Yesterday I Met a Mother

Yesterday I met a mother.
All I feared, she lives.
All of my worst-case-scenarios
are her Monday to Fridays.

And I just can't stop thinking about it.
The thing is, I read about autism a lot, I think about autism a lot.
I worry about autism a lot.
And I identiy with the other parents a lot too.

I cannot help but feel a tug of concern, and a tug of the heart for all of the children on the spectrum.
When I hear of their struggles, or their mistreatment, it stings.
I think of all the things I have wanted to protect my own son from.
And it saddens me to hear from another mom, that the source of the pain comes from professionals.

It is time we rethink bullying.
We spend so much time and effort teaching children not to bully.

It's time we start teaching adults.
How not to use their positions of authority to intimidate and belittle.
How to model respectful treatment of others.

There is a sad reality that parents of exceptional children are forced to come to terms with.  It is a universially shared experience, but one that might catch you by surprise.  Not all of the professionals whose help you seek will be helpful.  Not all of the supports will be supportive.  Sometimes it is the people who are supoossed to be assisting you on your journey who end up hurting you the most.

Be selective, shop around. 
Find the people who are passionate about their careers.  Who are not just good at their jobs, but kind and good.

Because yesterday I met a mother.  And I think she needs to keep looking.

1 in 88

Okay, here we go again.

Since the new autism prevalance stats came out from the CDC the other day, I have been struggling with how to write about it.

This is now my third attempt, and I am really hoping that I will get it right this time.

I am stuck here, I know how the numbers makes me feel, but I'm not sure I can express it properly.

First, I have to be clear.  In my house, autism is celebrated.  It is celebrated and welcome.  While I certainly wish my boy had it easier, I do not in any way wish him any diferent than how he is.  Because he is perfect.  Perfection.  Lovely.

So it is hard for me to want to caution everyone about an epidemic, because to me, autism is not a tragedy.

But, it is extrodinarily challenging at times.  It doesn't only affect the person with autism, but the family that surrounds them as well.  Autism in the house means that you have to make some tough choices, have clear goals, a life-long dedication to learning and helping, and a very, very thick skin.  Autism is not for the weak.

And this is where I struggle.  I want everyone to embrace autism in this world as valid and good.  I want everyone to appreciate the beauty and genius that are part of autism.

But truthfully that isn't enough.  I know that.

Tomorrow is World Autism Awareness Day, and we go into it with this new statistic in mind.
When you see houses and buildings shining blue lights for autism tomorrow night, or when you see our awareness ribbon, or even our balloon release, I want you all to think, 1 in 88.  And then I would like you to look beyond the numbers, and to think about the many ways people are affected.

The people who have sensory systems that make the world overwhelming.
The mothers who will never hear their children speak.
The fear and worry that keeps a parent up at night.
Families paying for therapies and services.
Seeing your child for all that they are, while others can't see past their label.
Waitlists.
Phone calls.
Follow-up phone calls.
Team meetings.
Trying to find activities that your child can participate in, and enjoy.
Trying to find a work placement for your adult child.
Underemployment.
Dealing with rude people in public.
Finding clothes your child will actually wear.
Walking on egg shells.
Keeping your fingers crossed.
Feeing overwhelmed and blessed all at once.

Think about the 1 in 88 families who want to find acceptance, and 1 in 88 people who need it.

I know this post still isn't right.  I guess I just want you to know that these numbers are rising, so even if autism isn't touching your life yet, please know that it will.  Don't be afraid of it, see it for its good, and recognize the struggles of those who are working with it already.

Support us, and we will support you too. 
Learn all that you can about it, so that you can be the face of understanding that we're all looking or.

Snow Day Every Day

Last week saw a blizzard rip through town, causing all of the metro schools to close for the day.  In our world, snow days don't really exist.  We have the occassional "didn't sleep the night before" day, or "don't even bother trying" day, but the actual weather doesn't actually affect our work schedule at all. 

But sometimes you don't appreciate what you have until you see what others don't have.  This last snow day, many parents had the opportunity to spend the day with their little on a typical work or school day, right smack dab in the middle of the week.  Friends rejoiced in the ability to sit down to a nice warm breakfast together, and to hang out at home all day, the city too blustery to lead them out the door.

