Monday, December 15, 2014

A Christmas Wish for Autism Parents

May your child ask for things that can actually be bought,
And not wish for items that can no  longer be got.

Let your Internet searches and postings online,
Lead to you finding that precious item in time.

May the holiday dress clothes, so stiff and so new,
Actually get worn before it's outgrew.

May your child actually sleep on Christmas Eve night,
Or at least stay in their bed while Santa's in sight.

Let friends and family remember and care,
How challenging it can be at this time of year.

When schedules are lost,  and there's no rhyme or reason,
Our kids get overwhelmed with the holiday season.

As excitement it mounts, their stress it can too,
Keeping them calm may be all you can do.

May others make efforts to help your child succeed, 
By avoiding their triggers, that's what you need.

Let you have the strength and the courage to say,
How they can be of help to you on that day.

May you still be invited to places you seldom can get,
Because people still think of you, and haven't given up on you yet.

And when you miss out on those  parties and feel so alone, 
Be reminded of all that you have at home.

Your special family may not be like all others, 
But you too are special fathers and mothers.

May your Christmas be merry and New Year filled with joy,
And love and acceptance for your girl or boy.

Sunday, October 5, 2014

I Don't Think Autism Awareness is Going to Cut it...

It is Autism Awareness Month here in Canada, a celebratory time for us in the community  I have turned my facebook profile picture into a cute little autism symbol, and everyday I post a relevant quotation.  I want to grab this opportunity to inform people about autism, and perhaps help to create a compassionate world for my son to live in  but it's not enough. And I think it is high time we switch gears.

It is not enough that people understand what autism is. It is not enough that people understand the increased rates, or even the heightened need for services and decreased wait times.  These things are important, but nobody is going to care until they recognize the humanity of our children.

It is time that we begin to demand that people with autism be treated with dignity. Basic human dignity.  Be treated as equally important in this world, and that we no longer accept alternate rules of conduct in how they are treated in the community, or in our schools.

What does it matter that I change my profile picture, if the lady at the store gives a wave of her hand and dismissively states," Autistic kids"  after a little water gets spilled?  As if to say, "what more do you expect?"

What does it matter that I change my profile picture, when it is so hard to find good community activities, where our kids are given equal instruction, not simply included?

What does it matter that I change my profile picture, when sensory rooms at schools are being misused as jail cells?

I just want to live in a world that doesn't accept less in terms of the humane treatment of children with disabilities.  A world where others, not directly affected, will stand up and demand that our children be treated with dignity.

Being autism aware isn't enough anymore, sometimes people use their scraps of knowledge to do more harm than good. 

I'd just like people to care.

Wednesday, July 3, 2013

I Used to Be Nicer

I used to be nicer.  I was one of those people who others referred to as sweet. 

I think it's a good way to be seen. I was never a pushover, but I can't help but feel that I've lost my nice.  I spend so much of my time being hyper aware of pending mistreatment of my son, that I've somehow lost the ability to just welcome the world in a more open way.

I am so occupied with my own life, that it can be hard to have the interest in other people's stories, the way that I once did.  Sometimes, shamefully, other people's problems seem insignificant and small.  I am ashamed to admit that, but it is the truth.

I get tired of feeling angry, even if it is justified.  I get tired of speaking up for my son, even though I have to.  It's not that I don't think it's important, it just can take the good out of you.  It can be too easy for me to get focused on the people who are rude, more than the people who are kind.  Simply because the rude hurts so very, very much.....  and it scares me.  Terrifies me, because ultimately this is the world I have to pass my boy over to some day, and I can't help but notice how mean some people can be.

I need a world filled with nicer people.  I need to be a nicer person too. 

Thursday, April 4, 2013

Pins and Things

Well, World Autism Awareness Day is over for another year.  I love that day, I really do.  It feels like the whole world is seeing us, reminded of us, and hopefully they given a bit of an education on this wonder that is autism.
My son, of course, asked to go to McDonalds for Autism Day.  How could I refuse? He knew it was a day of celebration, celebration means McDonald's, or moreso, their PlayPlace.
As my children were exploring the wonders of McDonald's play structure, I noticed an older boy walking happily around the base.  As soon as he covered his ears when the younger children squeale with delight, I knew he was one of our own.  He spoke to me,and I spoke back, smiled when he smiled.  An older lady who had been watching through a glass window came and sat next to me on the bench.  She motioned towards the autism pin on my shirt.  "I see you're wearing an autism pin", she motioned towards the boy, "my grandson has autism."
"Yes", I replied, " I saw him covering his ears, and thought that he might.  My son has autism too."
We chatted back and forth, the conversation was pleasant, comfortable.  The lady was comfortable, and so was I. All because I wore a pin that marked me as a safe person. 
So many of us moms sport our autism bling.  We have bracelets, earrings, keychains, scarves.  So much of it bought as fundraisers, so much of it that just calls to us.  Sometimes we wear it so others might better understand our children, and sometimes these small symbols make us recognizable to each other. 
Imagine if more people wore their acceptance.  If our communities were filled with people who wore their support for others to see. 
I am glad I wore that pin that day.  It was a poignant reminder of why awareness matters, and why WAAD is worth celebrating.

