My Yellow Apple: Journeys in Parenting Asperger's Syndrome

There's Something Fishy Going on Here

2012-02-08T14:24:00.001-03:30

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

2012-01-20T21:41:00.000-03:30

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

2011-12-24T22:45:00.001-03:30

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

2011-12-13T16:26:00.001-03:30

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

2011-11-22T20:41:00.000-03:30

``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

2011-10-23T08:00:00.000-02:30

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)

2011-10-03T12:47:00.000-02:30

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.

Pop Culture's Embrace

2011-09-23T10:50:00.000-02:30

You know your syndrome is popular when it pops up on t.v. Currently we have two shows that arefeaturing Asperger's, albeit in completely different ways.

On NBC's Parenthood, we meet young Max Braverman. The focus here is on Max's parents, and mostly how they deal with tough choices they have to make concerning him. We watched as they struggled with getting Max diagnosed, planned a dreaded birthday party, dealt with the grandfather not-really-getting-it, cringed at Max's candor. When Max's dad lost it with a rude man at the supermarket, we equally cheered him on and felt his pain. Now that Max has been placed back in public school, we're all holding our breath.

Parenthood puts Asperger's in a family context. Sometimes when I'm watching I can laugh at the little things or fret right along with the parents. We see how Max benefits from a loving support system. We also see the eye-rolling of his classmates. Sometimes it is a joy to watch, sometimes it is downright sobering.
,

Bazinga!

And then, the polar opposite is The Big Bang Theory. We have non-diagnosed Dr. Sheldon Cooper, complete with his rigidity, his literalness, his brilliance. He is Aspergers to the power of a billion. Asperger's on bust. And I love it.

Sure, I like the show for all the same reasons as everyone else. It's hilarious, the characters are as endearing as they are obnoxious.

But I also like it because it is to me, an Asperger's success story. In no way, shape or form does Sheldon blend in, his autism is a fireworks display. It's why we love him. Sheldon is a success because he turned his areas of interest into a noteworthy career. He is a fully independant adult (ok, with the exception of his driver's license....) and above all else, he has an active social group.

Yes, his friends find his ways downright painful at times, but overall, they accept him for who he is, they order from the right restaurants on the right nights, they play the games allocated to each weekday. Sure, they make fun of him right to his face, but all good friends do.

I think it's fair to say that this much air time means we've made it. Our particular disability has managed to capture the attention and imagination of the world. It's nice to see something of our lives reflected back to us, in ways that can tug at our heartstrings, or grab us right by the funny bone.

The First Day of School

2011-09-07T08:14:00.001-02:30

With a quick view of my facebook homepage these last few days, I've been noticing quite a split.

Many, many people are excitedly posting status updates concerning which grade their children are starting, and many are sharing that their little ones are stepping onto that great yellow bus for their first time ever this morning.

These updates are so lighthearted, joyful, a mixture of pride, and wonderment at the quickly passing years.

And then there are the updates from people I know through the autism community. All about the preperation they are doing with their children, and their schools, praying for a smooth transition from summer into school, from one grade to another, from old teacher to new. Many links are being shared to informative articles about how best to work with your school, any and all tips that could possibly make this easier.

These updates are painful. Their writers are scared, stressed, it's palpable.

When I read these updates, I feel guilty. I have personally been counting down to the start of school. For me, that means that our parks and playgrounds can be reclaimed. Local attractions will return to the lazy pace of the school year. Our city becomes quiet, calm, in a word: accessible.

If I didn't comment on your status update, I'm doing it now.

To all of you who are experiencing the joy, and excitement of your babies moving on up through the grades, and starting the season of their life when they enter school, congratulations! They are indeed growing up fast, and it is amazing to watch how in such little time, my kids and yours can grow and learn so much. It warms my heart to see the pride you feel, witnessing the joy of parenthood can do that. Your children are blessed to be so loved.

For those of you who are facing today with a strong dose of courage, and a belly full of fear, I am astounded at your courage, and stand in awe of you. I have no doubt your stress translates to dilligence, and my hope for you is that your school and teacher see your concerns and fear as the face of the love you have for your child. Good luck to you today, and indeed all year long. May you be blessed with one of the many caring teachers out there who embrace the role of teaching, and see all students success as both their responsibility and joy.

Um....Not Quite.

2011-08-28T16:00:00.000-02:30

Mariokart's Coconut Mall

Whoever invented YouTube is a genius. Aiden has quite the pile of "Favorites" built up for himself. Whatever his latest interest is, he is able to satisfy his need through the seemless endless topics available for his viewing pleasure.

One thing he loves to watch is videos of people playing Mariokart. I think he'd rather watch people play the game on YouTube than play it himself! But, through the power of YouTube, he has discovered videos of people who have hacked the games, who have found ways to explore parts of the race tracks that we aren't meant to access. For Aiden, this is inexplicably exciting.

Now, not to make a generalization, but I've heard other parents say the same things about their children on the autism spectrum... like my boy, they prefer to explore the worlds of video games than to play them in their intended ways. Aiden could care less about winning first place in a race on Mariokart, he just enjoys looking around, seeing where he can get, that kind of stuff. He draws countless pictures of the worlds depicted there, with stunning detail, because that's how he enjoys the game.

So, he is quite interested in how these online hackers are able to get all of those cool places. Neither hubby nor I could ever be confused for computer game enthusiasts, and certainly not experts. We are both able to use techology in general to meet our needs, but the inner workings of it remain both mysterious and magical. You can imagine the dissapointment our lack of knowledge brings to our six year old. He wants us to find a "computering person" to help him with his quest.

Upon harrassment to help him explore the off-track locations in places like Toad's Factory and Coconut Mall, we patiently explained to him that you need to be able "to write code" to hack these games.

He went off on his own for a while... then returned proudly holding up a sheet of paper.
"Mommy, Daddy, I wrote code! "

So you did baby, so you did.

What You Might Not Know

2011-08-21T23:00:00.000-02:30

I'd be lying if I said I've got it easy.
When even a simple trip to Walmart takes planning, and a dose of courage.

I'd be lying if I said that although homeschooling is the best possible choice for us, that it's easy.
It is a ton of work, a ton of planning, a rather mighty big project overall, home educating your child.

I'd be lying if I said that it doesn't smart to have three university degrees, and no career.
When you spot me at the grocery store in sweat pants, possibly pulling my child away from the grimy cleaning cart, "highly educated" probably isn't the adjective that jumps into your head.

But, you might not know that although parenting a child with special needs was never planned, it is an unimaginable priveledge. A daily reminder of keeping perspective, appreciating your gifts and loving to the hilt. You might be surprised to know that even though my child may require a lot of extra work, that it is worth it. I would'nt trade one day with him for anything.

You might be surprised to know that I do not wish him any other way. That the sight of your typical child stirs up no jealousy in me. Of course I do not wish him challenges or a life filled with obstacles, but he is who he is, and I am wouldn't trade him for the world. That I'm not looking for miracle cures, just support and acceptance.

You might not know that being responsible for our boy makes me feel special too.

In Your Own Backyard

2011-07-25T14:21:00.000-02:30

The dog days of summer are here. On the beautiful days we rise with nothing before us but promise of what the day might bring. On the rainy days we ponder how to while away our time.

Summer holds a unique challenge for us. The city is alive with school children, no longer are they tucked away by day within the confines of the school walls. They are out, they are free, and they are everywhere.

Favoured playgrounds now house summer day camps. The play equipment is lost beneath swarms of climbing, jumping, playing children. The shops, the local attractions, all of the places to go are filled.

Everywhere is crowded. Everywhere is full.

If you parent a child who does not thrive in crowds, you will understand the problem. We are left feeling that there is nowhere to go. Our backyard becomes our sanctuary, the platform for all of our outdoor fun.

Finding places to go, and things to join is a continuting challenge. One I expect will only become more difficult over time. Small group activiites are hard to come by. Specialized programs are not always what you would hope they would be.

So we will wait out the crowds of the summer. When the kids go back to school, we can once again reclaim the plagrounds. I will continue my search for the right place for us.

I so often wish that the discussions about inclusion were extended beyond money-saving gestures of jamming all our kids into the one classroom. Instead we could work as a community to find places for all kids to play and to thrive. No more waiting on the side lines. No more waiting out the crowds.

Until then I will just be thankful for our backyard. And my children who play so joyfully there.

Two Years of My Yellow Apple

2011-07-21T18:42:00.000-02:30

Today marks the 2nd anniversary of My Yellow Apple.

Funny how so much can change in two years, and how much can stay the same.

This little blog has been a wonderful place for me to come to vent, reflect and feel like I am reaching out. Being heard.

Thank you to all of you who take the time to listen. Thanks for dropping by, and thanks for coming back.

Your encouragement and kind words over the last two years have been a gift.

Welcome to year three of My Yellow Apple.

One of the Reasons

2011-07-18T16:35:00.002-02:30

Out in the backyard this morning, my two sweeties were swinging on the swings and running in the grass. Revelling in the glory of a beautiful sun- filled morning.

I sit on the patio, enjoying my first precious cup of coffee, silently planning the day before me, and listening in on their back and forth conversation.

And I hear my little boy gently offering his sister a freshly picked dandelion, as bright and yellow as the sun. She couldn't be happier had he given her a new pony. She graciously accepts, thanking him 100 times over.

A small offering from a boy to his sister. A huge gift to the listening-in mommy.

And that`s just one of the reasons I love him.

A Recipe for Success

2011-07-12T14:54:00.000-02:30

Boiled Raisin Cake

I have always enjoyed baking, and now that I have two little ones, I find it to be an excellent rainy day activity. Yes, there are times they ask to bake, and I am just not in the mood, or have just finished cleaning the kitchen…but once we get going, I’m always glad I said yes. Why? Not only because the children really enjoy baking, but also because this time together offers me a wealth of opportunity to work on key academic, sensory and social skills.

It is often the goal of us homeschooling moms, and us autism moms to use every experience to our advantage, to merge play into learning so that our little ones find it hard to tell one from the other. And what better way to do this, than while whipping up something sweet? With baking, there is always a reward at the end.

How can you make baking work for your little ones? Here are a few tips:

Academic Skills in Baking

• Following a recipe is great practice in following directions.

• Depending on the age, or reading skills of your child, reprint your recipe with key words, so that your child can feel like they are reading alone. Or, use clip art, or your own fancy art work to make the recipe visual.

• Measurement skills: baking is a great way to learn about fractions. Use the standard measuring cups to learn basic fractions, or double or triple recipes to work on other fraction skills. Be creative, if a recipe calls for ½ a cup of sugar, ask your child how they could get this amount without using the ½ cup.

• Estimation: children can estimate how many cookies the recipe will yield, record their guesses, and count to check at the end.

• Skip counting: if you are making a larger batch, have children count the number of cookies by making groups of 5 or 10.

• Division: create story problems while baking. For example, you have 5 kids coming to a party, and 24 cookies. How many will each child get? How many will be left over.

• Patterning: for roll out cookies, use different cookie stampers to create patterns on the baking sheet.

Social Skills in Baking:

• Turn taking: children can take turns reading from the recipe. adding ingredients, using the mixer, fetching needed ingredients or tools, etc.

• Settling disputes: Do your kids fight over who gets to crack the eggs, or lick the spoon? Before you get into the action, have children agree upon who gets to do what. Try to let them sort this through on their own, and once the baking begins, they can work on sticking to their bargain.

• Being helpful: children love to feel helpful, not only are they helping to bake, but they can help to clean up, put away ingredients, even sweeping the floor!

• Conversation: talk about what you’re doing, ask lots of questions, reflect upon the activity, what was your favourite part?

• Paying compliments: have children compliment each other on their hard work. Maybe take turns saying what everybody did best!

Sensory Opportunities in Baking:

• Hard work of stirring stiff dough

• Rolling out dough using roller, or their bare hands.

• Kneading dough

• Get their fingers dirty! Baking has oodles of opportunities to get your child’s hands into something soft and icky.

• Lots of smelling! Experiment with calming scents (almond extract, apple, banana, butter, cinnamon, vanilla extract) or arousing scents (chocolate, coffee, lemon, orange, mint)

• Tasting

And if all this doesn’t give you enough incentive to whip out your apron and preheat the oven….perhaps the thoughts of some delicious baked goods will do the trick

Setting the Bar

2011-06-21T07:47:00.000-02:30

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

2011-06-01T18:40:00.000-02:30

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

2011-05-30T22:38:00.000-02:30

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...

2011-05-18T18:28:00.000-02:30

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!

2011-05-06T21:45:00.000-02:30

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

2011-05-04T07:53:00.000-02:30

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

2011-04-26T21:47:00.001-02:30

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

2011-04-15T09:18:00.001-02:30

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

2011-04-04T22:13:00.000-02:30

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

2011-04-02T07:25:00.001-02:30

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.

You Can't Make This Up

2011-03-13T21:47:00.000-02:30

It's all Toy Story 3, all the time at our house these days. Santa was kind enough to brng Aiden the DVD, but even more treasured is the Toy Story 3 game for his DSi. Now that's a hit. What's interesting is how he plays the game. While he does play through the game in the intended way from time to time, what he really loves is exploring the minor details of Andy's house.... and recreating them in ours.

Need an example? In Andy's kitchen, if you prowl around you'll see three pots in soak in the sink. So, of course, I often find three pots covered in suds in my sink too. The Woody character jumps on lever door handles to open doors in the game. We don't have those kinds of door handles at our house, so Aiden has been kind enough to cut some out and tape them to our boring, standard issue door knobs. In the garage at Andy's house some tools are hanging on a peg board. We now have the exact same arrangement on hubby's peg board. Are you starting to get the picture?

