Wednesday, 24 September 2014

PACE (parents of autistic children everywhere) 2nd World Autism Awareness Walk, April 2nd 2014

What’s this?  Writing about April in October?  I know…  I’ve kind of been busy.  This post is only here thanks to Mike.  He turned to me tonight and said “baby, can I ask you to do something?”  Naturally, anything he asks I do, as he is just that amazing, so I say “yes, absolutely.  What would you like me to do?” 
“I want you to blog.”
“Say what?”
“When’s the last time you blogged?  You have people who read your blog and they’ve had nothing to read for months.”
“I think it was in the beginning of the year, I can’t remember.”
“I think you should blog.”
“When am I supposed to find the time?  Let’s see…  Tuesdays are booked with PACE kid gymboree and coffee addicts anonymous, Thursdays are respite night, Fridays we have Youth Group, Saturdays we take the kids bowling, Sunday is Church and Sunday School, then autism therapy in the evening…  That leaves Monday and Wednesday nights if I’m not working which I’d rather spend with you and the kids…”
He looks sad.  So I get out my laptop and work.
Wow, last blog post was in February.  I’m so sorry.

Now, where did we leave off?  Oh yes, the autism walk!  And I've justified posting this in October as October is Canada's autism awareness month, so here we go!

Last year we focused on awareness, as the month of April is Autism Awareness Month. To be honest, with 4 out of 6 kids diagnosed with autism in our home, my fiancĂ©e and I are very much aware of autism.  So this year, Mike decided to challenge us all at PACE to theme our walk around ACCEPTANCE AND UNDERSTANDING.  Easy for him to say, he didn’t have to come up with the speech. 

Mike in his generosity gave us 2 months to prepare.  No problem…  Yeah right…  All was well under way until 1) Anne told me a little less than a month before the walk she was going on holidays (my plan to have Anne as the PACE speaker every year just blew up in my face) and 2) I decided to make a craft with the kids at PACE Kid Gymboree night.  I had this brilliant idea of making a decoupage mason jar lanterns with the kids, and when I saw the finished product I turned to Mike and said:  “Aren’t these great?  Remember last year when we thought it was too bad we didn’t have anything to light the legislature blue with?” And just like that, with such naivetĂ©, I signed the childrens’ sweat shop green cards.  For the next month and a half, we worked our fannies off to make one lantern for each family member who had joined PACE on Facebook.  At the beginning of February, that was 180 families.  So, we committed to making 180 “decoupage lanterns.”

Yes, they are beautiful.  The kids agreed the first two Tuesdays we sat down to make them.  By the third Tuesday, their tune changed, as did mine.  I tried to cheat; buying some blue glass paint figuring they would be faster and easier to make…  Turned out too messy and expensive.  Also, Mike really liked the “decoupage,” and I love the guy, so we went back to “decoupaging.”  I refused to let go of the painted jars though.  Every jar was important to the kids, so they are included in our 180 “autism lanterns.”

Reverend Mark and Suzie Sunshine

The sweat shop

Between working full time and co-parenting 6 children, I quickly ran out of steam.  My ever loving, doting man would not have me see failure, so he enlisted the help of our oldest daughter Ashley.  Mike and Ashley stayed up many a nights into the wee early hours of the morning “decoupaging” their hearts out.  Between the two of them they made at least half of our autism lanterns. 

While we had some of the autism posters from last year’s walk, many of them ‘disappeared.’  So, the kids and adults got busy coloring more posters.  Mike wanted 400 posters in total.  That’s 400 hand colored posters, pasted on precisely measured cardboard with decoupage glue (just writing the word decoupage makes me break out in hives), threaded and ready to wear by all the people walking the autism walk.  Again, the children loved this task the first two Tuesdays…  then I heard whispered threats of a lynch mob planning to get me…  Funny how that works, eh?  Mike makes the plans for the sweat shop, I pay the price with the children…  I do believe next year he will entertain the children while I plan. 

And then there’s the baking preparations.  Our master baker Arlene Reid baked 300 cupcakes, then made the blue frosting and decorated every single cupcake by hand.  

