Wednesday 28 March 2018

Autism Winnipeg PACE: The 6th Annual World Autism Awareness Day Walk

Holy smokes!  I can't believe it's been almost seven month since I last blogged!!!  I promise to get caught up some time soon, just not today...  Today I need to talk about the walk coming in just five short days!!!  I'm so excited!!!

We've had some "bumps" the last few weeks in our planning of this year's walk; with 1,050 members, we are sure to have a few of them.  In the zen of my faith, I'm down with those.  They open up areas of conversation I had never thought of before, which is a good thing! 

The biggest concern...  a group of young autistic teens/young adults who view the color blue and the puzzle symbol a support to an organization called Autism Speaks.  Ouch...  I'm serious.  That really, truly sucks.  That is not the reason PACE is blue with a puzzle piece...  like, at all...

In the beginning, there was Mike and I.  We had some support, especially from one very dedicated autism mom, Arlene Reid.  She was pregnant with her third boy at the time, and eager to make an impact on Winnipeg.  She shared our vision of organizing an autism walk, and we all agreed on 1) the color blue and 2)  the puzzle piece, as we didn't want to "re-invent the wheel."  People were already "aware" of autism, and recognized both the color and puzzle piece as a representation of autism.  We wanted 1)  immediate recognition and 2)  impact the city of Winnipeg.

Of course we knew of Autism Speaks; the organization was responsible for the puzzle piece and the blue, but not the way we wanted to be percieved.  While wanting to maintain the easy recognition, we also wanted to take back the puzzle piece and what it represents.  We didn't want people to "fear" autism, and we are certainly not fundraising for a cure; we are celebrating autism.

Say what???

To be honest, I don't care for the connection of the puzzle piece with the sense of there is a piece of the puzzle missing in my children.  But I DO like two puzzle pieces joining as though they belong together to create a collage of life and belonging.  Let's face it, the uneducated don't think my kids fit in our lives or belong.  That's why we are taking back the puzzle piece to give it the true meaning, as puzzle pieces FIT TOGETHER TO CREATE SOMETHING BEAUTIFUL! 

My gift to Mike on Valentines Day, the true meaning behind PACE and our logo

I was, and am still disgusted with people trying to "fix" my kids.  They're not broken, they're amazing!  I do recognize however, my kiddos need extra help in school, and in life in general.  They need to be taught things that the rest of the population takes for granted.  It can be frustrating, and at times daunting in trying to get educators on board with our kiddos needs...  but it's not just the educators...  I've met some pretty arrogant health professionals I've had to advocate to for my childrens' needs as well.  And then there's also advocating for myself as a parent of an autistic child to said professionals and some autistic individuals as well.  We've come a long way in education, but we still have a long way to go to, and I'm too old to take on that responsibility.  So we changed the puzzle piece...

Obviously, this is the Autism Speaks puzzle piece...

Now let's take a look at PACE's puzzle piece...

Our puzzle piece is much, much cooler, plus we have writting in it:  PACE (Parents of Autistic Children Everywhere inside the puzzle piece in different colors, and the writing again on the banner)

Yes, our puzzle piece is blue, but look inside...  There's red, yellow, green AND blue.  We don't care what color you are, we won't judge you. 

Our autism community is so very fractured...  We have the floor time therapy in one corner, the ABA in another, and then there's the RDI and the Sensory Integration Therapy, Verbal Behavior Therapy, the list goes on and on and on...  And then there are groups of autistic children who have grown into adults.  Some like to be referred to as autistic and others like to be referred to as living with autism...  It's a hot mess out there I tell you, and there doesn't seem to be any way to be be politically correct anymore.  And we're not finished yet.  There are those who want to wear red, and those who want to wear blue.  And then we sit back and wonder why on earth the government can't get their $&*! straight...  Seriously. 

I confided to my friend Becky and Debbie through Facebook Messenger that I was really struggling in making people feel welcome and join as ONE LOUD VOICE on April 2nd at our 6th annual walk at the Legislative Building.  I was frustrated, and felt like throwing my zen out the door.  My friend Debbie encouraged my zen time, she and Becky offered their support, and Becky...  Becky helped me decide to keep zen in my life, that it wasn't a crock of $&*! and to continue the path I asked Faith to guide me on.  She allowed me to quote her, so here it is:  "I hope that in your comments at the walk that you put in a plug for advocacy as a group.  That collectively we can create change...  If the general public can get MEC (Mountain Equipment Co-Op) to remove a product from their shelves, I am sure that we can advocate to have OUR tax dollars be put towards the needs of our children, family members and fellow individuals with ASD."  Here's the link to the MEC story:  https://www.theglobeandmail.com/report-on-business/mec-faces-calls-to-drop-outdoor-brands-owned-by-us-gun-manufacturer/article38110551/


My friend Becky nailed it!  This is exactly why we do the walk!!!  IT IS TIME TO STAND TOGETHER AS ONE AT THE LEGISLATIVE BUILDING!  It is time to join together, as one voice, wearing red, purple, green, blue, yellow, pink (I LOVE PINK!!!), orange, I really don't care, come in costume, listen to Nirvana play Come As You Are, sing Kumbaya...  All of us can agree on this:  It is time the government takes a closer look at therapy to encompass ALL therapies, not just one.  What works for one child may not work for another.  Take it from me, I did floor time therapy with one of my children before he was able to speak and as he aged, it no longer worked for him, so we switched to ABA...  Low and behold, floor time now makes sense again...  Seriously.  I can't keep up anymore.  We need more EA support - not less!!!  Quit taking our inclusion support workers away!!!  Our children are becoming adults - they need jobs government important people who get a say in all this!!!  Let's start there and see what else we can come up with.