It's all in the details for Aiden. It's what makes him such a fantastic little artist, easily mastering the art of three dimensional drawing. It's what he enjoys, and although his preoccupation with detailed re-creation can be frustrating at times, particularitly when your furniture is constanly being rearranged whenever you leave a room, we know that it is exactly this focus and fine-tuned thoroughness that will lead to his success in the future. If he is blessed enough to work or study in an area of great interest, his results will be boundless. He'll never tire of small details, his brain is hard-wired for acting as a fine tooth comb.

But from day to day, while he is so young, his exhaustion of an interest can be challenging. And this is the part I could never make up. There's a scene in Toy Story 3 where Woody is in a bathroom, and a janitor enters with one of those big housekeeping carts to clean the bathroom. Well, guess what. Aiden's gymnastics centre has a similar cart, and his interest and enthusiasm for it now makes it difficult to keep him in the gym. He's been talking about playing with the cart all weekend.

But wait, it gets better. He has realized that you can purchase these carts, and that is what he's asking the Easter Bunny to bring him for Easter. When we explained to him that those carts were very expensive, and not really necessary for use in a home, the tears started. And the pleading, and the repeated questioning as to the Easter Bunny's intentions. The acquisition of a Rubbermaid Housekeeping Cart is now goal number one in his mind. And once he gets something in his head....

The chances that he'll have forgotten about this before Easter? Pretty well slim to none. So, what do you do? What would you do? I haven't quite figured it out yet, but I think we're oscillating between sending an early letter from the Easter Bunny explaining the unlikelihood of him bringing such a large gift, (he doesn't have a sleigh like Santa after all, just a small little basket) or....shelling out $300.

We'll see. It's like I said, you can't make this up.

Open to Change

2011-03-09T13:43:00.000-03:30

After Christmas, I felt like we had run into a wall with homeschool. Aiden was pretty tired of it, and getting harder and harder to focus. Over Christmas we had contintued on with schoolwork, I was weary of giving him a big break, afraid it would be too hard to reel him back in.

It has become apparant to me lately that the constant quest for keeping predictability and sructure in our house can render me the inflexible one. I worry about doing things differently, because I am always aware that virtually everything I do is setting a new precedent. Everything.

So, it was by accident that I solved our little slump. Aiden had been going through one of his many, many poor sleep periods. Rather than skipping the work I had slotted for the day, I decided to break it up into little manageable chunks. We did math, then I let him go play. About an hour later I called him back for language arts and journal writing, and so the day went. The next day, he asked me if he could do school the way he did it yesterday. He explained that he liked doing little bits at a time.

Wow. The fact that he was able to tell me what worked best for him is a big skill. So, that is how we have been preparing our school days ever since, and his focus in waaaaaaaay better. I really prefer laying out all of our work and getting it done, then closing the book on school for the day. This new way tends to make homeschool spread across the entire day, which I find a little more stressful. But, he does not. And that is the main thing.

I guess we are learning together what works best for us. It is still early days I guess, and our methods are sure to change as we go along.

And change....it can be good.

Reality T.V. - and me

2011-02-23T12:03:00.000-03:30

I'm not saying that I'm proud of this necessarily, but there are a couple of reality tv shows that make me quite happy. And they're not the big blockbusters like American Idol or The Biggest Loser, I've never even seen an episode of The Bachelor or The Amazing Race. I'm more of a sucker for the big family ones, the old Jon and Kate Plus 8, and 19 Kids and Counting.

I really, really like them. Like, a lot. Seriously.

This drives hubby crazy, he says the last thing he wants to hear once his own kids are in bed is another family's children crying and bawling. I can see his point...
But what really draws me to these shows is that I can relate to them. No, I may not have a baseball team number of children, just two for me, thanks. But, these shows tend to focus on how difficult, or at least, how different it is for these families to do regular everyday things.

And while these families don't have the same challenges I have, it is nice to see somewhere else, a relfection of having to gear up for activities of daily living. They have to prep to take their families out to dinner. They have to think long and hard about going on a road trip. That's what I relate to.

Moreso, large families, or families with strong religious beliefs, like the Duggars, are a subculture, just as autism families are. So I can relate to that too.

So the next time one of these shows are on, and you wonder to yourself, 'who watches this stuff?' The answer is me.

Counting Sheep and Losing Sleep

2011-02-09T14:51:00.000-03:30

Please, please, please, please tell me that there's a sleep solution I don't know about. If only there were some magical solution to our sleep crisis, I would jump up and down right now, even though I'm operating on just 2.5 hours sleep from last night, somehow, I would get the energy.

And yes, we know all about melatonin. And no, it hasn't solved our problems. Helped, yes, but solved, no.

Predictable bedtime routine? check. Nice calming bath prior to bed? check. Blanket prewarmed in the dryer before tucking in? Hot water bottle in bed prior to bedtime? Calming white noise of a running fan? check, check and check.

At this tender age, I really don't know a sensible way to handle this lack of sleep. He's too young to be let to wander the house in the wee hours of the night while we try to catch some zzzzzzzs, so his lack of sleep transfers into our loss of sleep as well. Hence my cry for help.

Is there some secret trick I haven't tried yet?

All is Quiet

2011-01-24T22:42:00.000-03:30

the house is quiet, the hum of fans
sleeping lightly, dreaming brightly
eyes dance beneath their lowered lids

and these walls hold the sounds of the day
that passed
the rules that were followed, the steps we danced
resound throughout the rooms

but from the outside, in dim light stands
a house like all the others on the street

where inside lay children asleep.

Don't Pick Up

2011-01-17T23:14:00.001-03:30

I recieved a phone call the other day that sort of shook me up a little. It was late in the morning, we were not long finished our homeschool, generally, going about our day. Usually I do the whole caller ID thing before answering, but I wasn`t quite expecting the usual telemarketers until I was just about to put supper on the table, or up to my elbows with the kids in the tub...but I digress. On the phone, a chirpy woman asked for me by name, and then informed me that she was contacting women within my age group for special female cancers insurance.

Gulp.

Not exactly the reminder of your ageing that you want to hear. And it struck me... I can`t get sick. I have way too much that I am responsible for right where I am, thank you very much. And then it struck me even harder...what if I did get sick..... gulp again.

I cannot imagine anything scarier for a mom then the thoughts of her children being without her. Oh wait, yes I can, add special needs to the equation. I am not just a mom, I am an interpreter of the world, a safe person, an advocate, and above all else, deeply committed, and madly in love!

Double gulp.

I quickly got off the phone, and I admit, while not overtly rude, I was curt and obviously annoyed. There is something about being an autism parent that makes you grow increasingly disguisted with people who prey on the fears of others.

It`s a good thing I have my New Year Resolutions still posted up around the house. I, for one, am practising living in the present. Because honestly, these days, that is about all I can handle.

Next time, I think I will just let it ring.

Here Kitty Kitty

2011-01-11T08:08:00.001-03:30

Aiden cam

Okay, explain this to me. We have had our cat Finnegan for 3 1/2 years. He is a lovely cat, the sort that kind of likes to be close, but doesn't hop up in your lap. He's more of a be - in - the - same - room -with - you cat, less of a having - his - big - furry - bum - stuck - up - in - your - face kind of cat. Perfect. (or rather, purrrrfect.)

Now, my little man was only 2 when we got Finnegan, so, now at six, it's possible that he can't really remember a time without puss. So, back to my question. Up until about 2 months ago, he offered dear little Finnegan absolutely no signs of friendship or kinship. It was as if they lived in mutual indifference. Other than the fact that he would list him as a family member, or count him amongst the people that he loved, I would have thought that the cat could have simply vanished, and he migh not even have noticed. But not now. Nope. He has now decided that not only will he acknowledge the cat, and try to engage him in play, but he has also decided that he adores the cat. He gets up out of bed in the morning, and immediately searches out his feline companion. He has taken to feeding the cat, giving him drinks of water. Images of Finnegan are replacing some of his drawings of transport trucks....high praise indeed.

Why I don`t know.

As for the cat, he is accepting his new found attention with trepidation. But surprisingly, with a huge threshold of patience. From time to time he stares at me, his big oval eyes pleading for me to rescue him. But for the most part, he takes it all on the chin.

It`s nice that he has a new interest, and I really appreciate his gentle manner towards the little creature, taking on responibility for him is also wonderful. I guess these are the reasons most people get pets in the first place.

I just can`t help but wonder where the sudden interest came from.

Another little mystery to add to the pile... but a nice one. I really do hope that his little interest persists, pets can be such a comfort. They demand so little, they have no notions of social expectations. They just love you for whatever you`ve got to offer them. Whether it be a pat on the head, or a bowl full of kibble.

Thanks Finnegan, you're a real pal.

Aiden cam again

Putting the "pet" in Pillow Pet

New Year, New Attitude

2011-01-01T09:21:00.002-03:30

Dear 2011,
Welcome. I hope that we get to be really, really good friends. I hope that when we look back on our time together, that our yearbook brims with pictures of smiling faces and joyful memories.
Natalie

Happy New Year one and all! As we turn over a new leaf, and start a new year fresh and new, I've made different kinds of resolutions this year, not so much about lifestyle as about outlook and attitude.

So here is the list of goals I am setting for myself in 2011:
1. Recognize my child's strengths and build on those. Just because our world works on a deficit model doesn't mean that I have to.
2. Accept my child's unique way in the world, help him to get the skills he needs and appreciate his many gifts.
3. Forgive myself. I will try really hard not to come down too hard on myself when I hit a brick wall, I will honestly try to appreciate my own hard work.
4. Stay in the present. Stop looking (and worrying) so far ahead. Deal with today, appreciate today.

There you have it, my goals for a happy, healthy year. I'll keep you posted.

Christmas is Coming to Town

2010-12-13T12:24:00.000-03:30

The magical Christmas is now less than two weeks away. Along with the hustle and bustle of trying to finish up shopping and decorating, many autism families are also trying to cope with the stress Christmas brings to our special little ones, and trying to plan the holidays accordingly.

Many people are surprised to realize that Christmas is anything but a time of pure joy for children. But trust me, it can be a difficult time for many families.

Sure our kids are excited about Santa's pending trip down the chimney, but they are also big fans of consistancy, and Christmas is a time when everything changes, from daily schedules, to the invasion of Christmas decorations, drastically altering their physical environment.

Here are some of my tips for surviving Christmas, and enjoying it along the way.

Plan ahead. Do your best to plan your Christmas visits, so that you can let your child know in advance where they are going, and for how long. If you are going from place to place, create a little list for your child to follow, and perhaps keep in their pocket.
Pack heavily. This is the time to test the capacity of your purse. Fill your purse with everything you need, or might need, or just might be nice to help your child enjoy themselves, whereever you are going. Favourite snacks, chewey tubes, portable DVD player with favoured videos, portable gaming system, books, iPod fully loaded...and whatever else you can think of. Sound excessive? I personally believe there is no such thing as being overly prepared.
Social Stories. Make use of Carol Gray's brilliant idea by writing Social Stories which may cover any novel situation you may be in. Perhaps one illustrating proper use of another child's new Christmas toy, how to politely decline offered foods, what to do when you want to go home, but you can't just yet....you anme the issue, and you can write the story.
Maintain normalcy as much as possible. Admist all of the hustle and bustle, try to find some things that can stay the same. Your little one may cling to these small strands of normal, and they just might get them through all the rest. For example, last year we homeschooled through the holidays, missing just Christmas Eve, Christmas Day and Boxing Day. Even if he doesn't love school work, it is a big part of his schedule. Also, you might do your best to maintain the regular bedtime routine. Small pockets of normal in a sea of change.
Keep your home sacred ground. Allow your house to always be a safe place, his or her place of retreat. Perhaps you shouldn't host the big holiday parties, or large family dinners, unless this is something your child enjoys.
If it's just too much, don't do it. Learn to say no. Not all invitations are best accepted. Show gratitude for being included, but if you think an event would just be too much, you are most likely right. Your stress will become your child's stress. Do what you can, try your best, and try your best to recognize that keeping your child's best interest in mind is bound to dissapoint others at times. That's just part of the deal.
Keep your holiday priorities straight, happy, joyful time together as a family.

I love Christmas, and fully intend on enjoying it the best that I can....even if it kills me!

Exceptional Family

2010-12-07T16:02:00.000-03:30

I'm very excited to announce that My Yellow Apple has been featured in the current issue of Exceptional Family magazine! There is a feature article on moms who blog, and I am so happy that Aiden and I are a part of it.

Exceptional Family is a wonderful Canadian magazine for families of people with disabilities. Every issue I find tons of useful information in this mag, and would highly reccomend it to other families.

I'd like to send a special welcome to any new readers who have found their way here from the magazine article. I hope you like what you see and come back often!

What a wonderful early Christmas present for me and my family....one we'll treasure for years to come.

Help Me to Remember

2010-11-19T15:05:00.001-03:30

In these hard days, help me to remember that it's been hard before. I need to remember that hard times come, and hard times go. Help me to remember how far we have come already, and that things can look up. Because sometimes, usually not for long, I can forget. And that scares me.

Help me to remember that all the choices we have made have been made with pure hearts, always with best hopes for other, not for self. When you have to make such big decisions all the time, it can be easy to question yourself, and sometimes that makes me upset.