And I felt blessed.  Like a really lucky girl.

Because everyday I sit and eat breakfast with my children. I make them a nice warm lunch every afternoon.  I get to experience first hand the joys of watching them learn (and somedays the frustrations too!)  

I get to listen in on their play, even if at times I have to rip them apart. 

I don't have to miss them.  I don't have to wonder how they're doing.  I don't have to worry about what they're hearing elsewhere. 

In the blink of an eye, their childhood days will be but a memory.  It's hard for me to believe that now, but I know it to be true.  I feel so content to spend these days with them.  The good days and the hard days, because when you smoosh them all together, it's their childhood.

And I feel beyond grateful.  Because everyday is a snow day.

There's Something Fishy Going on Here

Bullying is all over the local media here this week.  It's all because of an incident that occured in rural Newfoundland.  If you don't want to read the article, or if you haven't already heard, a 10 year old boy went home to lunch, and came back to class smelling of the fish he'd been lovingly served at home.  Apparantly his classmates objected to the fishy fragrance and began tormenting him about the smell.  But this isn't the part that has people talking.

It was the boy's teachers actions that have caused the debate.  After removing the child from the room, she then went on to spray the boy with Febreeze.  When the boy returned home at the end of the day, he told his mom what had happened to him, contacted the media and ka-boom, we've got ourselves a story.

But I think we've got ourselves the wrong story. 

People have been weighing on in whether or not the teacher's actions were right or wrong, Whether it was a case of good intentions and poor decision-making mangled together, or simply just an insensitive action. 

But I haven't heard anyone look at the bigger issue, that when a child is being bullied, straight away we run to "fix" whatever it is that is gaining them the negative attention of their peers.  By attempting to irradicate the odor on the student, we are somehow giving justifiction to the students who were so offended by it in the first place. 

Because let's face it, kids don't get bullied about things like being beautiul, or fitting in too well.  Kids who bully hone in on whatever it is that is making a child stand out.  It might be a fishy smell, it might be a big nose, a stutter, or a developmental delay.  None of these things can be fixed with a quick spray of Febreeze, no matter how grand it makes you smell.

So how about we stop trying to make our kids blend in, stop making them smell as sweet as their friends who nibbled ham and cheese sandwiches for lunch.  Instead of working on the kids who are already targeted by their peers, let's work on the kids who are so quick to pick out someone's faults, or so quick to join in the laughter.

Because then we're teaching acceptance.  And tolerance.
And that smells pretty good to me.

A Rose by Any Other Name

The autism community is abuzz about this article from the NY Times today. 

Basically, a narrowing of what it means to have autism is being proposed.  Many who currently fall onto the autism spectrum due to their diagnosis of Asperger's or PDD-NOS could find themselves excluded.  The new criteria would greatly reduce the rate of autism, the "epidemic" would come to an end.

My child has officially had autism for three years now, but if these changes go through, he may no longer fit the bill.

My boy will remain the same boy he is now, nothing but the label would change.

But there is a lot more at stake here than a war of words.  We would lose our solidarity.  Being part of the autism community means something.  It means you know where to go to seek support or understanding.  It allows you to understand better your family member, your loved one, or even yourself.  For many, stripping away the label may mean a loss of services, supports, or understaning. 

Taking the label from a person will not strip them of their disability.

Taking away their access to services will not strip them from their needs.

Autism is real.  The surge of autism is real.  The needs of this group of individuals and their families are very real too.  Changing the criteria is not going to change reality.

Has the medical community lost hope?  Trying to diminish the truth of autism and its prevalance seems to me akin to sticking their head in the sand.  They`re confused by it, it is an enigma, but changing around words to make the ìssues seem less than they are isn`t going to change anything.

Accept it, we have.