Thursday, March 28, 2013

The Eve of Eight

My apologies for the lack of posting lately.  It's not that I have stopped writing posts, it's just that sometimes I decide to keep them to myself.  When I first started this blog, my beloved boy was just four years old.   Now, he is eight, and his story often seems to be more his than mine.  I try not to blur those lines, and make sure that I write more about my thoughts and feelings than his experiences.  In honour of World Autism Awareness Day coming up on April 2nd, I thought I'd share a little something I wrote late last fall, the night before my son's eigth birthday. Natalie

The Eve of Eight

Tomorrow morning, I will awaken to my little boy being eight.  Eight.  It seems like such a big number to me now.

An eight year old.  But not the type who kisses my cheek as he sprints out the door in search of neighbourhood friends, or pedals his bike to the corner store with a bulging pocket of coins and dreams of sweet.  My eight will still hold my hand, and not be allowed to play outside of a fenced yard alone.

Autism.  Autism is a part of my eight year old.  It started out being part of my three year old, but through the mysterious passage of time, endless days turned to fleeting years.  Soon my three became a four; my four grew into five, six into seven.  And here I sit, on the eve of eight. 

I used to fear this passage of time, I waved it down like a quickly passing train, begging it to slow down, or stop.  I feared the days my son’s differences would emerge from their camouflage of toddlerhood.  I yearned for the memories of stroking his cheek, pinching his flexing toes, and squeezing his rounded ankles as an infant, when his possibilities seemed as limitless as a prairie horizon.  But fourteen month olds aren’t supposed to speak in full sentences, or label complex heavy equipment like a master engineer.  They are supposed to wave like they mean it though, and I was pretty sure I wasn’t supposed to prompt him to say I love you too.  I wasn’t na├»ve enough to live in that kind of denial.

With diagnosis came a new sky.  A scary sky, capped at the edges with a cloudy fringe, not letting me peep through, to see what lay ahead.  I was scared.  More scared than I’d ever been.  The kind of fear that soaks a young mother’s pillow night upon night, the kind of fear she hides behind a mask of acceptance.  It was a fear I could not share, because no one else could understand.

But true acceptance has come.  It just took time to take root, as all meaningful things do.  Its fragile ribbons weaved their way through me, thickening my skin, changing how my eyes see, how my ears hear, how my heart feels.  Autism has grown on me too.  I see it more as a difference than a better than or a less than.  I am in awe of my son’s unique perspective on the word, his ability to trust his own instincts.  How in tune he is.  How he can draw whatever he wants, in three-dimension, and it always looks good.

Now, as he grows older, I do not mind if he stands unmasked, and bask in the glow of the uniqueness that is him.  I cannot control or even forecast how others will react, how they will treat him.  What I do know, is that as his exceptions begin to stand out, it is not shame that swallows me.  It is a pride.  And if he finds himself spotlighted in a crowd, I would applaud him to always be himself.  I have no notions of the glorification of blending, assimilating.  I am ashamed if I ever did.

So, tomorrow, as we awaken to eight, I will walk strongly towards it, head held high, holding his hand in mine. 

Saturday, December 15, 2012

Real Inclusion

We hit a milestone today.  My little man attended his first movie at the theatre.  This my friends, is huge.  All four of us were able to go to the movies together as a family. 

It all started a few months back, when a local mom took it upon herself to start a petition to get our local movie theatre to offer sensory-friendly movies.  Basically, the movie volume is lowered, the lighting is brighter than your traditional movie, and it's acceptable for people to chit-chat, and move around if they have to.  Or if they want to.  While the theatres have not yet committed to doing this on a regular basis, they did invite the autism community to attend a movie this morning. 

Going to a movie might not seem like a big deal to some families, but perhaps that is because it's a real option for you.  A way to kill a rainy afternoon, or a great last-minute recreational option.  But to us, loud movies, darkened theatres and the need to be hush-hush aren't a real option.  So, what happened this morning was an example of real inclusion.  A commnity event was made accesssible to those who might be otherwise excluded. 