Arlene with my youngest daughter Athena

Arlene, Beverley, Jen, Mike and Judy

Through this whole process, I’ve learned something very interesting.  A writer can write, but that does not mean a writer can speak.  I wrote, tore up, crumpled up, cried over and re-wrote my speech numerous times.  I wept over the many trees I killed in the attempt of making the perfect speech.  If you’ve met me, you know I strive for perfection.  My original speech was over 2000 words (that’s about a 15 minute speech; never did get to finish reading it to my practice audience as they were working hard at hiding their yawns).  I was politely told to write a shorter speech.  So I wrote a 500 word speech.  Yeah, that wasn’t good enough either.   I needed more information.  When I finally got a speech of 1000 words, Mike didn’t like it.  He’s lucky he’s handsome.  So I wrote another one, and then another one and another one again.  I think I got to “take 23” when I finally threw my hands up in the air and emailed my friend and PACE’s resident sage Anne Fountain, who as I mentioned happened to be on holidays in Australia.  Lucky duck.  Anyway, “take 24” wasn’t too bad I thought, about 900 words; not too long with enough information.  Anne on the other hand added another 600 words.  That’s my friend, she’s got my back!!!

Here’s the final draft:

Dayton and I
Autism is said to affect 1 in 88 children, and 1 in 54 boys, although I have read the latest report which states the rate is as high as 1 in 68. More children will be diagnosed with autism this year than with cancer, diabetes and AIDS combined. These numbers real and they are scary. They are the facts. And whether your child is an adult on the spectrum or newly diagnosed, each of us live with a fear for them as they grow older. My challenge for you today is to not only accept autism, but to gain a better understanding for those that you are supporting. I’m not saying to go out and get an education, I’m saying talk to us! Ask questions! And for the love of God, please, please don’t pity us. Pity turns to hate, and there’s enough of that out there already.
50 years ago, cancer was referred to as the “C word.” A devastating disease referred to as if it was a swear word. Some people still do. We have come a long way in accepting, understanding and even living with cancer. Thirty years ago, individuals were shunned worldwide due to an unknown ailment that was striking individuals to death. Children were refused into schools because of a word 'Aids' and no one wanted to take the time to understand. Then ignorantly we hung our heads in shame when we realized many of these people contracted Aids due to faulty blood transfusions and not sexual orientation. Autism has become this generations leprosy, Polio, Aids epidemic. People are afraid their children will catch our children’s disability. Society calls out our parenting skills. One of our mothers was referred to as a Refrigerator mom, meaning she was icy and uncaring of her child and if you knew her that is the furthest from the truth. What we need is your assistance, true helping hands and not unsolicited parenting advice.
If a child went into a diabetic shock/seizure, would you roll your eyes with your arms across your chest, huffing, all while blaming the parent or would you run to the aid of child and caregiver. If a child was having an asthma attack, would you question the parent why they took them outside that day or ask the parent how you can help! Then why do people question a parent giving their child with autism and ADHD, medication which helps them regulate their neurological issues, their anxieties, and their attention span in order for them to learn, to cope and to become contributing members of society? Why must they assume we’re “doping” our children because we’re bad parents? Why do they assume what our child needs is an extra dose of discipline or a good swat on the butt?
Let us play a quick game! Raise your hand if you used any of these items in the past 24 hours and keep them risen until I finish.
Electricity? House phone? Cell Phone? iPad, iPod, iPhone, iTunes or iSomething? How about music? Art? Literature? How many of you is that? Hmmm......interesting.
Now lets see how many of you have heard of these people: Albert Einstein, Bill Gates, Beethoven, Mozart, Van Gogh, Mark Twain, Emily Dickinson… all of these people were loved, appreciated and respected for the contributions they made to society and all of them have one thing in common… AUTISM! That’s right folks! Without that autism, there would be no lights, music, art, computers or our precious cell phones.
Children with autism develop and bloom to their full potential if their self-esteem, spirits and talents are not butchered by prejudice, judgement, and bullies. Acceptance and self-worth are two of the greatest gifts we can give our children..
I’m gonna let you in on a little secret most won’t readily admit… Parents of autistic children are lonely. We don’t go out to many social gatherings, as it is difficult to find care or we know we are going to corral ourselves into a corner trying to ensure our labelled children are behaving better than the rest attending the event. We slowly become isolated from society due to our caring role and lack of understanding from people in general. Sometimes it’s easier to isolate ourselves than have to deal with the comments, judgements and stares of others. As a result, we get lonely. It’s how Mike Wilwand and I met, and out of our loneliness we dreamed up something wonderful, something we couldn’t find in all of Winnipeg, so we created it ourselves… PACE.

