email me please!!!  This way they will last for next year's walk.  We could use your help too!!!  We're getting together at the Y on the corner of McGregor and Mountain tomorrow (Tuesday, March 26th) at 6:00pm and will be there until 8pm.  We really could use your help in coloring the posters and gluing them to cardboard walkers will carry, so if you have some time to spare (I know...  time is something we all wish we had, but please...  Even 5 minutes of your time would be helpful), we would be super thrilled to have your company.  The address is 363 McGregor St.  Bring your kids, as we're still hosting to Kid's Gymboree while the parents help us.  For more information on the Y:  http://www.ymcaywca.mb.ca/northend.html


Consider yourselves hugged,

Lou

Thursday 21 March 2013

Our Very First Annual World Autism Awareness Walk

We're doing it!  Never done before in Manitoba, we're putting together the very first World Autism Awareness Walk!!!

My God...  the work...  it just doesn't seem to end.  I've dreamt of making this walk happen for years, and now, it's happening...  Mike and our friend Arlene have done most of the work, making me feel a wee bit guilty, but I'm doing this with people I love and for people I love.

Arlene has looked after the permits for the walk and getting the permissions needed to walk from the Forks to the Manitoba Legislature building downtown Winnipeg.  She's baking 300 autism puzzle piece cookies and hand coloring each one.  She's designed, drawn out and in the process of coloring the enormous banner that will be carried by two children at the head of the procession.  She's colored many, many posters...

Mike's the artist of the group, and very talented in everything he does.  I'm still trying to find something he's not good at.  He's drawn up a few different poster designs, had them photocopied and colored many, many, many posters.  He's got a band for our listening pleasure at the Legislature Building, he's working on getting a generator for the band, full of ideas on how we should light the Legislature Building blue (blue is the color for autism).  He's got glow blue glow sticks for the kids.  He's making plans on carrying speakers and chargers during the walk to play songs written with autism in mind for everyone within earshot of the walk to hear.  He's approached Special Olympics and they too are coming to join us in our cause...

And then there's me...  I've talked to the two major autism organizations here in Winnipeg in hopes of organizing a united autism community for the walk and rally at the Legislature Building.  Unfortunately, they both have many projects on the go, and won't be representing their organizations.  I'm scouting for guest speakers and found one that I'm grateful to have made friends with.  Anne is an amazing, intelligent and well spoken woman whom I admire and respect very much.  She's the mother I hope to be one day to my children.  She's been through the trenches of education, advocating and laid the ground work for those new to autism.  Anne is a pioneer in my eyes, and I am truly blessed to have her in my life.  She's helped me in my private life, sorting through all the 'junk' of my life and thrown me a life raft a few times.  She's digging into her connections and got us more help in coloring posters, and may have a special surprise coming to the Legislature Building.  A hint:  plays a sport and wears blue...  That's all I can say for now.

I also sniffed many a'felt pens and colored within the lines as much as I possibly could.  A few times I missed, and with Mike's encouragement and Arlene's blind faith in me, they allowed me to continue coloring the posters.  Arlene's also going to let me burn (I can't bake my way through a paper bag) some autism cookies.

Isn't it interesting how Winnipeg's city hall lights up blue on April 2nd, recognizing the World Autism Awareness Day, yet the Legislature Building says it would cost $1000 to light up blue, so they won't do it?  Hmmmm...  So, it's up to us parents of children with autism to light it up their lawn blue for them!

Autism awareness...  why bother?  Everyone knows about autism, right?

WRONG.

I can honestly say that autism in the beginning freaked the living crap out of me.  I felt totally overwhelmed with everything life had to dish out at me, and making any decision including what to make for supper that night felt like a crisis.  Learning to pull the tears back into my eyes was a really hard trick to learn, but thanks to the chaos of my life and my ex husband's lack of support and his infidelity, I had to master this trick quickly.  I felt a desperate need for a primal scream, a good bottle of wine, and a really, really good cry.  A medically induced coma sounded like the perfect escape and the next logical step.  All that kept running through my head was 'seriously, is this really my life?'  Stress, exhaustion, anger, resentment, worry, anxiety, and going at it all alone even though there are people all around you every day, wherever you go...  that's the worst part.

