Setting the Bar

One thing I'm never quite sure of, still haven't figured out, is where to set the bar.  I can recognize when it's held too low.  I can even sometimes recognize when it is held too high, but I'm not always sure of when it is just right. This is part of having a child with a spectrum disorder, and invisible challenges. Their struggles may not be as obvious, so their needed supports and understanding can be just as elusive. 

One thing some of us moms complain about, is that once we share our child's diagnosis with others, due to lack of understanding (and awareness!) some people automatically drop the bar, lower it to ridiculously low standards.  This can be really frustrating when you are paying for your kid to be in lessons, and the instructors see them as a write-off the second you open your mouth.  Suddenly your intention that your child just be better understood is somehow translated into, "he doesn't really count so go on about your business with the others."  Or at least that's how it feels when they recieve zero attention.

The really tricky part may be that the bar constantly needs to be adjusted.  In some areas of their lives, they will, like other children, rise to the expectations.  High expectations, where appropriate translate to knowing that someone deems you capable.  Expecting good work, or good behaviour from someone can equate to believing in someone. 

Counter to that, recognizing that our children struggle in some areas requires us to set the bar at the right level in that area.  Where they can experience success, where they do not have to feel as though doing their best is not good enough.

I find this really, really hard.  I worry that if we are having a hard day, and I lower expectations for behaviour, or for school work, that somehow I am setting a new, lower standard for Aiden, and for myself.  I wory about not working hard enough, or not working him hard enough.  Or I can worry about pushing him too hard on days when he is already feeling overloaded.

In my heart, I feel that whenever someone is doing the best that they can with the tools and skills that they have, there lives integrity.  Whenever somebody is able to do as much for themselves as they can, there lives indepependence.  Integrity and independence are what I strive for....those are the 'roots and wings' for me.

So daily living becomes a series of decision making in terms of expectations.  Each day and each area can demand a different standard.  So, as parents we are the coach, standing on the sidelines, encouraging and sometimes downright coaxing. And somtimes, once in a while, just letting it go.

Now I Love Rubbermaid Too



If this logo is on it, buy it.

 If you've ever found yourself disgruntled with the world around you, feeling that we live in a man -eat- man kind of a place, I`ve got a story for you. it`s a good story, filled with human goodness.  You might even say it`s a beautiful story.

A couple of weeks ago, I decided that it couldn`t hurt to send Rubbermaid a letter, telling them about Aiden`s complete admiration for their cleaning carts.  And their yellow buckets on wheels, and so on. Along with the letter, I enclosed a copy of some of Aiden`s Rubbermaid themed art work, and a link to this blog.

Well, today, as the kids and I were making crafts at the kitchen island, the phone rang.  I almost didn`t pick up because I didn`t recognize the area code, and have been getting a lot of telemarketing phone calls lately.  Why I picked up I dont know, but I am so glad I did.  Ìs this Natalie...`` a voice questioned from the line  ``Yes``, I replied, wondering how these people got my name, when the voice introduced himself.  He was a Mr. Tim Spence, calling not from some I`ll -just- take- 45- minutes- of- your- time operation, but from RUBBERMAID!!!!!!!  Yip, it`s true.  I still cannot believe it, but it is true.

He said that  they had recieved my letter, and that it had really touched their hearts.  They are arranging for a local distributor to provide my little janitorial-loving boy with a cleaning cart!!!!  I stood holding the phone in disbelief.  I simply could not believe that I had heard him correctly.  I would love to now state that I handled this phone call with great poise, and responded with some sort of appreciative communication.  However, the truth is that I broke down crying.  I was struck.  Not only by the overwhelming sensation that my baby`s dreams were going to come true, but also by the level of humanity and unbridled generosity being afforded Aiden by a complete stranger.

I can tell you this, from the couple of minutes I spent on the phone with Mr. Spence, I knew that I was speaking to someone with a kind, generous heart.  I honestly felt that making this phone call, and granting Aiden his heart`s desire was bringing him great joy, the man embodied a true giving spirit.

My son has been doubly blessed.  Not only will he recieve his cart, but the biggest gift is the lesson that the world is a good place, filled with good people.  That he has recieved great kindness from a complete stranger is what I hope he carries with him throughout his life.  Long after Rubbermaid products lose their glow.  My hope is that some day he will be the sort of person who gives to others, asking for nothing in return. 

So, the next time you are out shopping, and you`re trying to decide which product to buy, if Rubbermaid is a choice, let it be your pick!