See you April 2nd!  6pm, Legislative Building!




As always, consider yourself hugged,

Lou



Monday 28 August 2017

Religion Lost, Faith Returned, And We're On The Move PACE!!!

Ahh yes, we all look for a good place to be outside of our homes, somewhere where we meet folks with the same beliefs, and it is not an easy thing to do.

I've recently read that our subconscious is where our beliefs stem from and it's the subconscious that actually guides our lives.  Our subconscious is fully developed and on board immediately at birth, but our conscious thought process located in the frontal lobe...  this conscious decision making process takes time to develop as the frontal lobe is not fully developed until we finish puberty. For example, the other day, Mike demanded our youngest stop playing his DS game immediately as he was getting dinner prepared at the kitchen counter, while John played his DS with his back to Mike... You can see where this is heading without my spelling it out for you (pardon the pun), and long story short, both my youngest and daddy ended up very, very upset.  Mike's theory was he didn't need to give Johnny a warning as he could see Mike getting things set up for dinner and should have taken Mike's efforts AS his warning. I would like to add my boy is ten years old, and has not reached puberty yet. Clearly, John didn't compute or perhaps even notice, as normally we don't run behind schedule for dinner. It usually takes us about an hour or so to whip up dinner for seven, and so poor Johnny wasn't expecting dinner for at least an hour.  He wasn't expecting dinner on the table in a few minutes.

Our consciousness is our overachieving brain meeting goals and deadlines, calculating 2+2=4 (yes, Johnny can figure this one out) looks up the map to figure out how to get from point A to point B, decides to set the alarm to ensure we don't sleep in for an important meeting, schedules dental appointments, etc.  What this information means to us is that our beliefs come from the subconscious, and are based on other people's opinions and beliefs:  our parents, neighbors, teachers, family members... anyone in contact with us until we hit puberty.

Our subconscious believes everything, for example the fat guy wearing a red suit breaks into our house by shimmying down the chimney to LEAVE us valuables rather than steal them.  It's also about perception:  how the person telling us this story looked (facial expressions, animated or standing still) and sounded (excited, scared, etc.)  We are excited the big guy in red is breaking into our house because mom and dad were excited about the holiday, rather than scared out of our trees like normal people would be.  Our subconscious believes church is bad and working hard generates income which we then turn around to give a small percentage to our church.  Not happening says your subconscious and you don't go to church, or you heard adults talking about those damn bible thumpers knocking on their door very early on a Sunday morning again, pestering them when they were sleeping in.  You don't want to be thought of as a bible thumper who won't let folks sleep in on a beautiful Sunday morning, so no church for you.  But your subconscious also believes in FAITH. My mom said the big guy in red is leaving me a present so it must be true!!!  So when we talk about God, our subconscious has made up it's mind whether we know it or not, based on our observations of others.  Poor shame for you if you end up believing in God and have to keep it to yourself, embarrassed because your subconscious tells you people will mock you if they find out.  It takes some work to realize you are living your life based on someone else's beliefs, and when you do, you must decide what you are going to do about it.  Hiding your faith based on other's beliefs is a shame I'm glad I don't have to bear.

When Mike and I created Autism Winnipeg PACE, our subconscious told us it would be hard to gain members, hard to do events and have people attend them, hard to spread the word of what our goals are and hard to reach government to think about autism.  Our subconscious saw people start autism facebook groups before, then watch them crumble and fall apart and in some cases close shop.  Our subconscious saw other autism outreach organizations not return phone calls to people and saw a very small group of people gather together at a park for an autism awareness day walk organized by an organization in Winnipeg.  It just wasn't something people are interested in said our subconscious. It also showed us autism groups not getting along and being unfriendly; it also showed us no one would donate money to their cause without a tax receipt...

Why would we start something we had no chance of building up to what we envisioned?  Why bother organizing anything for people who our subconscious has shown us time and time again will only complain and possibly even hate?  What's the point?  The answer is simple:  FAITH.  What wasn't simple was HAVING FAITH.  It Mike and I countless hours of bickering why to and why not to for many hours until I grabbed Mike's laptop and ohhhh, lookie here, his Facebook was opened and wow, here's a button to create a "group," and voila!  We had to follow through now because if it's on Facebook, and if it is on Facebook, than that folks right there is true and real.  Our subconscious told us so.  So we had to dig deep and give faith a go!

I kept thinking of the movie Field of Dreams.  I know, how cliche, every company and organization out there has used the slogan "If you build it, they will come" on their employees, volunteers, partners, helpers and leaders, to sell them on improvements and ideas.  But you know what?  That is FAITH.  If you don't build it, no one will come because they will have nothing to come to.  "So?  If you build it they may not come either," says our subconscious because our parents told us not to waste our time on our hobbies and passions because our hobbies won't pay the bills.  Aren't you glad Mohammed Ali, Tim Berners Lee, and Jesus had FAITH to follow their passions in order to change the world?  I am!  I couldn't reach out to y'all without the internet now could I?