There comes a time when you just need a cookie.  And the Lord offered me a sweet, melt in your mouth cookie, on a day I needed it most.  On this day, I sat there still stunned with my life, and wondered how on earth I would survive it all.  Did I have what it takes to make it or would this break me?  Did I have the strength and stamina it would take to take care of my child as his father certainly wouldn't.  He was far too busy worrying about himself, his job and his Call of Duty video games to pay attention to either my emotional pain of his infidelity or Dayton's autism.  It was Dayton and I against the world.  I was angry at God.  Truly angry for being all alone in this.  I threw (yup, I did) my bible against the wall in defiance, and it fell open at the foot of my bed.  Picking it up feeling totally guilty (I was born female and Catholic, let's face it, I never stood a chance.  Guilt is my middle name), I read the following scripture:  Isaiah 41:10  "Do not fear, for I am with you; Do not anxiously look about you, for I am your God.  I will strengthen you, surely I will help you, Surely I will uphold you with My righteous, right hand."   Hmmmm, cookie!  Thank you Lord!

I'm not the first, nor will I be the last parent who's felt the overwhelming urge to have a meltdown of their own when they're scared out of their mind because their child has just been diagnosed with autism.  But I do want new folks to autism to know that they are NOT alone.  We are here.  We're having the first annual World Autism Awareness Walk so that these newcomers to autism will see us, and know where to go for help.  They will know they are not alone.  They won't need to throw their bible at the wall.  More importantly, they will know that autism is not the end of the world.  It is not a death sentence, and can be very fulfilling.  Fulfilling?  Yes...  Every day is another day that I thank God for my beautiful children and how they make me who I am today.  My kids are what makes me smile.  Not a day goes by no matter how stressful and horrible where all I have to do is look at their faces and know just how lucky I am.

That's what this walk is about, and will be for years to come.  I am blessed.  My life is full, and I have like minded friends to help make a dream come true.

On April 2nd, I walk for Ashley, Katie, Amber, Dayton and my hips.  Who will you be walking for?



As my father taught me, consider yourselves hugged,

Lou

If you need more information on this walk, email me and I'll get back to you.


Sunday 3 February 2013

Ten Commandments For Interacting With Kids On The Autism Spectrum

Read this this morning on facebook, and had to share it with y'all:

Ten Commandments For Interacting With Kids On The Autism Spectrum, by Stop Romanticizing Autism:



TEN COMMANDMENTS FOR INTERACTING WITH KIDS ON THE AUTISM SPECTRUM

1. Thou shall not yell when speaking to me.
My Autism does not impair my hearing and I am extremely bright. Perhaps even brighter than you are.

2. Thou shall not ignore me, talk negatively about me, speak unnaturally slow, or ask questions to others in the room that pertain to me.
I can comprehend what you are saying just fine.

3. Thou shall believe in me and help me believe in my skills and self worth.
Note the good in me and do not merely point out my negative behaviors. Believe in me and I will believe in myself.

4. Thou shall not perceive me as dumb.
I am extremely intelligent. I do not learn in the same way as you, and maybe not as quickly as you expect me to. Have patience with me. Once I recall information, I never forget.

5. Thou shall not judge my behavior.
I can get overstimulated in certain environments. I may be hypersensitive to sound and loud noises may hurt my ears. Fluorescent lights are distracting for me. They have a humming noise, and can pulsate. All the noises in a room can blur together. Please make accommodations to help me.

6. Thou shall not be so quick to scold me.
Do not tell me that “I know what I did”. I do not. Tell me what my infraction was in a simple, concise manner. I want to please you, but I have difficulties inferring meaning within a vague statement. For instance, do not say please clean up your bedroom. Tell me exactly what you want, such as ‘Please make your bed and pick up your toys”.

7. Thou shall not compare me to others.
Please remind me, and note the talents that I possess. This increases my confidence and positive self worth. Learning disabled or not, we ALL have talents to contribute within society. I need you to help me realize what mine is. Believe in me and I will believe in myself.

8. Thou shall not exclude me from activities.
Please do not mimic me, ignore me, or bully me. Please invite me to play with you. It hurts my feelings when I am excluded. I like to run and jump in the playground, and be invited to birthday parties too. Grown ups can help me make friends by encouraging other children to play with me. I can be a loyal friend if you get to know me.