I loved that I didn't have to worry if himself failed to whisper.  I loved that the kid behind me periodically kicked my seat, and his parents didn't have to worry that I would be upset.  Or even be offended in the least.  I loved overhearing one boy say to another, "when my fish dies, I'm going to get a rabbit, and when my rabbit dies, I'm going to get a reindeer."  Moreso, the fact that he said this loud enough for all to hear, in the middle of a movie theatre, and not one person was annoyed. 

You see, sometimes it's not just the person with the disability who needs to be included.  Sometimes it's the whole family. As families, we need places to go and  things to do, but we want to be able to do them in an accepting environment.  We can do that for each other, but we need community partnerships to provide a breadth of experiences and options for our families.  We need companies and venues who are compassionate enough to make the effort to serve the whole community.

So, thank you to the mom who took the time, and put the energy into asking for this movie experience. 

And thank you to Empire Theatres for being willing to make small accomodations, that make such a big diference.

This morning, we went to a movie.  All of us, together.

Sunday, December 9, 2012

No, I Do Not Hate Autism

Just this past week I really came to realize the importance of perspective.  One truly can see a glass as half full, or half empty.

I opened up my facebook a few mornings ago, cup of coffee in hand, planning on spending a few mindless minutes prior to starting my day.  In my notifications, I saw that I had been invited to an event, it was called "I love my child but I HATE AUTISM".


The name itself gave me a visceral reaction.  As my boy was hovering nearby, I found myself blocking the screen so that he would not read those hurtful words.  The boy we have been raising to not only know that he has autism, but to be proud of it.  My immediate reaction was to post on the event saying that it a poorly named event, but after a moment's thought I decided I would "let it go".  We can't tackle every little thing after all. 

Later on, I just had to take a peak back at the page, and was surprised to see that there was a mocking tone being used towards those who had taken the time to acknowledge that they found the event name distasteful.  The offended were being treated as overly sensitive people with their heads in the clouds.  Others speculated that they must be the parents of young children, and obviously not dealing with aggressive adolescents.  Needless to see, it was at this point that I added my own two cents worth.

Others on the event page likened hating autism as being equal to hating cancer, or epilepsy.  I just don't get how they could possibly draw these similarities. You don't have to agree with me, but I don't see autism as a portion of my child. He is not a whole with one deficient part. Autism is sprinkled throughout him, integrally mixed in, where it belongs.  Autism is not a disease.  It is not like Dexter Morgan's "Dark Passenger", that needs to be segmented into a part of their being.  It is their being, it is how they interpret, and integrate into the world.

How can we hate autism?  This is when I saw the benefits of a differing perspective.  People on this page spoke of what their children should be, or could be.  They see autism as a parasite, feeding off their child, taking from them, disabling them.  They just don't seem to see their children for who they are.  Autism is not some masked terrorist who stole their child.  Your child is there, right there in front of you, if you are too busy grieving the child you thought you had, you might miss out on the chance to love and enjoy the one you have.

How could I hate autism? Autism has many faces, but for me, it is the beautiful face of my boy.  It is the golden thread that is woven in and out of every fibre that is the tapestry of who he is.  Who he was meant to be.  And to me, he is perfect.  I could hate his autism no more than I could hate his creativity, his sense of humour, or any other part of his personality. To hate autism would be to hate him. 

I love my child, and I stand in awe of his autism. 

Friday, October 26, 2012

The HowdaHUG Chair: Product Review

"Don't rock your chair!"

This was a constant chorus in our house.  The chair rocking had gotten extreme, especially while doing schoolwork.  My boy eventually managed to create a horizontal line of cracked plaster on the kitchen wall, right behind his chair, aligning perfectly with the top of his chair.  ARGHHHH!!!!!

When a child has a problematic behaviour that has a sensory-based cause, good old fashioned discipline isn't going to fix it.  We could come down hard on the chair rocking, but his body was still going to have to find a way to get that sensation. What to do???  Well, if you're lucky enough to have a fabulous occupational therapist, you ask her for advice.  Her advice to me was to try the HowdaHUG.

I, of course set  off to research it, and was instantly intrigued.  The chair is dubbed as "the listening chair" as it is known to help children settle and focus.  The simple little lightweight chair can be used on the floor, or placed on top of another chair.  It is small, portable, and user-friendly.  For children who need movement, and who crave deep pressure, this chair meets both needs.