Faith in anything is taking a risk, and risks are scary.  It was scary for Mike and I to start Autism Winnipeg PACE, then a risk founding the non for profit PACE (Parents of Autistic Children Everywhere).  Don't get me started on the Annual World Autism Awareness Day Walk and Rally right in front of the Legislature Building every April 2nd...  We risked major ridicule, upsetting the government and really ticking off commuters as they had to wait for hundreds of people to cross the streets, interrupting their commute...  But even before that, we risked no one showing up for the walk and rally.  How humiliating would that be?  We took many risks, having faith and ignored our subconscious beliefs of other people...  and our family's and friends' opinions many, many, MANY times over.  We put the events on Facebook, and so it was going to happen.  FAITH!

Faith is precious and fragile.  If you lose your faith, you stop taking risks and stop making a difference in your community.  You are being, that is all.  Marilyn Monroe has said:  "Imperfection is beauty, madness is genius and it's better to be absolutely ridiculous than absolutely boring."  So while my faith has at times been truly shaken as in this past year, I refuse to "learn my lesson and be absolutely boring."  Mike has supreme faith in Christmas, and makes Christmas puke right out our house into the front yard.  And he ends up spending more money on the hydro bill than he does on donations to PACE (Our bill was $1000.00 for the month of December and donations came to $50. and something cents), but he has faith that one day, everyone will know about PACE and donate and then we will be able to do more things for the group; make a difference in our community.  One day. Faith is not for sissies or the weak of heart (yes, another cliche just for you).

We have gone through so much these past two years as a family.  Life took over and smashed our faith against the rocks over and over again, the waves of turmoil really working hard to kill whatever faith Mike and I had left in humanity.  Some very serious and upsetting things that left me sitting on the sofa, crying and eating to suffocate my feelings for a life I felt lost to me and therefore meaningless, which in turn took a hit at my health as I had gained seventy pounds back of my eighty pound weight loss.  One of the biggest stabs in my heart was an incredible betrayal by someone whom I considered my best friend, someone I loved as I would have loved my own sister. She was my person.  You know, the one you would help bury a body bag if asked without question? Losing her made me lose faith in making another friend ever again.  She/they went as far as making it extremely uncomfortable for my family and I to continue being involved in our church, of which Mike was a part of for 25 years.  I kept on crying and eating (I wasn't kidding when I said months... six months to be exact).

I had tried to get back on track with my life and health by going back to work as I had taken a leave of absence for four months, and figured it would make me feel better.  I even told my supervisor I was coming back and that I would be using the pharmacy to get me better, and if they were OK with that, than I was OK to come back to work.  It didn't make me feel better.  Sure, it kept my mind pre-occupied somewhat, but without faith in something bigger and better than me, my life was empty.  I know, five kids, how on earth could my life be empty...  but even my kids, whom I love more than life itself (just one last cliche just for you because admit it, you absolutely LOVE them!) could not fill that void faith had glowed beside my heart in.  Mike tried to fill it too.  But I had managed to suck away greedily at his faith too.  My chest literally felt empty.

But then one day, I picked up a book.  Please don't laugh, mock or judge the title, because it totally screams me.


I got this for a whopping $15.00 at Coles during a visit with my favorite people in the world, my outlaws Patsy and Leon, at a shopping trip in Brandon.  We have talked about moving to Shilo for a few years now to be closer to my cool outlaws, leaving PACE to that friend of mine, you know the one who squashed my ripped out my heart and stomped on it?  Ironic right?  That's what blows my mind.  She knew she would have Autism Winnipeg PACE upon our move, and yet...  anyhow... Thank goodness Mike and I saw what we needed to before the move.  Back to the point of bringing this book to your attention, this book has me feeling my faith again.  I feel some heat beginning to stir where my faith used to burn so bright, it felt like it glowed right out of my chest.  No, it's not a "Christian book" at all, it's a self help book I felt moved to get as since last September's series of "unfortunate events," I've doubted not only my faith, but myself as a person.  Again, I'm not preaching anything, converting people to Christianity...  Call it whatever you want:  The Universe, Mother Earth, Source Energy, Goddess, The Lord, Buddha, The Grand Poobah, The Mother Load, Spirit, The Force, or what I connect with as God.  But this isn't just about believing and being all high-vibe when the sun is out and the bunnies are hopping around either.  This is about believing, even when things are at their most uncertain or absolute crappiest, that there is a bright shiny flip side within your reach.  Anyhow, I digress again. The faith thing.  I am not used to living without it.  I'm kind of empty without it.  And because I had been so closely connected in my church, teaching Sunday School, volunteering with anything and everything our good reverend wanted or needed, I lost track of God living inside ME, not a building I no longer felt my family was welcome in.