PACE is about the kids and the caregivers who love them. It exist with the help of loving parents. PACE is about accepting each other and making friends, both for parents and children. For all of us to be true to ourselves and to be who we are and not the curtain we stand behind. Beverley Jacqueline first came on board with PACE at its infancy with her two sons and daughter. She is meticulous and organized. Arlene Reid came on board with us a year and a half ago, full of energy and ready to help create the first annual PACE World Autism Awareness Walk. The success of last year’s walk is due mainly to Arlene’s gifts of planning, organizing, decorating, baking and coloring while I sat in a corner with my blue puke bucket, barely able to color our posters within the lines Mike created for me. Arlene designed our beautiful banner. And finally, our resident Sage and last year’s guest speaker Anne Fountain came and joined our group about six months ago. Though she is unable to attend due to her adventure down under, we know her spirit surrounds us. She has spent many hours helping numerous parents of autistic children in Winnipeg with her time and 20 years of experience navigating the world of Autism. Finally, we have Jen Singh who’s joined us just a few months ago. I thank her for the autism chocolates which will add a few more love handles around my waist. These women are not just friends, they have become my sisters and their children are my nieces and nephews. I love them all and hold them close to my heart.
Sadly there are many individuals, we as a collective have come across that are not so accepting. They have been principals of schools, employees in recognized Winnipeg establishments, teachers, medical practitioners, owners of stores, well known Winnipeg athletes and even church congregations and their leaders. And then of course all those who wish to make their own financial fortune with the latest, greatest snake-oil treatment.
We are here today to thank those who have accepted us and have chosen to become more aware of what we deal with not just on a day to day basis, but also on a neurological moment by moment meltdown of our children. We are here to remind our towns, cities and provinces, we aren't going anywhere and when you want to push one of us, we are 190 strong pushing back. Autism is NOT a discipline issue, a disease, nor a definition but it is part of their DNA and it is our responsibility as a community and a society to help them become a contributing part of the next generation. Based on the growing numbers, most families will be affected and all of them are mine as well as your future. They are an investment we must all partake in to sustain our own future!
Each blue lantern you see lit tonight represents a PACE family who has reached out for support. Our message is simple: Accept us, be kind, and say hi. Be our friend.

We come in peace.  With cupcakes.  And coffee.

400 posters...

Consider yourselves hugged, 
Lou and family

Thursday, 6 February 2014

It Takes A Village To Raise A Child

Temple Grandin's mom said it best:  "It takes a village to raise a child."  At first glance I had no clue what she was saying, nor did I feel it appropriate for any parent to ask anyone to help raise their own child, with or without a disability.  Yes, I became all judgy and righteous.  Having had time to reflect on this quote while going on with my daily life has shed some truth on Eustacia Cutler's motto.

My life is a busy one:  I parent six children, four of them have an autism diagnosis along with ADHD, and the fifth has been diagnosed with ADHD.  We have swimming, hockey, bowling, skating, youth group, Sunday school, PACE kid gymboree and parent support group, autism therapy called "I Can Pretend," and then of course school.  Having my children participate in these activities means they are exposed to other people, with their own unique characters.  Of course I knew this prior to enrolling me children into their activities, but didn't really give much thought on how these other people would affect my children's lives.  I just wanted my son and daughter to have fun bowling, my daughter to learn how to skate, my son loves hockey and I wanted to give him the gift of participation, my children to have a relationship with God, get an education and make some friends.

As parents, we don't really think about how adults in charge of whatever activity you enroll your child in, participate in RAISING our children.  Especially when your child is on the autism spectrum.   If you're fortunate enough to have your child invited to a birthday party (I know, how often does that happen, right? But if it did...), the parent would sit beside their child and stay for the duration of the party.  Parents of children on the autism spectrum are very involved with their children.  We are there to guide and correct as needed.  We gradually back off to see if our child will contribute in play with others and learn from adults not related to them...  and they do.  The adults teaching our children are helping us RAISE our children.