When things are rough, I need to remember all of my blessings. I don't always want to be focused on my worries, there are many in this world who would see my worries as trivial in light of their own, and they are right. It's all the things I take for granted that are my blessings, how lucky I am to take so many things for granted. Remembering my blessings can make me feel grateful, and loved.

Help me to remember, when I'm having a hard time, that it's okay if I don't always know what to do. It's okay if I try a zillion things, some of which I thought were great ideas, and they don't seem to work. It is my effort and dedication that matter, and lots of times these don't fail me. When I can't figure out the answer, and I feel like I am walking in circles I can feel frustrated, and dissapointed in myself.

Help me to remember that when I don't know what else to do, it's always a good idea to love a little harder. It may not fix everything, but sometimes it's all I have to offer. And a little extra love never hurts.

Is there anybody out there?

2010-11-11T23:12:00.000-03:30

I read a lot. I take great comfort in recognizing my family's story in other people's stories. Perhaps it is human nature to know that we are not alone. When you face the challenges of parenting a child with autism, circumventing and obeying the host of "rules" your child lays out for you, it is hard not to feel like it is impossible that anyone else could possibly understand your life. And how you live it.

And no offense, but I honestly do not think one can truly "get this" unless they are living it. It is just too much, too all-encompassing to understand unless you are in it up to your armpits.

At this particular moment in time, I am feeling very isolated. We are going through a cycle of extreme sensory issues, and thankfully I am now experienced enough to know that these issues will cycle out again, but for now, they are very, very real. And very, very limiting.

As one example, right now we are going through an extreme aversion to food smells. Extreme. It is very hard to find things to cook that will not make him feel as if his body is under attack. Try going to the grocery store with a child who can lose all sense of decorum at the slightest whiff of banana.

At times like this, my world gets very small. There are few places I can go, few things I can do. Honestly, it is a pretty lonesome scene.

I know that there are other moms out there who honestly understand the bizarre dilemnas I find myself faced with. Moms worldwide ask each other for advice on tips for facing parenting challenges, how you get your kids to bed on time, ways to sneak more vegetables into their kids, stuff like that. But I'm looking for help solving slightly less common problems, How do I get my boy to keep the sleeves of his winter coat rolled down ? How do you get your child to tell you if they've hurt themselves? How do you explain to people what your child needs without coming off all "preachy"?

You are out there, right? Other moms do have these kinds of questions...right?

What a Wonderful Kind of Day!

2010-11-02T10:45:00.000-02:30

It's great when you don't have to reinvent the wheel. Which is exactly what us parents of children with Asperger's Syndrome do, all the time. Every time our child meets new people. Everytime we bring our child to a new environment. We have to find a succint, accurate description of our child's differences, and still try to find a way to put some focus on the good, before losing the audience's attention. We need to quickly plead them to look beyond what can appear as indifference on our child's part, or quirky behaviours, and take the time to see the multitude of gifts our child has to offer.

You know what? From now on, I'll be sharing this link. Because it is a great, child friendly description of Asperger's, and how children with differences still have a lot to offer in friendships. And how it is worth making some accomdations to have a great friend.
http://www.youtube.com/watch?v=TYgN2few-Tw

Arthur, the beloved PBS character has featured an episode on Asperger's Syndrome. The episode is titled "When Carl met George". George is a great artist, a train specialist, startled by noises, and easily upset. Sound familiar anyone? The episode even addresses special interests, without an insulting slant that our kids are "obsessed" with something. Following the cartoon, the "and now a word from us kids" section featured some real children who have Asperger's and autism.

It was well done, and definately worth sharing.

A world where t.v. shows take the time to appeal to all of its viewers, and fosters understanding amongst children to appreciate differences....what a wonderful kind of day!

It Just Keeps Getting Better

2010-10-24T17:40:00.002-02:30

Okay, so I've already dedicated two posts to the amazing Minister Kevin O'Brien, but I just have to share this! (see You've Got Mail, and Front Page News!)

This man's thoughtfulness and kind heartedness merits just one more post. He actually made arrangements,came to our house, and knocked on the door, with a transport truck! Aiden was taken for a nice long ride, blew the horn, used the CB radio, the whole deal.

He was over the moon! He now has an amazing memory to last him a lifetime.

And to think, all of this because a little boy wrote a letter!

We need more Kevins!!!!!

No Sacrifice at All

2010-10-19T11:36:00.000-02:30

I learned a lovely little life lesson the other night. I learned it where I learn so many little subtle nudges of wisdom, from a good book. I was reading The Five People You Meet in Heaven by Mitch Albom. I wasn't reading it for insight, just enjoying it as the quick, simple read that it is. But when I came upon page 93, my eyes began to well up, and my heart did too, with a refreshing new perspective.

In the story, a man who has recently dies meets five people from his life who teach him lessons and give him a broader view of the life he just led. One of these lessons is about sacrifice.

" Sacrifice is a part of life. It's suppossed to be. It's not something to regret. It's something to aspire to....Sometimes when you sacrifice something precious, you're not really losing it. You're just passing it on to someone else."

Wow. I know that my husband and I definately made the right decision in homeschooling. Not a day goes by that I am not thankful for its many, many merits. I so appreciate this time being home with my children. But it wasn't made without sacrifice. I had a career, hey, I even had an income! There is always that slight hint of panic hanging around the edges of the euphoria of homeschooling, that I gave up something too big. Something that I might not be able to get back.

I realize now that I haven't really given up anything. I'm just giving something different to someone I really love, and someone who really needs it. Yes, I offered up a career for a while, but I have recieved so much in return. My husband goes to work without having to worry about how our little guy is surviving a school day. He has gained peace of mind. I can start each day knowing that I am available to my children, to help them learn, to help them socialize, to help them be together as a family. In the big picture, we have lost nothing. But we have gained a lot.

For other families who are considering homeschooling, but may be daunted by all that has to be sacrificed to make it happen, I think we offer up an example. Homeschool families are like all others, like any other family that makes the financial decision to keep a parent in the home. Decide what is most important to you, make that your goal, and make your decisions and sacrifices accordingly. Without regrets. Aspire to reach your true goals, and be grateful.

Above all else, we have gained a happy, secure, comfortable enviornment for our boy to live and learn in.

And that's no sacrifice at all.

Giving Thanks

2010-10-10T09:01:00.000-02:30

In a few short hours I will gratefully be digging in to a lovely turkey dinner. So I thought I should take a few minutes to reflect on what I am thankful for (apart from the aforementioned delicious dinner!).
I am thankful for having a husband that I adore, and a little boy and girl who make the whole world shiny and new, amazingly at the same time that they keep my house disorganized and messy. A warm house, lots to eat, living close to most of my family, discovering homeschooling, trampolines, long distance phone calls to my sister who lives away, living in a free country, CBC Radio, Diet Pepsi, my local library and of course a hot pot of coffee on the mornings when I really need it.
And I am thankful to all of you who take the time to read my musings, thanks for coming along for the ride.
Happy Thanksgiving everyone!!!

It's all in the Wording...

2010-09-30T22:57:00.000-02:30

For me, wording is everything. I have a background in anthropology, and truly believe that the words we choose cannot be seperated from our viewpoints, understandings, and perspectives. It's kind of like how the Inuit have like a gazillion words for snow, because snow plays such a large role in their lives. Their language reflects that.

It's why I so hate the word "autistic". I don't just use person first terminology because it is politically correct, I use it so that my language reflects my thoughts, that a person comes before their label.

The latest word that is beginning to fall harshly on my ears is one that you might not expect. It's one I didn't always mind, but really irks me now. Inclusion. It's not the practise that bothers me, but the word itself. (although I do have my own view points of full inclusion, which is a different issue altogether.)

What does it mean to be included? In my mind it would involve accomodations being made so that all people could be participants. By its very nature, we have to assume that the enviornment or activity is, under normal circumstances in some way non-accessible to those being included.

When I was a little girl, my older sisters were often reminded to 'include' me in their games.

Call me a word snob if you like, but I don't want my boy to be just included. I want him to belong. It feels like if you have to be included, it sends the message that you are being pulled in from outside the group. Outsiders being allowed in. I don't like that word. I don't know a better one yet, I'm still thinking about it.... I do not see people with exceptionalities as being outsiders, I see them as full bodied, equally important human beings. Like my favourite line from the HBO Temple Grandin movie..."Different, not less."

Again, it's not that I am in disagreement with the practise of inclusion itself, I see the world as being for all, and the more we can make all places for all, the better. It's just the word.

And the wording is everything.

Front Page News!

2010-09-18T22:54:00.004-02:30

We've had a pretty exciting couple of days here! Earlier this week I received a message to contact a reporter from our provincial newspaper, The Telegram. To say the least this caught me off guard, but they had gotten wind of Aiden receiving his handwritten letter from Minister Kevin O'Brien. (You've Got Mail) I agreed to the interview, but was floored when our story was printed on the front page of the paper today! Even his sweet little pictured appeared for all to see.

While I'm not a big fan of attention, we really felt the need to agree to the story so that Minister O'Brien would get the public attention his good deeds deserved. I only hope that The Telegram's readers enjoyed their little bit of good news this morning. There are good people out there... and little boys still dream big.

Click to view full size and read

Grade One...Here we Come!

2010-09-12T15:44:00.000-02:30

There's no denying that the sweet days of summer have come to an end. If you don't believe, just peak out the window..

We officially start Grade One tomorrow, although himself doesn't really know that I actually started it at the end of June...just didn't call it by name. We did homeschool throughout the summer, just a lighter version of it, enough to keep the routine in place and to avoid the loss of skills.

It's amazing to me the difference that a year can make, and I don't just mean Aiden. I feel a lot more relaxed going into homeschooling this year, and I know what the difference is. It's no longer unknown territory for me. I know that it is great, and I know that it works. I also know a gazillion other people who are doing it, so I don't feel like quite the renegade that I did last year.

I have some goals for myself this year... Firstly, to relax, enjoy the beautiful experience of home education, because even though it is a lot of work, it is truly worth it. I know we will achieve all the outcomes, and I know there will be good days and bad days, I plan on enjoying and celebrating the good days, and taking the bad days with a grain of salt. And moving on.

Secondly, I am working hard on always letting himself know what to expect, and what is coming next. I have found that this has helped enormously with behaviour. It's the classic use of visuals, schedules, checklists, etc. Helping him avoid "not knowing" and having to worry about new events and activities. It really does take a load off.

Thirdly, I am going to let go of a lot of uneeded stress I put on myself. If an upcoming event seems like it will be too difficult to manage, I am giving myself permission to avoid it. Socially, we're doing great. Why sabotage that? I will keep pushing for social experiences, but I will find the ones that are good for us. With no apologies.

Grade one...here we come!

You've Got Mail

2010-08-28T08:17:00.001-02:30

A letter came in the mail yesterday addressed to our little man. And this letter has already made our lives exponentially easier. Perhaps a little background information is in order...

At the beginning of this summer, Aiden somehow got it in his head that he wanted to drive a transport truck. And he wasn't talking about it in that cute, "when I grow up..." kind of way. He meant now. Those of you familiar with autism know that once our kids get something in their head, it tends to stay there. So, for weeks we were inindated with the same question, "When I'm five can I drive a transport truck?" We'd try to shrug off our "no" answer to lighten the blow, but his insistence grew. And his dissapointment did too. We were being badgered, and there was no end in sight to this badgering.

So, I had an idea. Aiden and I wrote a letter to Hon. Kevin O'Brien, the Newfoundland Minister of Governemtn Services. That's right, I wanted Aiden to get the news straight from the horses mouth so that he could accept the "no" more easily. Also, I thought it would buy us a load of time, so whenever he would ask his question, we would say, "You'll have to get your letter back and see what the Minister says."

Ha Ha. I fully assumed that I would wait a reasonable amount of time and send him a reply myself, gently letting him down. But to my great shock, yesterday's post contained a letter addressed to him in a provincial government envelope. Could it be? Unbelievably, he had gotten a reply.

And not just any reply, he recieved a three page hand written letter, sighed "Kevin". And let me tell you, it was a beautiful letter, much better than the fake reply I had been planning. The Minister talked about his own brother wanting to drive a truck, and how he had grown up to make a career of being a trucker. He went on to say that he had to be 19 to get his license, but that time goes very quickly when you are young. So eleoquently he encouraged him to keep his career goals open, and that perhaps he might rather start a trucking business instead, and own an entire fleet of trucks, calling this "Something to dream for." Finally, he invited Aiden to write to him again anytime he wanted, or even to get us to bring him to his office so that they could meet each other.

I've got to tell you something. This response has touched us greatly. I think of all the letters I have written to provincial governemtn ministers, and no responses ever come my way. But I think of this man, who opened a letter from a little boy and took the time not just to brush it off, but to handwrite a meaningful response.

Thank you Minister O'Brien.

He didn't know that Aiden had autism. He just answered an innocent little boy's letter, and showed great respect for a little boy's dreams. He let him down gently.

"Mom, when I'm 19 can I drive a transport truck?"

Let's cross that bridge when we come to it.....

The Good Fight

2010-08-21T23:02:00.000-02:30

Sometimes I just get tired of feeling angry. I've learned to live with side long glaances, I don't even care if people look at me sometimes like I'm a bad parent if himself decides to lose it in public. In truth, public meltdowns happen with much less frequency than in the past, and my skin has thickened cosiderably within the last few years.