The book made me reach back into my past, when I fist felt that stir in my chest and peace of  mind. Where I understood there were other forces in our lives I needed to have faith were right beside me, ready for me to let go and give control over to Him.  Growing up rigidly Easter European Catholic, I started out with much snarkiness and eye rolling when I heard the word God.  I figured I would put His word to practice to prove Him unreliable...  The more I studied and practiced, the better I felt. Then I started believing in Him, and when I did, all these positive shifts took hold of my life.  I was happy, kind, giving, comfortable with who I was and loving.  That made me love Him, and I wanted to show Him, so I started teaching it.  Remembering my history with faith before the building where I feel like someone crashing a party I wasn't invited to was important in regaining my faith.

Remembering my past faith, I remember trusting Him to do His will in my life.  Wanting to move to Shilo to be closer to my outlaws, I tested my faith by quitting my job without finding a new one yet. How reckless and unlike me, I know, but how else was I going to move to Shilo?  And how would I know if God meant this move to be, if it was His will for my family?  It's not like I can commute two hours and fifteen minutes twice a day, and leaving my family during the week and coming home on the weekends was NOT an option.  I decided I had FAITH I would find a job... wait for it...  in two weekends!  Yes, crazy though right?  I had given two weeks notice at work, worked those weeks while emailing potential employers and setting up interviews in the evenings after work, then spent one weekend door knocking and delivering my emails as a follow up to the ones I had already emailed (I was done in one day, then kicked back and Netflixed the rest of the weekend), then went to Brandon again the last weekend of my employment and guess what?  My faith paid off!  I start my new job September 12th, right after my vacation and annual September long weekend camping trip with PACE.  Next, Mike and I had to have faith we would find a house big enough to accommodate our family...  We did.  There is a family with seven children who had their home custom made to accommodate their large family.  And, their family is growing, which is why they are selling their six year old home!

Our last leap of faith is to find key leaders to run the Autism Winnipeg PACE programs while Mike and I set up a Brandon chapter of PACE...  wait for it...  the name, drum roll please...  Autism Brandon PACE.  Why mess with perfection, mwahahahaha!  We have faith we will find the leaders PACE needs for both chapters, and homes for the winter as well.  If you yourself are interested in being a leader at either Autism Winnipeg PACE or Autism Brandon PACE, or know someone who would do great in such a place, please feel free to email me with contact information.



Consider yourselves hugged,


Lou

Monday 21 August 2017

Run Thru The Park

I'm PUMPED!!!


I get to go camping with a bunch of bikers in an enormous field, with a live band and what I hope is to be many families with kids on the autism spectrum.  It's a motorcycle/poker run weekend! Wooohooooo!!!

My hubby and I with our five bambinos (last year)

The camera couldn't capture the entire group of bikers...  this is the right half of the group (last year)

What the...  Someone call 911.  Lou's fallen off her rocker and hit her head.  She's gone bonkers. Where is Mike?

Well, Mike went with me last year.  So did my kids (and yes, they survived, and what's even better, they had a FANTASTIC time!).

We met some pretty funtastic people, people I hope I get to meet up with again this year.

The Ride Thru The Park began three years ago.  The first year, these look bad do good folks did the run to raise money for a family with a newly diagnosed child on the autism spectrum.  These folks had never seen autism before, and worried about their friend and what the diagnoses meant not only for her child, but for the entire family.  Watching her struggle, and not knowing what to do to help as it seemed whatever works for the neurotypical children didn't work for this kiddo or make things worse.  The bikers learned while their hearts were in the right place, they desperately wanted to help, it seemed autism exceeded their skill set and decided to do what they knew best:  RIDE!

OK...  How the bleepidy, bleep, bleep does leather and bikes do good for autism?  It works when you play a poker run and split the winnings in half:  one half for the winner and the other half is given as a donation to people who need it who DO have the skill set to help!  Taaaadaaaa!!!

For the second year's Ride Thru The Park, these look bad do good amazing folks decided to spread the joy to a grassroots kind of group that give all proceeds back to the autism community...  I don't know how they found us, but they did, and I am grateful.  This year marks their 3rd Ride Thru The Park year, and they hope to continue every year to make it bigger and better.

Here's the rules of the game:

THERE ARE NO RULES!!!  bahahahaha, love it!  I'm not the kind of girl who does play by the rules anyway!  And even better, and I'm totally excite about this part, because as you all know, I'm the Queen of Klutzes and there's no way a bike would survive me trying to ride it, the run accommodates Ghost Riders!!!  Yeah all right, I didn't know what that meant either, so I asked Shawna if that meant we turned into Nicolas Cage, erupting in flames riding a bike and becoming a lean, mean killing machine, to which of course she just shook her head and mumbled under her breath.  I think I heard an OMG, and in what moment of insanity did I agree...  but it's OK, we're still friends, she's just decided to introduce me to the rest of her friends and potential new ones as an acquaintance twice removed.

Anyhow, ahem (I know something you don't, te-hee-hee), a Ghost Rider is someone who doesn't ride through the run, but drives a vehicle (woo-hoo!!!  That's me!!!) in the run!  Funtastic!  This means everyone can join in 100% in the run, and stand to win half the winnings!  And if you can't drive (for example, our kids), you can STILL participate and roll for an eligible hand!  A win win for everyone!

Cost:  20.00 per rider, and $10.00 per Ghost Rider, payable at registration before the run.