Reverend Mark contributes in raising my children every Tuesday, Friday and Sunday through his teachings. Susan at Kildonan United Church helps in raising my children on Friday nights through her Youth Group.  On Sundays, when I'm not teaching Sunday School, another Sunday School teacher contributes in raising my children.  The hockey coach helps raise Dayton through coaching him in hockey.  The swimming coach contributes in raising my children during swimming, the bowling employees help Dayton and Amber and Demetra helps our family raise Amber and Dayton through "I Can Pretend."  The parents who bring their children to PACE Kid's gymboree contribute to raising my children as I help in raising theirs.  When I talk about PACE and the kids I meet, I refer to the kids as "my kids."  Beverley's son Evan always runs up to me and asks for a kiss from "Lou."  The teacher who takes the kids skating...  she's contributing to raising our children...

For parents of children on the autism spectrum it can be tough to let go of their children and let someone else help teach their child.  I know it is that way for me, which is how I ended up becoming a Sunday School Teacher.  I worry about my children and want what is best for them.  I also don't want someone else feeling overwhelmed when my children struggle through their lessons.  I feel responsible for my children's behavior, and want to be there to help and coach my children, and while I do, I learn valuable lessons myself.

I know I'm not alone in struggling with this concept.  There's many of you out there feeling you can't go out, I've been there.  Feeling secluded in your home as you're afraid of your child's reaction to going out and doing something out of routine, and worried about other people's reactions.  I see it all over Facebook, blogs and other articles, where mothers are sad because their child wasn't invited to a birthday party, or their child has no friends, or their child isn't involved in any extra-curricular activities, etc...  I was there once.  I spent years afraid of people's reactions, and it was so much easier to stay at home where Dayton and I were safe. When I tried to venture out, even just outside my apartment into our courtyard, there were parents who thought Dayton was too aggressive, too wild.  I build a cocoon around us, where we were comfortable, lonely, but very comfy.  Dayton's grown the last two years since I broke out of our shell.  It was tough at first, but we did it, and now there's no going back.  Could it be that we just "lucked out" by finding the right place?  Perhaps, but we never would have found the right place had we stayed home instead of ventured out in search of it.  And if all else fails, create one like I did.  PACE Kid's gymboree was selfishly created by my need for Dayton to make "quality friendships."  Yes, I said selfish.  I wanted MY child to have a chance to learn, grow and make friends.  I was getting no where in my back yard.  I'm a baaaaad person.  Fortunately for us, our Kid's gymboree has grown, and not just in size.  We are actually liked.  A lot.  And I am proud of this.  And the kids...  I LOVE THEM.  Like I said, they're "my kids."

It takes a village to raise a child.  It really does.  Get out there!

For those of you struggling, email me.  Message me.  Call me.

Above all, consider yourselves hugged,


Sunday, 26 January 2014

What I Saw

I am doing what's called plagiarism.  It's just too important not to share with everyone.  Hope this is an eye openner to teachers, educational assistants, guidance counselors, resource teachers, principals, parents, caregivers, etc...

This post was written by Kitt Mckenzie also known as the AutistcChick.  You can find her blog at  Kitt herself has autism, so I think we should all take the time to read her blog and glean some wisdom from someone who lives it, every day.

What I saw

I left the gym, I had to, because the music made me uncomfortable. I stood by the door. 

I waited. I turned toward the door to the gym, and I saw a classmate burst through the door, an aide inches behind him. The aide grabbed a strap on his vest and stopped him cold. The student struggled. Aides thronged at the little windows.

I know what they saw. 

They didn't see someone asking to be taken for a walk. They didn't see him begging to have some space. 

They saw an escape attempt. A noncompliant escape attempt. A student trying to outsmart the teachers, to get his way. 

They saw someone who didn't understand the point of P.E.

They saw a runner.

He pulled away, and the aide pushed him back  through the gym door, shouting "In we go! In we go! In we go," his hands pulling and pushing as the student dug his heels in. Everyone else "encouraged" from the sidelines. I saw too much happening.

I saw an apraxic struggle. I saw a nonverbal student being pushed through a door in a frenzy of movement, everyone shouting at the same time, bent over with hands thrusting at his back, pushing against the doorframe and struggling to stay upright. I saw too much, too much.

I saw a blur of movement and sounds coming at me from every direction, I saw the ceiling the doorframe the floor somebody's hands everyone shouting. I saw the final thrust through the door, met with bright lights and cheering, everyone applauding the nice save! 

I saw dizzy and disoriented. 

I saw what he saw.