When the chair arrived, I was ecstatic.  The kids were very interested in it. In fact, they were fighting over it!  But I have to admit, I was worried.  The thing they liked most about the chair was taking turns sitting in it, and then promptly flipping backwards.  This wasn't the calming tool I'd had in mind!  But, my fears were soon subsided.  As it turns out, the HowdaHUG has a slight learning curve.  The child needs to learn how to balance the chair, then they quickly master tipping back and forth to create a rocking sensation - without falling all the way back!  This process did not take long, but the fun of falling back certainly helped build some excitement over the chair.

We've had the HowdaHUG for about a month now.  And I can't say enough fabulous things about it.  Whenever my son grabs a book, he typically grabs his HowdaHUG too.  He loves to prop up in it to read.  He always played Lego at his Lego table, but lately he has been taking a bin onto his bed, along with his HowdaHUG.  The fact that he is using this independently, without prompting means that he legitimately enjoys it.  As for my kitchen wall?  It hasn't been chair-smashed in the last two weeks.  Success!

The HowdaHUG is a must for your sensory toolkit.  Versatile, portable, affordable, effective, and fun.  It can be used at school or at home, or anywhere. 

One day Aiden looked up from his book and said, "Mom, the HowdaHUG rocks."
I'd have to agree.

Tuesday, October 2, 2012

Notes on Accomodations

I think there may be misconceptions about accommodations for people with special needs.  We all know that some people really need them, but there are just so many people who want them, without necessarily having just cause.

Just think about those blue parking spots out there.  Of course everyone would love to have prime parking, but that does not mean that we need it! 

There is quite a difference between needs and wants.  This is something that tends to get lost in a world where it is every man for himself. 

Instead of recognizing, and appreciating that we need to level up the playing field for some people, we get resentment, and a feeling that some people get everything.

Perhaps you have come to believe that your child does not get the special treatment they deserve because they do not have a disability.

If you are in a position in your life where you cannot understand the need for allowances being made, I envy you.

Accommodations do not give one an advantage over another, they generally just give a person who is already disadvantaged an opportunity to participate, or engage.  Without accommodations being made, this might not be possible, or perhaps just an awful lot more difficult.

Do not begrudge people the assistance they need.  Do not take for yourself, a service that rightfully belongs to another.  Instead, remember to feel gratitude.  Be grateful that your body allows you the ability to park far from the door, and still get into a building.  Appreciate that you and yours are able to wait patiently in a line-up without dire consequences. 

When you are upset that there are services you do not feel that you can avail of, change those thoughts into thankfulness that there are services that you and your family do not need.

Wednesday, July 11, 2012

Something So Simple

I'm trying.  I really am.  I can see that my boy is much more ready, and willing even, to do more group activities, so we are doing more.  And for the most part, it is going really well.  You'll find us at the playground, at the beach, out there.  Trying.

But, you still hit a rough patch here and there.  It is just going to happen, good days and bad days, good mornings, bad afternoons, that's just how it is.  So yesterday, when himself hit a rough patch in the middle of the craft room at the museum, I wasn't really surprised.  The line-up to get in had been long, there were automatic flushers in the bathroom, several little things that had just Added Up.  To the untrained eye the meltdown came from nowhere, but a mom's eye had seen the little path silently laying its stones.

I quickly removed him from the area, looking for a quiet place on a nearby bench.  I was acutely aware of the tourists sprinkled about, wondering what kind of impression I was giving them of the place.  I knew my window to turn this around was small, I needed to be calm to bring the calm.  I wanted this to work.

Suddenly I became aware of an older gentlemen standing next to us, he'd emerged from the group on a neighbouring bench.  I braced myself for unsolicited advice, criticism, whatever.  It took a moment for my eyes to see what my boy saw in a flash, in his hand he was holding out a candy.  "Only if it's okay with your mom.", he said, his voice friendly, full of the peaceful tones we both needed so badly.

In a blink, the situation changed.  The candy helped Aiden get "unstuck", it pulled him from the whirlpool of the meltdown.  I thanked the man. 

But I could never really thank him enough.  For instead of seeing a child "misbehaving" he decided to see a child who needed a little help.  Instead of seeing a mom who couldn't handle her child, he saw a mom who needed a little help too.

I've been in this situation before, too many times to count over the years.  Sure your skin grows thick, but let me assure you, it is a distinct feeling of aloneness when you are amongst a sea of other people.  Others who don't get it, or who seperate themselves from it.  How do they do this?  Through nasty looks, or caustic indifference.

So thank you kindly gentleman.  For giving my boy and me the benefit of the doubt.  For not being afraid to get involved, for the gentle voice and the candy in your pocket.  Something so simple, and so sweet.