For more information or questions you may have, please contact Shawna at https://www.facebook.com/RunThruThePark/

Anyways, back to last year's event, the fun part for everyone was putting aside all stigmas about autism and bikers alike and getting to know each other.

It was tricky at first.  Some of them had a perception of what autism was and were nervous, but once they met my kiddos, they felt at ease and carried on with the kids like anyone else.  My kids had a perception of them too, because people quickly jump from Harley's to a motorcycle gang like Hell's Angels.  They quickly learned that couldn't be farther from the truth.  By the end of the day, my kids were all over them!



Yeah, even I got in there, it wasn't moving so the bike was safe ;)


I met a family who came riding in to support us all after witnessing the birth of their niece.  I'm serious.  They waited at the hospital for the birth, got to say hello to baby and hold her, then ran out the hospital doors to come to this amazing event.  Talk about dedication!  Another man came all the way from Alberta to show his support - amazing!

We had some vendors out there too selling autism awareness items!  It was amazing!  And then the games for the kids...

There was a small splash pool surrounded by tires, a tire toss, a number of interactive kid games with prizes...  A huge bonfire (go big or go home folks!), a fantastic live band and fun for adults too.
If you're already a member of Autism Winnipeg PACE Facebook Group, check out the photo album called "Run Through The Park:  August 27th, 2016."  I know, I know...  I spelled it properly last year when naming the photo album, but in my defense, I was super excited to get all the pictures up to show everyone what a great time we had!!!  It was sooooo good!!!

Anyways, Here's a few more pictures to show you a snippet of the fun times we had! I really hope you can come this year, we're inviting riders and families to come out and show your support to riders and families living with autism.  Camping on the premises is an option you should take, there will be facilities for all your needs, but you must bring your own food and drink, and tents or trailers.  Fees are only $10.00 per tent or trailer!  You can't beat this for camping fees PLUS a lot of entertainment!

Because we're all young 

Remember the red wagon?

Start off shy, but in the end, they all come down to the basics...  I wanna play!

How about I take you out for a nice dinner baby?  Oh look at that, let's start our date now!

Get a great tee-shirt!






Everybody is a winner!









There were many more games, but I don't have any of those pictures to share, my favorite being riding up on a bike with the passenger catching a hot-dog in their mouth as they rode under the hot-dogs. I'll try to get good pictures this year, or better yet, come out and see it yourself!!!


As in the past, consider yourselves hugged,

Lou

Wednesday 20 May 2015

Losing My Religion: Should I Stay Or Should I Go

There's an old saying that you should NEVER discuss Sex, Politics or Religion in "polite" company, or a group of people you hold in high regard.  I guess I'm about to be impolite, as I am going to talk about the hot button of Religion.

Autism is bursting at the seams from schools, playgrounds, day cares, community centers...  So you would think the same happens in our churches, right?

Well...  Not exactly...

The truth is most families with a child struggling with autism don't make it to the front doors of the church...  or other things...  I know because I was there once myself.  It was just so much easier to seclude ourselves in our own little bubble and not have to deal with society's judginess.  Children with autism and their families are ostracized in our community wherever they go.  They're made to feel different (I suppose we are, but isn't everyone a little "different?"), less than, and unwelcome. Our kids struggle to make friends at school, get laughed at, are bullied and are made fun of.  That is our reality.

Going to Church can be difficult for families dealing with autism spectrum disorder or any other kind of special needs really.  Children with autism often struggle in new environments, and placed in a room full of strangers can be overwhelming for them.  I've talked to many families who have said "It's just too hard, so we don't bother going," or " we can't find a church willing to accept our child's differences, his/her inability to sit still or not make odd noises or gestures," or "My child won't sit through a service as he/she doesn't understand when to sit, stand, kneel, pray, etc. and I just don't have the energy to defend my child's behavior to people who as Christians should not be judgmental and so confrontational."

Who's to blame for this?  Is it the parents?  Ummm, no.  Is it the children?  Definitely NOT.  The fault lies completely with the church, and when I say church, I mean the church as a whole.  I don't care what denomination you are.  The mission of the church should be to bring people to Christ, to make each and every person with or without a disability, young or old, aware of their divine purpose in life.

Many families of children with special needs may be struggling financially because they have their children in therapy, treatment, counseling, tutoring, etc.  The parents are the full time caregivers, advocates, translators, speakers, and don't forget teachers with little to no help.  Tapped out of additional energy, these parents need a safe place that doesn't judge their parenting skills or their child's odd behavior, such as hand flapping, utterances, strange noises, stimming, etc.  These parents and children want and NEED to be accepted, loved and safe.  If there is a place where they all should find these needs met, it should be at their church.  Sadly, for many, this is not the case.

Losing one's religion or as I prefer to call it, faith, is a terrible injustice.  My faith keeps me strong for my children, and when I feel alone, sad and hurt, my faith keeps me inline and true to myself and my family.  Without my faith, I don't think I could have survived my personal trials and tribulations.  My faith is my life line, and without it, my hope for the future is gone.  I don't go to church because I am religious...  I actually hate religion.  To me, religion is man made rules, regulations, and ceremonies I don't feel will get me any closer to God.  Religion to me is humanity's way of reaching God through their own efforts, which is impossible.  Just think of the tower of Babylon.  They never did reach the heavens.  Faith on the other hand allows me my personal relationship with God who loves me, even with all my flaws and foolishness so much, He sacrificed His own son for my salvation.  I go to church because I want my children to know my God who is so full of love for them, He doesn't care about their autism, is not ashamed of it because He created them in His own image.  I want them to know He has a divine purpose for them in their lives and they are not alone.  I want them to be proud of themselves and not hide and be ashamed, because God is proud of them.  But how do I do that without a church to support me and my children?