I saw a classmate who couldn't respond to prompts because they were coming too fast, and who couldn't comply because everything was being thrown at him at once.

He slumped against the gym wall and slammed his head back. The act was met with a sharp reprimand from a bystanding aide. And I know what they saw.

They saw defiance. Headbanging behavior. A tantrum.

I saw a student trying to block out external input. I saw. Everyone else gawked and chattered as the other kids did the warm-ups. I stood by helplessly.

I saw a humiliated man sitting against a wall in a corner, helpless and outnumbered, with no way to communicate.

 I saw what he saw, the flash of students flying all around me and I saw people surrounding me, cheering, cheering for the aide as though it was some big victory to drag a student back into a classroom. I saw the world whirling around my head and it hitting the wall just to drown out the noise. 

I saw that nobody was asking themselves how he might feel. I didn't just see the defeat, though, the lack of dignity or respect; I saw humiliation. Oh, yes, I saw. Pain.

I watched in horror. I felt for him. I felt with him. An aide, concerned that I had left, asked me if I was ok. Then she smiled at me knowingly. Chuckled, "He's having a little fit."

No. That's not what I saw.

I saw an overwhelmed student trying to escape a hostile environment. An attempt to find a safe place, or a bathroom, or some water. 

I saw a hasty and disjointed "rescue" that fried his emotions and ability to think. I saw visual, auditory, vestibular and tactile input slam him like a truck. I saw vestibular upheaval, and I saw desperation and fear and frustration because nobody understood, not one of them. 

They saw a fit. 

They didn't see what I saw.


I know, I mouthed across the aisle. It's ok. I know. He smiled back at me.

I know. 

The bus engine rumbled, and we began to pull out of the lot. They were still talking about him, imputing motives based on their own experience. I knew that he could hear them. That they didn't really care. That it wasn't my place to correct them. To try and educate them. Not the student's place.

 I saw the look on his face, and I knew that nobody understood. 

He sat alone, leaning against the vinyl of his seat, his expression fraught with distress, his eyebrows knit. I knew that they were fine, and they could sit there and casually theorize about it, but that he was still coming down. I saw the look in his eyes. I didn't know what to say. 

I saw his hand, resting on the seat. Hesitating, I leaned into the aisle and placed mine next to it. I didn't know how else to say I support you.

His thumb wrapped itself around two of my fingers, and for a moment it was like that. Then he lifted his hand and took mine in it.

I squeezed. I know.

We stayed that way for about a minute. The bus rumbled down the street, curving around the corners, my hand in his. 

They said I helped calm him down. Sometimes people underestimate what it means to acknowledge someone's humanity. To see it. I don't know what they thought my gesture was, but we knew what it was. A show of solidarity. A quiet one, not a trumpeting fanfare, but a whisper. I know.

This is what I saw. Very different from what the teachers saw.

I don’t know exactly what he saw. I believe that it was terrifying.

But I hope . . . I hope . . . that after the terror . . . I hope that he saw a friend.

Thursday, 23 January 2014

Mark This Important Day On Your Calendars!!!

Please join us on April 2, 2014 (during spring break) for our 2nd Annual World Autism Awareness Walk and Rally.

This years walk will begin and end at the Manitoba Legislative Building. The walk will begin at 6pm.

This years is going to be bigger and better with our focus being Autism Acceptance and Understanding. We will again have brilliant speakers, entertainment, coffee and goodies. Autism Jewellery and PACE T-shirts will also be available for purchase to help cover some of the costs of this event.

So bring your family, friends, neighbours, respite workers and join us in marking this day for Autism. (Please only service dogs as there are numerous children who are afraid of dogs.)
Oh yeah, and please pray for warmer weather.

As always, consider yourselves hugged,


Saturday, 11 January 2014

Sunday Mornings

Just a little peek at our Brady Bunch Sundays:

Every single Sunday is the same:  the toddlers are fussing and cranky, Katie refuses to wash her hair and decides instead to experiments with make up, which of course makes me get a wee bit dramatic:  "Girl, there's a fine line between wearing make up and looking like you got attacked by a pack of Crayolas!"  Amber wants to wear gym shorts (they're short, I hate them, and it's cold outside; we're in the middle of winter), and Dayton wants to dress to the nines - dress shirt and tie (completely ignoring that there's a stain on his tie, and the dress shirt).