Mr. Spence, and Rubbermaid, I do not know how to properly express my gratitude to you, for what you are giving my boy, and for the beautiful example you have set for him as well.  My true wish is that your kindness is repaid to you one hundred fold.

As for me, I have nothing else to wish for.

School Schmool

Was shopping with Aiden today, saw this bear and cracked up!

I started this blog, initially, partly as a way to keep record of the one year I planned on homeschooling.  I have come to learn that many people enter homeschooling as some sort of temporary arrangement, but quickly fall into its charm and many merits.  I no longer preface my homeschooling choice with a disclaimer of its intended duration.  I no longer feel the need to seperate myself from whom I had imagined most homeschooling moms to be. (Sorry ladies....) 

I am more comfortable in our choice, mainly because I have been blessed enough to have access to a local support group, filled with lovely women, and their beautiful children.  Finding others who share your normal makes all the difference.  A few months ago, I started arranging monthly meetings for those of us within the group who are homeschooling children with special needs.  This has been a great source of encouragement and support to me, like I have learned so often since Aiden's diagnosis, none of us are alone in our challenges.  For some reason, that is one lesson I keep on learning.

Knowing that this is the right educational choice for us doesn't mean it's an easy one.  There have been days that have been just plain tortorous.  Seriously, painful.  But there have also been many, many days that have been highly successful.  Sometimes I look through all of the work we have accomplished, and I can't help but feel proud.  Today Aiden started work on a "Cleaning up on Grade One" booklet I made him, with relish he dipped into his janitorial themed math problems.  Where else could he recieve such individualized, motivational materials?  He carefully drew and recorded the changes in his caterpillars, anxiously awaiting the formation of a chrysalis... engaged, excited learning.  In a regular classroom, he would be too distracted and distressed to benefit from such a science project.

I've had a paradigm shift with my attitude towards homeschooling.  Initially it was begun out of necessity, and our sheer terror of facing the public school system.  Now, I see its discovery as yet one more gift discovered by our family since we started calling Aiden's autism by name.

And now they want to bake cookies...

Ever have one of those days you thought would never end?  When bedtime seems like a far distant shore?  I had one of those days today.  In fact I'm still having it.  Go. Go. Go. 

-Could you get me a....
-I wanna...
-Mommy he's....
-Mommy she's...

One and a half hours .until bed.
Nothing but cleaning the kitchen, bath and bed standing between me and five minutes peace.

And now they want to bake cookies.

Shine!

Our little artist participated in our second annual homeschool Creativity Fair last night.   We sorted through the reams of paper containing his artwork, and chose some of his favourites for his display board.

I just love this event. Because our children are homeschooled, they don't always get opportunities to share their school work, their big projects, unit studies or artistic endeavors with a large group.  And let's be honest, many kids are exhibitionists at heart.  Another component of this even is a contest for an art project and creative writing.  Last year Aiden won in his age category for his drawing of a track crane, and this year he won first prize for his drawing of "Daddy's Guitars" and also an honourable mention for his poem, "Ducks."

I cannot express in words (although admittedly I am trying) how beyond proud we are of him. This is truly his opportunity to let his little light shine.  So often his abilities can go unseen in the blur or his energy and perpetual motion, but his art stands still for all to see.

Sure his display depicted many things not typically drawn by six year olds, but who needs typical..give me his drawings of bathroom carts, buckets on wheels, stand up dustpans, and chairs any day!

So allow me this.  My pride.  And probably way more pictures than necessary.

Rubbermaid!

Aiden and Margaret

This World is Small

Back in March, in the post You Can't Make This Up,  I let you all in on Aiden's desire to own his very own Rubbermaid cleaning cart.  Well, we managed to convince him that that was indeed too big for the Easter Bunny's basket.  His hopes are now firmly in the hands of dear old Santa Claus.  As I suspected, this new area of interest has not wavered in the least.

In the meantime, Aiden often watches videos about Rubbermaid commercial products on YouTube. (Yes, these exist.)   His favourite so far is one that he calls "the Next Generation of Cleaning Carts"  They also have videos that show how the carts are assembled, how different features work, etc.  The other day he was watching these videos with his daddy, when they came across a video called William gets a Cleaning Cart.  They didn't make this up either! 