I want a church where my children can sit with me during service and celebrate, without the judgement of others.  I don't want to have to explain why my daughter is humming instead of singing, or why sometimes I need to interpret words to others or explain what she is talking about.  I want my children to contribute in the service so they feel they are an integral part of their church.  I've been fortunate enough to find such a church, but to be honest, our family is the only one present with children on the autism spectrum.  The congregation loves my kids, and supports my family and encourage us in any way they can.  We have been blessed with a caring reverend who has all of my children involved in some way with the Sunday Service.  But I wonder where the rest of you families are?  And I'm not just talking families with autism, but families with young children.  I've met a few parents with young children (no diagnosis) who have chosen not to go to church because they feel their children are too young and would not last in Sunday School, nor would they sit still in the pews, disrupting service for the rest of the congregation.  How sad!  How are the kids supposed to learn if they're not exposed to the church?

Reverend Mark has made a decision, not just because of me, but because he sees our Autism Winnipeg PACE kids coming to Youth Group, but come Sunday they're not at church.  When he wondered why, I explained the above you've just read.  So he's made a decision.  He wants to have a special service for families with young children.  With or without disabilities.  He wants families with young children to come and have fun, not sit in pews bored out of their minds.  Without Sunday School.  This service is reserved for us clingy parents who want to celebrate our relationship with God with our kids.  The service would recognize that young people do not sit still and that they are as welcome as anyone else.  No organ, no real structure, contemporary music.  This service would last approximately 30-45 minutes or so, followed by fellowship time:  cookies and juice and maybe even a game.  If we were to hold this service on Friday evenings, we could have Youth Group right after the service!

As with anything new, Reverend Mark would need our help to start worshiping in this new and exciting way.  Here's how you can help:

- Commit to being there and engaging in the service.
- Hopefully we will start in July.  If we can start in June, so much the better.
- Share your ideas of what shape you would like to see the service take.
- Invite your friends, neighbors and family to come and be part of the service.
- Help with advertising (ex. posting on your facebook page)
- Invite musicians you know who may be willing to come and lead the music component of this Worship Service.
- If Friday evenings don't work, which evening would work best for you?

If you feel you've lost your religion, wondering if you should stay or should you go, I ask you to consider this new way of worship and come join us.  Email me for more information at autism.diva.help@gmail.com or contact Reverend Mark Satterly at 204 979 0510.




Consider yourselves hugged,

Lou and family

Thursday 29 January 2015

Why Come Out To Pace Kid Gymboree Night?

Our kids work hard all day trying to keep it together and blend in as much as they can at school and out in society where people are not always understanding, accepting and kind.  My kids truly are my heroes.  They get up every morning and face a society that tells them they are not good enough, smart enough, cool enough or fast enough to keep up with everyone else.  Our job is to let them know we love them, respect them and appreciate their efforts.

Autism Winnipeg PACE Kid Gymboree runs all year round with special focus on the holidays.  We know routine is extremely important to our kids, so when they decide to dedicate their Tuesday nights to us, we dedicate ourselves right back to them, especially during the holidays when the rest of their routine falls apart.  We work hard to make sure every Tuesday night is packed with opportunities to either learn something new or practice some social skills while making friends in a fun atmosphere, where they are accepted and not judged for their uniqueness.

I don't have a crystal ball to show you what we will do in the future, but I can show you what we've been doing since the unveiling of our first publication.  Some of our themes will be repeated, especially our summer vacations, Christmas vacations and our monthly celebration of birthdays and bowling nights.  The rest of the time we're learning together.

Summer time fun is my favorite. I love our back yard which has a (wait for it...) heated swimming pool (Mike and I don't play in cold water), two patios with lots of seating, and of course an enormous BBQ.  Summer time fun on Tuesday nights was held mostly in our back yard where the kids got to swim to their heart's content, enjoy some hot dogs and smores, while the parents got to relax on the patio, have their coffee and meet new friends.

Just come home from work and what do I see in my swimming pool?  Mike fishing!
Photo bomb!
Lots to do in our back yard

I had two favorite events we put together in August.  August 19th we had our (take a deep breath, it's a long one)  End Of Summer Pool Party, BBQ, Potluck, Smores, Bon Fire and Water Balloon Fight! My youngest daughter helped me make shish kebabs in the late evening and made a great effort to help me prepare some water balloons...  until I noticed she practically created a lake on my kitchen floor.  Mike and I stayed up until the wee hours of the morning making four huge rubber maid totes / food coolers filled with water balloons for the water balloon fight.  I had lost all feeling in my finger tips and called it a night.  But it was so worth it!  The kids had an awesome time beating us poor, old, clumsy and swag parents.  Mental note:  Dollar Store water balloons don't hurt as much as the ones from Chapters.