The five year olds decide they want to sit at the stairs of the altar, be the center of attention...  as I pretended I don't notice they run up the isle to the minister.  Naturally, Dayton wants to correct their behaviour as they've broken the cardinal rule:  "though shall be on your best behaviour in church..."

"They're not supposed to be there.  I'm gonna go get them!"  I know exactly what Dayton's idea of getting them will be:  Dragging them from the altar back to us (and we just HAVE to sit at the back of the church, because that's the routine and we can't break the routine), with the little ones screaming and kicking as they're not getting their way, typical behaviour for any toddler that doesn't get what they want.  I do my best to keep him rooted beside me, finally give up and take Amber, Katie and Dayton to Sunday School a wee bit early.

On one particular Sunday, we had a change I wasn't prepared for:  the Sunday School room was being used as a dining room to feed the congregation...  I went into full panic mode.  Change and autism do NOT mix.

Thankfully, the reverend came to rescue me with the five year olds, and led me to another room for our Sunday School.  Only one more child came to join us, making it a very, very small group.  Thank goodness because the three older ones were on the verge of a meltdown as we had another curve ball change thrown our way.  My babies on the other hand, took full advantage of the situation, running to sit on Reverend Mark's lap.  John and Athena LOVE reverend Mark, and don't even try to hide it.

Reverend Mark held the lesson that day, and I love it when he takes a break from sermons and comes to teach the children.  His lessons are always rich, leaving me with the feeling I've just walked away from a sermon.  Most importantly, reverend Mark is super supportive of the kids and even comes to pick them up for youth group in his own vehicle!  The congregation is very much involved with all of the children and supportive of special needs children AND adults.  The congregation of Kildonan United Church is in the process of fundraising money for a special electric chair for one of the elderly congregation members.  I've never seen anything like it before.  When one member of the church is affected, the whole gets involved as one.  It's incredibly amazing to be a part of this group of people who genuinely care about their church members.  And now, they've opened their doors to our autism community every Tuesday night!  I consider my family to be very fortunate and blessed to be able to be a part of this group of wonderful people.  Anyways...  off track again...

Reverend Mark made pretzels.  Not just any pretzels.  The best ever!  I've never had a fresh from the oven pretzel.  This was AMAZING!  He's an amazing baker, one who bakes breads from scratch...  yum! Breaking bread with the kids was not only fun, but it made them feel important, plus we got a good lesson on why we break bread.

Unfortunately, the room we were in was right above the sermon...  And reverend Mark finished his lesson before the sermon was over...

If I have God before me, Jesus beside me, the Holy Ghost within me and am surrounded by the Lord's angels, who or what shall I fear?  THE TODDLERS!  A bored toddler is a handful of trouble, but I have two of these little angels.  I broke out in a sweat!  Dayton, Katie and Amber are very much rule followers, and the rules are simple:  behave at church.  The toddlers haven't really been observant of this rule...

Of course, Reverend Mark assured me that everything was all right, children are children and the congregation would understand.

So, one may ask, why do I continue to do this every Sunday?  My answer:  The greatest thing a mother can do for her children is to give her children to God, teach them to love, respect, honor and worship God, and teach them to talk to God.  I won't be around forever, my time and Mike's will come.  When that time comes, I want my children to know they are not alone.  I am thankful my mother gave me this same gift, as she was called home eleven years ago, and I miss her so much.  I am thankful for God's unending love that holds me tight when I feel alone in my struggles.

Consider yourselves hugged, (and daddy Paul, if you're reading this, I miss you and mom very much)


Tuesday, 7 January 2014

Out Of The Mouths Of Babes

I have the most wonderful children.  No, I didn't give birth to all of them, but they are mine in every way that matters.  I don't have step kids (Ashley, Katie, Amber, Athena and John), I don't walk on them, and my biological son Dayton whom I did give birth to (well, had a C-section) does not have half sisters (Charlie-Anne and Summer); they're not cut in half.  We're a couple of families blended together into one.  So, introducing to you, a small sample of how my children think:

"Mom, I know Santa doesn't exist."
"Say what?!  Yes he does!"
"Mom, come on.  I know Santa doesn't exist, I heard it at school.  I'm fine with it."
"Keep your voice down, the kids will hear you!"
Whispers:  "Mom, I know Santa's not real."
"Well then where do the presents come from buddy?  You think they just magically appear?  Who else but Santa would bring them?"
"Mom come on!  I know you and dad buy them.  I kind of busted you last year."
"What I really want to know is who eats the cookies?"
"Ugh...  I eat the cookies, it's me, I love cookies."
"And the milk?  Who drinks the milk?"
"Dad, you know how much he loves his milk."
"OK, that makes sense."