The way I look at it, I have the responsibility, as a parent of a child with a disability that affects key social skills, to help him gain those skills. And I can't do that if we never leave the house, so look out community, here we come.   I also think I'm pretty reasonable, I try lots of different places, lots of different things. Some activities/places work, some don't, but we still try. If they're not working, I don't allow him to act up and ruin it for anybody else, because that would be unfair.

So, earlier this week when I headed out with my two little ones, and things started to not go so well, I decided we had to leave. Of course, once he realized that I was in the process of leaving, my little man got quite upset. But that was okay, because he could scream for a minute while the lady manning the check out desk helped me. There was no line up, I knew we could be out in a matter of minutes. BUT....

But, said lady thought that rather than assisting me in my efforts to procure a speedy exit, her skills would be best used to attempt to intervene. Bad idea. She began telling him how to act, and when she got nowhere with him, she turned her attentions to me. Offering unsolicited, unwelcome, parenting advice. Well, gee, thanks. Now, my already upset boy has added to his frustrations the fact that some strange lady is telling him what's what, and his safe person in times of crisis (me!) is currently embroiled in an impassioned one on one with this lovely gem of a woman.   GRRRRRRR....Mama Bear's claws couldn't help coming out just a little...

So, long after we could have been gone, I'm still there... and boy is now in full meltdown mode. Thanks for all your help. At this point, the lady is irate and beyond rude, and I am livid. I left the place in tears. I go lots of places where I've had to leave, but it has been a long time since I have left in tears. This woman found just a few minutes of my daily life so utterly unbearable...and had no trouble sharing that with me. This interchange left me rattled for days. Being angry takes a lot of energy, and I know that even if I have the right to be angry, it doesn't mean I have to let that emotion ruin my day. But I just couldn't let this go.

I reported the incident to the director of the place (a place that is funded by tax payer dollars, by the way.) At first, she spoke in defense of her employee, but after a lengthy conversation she changed her tune. The more I spoke to her about the incident, and how it made me feel, I honestly think she was ashamed that it had occured.

Hubby wasn't content to leave it at that, he had seen how upset I was by the incident, and he thought it warranted a little follow up. He learned that the employee would be reprimanded, and would be required to undergo sensitivity training. Victory.

I am proud. I can look at my boy and know that I stood up for him, when he is too young to stand up for himself. It's the job of all parents, add a sprinkle of special needs, and it becomes your primary role. To make the community accessible, aware, and sensitive.

I didn't just take this on for my boy though. I can honestly say that I will never bring him through those walls again. I much prefer places that are welcoming and warm. And I've found that there are lots of them. However, I did it knowing that somewhere in this town, is another mom who wakes up in the morning, and finds her daily dose of courage to take her child with special needs out into the world. And that she too does it knowing it won't be easy. And if, perchance, her child decides it's more than they can handle, maybe somebody will be helpful to her. We fight the good fight not just for ourselves, but for all members of our special needs community.

The whole thing, although resolved, still makes me sad. I was just a frazzled mom trying to leave. A little help was all I wanted.

Beyond the Big Picture

2010-08-16T13:48:00.000-02:30

Last week I had a great opportunity to attend a training session put off by the Geneva Centre for Autism. The topic was Structured Teaching and I learned a lot of practical, truly useful information.

The presenter had all of us roll up our little Power Point handouts, and look through them like a telescope. The exercise was intended to illustrate what it is like for individuals with autism, as they tend to see the world in fragmented pieces, rahter than the proverbial 'big picture'.

This really got me thinking. While obviously an inability to see the big picture, all the parts as a whole, would present many, many challenges to a person...I can't help but see a hidden gift here. I don't know about you, but sometimes the big picture is a little daunting, and I wish I could focus in on the tasks at hand sometimes, without always looking too far ahead.

Imagine being able to concentrate all of your energies on doing one task well, or learning about one area of interest inside out and upside down, before tiring of it and moving on. Focus. To the umpteeth degree.

I'm a big picture person. I get caught up in all that lies ahead of me. I plan myself crazy at times. This comes in handy when you have to manage life for a sensory-stressed child, but it can get pretty exhausting too.

Sometimes I'd like to see beyond the 'big picture', I'd like to truly take each day as it comes, get lost in the joys and miracles at hand. Worry about the rest later. Get through what I've got to get through without seeing all that lies ahead.

Maybe we could all benefit from a small dose of tunnel vision.

Amazing Contest!

2010-08-04T09:08:00.000-02:30

I just have to let you all know about an amazing contest, by Soft Clothing...they are awarding a Back to School package of sensory friendly clothing, etc. If you have a child with sensory issues, I strongly suggest you give this contest a go! You never know....
Follow this link:
http://www.softclothing.net/products/sale/giveaways

Good luck!

Dinosaurs Are Boring

2010-07-29T12:54:00.000-02:30

Dinosaurs are boring. There. I said it. And for that matter, so is anything to do with Outer Space. And you know what else? I hated the movie Titanic.

It's okay if we don't all like the same things, keep the same interests, wear the same clothes, watch the same t.v. shows. How boring the world would be if everyone thought the same thoughts, wished the same wishes, had the same favourites, dreamed the same dreams.

I remember when A. was first diagnosed, how I held it as a real goal to expand his areas of interest. I was so concerned that my little boy, freshly turned 3, was only really interested in trucks. Looking back, it would have been a good thing if someone had taken me aside and told me to smarten up. But, I was confused, overwhelmed, and perhaps overly concerned. Unfortunately, the early intervention team did nothing to console me, they actually thought this was a legitimate goal. "Dinosaurs" became one of his "programs" and time was actually scheduled each day for him to play dinosaurs. Off I trotted to the store and bought every variety of toy dinosaur there was. Of course, once Aiden learned all of their names, he quickly lost interest.

Two years later, and two years wiser, I can clearly see what a pathetic goal this was. I have, instead, watched as he naturally developed new interests, simply by being exposed to different subjects, and the world in general.

And now, I wonder, so what if he never had developed new interests? What would have been so catastrophic about a little boy loving trucks more than any other toy in the world? Nothing. Not a thing.

It's okay if dinosaurs are boring. It's okay if your child, on or off the spectrum doesn't like the newest craze, or the topic that is deemed "typical" for their age group and gender. Who cares?! Be wary of goals that are set by others as important for your child... Let's lose the goal of having our kids blend in. Instead, let's focus on developing our whole child, and appreciating their areas of interests...letting them be windows into engaging play, meaningful conversation, and use their interests to help them develop and learn other things.

And while I'm fessing up...I might as well admit to this too. I don't watch any of the medical drama series on t.v. Not the one.

A Year of My Yellow Apple

2010-07-21T08:31:00.002-02:30

Today maks the first anniversary of my sitting down to the computer and, with great trepidation, starting this blog. I felt in so many ways like a person talking to herself in public...certain that nobody would be listening, but still feeling the compunction to express myself.

Writing this has taken a lot of nerve for me, I feel like I am wearing my heart on my sleeve. But I am glad I took the risk. I have made some great connections with other "autism parents", and I do, very much feel less alone in our daily struggles, and celebrations. I don't talk about all of our issues, but when I do share, I always feel like the listening ear is a kind one.

A lot has changed in a year. In my original post, my fear over begininning homeschooling almost had a pulse of its own. Now, I see us as a homeschooling family, very much connected in a homeschooling community. It still terrifies me, but it is doable, and we are doing it. And yes, I am very, very proud to be doing what is best for our child, even though it means a lot (like, a lot) of hard work, and many sacrifices.

I still feel like this blog is new, lots on it could be better. I see all the fancy banners my fellow bloggers have, and I have no idea how they created them. My little yellow apple pic is still slighty off centre, but I've decided that there is symbolism in that, so it's okay. I have recieved some blog awards from fellow bloggers, but I have no idea how to "pick up" my award, so I haven't. Sorry. I'm not technologically gifted, so this is where my blog may fall a little short. Oops.

But mostly, it's been a year fillled with great feedback from a lot of people. So, to all of you who have taken the time to send me a note, either here on this blog, or through facebook, I offer you a heartfelt thanks. All of your kind words have been a huge help to me in getting the courage to write these posts. To other autism parents who have taken the time to tell me that they could relate through their own feelings and experiences, you have made me feel less alone. And, to anyone who has told me that they look at kids' behaviours a little differently now if they see a child act up in public, a gigantic thank you to you, because that, is essence is the point of this blog - awareness. Our kids aren't bad, they have struggles. Thank you for recognizing that.

Now... here begins year 2 of My Yellow Apple.

A Boy's Eye View

2010-07-13T10:06:00.001-02:30

It all started as a simple Kindergarten social studies outcome. We had to examine landmarks in our community. Well, our community being St. John's, I knew there'd be no lack of wonderful architecture. What I didn't know was that Aiden would absolutely fall in love with the buildings...and subsequently many other world landmarks.

A common family activity for us now is to hop in the van, and drive around town, stopping at all of himself's favourite spots. A number one favourite is the Basilica of St. John the Baptist, quickly followed by The Kirk, the Colonial Building, Government House and the Rooms. It's actually a lovely way to spend an evening, all of us together, stopping by Tim Horton's on the way for some coffee, and going for a little drive around.

The Basilica

The Kirk

Colonial Building

I can't help but think how cute it would be if he could give guided tours of the city, he knows EVERYWHERE by name...if it weren't for those pesky child labour laws. We've exhausted the local library's books on St. John's, and we're now moving on to Big Ben, Eifel Tower, Golden Gate Bridge....the list goes on and on. I didn't realize that I would learn so much during homeschool!

It's so nice to see a new interest develop, and amazing to watch the amount of information that a bright little mind can suck up. It's also been fun to watch the many drawings of these buildings that he's been pumping out, with an amazing eye for detail. Not to mention the many renderings in Lego and wooden blocks. Future artist? Future architect? Future engineer? Who knows.......the options are as limitless as this city is beautiful.

The Chicken and the Egg

2010-06-28T09:03:00.001-02:30

School is officially out for summer now, and there are lots of parents out there welcoming the break from packing morning lunches and doing homework. But I'm willing to bet there's also quite a large group of people who will be spending their summer with their stomachs in a great big knot, because their little ones will be walking through those big heavy doors in September...and that's not very far away anymore. And they're terrified about how it's all going to work out. I know, because that great big knot used to be in my stomach.

It really makes me wonder sometimes about the very nature and practise of schools, as they are. I know that many, many people will disagree with some of my ideas here...but, they are my ideas, so feel free to disagree. It's just that sometimes I feel like the whole school set up is a disaster waiting to happen for a growing number of kids. It is designed for the child who can sit quietly, attend easily, follow directions, take part in large groups, handle the many transitions and routines of a school day, not to mention the noises/sounds of a school environment. Let's face it, this set up is perfect for the majority of kids....but for kids with differences, it is just a disaster waiting to happen.

So, what do we do? Well, let's take a quick look at what we're doing. We're educating teachers about exceptionalities, and they are working really, really hard. We're having alternate learning environments, and filling the school with "accomodations". But, aren't we having to accomodate an awful lot? Doesn't that indicate that the "typical" classroom setting, mode of teaching is perhaps not enough? How many accomodations and exceptions do you have to make before you realize that perhaps the prototype just isn't working.

Imagine if you were selling cars. For one driver, you had to shift the position of the steering wheel and the pedals. For another the seats were too far back. For another, the windshield needed a different tint. For another you had to change the way the cylinders fired in the engine. For your next customer, the radio was all wrong. The next customer simply couldn't function with the interior carpeting.... How long would you go on selling cars before you came to realize that you just needed to shift models altogether???? Can it possibly be that all those drivers are the ones with the problems??? Just a thought.

This isn't an attack on teachers, special educators, administrators or student assistants. I think that people want to do the best that they can. But let's face it, it's hard to make every child successful in an environment that just is tooooooo much, plain and simple. That doesn't mean we don't try...but it may be time to make a paradigm shift. Instead of trying to make all these kids function in school...how about making schools function for kids???? Smaller class sizes, less sensory-overload, etc, etc. The answers I do not know. But I do feel that the kinds of mass instruction and cooperation just isn't possible for everyone.

And what about our use of early intervention? How much of it is spent preparing kids to survive a classroom and school, instead of working on key skills. How much of all our work with children with special needs is spent trying to find ways to make them fit into unnatural situations. I'm not saying they shouldn't be included...it's just that maybe it's not always the kids who need the fixing. I truly believe that all kids should get from school what THEY need most, and that all kids deserve an education that works for them. Not what's easiest to accomodate and to afford.

It's a classic chicken and egg...what came first: the behaivours needed for school success, or the school set up?

You don't know me but...

2010-06-15T22:49:00.001-02:30

Today started out like many others, I had an early appointment for my son, just a regular check-in with our child development pediatrician. Aiden was okay with this, as he had been assured that it was just a "talking appointment", and knew that nothing "would get done" to him. Oh my.

We were waiting in the hospital waiting room, which, rather inconviently houses a large, run around play area, just right for getting your small child all wound up prior to their appointment. Aiden was playing, and there was another young boy there, I woudn't guess that he was yet 3. The little boy was very sweet and adorable, and obviously adored by his mom who followed him dotingly around the cursed play area. Their closeness was so apparant, and really heartwarming. It was, in a word, nice.

Next I saw the mom called over, and my heart sank when I saw which doctor had beckoned her. It was the pediatrician who runs the autism screenings. Accompanying her was an SLP, I know to be on the autism team. Suddenly, my eyes were stinging. I saw them smiling together, and talking quietly, and watched as they led the boy and his mother around the corner to a room I knew all too well. The room where they run their observations. A room my husband and I had walked into ourselves, hand in hand with our own adorable little boy, who'd just turned 3.