Merry Christmas

The children are sleeping.
The turkey's defrosting.
All is right in our world, the magic and excitement of Christmas morning is just one night's sleep away.
We have decided to focus on keeping Christmas as enjoyable as possible for the kids.
And yes that means we won't get to do all of the things we might like to do, or go all the places we'd like to go, but that's okay. Christmas is best enjoyed when those you hold dearest actually enjoy it.
It's okay if your holidays are quiet and low key, it's often in our quiet moments that we truly feel its magic.
Merry Christmas to you all, may the peace of the season stay with you all year long.
Natalie

iBelieve

The iPad.  Such a little word, such a little device.




Get it? A yellow apple?

  Well, this is definately a case of good things coming in small packages.

When all the buzz about the iPad and the wonders it does for people on the autism spectrum began,  most of what I heard and read was about the wonder of the doors it had unlocked for our non-verbal population.  Suddenly this small, portable device could replace cumbersome, expensive augmented communication devices.  Amazing.

Still, I didn't see at first how helpful it could be for my own child with Asperger's.  Then I started googling.  And reading. And watching YouTube videos of it in use.  Of course some of the best reviews I read came from other autism-moms who were blogging about the difference it was making in their homes.  I was intrigued.

My own boy has been blessed enough to have an iPad.  He's had it now for a few months.  None of my research had prepared me for the magic that has happened. 

My dream is that someday the world itself will be as accessible as the iPad.

It would be impossible for me to list, or even probably recognize all of the things the iPad has done for us, but I will attempt to give a little overview, just in case there is a reader out there somewhere who is wondering if this is something you need.  (My guess is that it is.)

Touch, swipe, pinch.  If you had a child with fine motor issues, or motor-planning issues, say goodbye to the mouse.  If you can reach it you can do it.  The playing field has been leveled, game on.  Now your child can enjoy playing games without that level of frustration standing in his way. 

The bag of tricks just shrank.  The iPad is best known for its apps.  Apps are awesome, and there are about 10 gazillion and counting designed for autism.  This tiny little device is currently housing Social Stories, visual schedules, a Time Timer, a 5 point scale, Model Me Going Places....and more.  Way, way more.  Seriously.

Educational activities.  This is a homeschool dream come true!  Sight words, ebooks, mathematical games and drills, all manners of skill builders are available.  If they are not free, they are generally pretty cheap.  Aiden enjoys almost any subject more when the iPad is involved, particularily with math.  From interactive number lines, to Google earth, there seems to be no end to the ways the iPad makes learning fun, and engaging, and almost everything becomes hands on with this thing.

Entertainment and Independance.  Imagine that your child can now take control of their leisure time!  No more asking someone else to turn on something, or set something up for them, everything is easy to do.  If you spend a lot of time in waiting rooms for a gazillion appointments, as our kids tend to do, then your wait time just got a lot easier.  Even if you go the wi fi route, many games do not need internet connection, so they are portable!

We need to get the iPad into the hands of every child on the autism spectrum, or into the hands of any child who has challenges that would benefit from it.  This is the future of accessibility, and it is affordable.

Christmas is a time when many people seek out opportunities to do good work.  Many charities benefit from the benevolance of others at this time.  I have a suggestion.  Maybe you could take up a collection at your place of work, and raise enough money to purchase an iPad or two.  Contact a local autism group in your community, a simple google search can help you here, and maybe they can pass your gift on to a deserving child. 

It's more than a simple present to be opened, it's the opening up of a child's world.

I believe the possibilities are boundless.

Concern

``So, how’s he doing?``

I don’t know how to answer this question. This question I get asked all the time.

What part of his life are you asking about? Do you want to know if he’s healthy? Do you want to know how he’s doing with his schoolwork? Do you want to know if he’s eating well, sleeping well?

Maybe you’re interested in how he’s doing in comparison to other kids his age. Your sister’s son, or some other point of reference you have for a child his age.

Could be you want to know if he’s happy, if his life is a peaceful, joyous place.

There are so many facets to how he’s doing, and all of these could be placed affront a myriad of backdrops.

How he’s doing today might be different than how he was doing last week, or yesterday. How he’s doing right now might be different than how he was doing an hour ago, or five minutes ago.