"You can't be a woman, you're a mom!!!"

"I don't want to go in, just leave me in the car."  (It's like -30 with the wind chill.)
"I don't think so kiddo."
"Well, for one, I love you.  And two, it's illegal."
Whispers to me:  "I won't tell anyone."

"And lead us not into temptation, but deliver us some e-mail."

Older kid:  "I bet you're 40!"
Younger kid:  "No, he's 80!"
Older kid:  "85!!!"
Younger kid:  "I'm guessing 100."
Older kid:  "No, he'd be dead then.  100 is when you die, he's still alive."

"If Jesus walked on water, could he do a head stand?"

Sitting in the front seat beside me driving home from a visit with a friend, getting car sick.  I'm singing along with the music trying to get his mind off it.
"Mom, you know I love you, right?"
"Aww, thanks babe!  I love you too!"
"Please stop singing."
"You're making me sicker."
So much for that idea...

"I need super glue and a non stick frying pan."
"I wanna know which ones a liar."
"Say what?!"
"Don't you wanna know which one is telling the truth?  Super glue is supposed to stick to everything, and non stick pans are supposed to not stick.  You said you hate liars.  Let's find out which one we hate."

At a restaurant...  the waitress taking our order...
"I wish to eat the unborn."
Absolute silence...
"Eggs, the boy wants to eat eggs..."

Again, at a restaurant...
"I want meat on a stick."
"Say what???"
"Meat on a stick with sticky sauce."
"On a stick?  I don't understand."  Meltdown in 10, 9, 8
"Lots of sticks side by side, meat in between..."
"Honey, I don't understand..."
7, 6, 5
"With the sticky brown sauce!!!"
People are looking now...
Drum roll please...  "RIBS!  YOU WANT RIBS!!!"
6, 7, 8...  Smile.  Thank you Lord!

"Momma, you're skinny."
I'm huge...  "Well, thanks babe."
"Yeah, you just have a lot of skin."
And just like that my happy moment is gone.

"I don't need a bath, can't you just Febreeze me?"

We've learned a couple of things along the way this year:

1)  Never say "maybe" to our children.  The word "maybe" to them means:  "I swear on my life this will most definitely, certainly and beyond a shadow of a doubt happen."

2) Arguing with teenagers is like wrestling with a pig in the mud.  Sooner or later you figure out (in my case through my child's counselor) that they're really enjoying it.

3) We appear to have several invisible kids living in our house.  They are named "It wasn't me," "I don't know," "I'm bored," and "Why me?"

4) I can always count on my daughters to walk up to me for no reason to give me a hug and say "I love you mommy" or my sons to jump on me when I least expect it, wrap their arms and legs around me like spider monkeys and kiss my face all over, telling me they love me 'like crazy.'

5) God may not have answered our prayers the way we wanted Him to, but when we've stepped back to look at the whole picture, we see He's answered them in the way it's best for us.  Kind of like we do with our children...  In other words, God equals daddy to us.

6) There is a special bond between mothers and sons which can never be destroyed.  I've questioned this bond much in the last year between Dayton and myself, and I see now that no matter what happens, or who he's with, no one can destroy what we have, and I am grateful.

7) My new favorite word is "Really?!"  It works for almost everything.  I'll give you a brief example...  I have a rule for my sons:  No play fighting, as John is so small and Dayton is stronger than he realizes.  When I catch them play fighting, I loudly say "Really?!"  They boys back off into separate corners of the room.

8) Courage isn't the lack of fear.  Courage is the willingness to move forward even if you are scared.  My sons show me this every day.  My daughters are a bit more squeamish, but they show me they have courage as well.  I'm very proud of them!

9) You know you're in trouble when your teenager comes to you and says "You know I love you, right?"  A conversation starting with that sentence means nothing but trouble, especially when said teenager has autism.

10) Raising little boys is not just a job.  It's an adventure; with sound effects.

Consider yourselves hugged,


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...