I was caught off guard by my reaction...it was as if I had afforded this mom a sympathy I have never extended to myself. When I was coming out of our appointment, she was leaving at the same time. I felt such a kinship to this woman, with whom I'd only exchanged a few words...but I felt like I knew her. Perhaps knew better than her what she might by facing. I wanted so badly to go to her and comfort her..let her know that it would be okay, her boy would still be her boy.

But, sadly, I also felt a kind of pity for her. I felt like consoling her for all the things she was going to have to face. For how overwhelming it all is in the beginning, and how really, its challenges never fade, they just have a way of jumping around, creating new hurdles, new obstacles... I wanted to tell her that people are going to be mean, that's she's going to have to get to know her stuff, because lots of decisions will have to be made... she's going to have to grow a thick skin, thick enough for them both.

I wanted to help her freeze time, before they called her back and gave them her judgement. "He does fall on the autism spectrum." Once spoken...takes only a few seconds...but changes everything.
I wanted to say, You don't know me, but I know you. You don't know me, but I'm your sister. You don't know me, but we're part of the same club, you and I. Welcome to our sub-culture. Welcome to being an autism mom... Hold on tight.

Of course, I never said any of these things, just gave my little boy's warm hand a bit of a tighter squeeze as we walked on past. I didn't even make eye contact.

To the Movie Theatre....And Beyond!

2010-06-08T12:21:00.000-02:30

Well, well, what do you know? It would apear that the long awaited Toy Story 3 is due to hit theatres mid-month...after years of waiting. Our little man is a big fan of movies 1 and 2, so, naturally he is excited to see the sequel. Allow me to clarify, he's excited to see with when it comes out on DVD and can be watched from the comfort of our own couch, in our own living room. The theatre....not so much.

Gentle readers, you may recall my last attempt at taking himself to a movie Up! In Smoke . It didn't go so great. But it has been almost a year since that not-so-successful movie outing, and if Toy Story 3 can't help us get beyond this block, nothing will.

So, the nature of the debate around these parts is, whether to try to, not force, but push him into going. One side of the argument being, if he doesn't want to go, big deal, don't go. The other school of thought being, going to a movie together is a nice activity, something we can all do together, something you can do with friends. It's perhaps a place worthy of getting comfortable with. What to do...what to do....

Here's what I'm thinking....wait until the movie has been out about a week, so the theatres aren't packed anymore. Perhaps I'll aim for a weekday morning, and fit this in someday before school let's out for summer, and the city is once again brimming with school aged children all week long. Just like before, I'll pack enough sweets to get us through....and hope for the best. Maybe we'll read through "Curious George goes to the Movies" and "If you take a Mouse to the Movies" a few times, to put some excitement into going to the cinemas....and hope for the best.

And if all else fails, you get a full refund if you leave within 20 minutes of the feature presetation.

It's the Little Things....

2010-05-20T18:45:00.000-02:30

It's the little things that always get you...that always turn out to mean the most, to be loved the most, and even hurt the most. Life's subtleties. Kind of like when you perfectly plan Christmas, and it ends up being a last minute stocking stuffer that steals the show.
Well, this week my absolute favourite coffee mug turned up handle-less. In short: I Was Crushed. Let me give some background...it wasn't just any old mug, it was my CBC Radio St. John's Morning Show mug...much loved, much treasured, and very, very, very hard to get. It took me about 5 years to get my hands on that little beauty, I had admired one years ago, being a big CBC Radio fan (more on that later), and have been promised by no less than 3 people that they could easily get me one. 'No trouble', I was told. 'I know so-and-so all to pieces over there, I'll ask for one next time I see so-and-so.' Fast forward, didn't ever pan out. One day, after my pining for a mug, hubby told me I'd have to suck it up and do call-ins for contests like everyone else, and earn one. He was right, once I got the idea of being given one out of my system, it only took me about 2 months to win one, granted I had to go on air and answer a question, but I did it. Caller on line 1, that was me.
Every morning, without fail, I get up, put on a pot of coffee, flick the radio on to Jeff, Cecil and Nancy and sip from my precious mug, smug all the while. It's like I was in on something, part of their routine, or rather, I guess they are a part of mine. So, in the face of my broken mug, I persevered....and kept drinking from it anyway, sure it was hot to the hand, but I would overcome.
What does any of this have to do with parenting Asperger's Syndrome? Actually, quite a lot. When I am home now, full time, CBC Radio offers me the adult conversation I crave, it's one little part of myself I've managed to secure. From the Morning Show, to Radio Noon, Vinyl Cafe, or my oh-so-treasured Q...I don't get to hear them all the time, but I do get to hear them a lot. They make me feel involved and in touch with the world outside of my house.
And more importantly, parenting autism has taught me first and foremost, that if you want something, you have to ask for it. Whether that be wait-listed services, or reasonable accomodations. So in keeping with this theory, I sent along an email to the good folks at CBC Radio...and guess what?
There's a new mug waiting for me at the front desk.
Sure, I know it's just a mug, and if I hadn't have gotten a new one, I surely would have survived. But like I said, it's the little things....

Notes from Home

2010-05-13T10:21:00.002-02:30

I've got to say, I love being home with the kids. Even on the days I think I'm going to collapse...especially the days I think I'm going to collapse. That doesn't mean that it's easy, in fact, I found that working part time in the past gave me a break, a change of scenery, a distraction, and something else to focus on from time to time. But I just know that this is where my true work lies for now, and even trying to pretend that I could step away from here, and focus on something else is just an impossibility for the time being.

It's just too hard to go to work, when you are already holding down a full time, tonnes of overtime, highly demanding position.

But it is haaaaaarddddd....like, really, really hard. On really heavy "sensory seeking" days, I am full out all the time. Even easy days are demanding, filled with the endless tasks of fetching juice, serving meals, wiping spills, making beds, and let's not forget the enormous task of homeschooling. However, recognizing the enormity of the work load is not the same as resenting it. And needing 15 minutes to yourself to prevent from overloading isn't he same as being ready to throw in the towel. This is by far, the most difficult, and the most rewarding experience of my life.

When I flip through Aiden's kindergarten work, and I see how much he has learned, and how many skills he has developed, I'm not just proud of him, but of me too. We have both worked really, really hard... and I think it's fair to say that we've both seen great results. To know that I'm putting my skills and my strengths to work for my own boy is deeply gratifying. It is worth the days where it's a battle to get him to focus, and it is worth the days when he just can't sit still, to see the net result of all the days he did manage, and all the work he has done.

He hasn't succeeded only because he has leanrned to fit the mold of schooling...although there has been a lot of that. He's succeeding because schooling is also learning to wrap itself around him, and his own individualized needs and learning style.

On the hard days, and there are hard days, I am glad to know it is me who is dealing with him. And not just dealing with him, but helping him. My patience is born from love, and my discipline always has his best interest at heart. When he hasn't slept well, and that's pretty often, or if he is going through a real serious period of anxiety, I know that he has the support and love he needs with him, and together we can face the world.

I found it hard at first to feel the pull and desire of staying at home...the feminist in me was confused by the tug of my heartstrings. But my particular strand of feminist thought believes in women having choices, and having the ability to choose what works best for them and their families.

Hooray for Creativity!

2010-05-07T21:04:00.001-02:30

Let me just begin with an apology...if you are a Facebook friend of mine..I'm sure you already know that Aiden just participated in a Creativity Fair with our homeschool association...and you probably also know that his picture won for the Kindergarten / Grade One age level!! And if you didn't already know this, you do now! His winning entry is to the right...it's a track crane for those of you who aren't as well versed in heavy equipment as I am.

Proud is not the word. It's not just that he won a prize, he didn't even know he was entered into a contest, and is a little too young to be competitive, and that is just fine with me. It's that he had a chance to shine, he participated in something that was truly up his alley, and hubby and I got to see and hear people praise his little efforts. It felt good!

We're always so proud of his creativity, and have worked hard to let him know he has a talent, and to encourage him to work on his drawings. And winning wasn't important, but participating in an event that highlighted his own particilar strength was good for him. And us too.

And now I promise to stop bragging about it....however please note that this promise expires in about 5 seconds.

His display board

Recieving his Award

Remember Me?

2010-04-22T22:11:00.001-02:30

Remember me? I like good music, Canadian literature, scrapbooking, folklore, old graveyards, sitcoms that came on after 10 p.m., going out for coffee, shopping without a direct purpose (and not just at Walmart or the grocery store), chatting on the phone.....
This is a partial list of things I used to enjoy, ways I used to define myself. And they're all mostly past memories. I know being a mom means becomming selfless, but sometimes I can't help but wonder if I'll ever have time or opportunities to indulge my old interests again.
And now is the part where I make sure to qualify that none of those things hold a candle to being "Mommy" to my sweet little ones...but still...there's a twinge...a small hint of the me that used to be.
I see a lot of people who appear to do a better balancing act between Mom and Person than I do. They can still maintain social lives, make time for themselves....all in all, they are still themselves. I am sure that their approach to parenting is much healthier than mine! But then again, parenting a child with special needs makes balance an awful lot harder to achieve.
I know there's lots of merit to the "Be sure to make time for yourself" way of thinking...but usually when I hear that, it just sounds like one more thing to worry about. Let's face it, when you have a child who often doesn't sleep, and an active toddler to boot, you're just plain wiped out. So time for myself involves getting to run to Walmart ALONE on a Saturday while hubby is home, catching a t.v. show while folding clothes, or, thankfully, yes thankfully, reading a book while the kids are eating their breakfast, or playing around me!
I'm sure all moms feel this way from time to time...just a little lost in the shuffle. And these just may be the busy, hectic days of having small children that I'll pine for in years to come.... because I'm sure I'll never be as loved, adored or needed as I am right now. My babies are young enough to view me with stars in their eyes....in a few short years, no doubt, I'll be more gatekeeper, rule maker, fun-spoiler....
And I'll be asking them to remember me just as I am now....

World Autism Awareness Day

2010-04-02T10:51:00.000-02:30

This is a day to celebrate differences, celebrate our courage in facing obstacles, and to celebrate each other.
To anyone and everyone who refrains from passing judgement, who teaches their children the beautiful value of acceptance, who see the world in a myriad of colours, and like it that way, thank you.
To all the teachers who truly love children, who work hard to make schools user-friendly, respectful environments, thank you.
To extended families and friends who are loving and welcoming, who give warnings before turning on their vacuum cleaners, who don't get insulted if we can't make it, but continue to invite, or keep a stock of straws in their cupboards, thank you.
To all the siblings who become little ambassadors, who learn to speak up from an early age, to protect, to defend,who learn tht life isn't always fair, and have to sacrifice more than they should, and who often grow up to be the world's most caring, loving individuals, thank you.
And to all the moms and dads who speak for their children, who work to improve or extend services, who make places for their children in this world, who get up and go each day, even on the hard ones, you work not just for your children, but for mine too. So, thank you.

No One Else Loses Sleep

2010-03-25T13:32:00.000-02:30

I've come to realize that no one else loses sleep about my boy. When my husband and I leave a doctor's office, or hang up a phone, us, and our life, gets placed in a folder, on a desk, or tucked away in a filing cabinet.
Access to services have long wait lists, and even when you finally get to the front of a line, times between appointments and follow up appointments can be long, lonely stretches of road. By the time you get back in an office, you have to reintroduce your professional to the child you now have...older, changed...different.
I've spent the last couple of days on the phone. I've been trying to get my follow ups in order...thinking that it just cannot be right for so much time to go by. For us to be left dealing with issues, that surely somebody must know how to help us with. As women, it often goes against our nature to be persistant, to speak out, to just try and have somebody to hear us. Somebody to help us help our children.
So, finally today, I'm feeling mildly successful. I have 2 appointments coming up...no small feat. In a system that is so backlogged, it's so important to make your presence known.
My boy isn't a client to me, he's not just one of the "ASD" kids I service...he's not a subcategory of patient. He's one of two. How could my sun and moon ever fall through the cracks? It would be impossible for me to forget that this chunk of my heart needed services...so I have to serve as the reminder. Because little boys don't make phone calls, and it's very easy to get lost in a jammed up, overworked system.
So sleep well Governemtn of Newfoundland and Labrador. Pull your blankies up tight to your chins and slumber on... But just be warned, when you arise in the morning, autism parents are going to be expecting you to work for us. Autism parents spend many sleepless nights, tossing and turning....vowing that something must get done, to rectify a pathetic, sparse, non-functional level of service. And in a province with the highest rates of diagnosis...our voices may just ring loud enough to get heard.

Both Sides Now...