Miss Athena creating a lake where she stands






Getting ready to enhialiate the old
Labor Day weekend before school started up again was absolutely fantastic as we did one of my favorite things of all time...  WE WENT CAMPING!!!  Grand Beach Campground is stunning and we had the most amazing time with the kids and parents!  It even rained on us one day, but the kids still had a blast making their own lava lamps, glow in the dark bubbles, sparkler fun, glow in the dark stick fights, popping popcorn over fire and making their own fire roasted gourmet smores.  Three days and two nights of fun spent fishing, swimming, watching fire works, boat rides with our Captain Daniel Picton, and of course eating like kings and queens!  There was a coffee place the parents could sneak off to and get a latte when they started to miss Starbucks.  Yes, I am guilty.  Stop judging! While I love camping, I also love my coffee! The point I'm trying to make here is we rocked it!  None of the kids got the chance to be bored, and we brought the summer to an end with a bang!   And the parents?  Well, we got to be heros for going camping.  Mission accomplished.

Fishing time

Look what I caught!!! 
Captain Daniel Picton, at your service!

Science experiment time



Fire works

Making friends...  or not...  yes, definitely making friends!


Captain Daniel is also a sous chef!


I'm gonna be a scientist!!!



Carollynne puts her art degree to practice with face painting


Our evening entertainment

Our glow in the dark bubbles / night lights



One of Mike's favorite things to do is scare children and adults alike, so naturally, we just HAD to take advantage of Halloween.  One Tuesday night was dedicated to pumpkin carving and decorating gingerbread haunted houses, which of course we ate.  Working together with Reverend Mark of Kildonan United Church, Michael Nurse (PACE Marketing Executive) and Mike Wilwand (PACE Co-founder; our two Mikes) spend about five hours transforming the church sanctuary into a haunted house.  Complete with music dance floor, strobe lights and not to mention fog machines to really give us that haunted house feeling.  We even had a DJ.  Yes, of course it was Mike.  Who else has a library collection of scary music?  Oh, and we had dancing skeletons, jumping spiders which the kids were terrified to set off, ghosts hanging from walls, skeletons holding candy bowls, skeletons speaking to us and other skeletons screeching at us... Fun times!

Clark Kent
The mad hatter
The cutest couple EVER!  Michael Nurse and Noreen Luptak.
He scared me when I first walked in
Suzie Snowflake (Our Youth Group Leader) and her date





Mike and his best buddy
I wasn't kidding about the strobe lights.

Cakes by Arlene...  Yum!!!



You know what I love about bowling?  It teaches turn taking, playing as part of a team, math in keeping score, hand / eye coordination, gross motor skills, social skills and most important of all...  it is fun!  None of us would be able to compete professionally, and that's not the point of coming out to our bowling nights which Arlene Reid has dedicated herself to organizing once a month.  Team spirit is not something you can give a lesson on, it needs to be experienced.  Being part of a team is not something our kids fall into gracefully in society.  They're not the first to be picked in sports at school, so Arlene makes sure they get to shine once a month, bowling style.  And you know what? I've come a long way in bowling.  I used to have to have the bumpers up on our family's lane, but now I've progressed nicely into bowling in my own lane, without injuring those on lanes beside me. I'm so proud of me!!!  Thanks Arlene!!!









Once in a while we like to organize a board game night for the kids.  This one time, the kids voted to play Twister.  Well of course Mike had to take the game to a whole  new level.  He combined two Twister mats into one game...  The kids LOVED it!!!  They didn't want the night to end.  But I got tired and cranky because I can't twist like the young ones do.




Have you heard of the YMCA / Win Gardner Place on the corner of Mountain and McGregor?  They offer a $5.00 membership for the year!!!  Some of our Tuesday night Kid Gymboree take place here to run off some steam.  We do indoor rock climbing, skateboarding, play in the play structure and sometimes even play X-Box games.  I love it because I don't have to prepare crafts or worry about learning something new, the kids love it because they get to burn off steam, and the parents love it because they get to watch their kids have a good time while socializing with other parents.  It's a win-win-win (no pun intended).








December was a busy month.  The kids were out of school, so how do we entertain them?  By throwing events to remember, that's how!

It started with Breakfast with Santa.  Arlene Reid, our event coordinator extraordinaire planned, cooked, baked and fed an army of kids and parents with breakfast sausages, eggs and pancakes.  My contribution to the food preparation was mandarin oranges.  Yey me!  Not to worry though... Carollynne Picton and I kept busy enough with tattoos and face paint.  Since Carollynne has a degree in fine arts and I don't, I got to cheat with sticker cutouts and markers while Carollynne worked with paint to prove her master talents.  Mike was made to sweat it out in his Santa costume blind as a bat because wearing his glasses would have been a dead give away he wasn't the real santa. Poor guy... he got a little sick to his tummy not being able to see.



It doesn't matter how old you are, Santa is cool!
PACE's Event Coordinator, Arlene Reid, slaving away
Carollynne's art degree paying off
PACE Co-Founder Mike Wilwand as Santa, PACE Marketing Executive Michael Nurse is Santa's "little" helper.