I’m not even sure if you’re really all that interested. You could just be making small talk, or showing concern because there’d be a hole in the conversation if you didn’t. Then again, maybe you would really like to know. Perhaps if I took this opportunity to really talk, to really answer your enormous equestion in its entirety you would be the person to listen. (a big risk for me to take)

Are you really asking how he`s doing, or is this just a code to ask how I`m doing.

I fumble, perhaps look down, perhaps plaster a smile upon my face as I consider my response. A weighted silence preceeds my reply.

``Good, he’s doing good.``

Thanks for asking.

Unwrap Slowly

The other day Aiden hauled out his baby scrapbook, and of course, once it's in sight, I had to go through it.
It's funny the tug of loss I feel when looking at pictures of my children as babies.  Because it doesn't feel that long ago, but when I poke through those pages I'm forced to acknowledge the passing of the years.  There's no denying it.
I'm often entranced by Aiden's baby pics.  Searching for clues, staring at his face.  I'm mostly brought back to that time, when I believed I'd already met my little boy.  I guess when he was so young I thought i knew him, that all my ideas of who he would be were real, not just my imaginings.
I thought I'd already opened the gift that was my boy.  I thought that when he was born that the wrapping paper had already been torn off fully.
I was so wrong.  In reality I've been tearing away at the gift wrap bit by bit, piece by piece.  Every now and again I think I know what's inside, tease myself with hints, predictions.  Kind of like when you're fondling a gift before Christmas, certain you've figured out what's hiding beneath, only to be thrown off by the feel of something you can't quite explain.  I was sure this was a blanket, so what's that hard lump I'm feeling?  Back to step one in the guessing game.
I've always thought that a glimpse of the future would help quell all of my fears.  But maybe children aren't meant to expose themselves all at once.  Maybe none of them do.  Perhaps we let our own ideas of who they are interfere with who they were going to be.  We kind of set their course for them, almost accidentally.
So I guess I'll keep on tearing slowly, peaking inside, guessing and dreaming.
Because the gift of my boy is meant to be savoured.  No rush, I'll unwrap slowly.

Why Awareness Matters (a lot)

October is autism awareness month in Canada, and every year I change my facebook profile pic to something autism related, and write countless meaningful status updates.  I do this for the same reason I write this blog, because awareness matters.

I know that many people know what autism is.  I also know that many people understand that it is skyrocketing.  But what I really want is to help in creating a community of compassion for those affected by autism, and their families.

11 year olf Mitchell Wilson recently took his own life because of a violent attack from another young boy, himself just 12.  I, like many am disguisted by the incident.  Baffled at how another child could behave this way.  But I think we are kidding ourselves if we believe that this 12 year old was anything but a product of society.  Our society.  We have to ask ourselves how we failed Mitchell, and how we failed the other boy as well.

Holding the 12 year old responsible for his actions is one thing, but not taking pause to question why it happened, and how we all hold some responsibility would be negligent.  Because there will be other Mitchells.  There already are.

Somehow, in the busy days of ferrying our sons and daughters from soccer and hockey and back again, we have forgotten to teach our own children.  Schools may teach your children to read and write, and how to add and subtract, but it is not their job to dispense morals. 

Parents, talk to your children.  Start young.  Help them to become good, solid people.  Kindness comes naturally to children, foster it, encourage it, praise it.  Young children ae accepting, we learn to fear that which is different.  Don't let them learn this fear from you.  Racism, sexism, homophobia are not  natural to the garden of a child's mind, they are dangerous seeds that get planted.  Once they take root, they can be difficult to get rid of.  Protect it dearly.

Don't stop at teaching your child to say please and thank you. Surface manners aren't enough. Teach them compassion, selflessness, and respect.  Teach them that different is not less . (That's Temple's mama talking) Make sure that they know that how they act matters.  Teach them that you are holding them to a high standard.  Act as an example for your children.

There may not be any ribbons, trophies, or first places for having a strong character, but it matters more than anything else.  Than everything else, put together.

This October, talk to your children about what autism is.  Most likely they have a child with autism in their classroom.  But don't stop at giving them a definition. 

And my family will be grateful to you.