2010-03-24T10:20:00.000-02:30

Welll, to say I've had an eye opener would be an understatement. Little Miss Margaret turned the big 2 last month, and I realized that the sweet little girly needed something of her own. So for the past couple of weeks I've taken her to a gymnastics class. And she loves it. Now, I'm not new to gymnastics. t just happens to be himself's absolute favourite activity, on the planet. He loves it, he doesn't do it, but he adores it nonethless. Prior to now, my experience has been registering Aiden in gymnastics, paying the fees, and then watching him play with those great big stuffed blocks while the other kids followed instructions and honed new skills. Now, that's not to say he didn't hone new skills, he'd go home and perform all of the new tricks, just not there. He was too busy. Blocks you see. Towns to build, harbours to construct, etc.
Taking little Miss was a completely different experience. When she wanted to jump on the big trampoline I felt a familiar anxiety...kids have to sit and wait and take turns on that thing. Always was a issue for me in the past...but guess what. No issues. She sat and waited for her turn.
When other kids took toys she was playing with (they're all quite young) she just moved on, or waited for it to be returned.
And at the end, when they took out the parachute, I really had to fight a familiar urge to leave just a few minutes early. Just avoid the whole thing. But, nope, you guessed it. No issues. She took a piece of parachute in her hand, and shook it when told to do so. "Make little waves." Yup. 'Make big waves!". Sure thing. 'Okay boys and girls, everybody sit in the middle of the parachute, and we'll give you a ride!". Oh no...flashbacks imagery of himself rolling onto others, getting overly excited flicked like a slideshow in my mind....but, she hopped in, sat with the other kids, and simply enjoyed the ride. Phewwwww.
So, now I know how it feels. To go places, relax, and enjoy. To realize that activities can actually be the fun they were intended to be. To be one of those parents who can just go and do things.
Except it's a bit of a farce. Let's face it, I had to pretend I was taking her to a doctor's appointment, so he wouldn't be heartbroken to know that gymnastics exists without him. And, I'm the whole time comparing their behaviours. And, I'm looking at it all now, and thinking back to when he was two, and undiagnosed, and how overwhelming it must have been for him..I took him from playgroup to playdate, to activities, with nary a thought of how stressful it was for him. And here's Margaret, joyfully joining in, oblivious to how easy she has it.
But at least I get a chance to sit and enjoy. Watch her playing so well, having so much fun. Parenting this typical child is in many ways daunting to me, sound strange? Just think about it, I'll have to step back from her, she won't need me to hover, to protect, to intervene. I'll get to sit in parent waiting areas, drop off and pick up, pack lunches and kiss goodbye. All unfamiliar territory to me.
Being her Mom is going to be different....but you know me, I embrace differences.

The Answer will Always be Yes

2010-03-13T22:03:00.000-03:30

"Mommy, do I have beautiful eyes?"
"Yes, you have beautiful eyes."
"Mommy, do I have beautiful eyes?"
"Yes, you have beautiful eyes. The answer will always be yes. You will always have beautiful eyes."

Beautiful, blue eyes. They sparkle, they light up, they often look pensive. They often squint with laughter. Beautiful, beautiful eyes. Eyes that see the world a little differently than most.
I remember when you were first born, how those beautiful eyes locked in on mine, and then moved from me to your daddy and back again. Right away we knew that those were beautiful, beautiful eys.
The times when I needed you to hear me, before we understood. I worked so hard to get you to look at me with those beautiful, beautiful eyes.
And times when those eyes look scared, overly concerned...and I just want to make them shine again.
Your eyes that scan the world, always on the lookout for unseen, but percieved dangers. Real to you.

"Mommy, do I have beautiful eyes?"
"Yes baby. You have beautiful eyes."

My Little Shadow

2010-03-04T10:09:00.000-03:30

Morning Routine: Step 1: Little man wakes at an ungodly hour. Step 2: Little man requests a glass of orange juice, any amount of trying to put this off will just result in nonstop requests and pleading... so down the steps I tawdle, see the time on the microwave in the kitchen, and try to convince myself it'll be okay, I'll manage to get some more sleep (ha!) Step 3: he drinks the juice on our bed, the second it is finished, begins begging me to go downstairs with him. Step 4: I go, as to let the rest of the household slumber. Step 5: He gets face and eyes into Lego or drawing, and I get the coffee on, and proceed to drink 2 straight cups. And then, and here's the kicker: Step 6: Looks at me with pleading eyes and asks, "Do I don't have to go anywhere today?"
So, this is where the trouble starts. This is a relatively new addition to the routine, but it is a very problematic one. If I say yes, the obvious, panic- filled follow up question is to know where we're going. Unless the answer is gymnastics or swimming....I have a sad little man. What can I do? I can't just stay home all the time. I've been working hard on always being out and about with him, and that's the way it has to be for us. I am a big believer in being happy at home, I am a homebody myself by nature. But, I don't believe in simply avoiding all social discomfort. That would definately come back to bite us!
So, here I am. He knows he has skating this afternoon, we both know he doesn't really want to go. But he will, and on the way home he'll get a 'sprinkly donut' from Tim Horton's as a reward. So I am now trying to think of something simple we could do before lunch..just to get out of the house that he may enjoy....but I'm drawing a blank! A walk, or just playing outside is out of the question due to the wet weather we've been having lately. So, I'm going to put on my thinking cap and come up with a good idea. Maybe we'll just run to the dollar store and get some new pads of paper...we're always running low on that. Or maybe we'll just go for a little drive, a change of scenery.
It used to be he'd readily follow me wherever I went. Now he's always looking for a way out.
I can get him to come along, against his wishes, but it's not the same. He's just quiet and waiting for our outings to be over. He's not enjoying them so much anymore.
And I'm missing having a little shadow.

No. Seriously. Stop.

2010-02-21T21:57:00.000-03:30

"Stop". "Don't". "I said don't". "Did you hear me?" "Are you listening to me?"
It's just been that kind of day. Actually, that's a lie, it's been that kind of an evening. I felt like a broken record, and as ineffective as could be. I feel negative and that just makes me feel guilty. Ahhhhh!!!!!
If I'm honest with myself, and allow myself some true insight, I know that what I experienced this evening was just the result of an overly-stimulating day. We had a visit to a friend's house today, which both kiddies thoroughly enjoyed. There were a couple of little tiffs, but nothing earth shattering. But it doesn't matter, because even if that went well, the whole time he was there, he probably felt socially confused and anxious. So, it just makes sense that once he's back on the sacred soils of 'home' he's going to let it all go. He's going to unwind...and God help the rest of us!
You see, when I take the time to put it in perspective, it makes sense. And my patience is restored. And I can empathize with him, like he needs me to. But when I'm in the midst of nonstop noncompliance coupled with the energy of a bucking bronco, it's harder not to feel defeated.
I can handle a lot of emotions. I can handle feeling anxious, I can handle being scared, but I cannot handle losing hope. Hope is what drives me, hope is what makes me keep trying. Hope is why I take him to so many different activities, knowing it is stressful for the both of us.
As usual, hubby came through with the sound advice I needed. I was feeling pretty low once the kids were finally asleep in their beds...and he told me it was okay to lose hope, but to try just to lose it for one day.
He's right, as usual. I'll be filled with hope again tomorrow, somehow it will spring up while I'm sleeping and fuel me. Tomorrow morning I'll look into the beautiful little face that I've been trusted with, and feel instantly replenished. Just the same, I'm glad that he could acknowledge how I felt, allow me it, and somehow let me know that it too would pass.... And all in one sentence!

Lovin' Lego

2010-02-20T16:18:00.001-03:30

As a kid, I loved Lego. As a mom, I love it even more. It is such amazing toy, and I am blessed to have a little boy who just adores it. Most mornings, when Aiden first comes downstairs, he heads right for his Lego bins. And I couldn't be happier about it!
This is a toy that was designed for kids like him....creative, and "builders" by nature. It has been so useful for him, it is a hobby that has helped him to spend quiet time with himself, he is able to sit still and work on his creations for long stretches of time. I'm not worried about lack of activity, he can burn more calories in 5 minutes than most kids expend over hours of time, so these little islands of stillness that Lego offers are a blessing. He can share this interest with lots of other kids, and it's a nice way for him to spend time with me and his Dad...it's something we can all play with together. (We're still working on making Margaret's input more palatable!)
Lego is calming, quiet play. Lego can be used to work on following directions if you work on step by step plans, or it can be 'freestyle' creating. Love it, love it, love it! I am amazed at the different things Aiden is able to come up with. He never fails to impress me with his attention to fine detail. In fact, I'm just downright proud of it altogether!
It doesn't make noise, or have flashing lights, it's just good old fashion skill-building, creative, imagination-allowing fun. Lego, you rock! Of course, in a pinch, a pack of markers and a pad of paper are pretty good too!

Music Appreciation (?)

2010-02-12T08:48:00.000-03:30

Yesterday was one long day. The morning started with a concert by the Newfoundland Symphony Youth Orchestra at the local Arts and Culture Centre. I didn't know how Aiden would like that...but in an effort to expose him to lots of different things, I thought it was worth a go. Besides, he seems to have a soft spot for some music, typically the melancholy sort. Also, he really likes the fancy red flip down seats at the centre. OK, and I admit it. I was hoping he'd be drawn to the cello, or violin, and thus awake a yearning to learn to play such an instrument. (Fast forward, didn't happen.)
However, he did sit through the entire performance without too much hassle....certainly my contraband stash of gummie bears didn't hurt. About half an hour through, he started asking to go home...so I whipped out a pen and some paper so he could doodle quietly for the rest of the show. But, when the orchestra played Blue Danube, he just stopped talking, rested his head to the side, and didn't say a word. Bingo! The moment I'd been waiting for! He enjoyed it, I know he did. Yay!!!
However, on the way home, when I asked him what his favourite part had been, he said. " I liked the part where we went home." Groan....
Later in the afternoon we had a homeschooler's Valentine's Party, where he thoroughly enjoyed himself. I was a little flustered by trying to sort through endless stacks of Valentines to stuff into boxes, but he just had fun. Which is great.
But by last night, after all the candy from the show, and all the cookies from the party....he was "on the go", and I was wiped out! So today, I might just take it easy, I was hoping that the forecasted freezing rain might cancel this afternoon's swimming lessons...but I don't think so. Hmmm...maybe I just won't mention that it's Friday!
Because honestly, the very act of writing this post, is a celebration of sitting down.

Roots and Wings

2010-02-06T15:12:00.001-03:30

A famous Chinese proverb states, "It is the wise parent who gives his child roots and wings." Sage advice, but a lot harder than it sounds. Ideally, we all want to give our kids a solid foundation, great self esteem, confidence, life skills, manners, experiences and an education that enables them to become strong independant people. People with wings.
Unfortunately, finding that balance can be hard. Because they don't just wake up one moring and grow wings. We have to give them little test flights along the way. And therein lies the hard part. Knowing how much leeway and freedom to give along the way, and trying to decide how much they can handle.
I've been trying to give himself some more freedom at gymnastics, trying to stay in the parent's waiting area, with the large windows, just a hand signal away from the coach. But it's tough! If he goes in by himself, he is practising independance, and interacting with another adult without my help. But, on the other hand, he isn't participating as much in the actual gymnastics....which is more important? I find that I'm always trying to decide what my goal is, what to prioritize.
I wonder how it might be different when Margaret is old enough to be "in stuff"....I notice how other parents can stress about having their kids enrollled in enough different activities, but they don't seem to stress about how their kids will behave or perform in all of these activities. I guess my goals are different. I don't actually really care if Aiden becomes a pro gymnast, skater, swimmer, soccer player, artist, etc....I just want him to have the skills that allow him to participate,and ensure that he gets to play and interact with his peers on a regular basis.
Maybe I should forget about the wings for awhile. Perhaps I should set my sights on a parachute, or a hang glider for the time being. Let him soar, feel the winds push him along, but less freefall.
Hmmmmm....being a wise parent is hard.

Reflections...

2010-01-27T21:29:00.000-03:30

We're now 5 months into being a homeschooling family. Our plan was to homeschool Kindergarten, and then drop him gently into grade one next year. But I feel as though I have unearthed this beautiful gem in homeschooling, that I knew nothing about. Turns out I love it. And I don't feel as though we exist in a bubble, I feel like we are a part of a vibrant, lovely community. I though homeschooling might be isolating, but it is actually quite the contrary.
I wanted to homeschool so that Aiden could get the supports he needed. I wanted to homeschool so that I could teach him in the way that he'd learn best. I really feel that both of the goals are being met, and surpassed. But now I see how homeschooling affects families. I see families where siblings are growing up together, not seperated from each other all day long. And how learning isn't seperate from family life, but a natural flow, teaching your own child math and language arts is as natural as teaching them to say please and thank you. It just feels right.
I attended an autism support group last night, and the whole meeting was everyone talking about their school concerns. For us, sending our special needs children to school feels like throwing them out of an airplane without a parachute. And I'm not complaining about special service teachers here...remember, apart from this year, I am one. It's just that our kids need a lot of support, and it's not just how they learn, it's also how they cope with the obstacle course of transitions and sensory input of a school environment, I think for a lot of us, it's their anxiety. Autism is an anxiety disorder, and our kids are happiest when they feel secure.
They feel secure at home. I'm not suggesting our kids never leave the house, I work really hard at good socialization, and go, go, go a lot. But we have a home base, this is where we leave from and go back to. this is the sacred safe place. Is that so wrong?
Homeschooling is a valid, valuable option. It puts the focus on families, and it allows for truly individualized teaching. When done within a community it provides ample opportunities for socialization and friendships. I love it. I love doing it. I feel so good about being able to put my own experiences and knowledge to work for my own child. And something that I've heard several times now from parents who have switched to homeschooling, is that it takes the stress out of the children, and out of the entire family. Because when school isn't working out well for your child, it's not working out for anyone.

2 Years Later...

2010-01-16T19:37:00.001-03:30

Yesterday was a special day at our house...it marked the 2nd anniversary of Aiden's diagnosis. We make an effort to celebrate the day, we tell Aiden that it is special, because it marks the day that we found out he had autism. Of course, he thinks autism is the best thing in the world, because he knows it is one of the things that makes him special.