I slaved over these all day ;)


Mike loves Christmas more than Halloween.  Lights are his thing just like yarn is mine, so is garland, and Christmas ornaments, and music...  He is also a total electronics geek.  So, put together electronics, music, lights and a creative mind that just won't stop.  What do you get?


The picture here just doesn't do it justice, and the Youtube video was over 20 minutes long.  All I can tell you is the man went crazy with 10,550 lights connected to a 32 channel light o rama controller, programmed to flash, blink and bedazzle folks to eleven different songs, one of them being "Let It Go" as my girls are completely obsessed with "Frozen."  We called it the Wilwand "PACE Family Light Show," and had a donation box outside with 100% of the moneys going to the Children's Wish Foundation.  While the lights were absolutely beautiful, and Mike spent weeks and countless hours to set up his 'piece de resistance,' it set off my vertigo to the point I believe I know what someone with seizures may feel.  My right eye still gets a wee bit of a twitch at the sound of "Let It Go."

Carollynne Picton, God bless her soul, decided she wanted to go on a sleigh ride.  "Sure," I said. "That sounds like a blast!"  So on December 27th, Carollynne, Judy, Noreen, Arlene and I had a production line at my kitchen table, cooking hot dogs, slapping them into buns, wrapping them and tossing them in a cooler Carollynne and Daniel brought over that has the option to keep food warm! A warm cooler, go figure.  Thank you Canadian Tire for being so innovative!  Could not have done this without you!!!  Judy Luptak got busy making hot chocolate in the restaurant while I enjoyed my very fist sleigh ride with the kids.  Each sleigh sat 25 people.  We filled three sleighs!!!  Terrific turnout! Fantastic event!  We were so very fortunate to have Anthony Mark Photography available to capture the fun times of this event!







The children decide to thank Mike with a little tackle time



Families living with autism don't really get to get out on New Year's Eve.  Neither do our kids, so last year our event coordinator decided to put together a New Year's Eve party for families connected with Autism Winnipeg PACE.  This year was our second year, and again, a huge hit just like last year.  So at the end of the night, Arlene and I get talking about birthdays as one of the moms announced her son's birthday fell on January 1st.  Awwwwwwww...  Arlene and I decide we will plan a birthday party every month for children to 1) have birthday parties where kids actually show up, and 2) be invited to an actual birthday party!  Yey!!!  We've done these in the past, but always held them on Tuesday night gymboree.  The parent would bring a cake unless they couldn't afford to. Even then, we made sure there was a cake for the child or at the very least a cup cake and a candle.  We would all sing "Happy Birthday" and watch the child blow out their candle.  This was always done at the end of our Kid Gymboree, so it wasn't really a party...  Having a party will be much better for our kids!





Arlene, our fearless leader, photo bombs us...
All I want for Christmas is my front two teeth...
My absolute favorite photo of the evening
We brought in the New Year together!
Happy Birthday Evan!!!

Winter is just too darn cold, even for a heated outdoor pool, so we decided to go out swimming in January.  We found a great pool with a reserved time between 5 and 8pm on Tuesday nights for people with disabilities.  How wonderful!!!  Thank you Beverly Mason for the awesome idea and doing the investigative work to ensure our kids had some splashing fun!  It was so much fun, we're going to dedicate one PACE Kid Gymboree a month to go swimming.  It is free to parents and children, you just need to bring change for the locker.  This means no matter what your child's age, there is no excuse.  You can now come out as swimming pools don't age discriminate!  Contact me for more information.








Mike bought himself a new pop up ice fishing hut last year.  The man loves fishing so much, he actually used to paint his very own jigs.  He owns ten ice fishing rods, and twenty other for spring, summer and fall fishing.  He never comes home empty handed, and he always out fishes anyone he goes with.  For example, we did a test run in January ice fishing with the kids with our marketing executive Michael Nurse and his son Phoenix.  Of course the kids and I tagged along too with crazy carpets just in case the kids got bored.  Mike caught 20 fish, Michael a few less, and the kids and I caught two each.  In our defense, we came a few hours after the two Mikes did and we had to test out the crazy carpets too.  Our test run was awesome, so we held a PACE Family Ice Fishing event on January 24th.








The month of February is the month of love...  We focused on St. Valentines Day and learned about the martyr and how he wed couples at a time when marriages were outlawed as a single man was a better soldier than a married one.  We learned about the different types of love and how love is not just a gooey feeling, but is a commitment made between friends, family, lovers and relatives. Michelle Barry who is new to PACE offered her time and crafting skills to teach us how to make amazing Valentines Day cards!!!  Arlene Reid offered her baking expertise in teaching the kids how to bake and decorate cookies, and I learned along with the kids how to give back to the community by making Valentines Day gifts for the elderly.











And finally, with the talents of Ryan Smoluk who created a beautiful painting and donated it to Autism Winnipeg PACE, and Noreen Luptak, PACE's Graphic Designer, I am thrilled to unveil the new and improved logo of Autism Winnipeg PACE:




Want more information about Autism Winnipeg PACE?  Contact us!

Co-Founder:  Mike Wilwand 204 795 5668
Co-Founder:  Lou Lovrin 204 771 4546




Consider yourselves hugged,

Lou, for Mike too :)