9. Thou shall give me choices.
I do not like being ordered about any more than the other children. Give me choices so I know you value my capabilities and opinions. Make them simple and concise. Present two options or so. I get confused when too many questions or directions are given at one time due to my processing speed. For instance, ask me if I would like to wear my blue sweater or green one, rather than asking which sweater I would like to wear.

10. Thou shall not judge me by my diagnosis, but by my character.
I am an individual, just like other children.





My question is, reading through this, how often do you as a parent of a child or children with autism catch yourself thinking "oh crap, I do that and that and that..."  I think I will make a more conscious effort in thinking before reacting with the kids.  Maybe I should have this printed in poster form and put it up on a wall to remind myself on a daily basis...


Consider yourselves hugged,

Lou

Thursday 31 January 2013

My Specialty Is Sarcasm, But I Can Be Just Plain Mean

I think we all know just how passionate I am about autism awareness.  I don't share my life with the entire world to see for the fun of it.  I do it to show people that people with autism are not stupid, dumb, defiant or violent without cause...  People with autism think differently and view life in a different way than us boring, neurotypical, fake, selfish and egotistical folk who will do whatever it takes to be accepted among our peers to the point of changing who we truly are and lying to others to be envied and looked up to.  Us 'normal' people just don't know when to quit when competing with the Joneses, do we?

I think my biggest pet peeve with people is that they like to offer unsolicited parenting advice to parents who are raising children on the autism spectrum.   And to those people I would just like to say "Maybe you should concentrate on cleaning up the mess you made raising your own kids before you start playing Supernanny to ours."

A fellow Winnipeg autism mother went shopping at The Real Canadian Super Store with her son who has autism.  This child's autism is much more intense then my kids, and when you watch him, it is clear that he is a child with a disability.  While shopping, the poor boy had a wee bit of an episode as he suffers from extreme anxiety and was most likely over stimulated... and a manager came to my friend and asked "Is there a problem here?" and kind of put my friend in an awkward position...  There's more to the story, but the part that is upsetting the most is that when she went on The Real Canadian Superstore facebook page to let the store know what happened and her offense at how the situation was handled by the store manager, a supposed 'normal' employee or past employee (if his facebook account is accurate), had two comments to say, and I literally copied and pasted these comments:

1)
Steven Brazeau commented on Real Canadian Superstore's Wall post.
Steven wrote: "Autism isn't a real disease, what is it about today's parents that lead them to label their kids with a disease if they aren't the coolest kid in school. Just because your kid isn't popular socially doesn't give you the excuse to label them with autism."


2)
Steven Brazeau commented on Real Canadian Superstore's Wall post.
Steven wrote: "Do you think you're special or something? Just because. Your kid has autism you think you're entitled to ruin my experience shopping by letting him have a temper tantrum? Take that outside and let him throw a hissy fit. I should complain to superstore about letting kids having open temper tantrums ruining everyones experience."


Wow!
I'm speechless...  And that doesn't happen very often.
My roommate had to take my laptop away for a while.  She did her best to edit my original post on this, and then called in reinforcements.

First of all, if this Steven Brazeau is or has been employed by the Real Canadian Superstore, I think they have a major HR problem.

Second...  people!!!  Understand that just because you delete your comment on facebook, doesn't mean it wasn't seen on facebook by others, and furthermore...  SOME OF US HAVE COMMENTS FORWARDED TO OUR EMAILS!!!  Even if you delete your comment, guess what?  It's too late!  The comment has already been emailed to the poster's email address!

Autism is not a disease.  It's not something you catch from someone.

Children and adults diagnosed with autism are not diagnosed by their parents, there are actual psychiatrists that have a university degree that give them the 'right' to do that.

An excuse to call my children autistic?  Seriously?  I'd much rather call my children the next Einstein!  Autism is not a country club us parents want to belong to!

As a mother of a child with autism, I can honestly tell you my children's popularity in school is the least of my concerns.  Our kids couldn't care less if they're considered cool or not, that is kind of the beauty of autism.  They couldn't care less about Mr. and Mrs. Jones and what they have.  

And for the record, autism is not a disgrace, ignorance is.  I am proud of all my kids.  It is society that calls my children autistic, God calls them PERFECT.  So for those that have a problem with people on the autism spectrum going shopping for their groceries, a necessity for survival, well...  take it outside and have your own little hissy fit.  Let the rest of us go in the grocery store, do our necessary shopping and get out.


As always, consider yourselves hugged,

Lou