He was excited to get to pick some activities...his requests were pretty simple, he wanted to build a model, go swimming, and go to a restuarant for supper. Perfect, all things that were totally doable for us. I thought for sure he would choose Swiss Chalet, his absolute favourite place to eat, (pronounced Swiss Charlet) but he surprised us by choosing McDonald's. It was just as well, Fridays being so busy, we would have had to go to a real restaurant at a strange hour to avoid crowds.

In some ways, it seems like so much longer ago that Aiden got diagnosed. I cannot even imagine now, not knowing. I felt so responsible for so much, in many ways it was a relief to realize that it wasn't all my fault, that I wasn't doing everything wrong. We were the parents who sought a diagnosis..who had a pretty good idea going in that he would land on the spectrum, so his diagnosis didn't come as a surprise, more of a confirmation.

I've certainly learned a lot in 2 years..attended conferences, real a gazillion books, some better than others, I've met some great families, and many beautiful children with autism. My life has taken on a whole other focus as well, issues related to special needs are often at the forefront of my thoughts, I see the world and the community in terms of accessibility, and acceptance. To borrow a line I read from a book..."all of my whens turned to ifs." That just about sums it up. I no longer look torward the future with a certainty of what it will entail..I have no idea. Only time, accompanied with a lot of hard work will tell.

But I will tell you this..sitting down at McDonald's last night, with my wonderful little family, I almost took it for granted that we could sit peacefully and enjoy a "meal" together. This time last year it would have been harder to manage behaviour wise...2 years ago...I just wouldn't have went..so maybe some of that hard work is starting to pay off.

For 2 years now we have been calling autism by its name at my house. It no longer catches on my tongue..it's as much a part of my family as Aiden is. So, we are to celebrate the anniversary of its grand entrance. Autism, you are difficult to deal with, you make life unpredictable and scary at times, but, you are a big part of someone I love, so you are welcome here.

Happy New Year!

2010-01-02T20:38:00.000-03:30

There's just something about a fresh start that makes you feel all good inside. Hopeful even. For me, it's a bit of a motivator, a chance to do some planning, and let go of some baggage. Tabula Rosa. A new year...a new decade even.
I'm enjoying a quiet Christmas this year (yes, STILL enjoying it..it's not over until the 6th in my heart). Leading up to Christmas I was feeling pretty down, it was just very stressful to try to figure out how we would survive the holidays. The family get togethers, the crowds, the expectations... Hubby and I came to the conclusion that we do deserve to actually enjoy the holiday, so we forewent the big family dinner, and cooked up own bird here at home, just the four of us. I did miss being with everyone, but I didn't miss the stress of it all, and definately feel like we made the right decision. We were relaxed and happy together...what more could I ask for? Holidays are hard, because they're a break from the norm, the routine, the predictable...so it is stressful for Aiden, which can make it stressful for us all. So thank you to all family members who let us off the hook this year...I know we were welcome, and I appreciate that most of all.
I don't know what 2010 has in store for us. I'm pretty sure it will include another year of homeschooling, because that is working out so well, I'm not willing to give it up. Maybe Aiden will begin self-regulating a little better this year...maybe group lessons will go a little smoother, or maybe I'll learn to take it a little better on the chin when they don't.
Little miss Margaret will be 2 next month, so I'm curious as to what will hapen to the family dynamic as she starts to become a more autonomous member...
So here's to 2010....please be kind to us. We are currently operating at maximum capacity, and I hope that any surprises will be plesant ones.
And to all my readers....much happiness to you and yours, with blessings the whole year through.

A Letter to Remain Unsent..

2009-12-21T20:56:00.000-03:30

Well it's been a while since my last post. I've had a dilemna. I had a great urge to write about a rather unpleasant experience that I had, but I do try to keep the feel of this blog positive. I do not want to come off as bitter or angry, so time to had elapse to take the sting from my wound. Because, bitter, and angry I was.
So, after a week of thinking about what I should have said to the woman that gave my son the look of death mingled with disguist during a recent trip to the hospital... I have crafted instead a letter which will remain unsent. Written many times in my head throughout he past week...I've decided to edit out some of the nastier, not healthy for anyone parts...
Dear __________,
You I am sure will not remember the incident last week at the hospital, when, seconds from the exit, you overheard my son become very upset. Nor do you care why he was upset, or have any idea about the multitude of factors that led to his crying and shouting on the hospital floor. However, in exagerated looks meant to be noticed, you conveyed to your accompanying daughter your disgust at the behaviour you were being forced to witness. Meant for the terrible parent of this screaming child to see. Next, pausing with your hand on the EXIT door, yes, you were mere seconds from freedom of this event, surely you could have sucked it up and endured,instead you looked over your shoulder, and shot my little 5 year old a look that screamed your disguist, your intolerance, your lack of empathy, and certainly your lack of awareness as to his exceptionality.
Why did you do this? Perhaps to prove that this is behaviour that YOU would never condone..oh, my goodness, no. Perhaps you thought he just needed a stern look to make up for the oh so apparant lack of parenting. Or, perhaps, you're just not a very nice person, and you feel the need to busy yourself with other people's lives, assuming that your opinion of a situation is of any relevance or importance.
Maybe you just take for granted that you have a typical child, and never had to endure these moments. But you see, something strange happened. Instead of being embarrassed by Aiden's behaviour, I was embarrassed by yours. Imagine!
You see, you didn't look at me, you were too busy throwing daggers into a small boy's face. But, me, I saw yours. And I know you, and you know me. And I know what you do for a living, and I certainly know that you would be expected to be a person of tolerance, and patience.
So, I 'll keep your name withheld, such gossip would surely feel good momentarily, but Iwould come to regret the pettiness of it all prety quickly.
And, besides, I try to be a model of civil, respectful behaviour.
And, who knows...I don't know the events that led up to your appalling behaviour either. Perhaps you just received terrible news..perhaps something horrible is going on in your personal life. That is why this letter will remain unsent.
Natalie

And now, perhaps after a week of brooding, I can move on.

Little Boy Lost

2009-12-08T20:06:00.001-03:30

One Nova Scotia family is currently living through every family's worst nightmare. They have lost their precious 7 year old boy. Little James Delorey followed his family dog from his backyard, wandered into the woods, and after surviving 2 long, cold nights, was not able to bounce back from his injuries. Poor little man.
We feel sad for any family that endures that which we cannot even imagine. But, for autism parents, the scary thing is, that this is one tragedy we can imagine. Our kids wander. Our kids will open the door, and walk right on out. Without the casual shout over their shoulder of, "Mom, I'll be in the yard." Many children, like little James cannot even speak. Others, like my own, have full speech, but hampered communication. And hampered understanding of what information you need to share with your family.
This little boy's passing jolts the entire autism community. All of our 'what ifs" have been confirmed. Your child can get lost. Your child may not respond to their called name. Despite all of our best efforts, horrible things can still happen.
The news of James's passing came to me right at the heels of a rather embarrassing public meltdown. I was agitated, I was annoyed, I was exhausted. I was feeling defeated. And then I heard. And perspective came to me hard and fast. I'll hold both my babies a little tighter tonight, and kiss the tops of their warm little heads just a few extra times. And I'll be thankful for them.
Little James...my prayer for you...a peaceful rest my boy. A country cries for you.

The Mom in Me

2009-12-02T21:37:00.000-03:30

I'm not the Mom I thought I would be. Life with my young children is not at all how I envisioned it. How I dreamed it, and played it out since my childhood games of dolls, and countless hours "playing house"..
I'm crafty, I love to bake, I'm happiest when I'm at home, I enjoy family field trips, and celebrating all seasonal activities. All of these things seemed to me like really good Mommy ingredients.
But, as it happens, these aren't things you can do on your own.
Don't get me wrong, I try. I try really, really hard. But it isn't how I thought it would be.
My kiddies do enjoy baking, and they certainly enjoy doing crafts. But it's not the happy go lucky, all fun, no hassle activities I thought they would be. It's really hard to do a highly structured craft, or play a rule-ridden board game with a little boy who has all his own ideas. Al the time. There comes a point when it just stops being enjoyable, and you find yourself expending sooo much energy on getting him to follow the directions, and to stay focused on the activity, that it's not fun anymore. It's work. Plain and simple.
And all the things I thought we'd do together! I never dreamed how hard it would actually be. The library....maybe not. All that keeping your voice quiet business is sure to cause some issues. The Museum...all that no touching, just looking is bound to cause a fuss. Family get-togethers...where all of the adults congregate and chat, and I'm stuck with all the kids on supervisor duty. Becuase it's different for me, I can't trust that everything will be fine...because everything isn't fine all the time. Stuff happens, and I've got to be there. Simple lessons, I have to find ones where the parents can participate, or at least attend, because he's just not going to just follow along with the group. If he finds something more entertaining, he'll be oblivious to the fact that there even is a group.
However, I still do things. We still go lots of places. But it's different. I'm broadening his social sphere, I'm exposing him to things, I'm making sure he gets lots of practice in different environments. In short, they're not just field trips, they're therapy.
And our days at home together aren't the glorious sun-filled hours I envisioned they'd be. Some days I think I'm going to stroke...there is just so much to manage that I can't help but feeling a little defeated. Like, for example, at 3:30 this morning when he came creeping into our room, and it was painfully obvious that he was up for the day. And that was that. He's not the kind of kid who's going to play quietyly in his own room while we slumber on. Not going to happen.
Parenting is harder than anybody believes it would be. But sometimes I'm still shocked that I have a child with behavioural issues. Me! I was such a good, compliant kid myself. I thought I'd do everything right, and that my children would be perfectly behaved. Ha. How arrogant of me to think myself immune. I'm not immune, I'm no better than anyone else, and my chances of having a special needs child were just as high as anyone else's all along. I just didn't think it would happen. I guess I didn't think that would be fair. Fair!!! Another illusion.
So I'm not the Mom I thought I would be. Truthfully, I'm better. It's not as fun perhaps, but it is definately meaningful, and when you are rewarded by hugs, kisses, happiness, small signs of improvement, it's all the sweeter. I get it now. It's not about the children you thought you'd have. It's about the ones you hold in your arms. And whatever they need, whatever they enjoy, that's the Mom I'll be.

The Sisterhood...

2009-11-18T10:56:00.000-03:30

It's funny how it all works. You have friends who have travelled through time and space with you, and those relationships are meaningful, and their depth is born from years of time spent together, and common experiences.
And then, you can meet some people now as an adult, and instantly feel bonded because they share your biggest struggles, your biggest fears, and your biggest hopes.
To be able to sit down with other autism moms....and not need to hand out dictionaries so that they can follow your conversation...to know people who speak your language... Occupational Therapy, Speech Language, ABA, A-DOS, proprioceptive, vestibular, hypo, hyper, ISSP, wait lists, therapeutic listening, fidgets, chewy tubes, sensory integration, visual strategies, time timers, Z-Vibes, 5 Point Scales, social stories, power cards, and on, and on, and on.
To know other moms who have trampolines in their living rooms, and inddor swings. To be able to have a conversation where other people can say, "Oh my God, it's the same at my house", or "that's an issue for us too!". To know other people who understand that birthday parties are a hellish experience, ones to be endured, but certainly not anticipated, or likely even enjoyed.
It's an instant connection in many ways, we are drawn to each other like magnets. Once we find a way to get together, you almost have to pry uis apart. Everyone wants to know other people who get it. Who understand. Who live what we live.
I am so grateful for all of you, wether I've met you through this blog, the Autism Society's facebook page, standing on the side of a soccer field while our kids "play" soccer, in the swimming pool, at a conference, a support group, or just by acident. Just knowing you are all out there makes my life just a little bit easier.
So, thank you to the sisterhood of autism moms.... everyday we move mountains. Together, we might just manage to keep each other sane!
And Allison, if you're reading....this one's for you.

The Sweetest Thing

2009-11-12T07:53:00.000-03:30

I could eat him up. Honest to God, Aiden is so sweet sometimes, that I have to fight an overwhelming urge to bite right in. It's the little things he does sometimes that make him so irresistable, so moreish.
Like the way he'll take his sister's hand when we're walking. Or get upset if she doesn't come with us somewhere. Or always keep her close, herding her like a sheep dog when we're in a store. Gorgeous. He lovvveeeessss her.
Or the way he'll build an elaborate craft, or indoor construction site (usually something I may typically ask him to tidy up) and claim that he made it for me. "Do you like it? I made it for you Mommy. Do you like it?" ...please..what kind of Mommy would I be if I didn't just love it.
But what really gets me, is the way he can be so sensitive. How a slow, quiet song can make him cry. Not a big gulpy, I want my own way cry, but a gentle, lower lip quivering, eyes instantly filled with tears little cry. As if he is just overtaken by an emotional response. Kills me. Or how a big upset can only be cured by track #8 on my Hey Rosetta! CD.
Yesterday, during a quiet moment together, telling him as usual how much I adore him, his little lip started to go. It only lasted a little second, and he was back to him boisterous little self. But it slayed me.
You see, he might not express him emotions like all other kids, but, rest assured he has them. There's no child more loving, and more appreciative of love. More addicted to the warmth of his family. ...and he's ours. So, in many ways, even though we're a family with a lot of challenges, we're also a family with a lot of blessings.

A List of Things...

2009-11-04T17:34:00.001-03:30

I've been thinking lately about things that could generally make my family's life easier. Things I wish the public at large could understand and implement in relation to Asperger's / Autism. Turns out it is quite a list, infinite...but there area some little things that could be considered to be my top 5 wish list. (insert throat clearing noises here....)