As impossible as it is to believe, there is in fact another little boy out there in this world who also asked for a cleaning cart for Chrismas.  The world is indeed a small, small place.  To watch the boy marvelling over the vinyl replacement bag, and front and back casters, well, it could be my boy!    This video has been watched many, many times now at our house.  I think Aiden is delighted to see that Santa can, in fact bring such an item to a child.  but he has also become seriously concerned because this boyo's cart was not equipped with all of the accessories, such as spray cleaners, mop, broom, and more specically, his came without the bucket on wheels and ringer attachment.  Aiden is quite adament that he wants a cart that is already, and I quote, "Rigged Up!"

While Aiden doesn' t seem to mind that his friends are not interested in janitorial supplies, I cannot even begin to imagine how much fun he would have with this little boy who is. 

Keep on cleaning boys!

Help Me To Remember This Too

Last fall I wrote a post, Help Me To Remember.  I wrote it during a very, very difficult and trying period.  Upon rereading this post I am immediately taken back to the stress of that time, although it was just short months ago, it feels like an eternity ago  We were having a rough go, we had just moved house, which was humongously stressful to our little man.

But now, some months later, we are, in a word, settled.  We are floating on the tranquil ocean of routine.  We great each day knowing what to expect, what`s to come.  Home is a peaceful, enjoyable place to be.

Our boy surrounds himself with his art.  He skips in and out from the backyard, freshly revealed since the winter snow.  He loses himself in his interests,  his little sister is quickly growing into a cherished playmate, he has discovered the computer... and even more amazingly, the cat has decided that he loves him back!   

Our boy is joyful. Our boy is joy. So often these days his sweet little face beams, his whole body jolts with excitement.  We look at him and just know we are doing right.    His differences feel more like a source of joy and pride than a source of stress.

And I need to remember this too.  This feeling that all is right with the world.  This feeling of truly enjoying our days.  Help me to remember each sweet day, each broad smile, every day that things just feel good.  Because these are the days that will carry us through the harder times.  These days are the ultimate goal for us...a happy boy and the unmistakeable feeling that we are serving him well. 

Going Up

If I had to use an analogy for parenting a child with autism, I'd compare it to a creaky staircase.

Chances are, if you've got a creaky staircase, along with the creaks, your staircase has some beautiful features, intricate woodwork, tonnes of character...in short, it's well worth a few squeaky treads.

Over time, with a little practice you learn to sidestep some of the louder squeaks in your travels, with experience, this doesn't even seem like work, you catch yourseld deftly dancing upwards, a little to the left or a little to the right with hardly a thought.  There's even been a few times you found yourself stumbling, but luckily you have that lovely railing to lend you support.

You even decide that a lot of repairs aren't all that necessary.  There's something rather fetching about some of these little creaks and groans, they've grown on you, it's become impossible to seperate them from the beauty of that stiarcase.  You no longer want to.  They are your stairs after all.

You probably have friends who bought houses about the same time as you.  Some of these homes have sleek modern staircases.  Upon visiting them you often marvel at their efficiency, and how easily you can make your way up and down.  But you can't help but feel that they're missing something, perhaps a little too mainstream for your taste.

The great thing about your staircase is that its charm has become as much a part of your travels as the journey itself.  A journey that always gets you where you need to go, even with a few obstacles along the way, a journey that has somehow taught you how to dance... and a journey that is always going up.

Lost

On Saturday, my little family released colourful baloons.

That night, we let a blue light shine over our door.

I posted relevant links of facebook, and changed my profile pic to the World Autism Awareness Day symbol.

But none of these actions helped to stop a small 3 year old boy in Quebec, with autism, from wandering off.  Or help people know how to find a child who cannot cry for help.

The ground search has just been called off for sweet little Adam.

And my heart screams.... for another little boy lost. 

Despite the passage of time, let's all continue a vigil of hope, and pray for the miracle of his safety.

World Autism Awareness Day 2011

Today marks World Autism Awareness Day.  Last year I marked the day with thanks,  today I will mark the day with a wishlist....

It's my wish that a day will come that the effect autism has on families is recognized by those who are in positions to adopt policies for change.

That someday when a child decides to throw a meltdown in public, that others will be more compassionate, maybe even helpful.

That families feel that they have valid options for intervention.

That waitlists for vital services dissapear.

That autism families will stop becomming the target of a huge marketing machine.

That the telltale signs of autism will be known by all...

That when a new family gets a diagnosis, the fear is less and the hope is more.

Thick skins for all.

Community.

That people will notice our blue lightbulbs, colorful balloons and puzzle piece ribbons today, and take time to ask what they mean.

And lastly an abundance of blessings, love, support and tolerance for my little boy, and all the other children on the autism spectrum.  That you all continue to shine, and amaze us with your beautiful, unique way in this world.