Eye Contact: If you know that my boy has autism, you may be tempted to really fight for eye contact while speaking to him. I recognize that it is an important communication tool for you, but it's not for him. He'll make it if he feels like it. He'll make it if he wants to. He's likely to make it if he is comfortable. If he doesn't, that's okay. Eye contact can be physically uncomfortable for peole with autism, kind of like asking you not to blink. And, eye contact can be overated.
Repetition: Most people are not aware, that many people with autism have an auditory processing delay. This means that it literally take s a moment for what's been said to sink in. So, please wait appropriately. Saying his name 5 times in a row will just slow down this process, confuse the system, and he won't even bother trying to listen, because he's already learned to tune you out, you are overwhelming. You are confusing. Similarily, and ohhhh so importantly, if we are speaking to him, please do not misinterpret this delay in response as disobedience, and feel the need to join in in with what we're saying. This leaves him confused...and us annoyed! (sorry...but true)
It's all good: This one is for professionals who work with children with autism. Yes, there are many social skills our kids need so that they can make friends, take part and get along with others. But, please do not have your goal as trying to "fix" everything about our kids. It's okay that Aiden has Asperger's. It's okay that he is different. Not everything different should be fixed. Not everything different is wrong. So, professionals..pick what skills need to be developed, and which behaviours need to be modified. And then, learn to appreciate, and respect diversity. (whew...that felt gooooood.))
Relax, Enjoy: If you're around my boy, or any other person with autism, just relax, and enjoy the experience. Like you would interacting with any other little boy. Not everything is about autism. (I'm still working on this one myself.) Don't feel like you have to be cross referencing his behaviours with something you have heard about, or believe to be true of autism. Just enjoy his company, it's okay to be interested in him, because Asperger's Syndrome is really interesting. But, he's just a boy, and he deserves, and needs casual, enjoyable interactions. So, just chat, hang out, enjoy. Remember, autism is only part of a person.
Public Meltdowns: If you read my blog, or know anybody who has a child with Asperger's, then you know that meltdowns happen. They come fast, and they come furious. They don't always come often, but their magnitude makes up for that! So, if you see a child melting down in public, please do not pass judgement. You have no idea what has happened, and you may not even understand that this is not something that can be rationalized. This is no time to try to "talk some sense" into the kid. And generally, strangers getting involved can definately exasperate the situation. So, no matter what you're thinking to yourself about the kid's behaviour, or the way the parent is handling it, please do not pass judgement. This is a minor inconvieneince in your peaceable existance, and a big part of our family life. So, please, be tolerant for a few moments, because we have to practise tolerance and patience more than you could imagine. However, a kindly smile would not be construed as interference. And it might feel nice.

H1N1 Fear

2009-11-03T08:53:00.000-03:30

Honestly, there's always something to worry about. H1N1 seemed like a distant threat...until it came to town. People are getting sick here now, and the kids haven't had the chance for the 2 weeks post vaccination to kick in. And, you know what? I'm scared. Terrified actually.
Both of our little ones fit into the high risk category because of their age. Margaret, at 20 mos, is healthy with a great appetitie, so I feel like if she gets sick, she has some reserves to see her through. Yikes. However, I cancelled a regular clinic appointment for her today because I don't want her around anybody who may be sick. She is my little baby after all.
Now Aiden...he has had no appetite for a few weeks now, and he has definately l;ost a few pounds. Pounds he really could not afford to lose, so I'm worried about him. I'm trying to fatten him up, going so far as to buy Boost Plus Calories, to try and put a little meat on his bones. Because, seriously, if he gets sick....I am afraid it could get dangerous fast. Even though he is healthy, he is just soooo small, and most likely low on iron too. Not from lack of trying to feed him mind you. He just doesn't seem to understand the eating thing. Is annoyed by the time it takes up when people stop to eat, God forbid, a meal. To me, this sounds like a dream! But not when your little boy is getting smaller and smaller in front of you, and surrounded by healthy food, with healthy meals cooked daily.
So, either I've fallen for the media hype, or it's the fact that my sister and kiddies are feeling suscpiciously swine fluesque that my back is up. And I'm trying to get Aiden's weight up. I don't have time to get sick, or the energy for my hubby to get sick either. It is crazy, and scary, and one more thing to worry about.
It's always an arse or an elbow my Nan used to say...(translation: there's always something.)

A Little Good News...

2009-10-23T09:29:00.001-02:30

Well, a few good things have been happening around here lately. And no, sleep, unfortunately isn't one of them! ( not to dwell, but Aiden was up until 1:30 a.m. last night, and Margaret started crying at 4 a.m.)
But, a new support group for mommies of school age kids was started up by a local parent, and WOW! We are all having very similar experiences, and most of the kids are older than himself, so I'm getting a heads up on how long I can expect certain things to continue and so on. Plus, they're really nice ladies, so that's an added bonus.
And, very exciting for me, a letter I wrote to CBC Radio's The Current was aired yesterday morning. So, I was very happy ..perhaps giddy from recent sleep deprivation...but feeling good nonetheless.
And, then, Aiden went to an Arts and Crafts group held with local homeschoolers...and he had a ball, was chatting away with the other kids, and just generally giving me hope for the future.
And I'm all about hope.
(and sleep too....but like I said, not dwelling.)

Sleep, Be Not Proud

2009-10-18T23:23:00.000-02:30

Okay, hubby says I should stop complaining about it, and just accept it as our lot in life...but I am sooo tired! I was designed to get my 8 hours a night... so this recent period of insomnia that Aiden is going through is draining me. Hence the recent lack of posts. Too tired. Same reason my laundry piled up, and the kitchen floor is rotten. Tired. Neeed Sleeeeeep. ZZZZZzzzzzzzzzzz.
I remember when Aiden was a baby, who never went to sleep for more than 45 minutes at a time. At first everyone consoled me that breastfed babies wake a lot. Well, to be honest, everyone I knew with babies was breastfeeding too, and their little ones slept...like the proverbial baby. Then I was told that he'd grow into sleeping through the night. Also a lie. I think you either get a sleeper or a non sleeper. Little miss Margaret is a great sleep-thru-the-nighter...unfortunately, her big brother isn't. He's always gotten up once during the night, but for the past couple of years, he's generally gone right back to sleep. Then, the past 6 mos. of so, he's taken to waking up, and going back to sleep in a few hours time. If at all.
It's now almost 11:30 p.m., and the little boy has finally closed his eyes...after 3 and a half hours of my waiting with him for sleep. And now it's time for me to close mine....because he may be waking up soon.
So, my awareness message for tonight...autism/Asperger's greatly affects sleep. And behind every sleepy child, is a sleepy parent.
Night night.

Happy Thanksgiving!

2009-10-11T06:33:00.001-02:30

I'm thankful for:
family, friends, warmth, feeling safe, the odd few minutes to myself, good music, Barney, being in love, sticky kisses, shopping, good books, and the chance to read them, chewy candy, having more patience than I knew, those warm fleecey sheets from Costco, my great fortune in being born Canadian, having my priorities straight (I think) and a hubby with a gift of giving me perspective when I need it.

The Social Question

2009-10-06T14:26:00.001-02:30

The number one question I have gotten about my decision to home school, is, I believe the number one question that every home schooler gets. But what about the social?
I think there's a prevailing belief that just by nature of children being surrounded by their age mates, that they're being socialized. I can see that this belief is usually the case, for typical children. So, it stands to reason that these parents of typical kids would think this way.
But, I gotta tell you. Having worked in schools, and having been a student myself, don't you realize that for lots of kids, school is a very negative social experience? Being bullied is a social experience, but it's one I think kids could do without!
Once people hear the word autism, they assume that kids need to be socialized. I couldn't agree more. But socialization is more than being in the room. I feel that these kids, my boy included, needed to be helped with their socializing. Just throwing them to the wolves, without the skills and supports they need would be disastrous!
So, Aiden's not going to school. But, he is learning, and learning a lot! So far, home school is in every way the right choice for us. He's developing lots of great skills, and accumulating knowledge in a way that wouldn't happen in a regular classroom.
AND, he's getting the social aspect in a way that works for him. He's signed up in music, swimming, and arts and crafts, Plus he'll be doing drop-in skating and bowling during the week. So, the social piece is there. But, so am I. I'm not sending him off to fend for himself, or to drift away from the group, or to act in inappropriate ways without being corrected. He has my presence and suppport, and he needs that.

So, what about the social? There's social.

Awareness

2009-10-01T22:35:00.000-02:30

Well, it's October 1st, so Autism Awareness Month is just begun. Sometimes I can't help but wonder what our goals are in this. Don't get me wrong, I am all for Autism Awareness, and like to think that through my blog I help raise awareness about autism. But, my aim is not just to make people aware of how widespread, and crazily common autism is. It's not that I don't think that's important, it's just that I can't help but feel that people aren't too concerned about it until it affects them directly. None of us think these things are actually going to affect our kids...until they do. I'm no different here from anybody else. Due to my career, I was interested in various exceptionalities prior to my boy's diagnosis of AS, but I wasn't out waving flags. It's just human nature I think.
Perhaps the goals of autism awareness should be for the public to understand what autism actually is. Maybe the challenges of autism families should be better known, so that the public would have more empathy in general. And so that society and governemts could know which supports need to be in place, and actually put them there.
Maybe we need to change the way we think about autism. Yes, it's a disability, but when soooo many people have it, it has in many ways become a new way of being in this world. So, maybe people need to be aware of, and accept that. Maybe people need to challenge the notion of "normal"...how's that for awareness?
I mean, the truth is, even the autism community can't agree on what awareness should look like. Just look at all the controversy Autism Speaks sparks! I'm not positioning myself one way or the other, but they certainly draw attention to the fact that not everybody agrees on what our message is!
I know what my message is. At the last event we attended at the local autism society, I was personally just struck by all these little boys. Everywhere you look, all these little boys. All of them working so hard to deal with their ways of being different in an intolerant world. All these little boys, so loved, yet so challenging, and so joyous to their families.
We do need awareness, but what we also need is the understanding and support to go along with it.

The Road to Acceptance

2009-09-20T21:01:00.000-02:30

I have a confesseion. While I accept that Aiden has autism, and made peace with the word, the label, from day one, accepting what that actually means has been quite another journey.
Turns out the road to acceptance is long and winding. That has come as a surprise to me. I knew that accepting your child's diagnosis of an exceptionality mimiced the grief cycle, but I really did not expect it to be a two step dance, one step forward, two steps back.
You see, I was okay with it all, because we love him as he is, it's okay to be different, etc. etc. etc, place your own parenting cliche here. But the reality is, every time I am made painfully aware of his differences in certain social contexts, like, say...the dreaded birthday party, I find myself back to a place I thought I had left long ago.
Sometimes seeing his through someone else's eyes hurts too. Like if I see someone kind of looking at him quizzically I might get a blinding, stabbing pain that I wasn't expecting, because I already thought I was accepting.
Or if I'm chatting with somebody about it all, even somebody close, and they make a statement about him, it shocks me when it hurts. No ill will was intended, it's just that sometimes I'm not prepared for other people to notice his ways of being different, if they notice it, it may mean that everybody notices it. The sane part of me knows that he is different, plain and simple, and people are going to notice. That same sane part of me knows that one day I will be able to handle that better, but as for right now, it stings.
You see, at 4, going on 5, we're just leaving that grace period that a tender age allows. For so long, he was just such a verbally advanced kid, that all people noticed about him was how smart he was. Quirky behaviours are adorable in young kids, which is oh so helpful. But that lovely umbrella is starting to be lifted away, and I'm clinging with two firm hands.
I know that my acceptance will continue to grow, just as my love will. I'll come to better know who he is, and someday I'll to stop wondering about who I thought he was going to be.
Because even though this road is long and winding, we're buckled in, and commited to the drive.

Kickin' it Home School

2009-09-15T20:09:00.000-02:30

So far, so good. At least I think so! We started home school last Thursday, so I'm just 4 days in...perhaps too soon to draw conclusions. But, I know one thing for sure, it is hard enough to maintain attention with just him and his sister, in a classroom designed not to distract, so I don't think regular school would have been a great choice this year.

This morning we had a field trip to the local CBC building with the home schooling group we're a part of. It was a big bunch of kids, and the tour was so great. Aiden was very well behaved, much to my relief. Due to the field trip, we did school in the p.m....definately harder to keep focused then, but some days it will have to be that way due to scheduled activities.

There are going to be lots of group activities to participate in all year, and it seems like a really great, really BIG group, so I'm happy.

Tomorrow I have my meeting with the school board official in charge of home schooling, and my cooperating school's principal. So, no longer is home schooling something I am going to do.....I'm doing it!

I wasn't going to do this...

2009-09-08T21:31:00.000-02:30

Oh well, it is what it is. That's what hubby and I always say to each other after some long conversation, "it is what it is."
Tomorrow Aiden should be heading off to school. He should have a whole backpack with matching lunch box laid out by the door tonight. But there's no backpack. Because the little boy I thought I had 4 and a half years ago, isn't really that boy at all. And sometimes I miss him.
I am trying to focus on the relief I feel that I don't have to face school this year. I am trying to focus on the fact that he is still doing Kindergarten. And the fact that he is so excited about his little classroom, and how he'd much rather stay at home.
But, he doesn't realize that all the other kids he was babies with are going. But I do, and, this is the first real difference his disability has afforded him.
And I can't help it, but it's killing me.
And, I wasn't going to write this. But for those of you who know parents with special kids, these are the "special" moments that we have to face. Special isn't always fun. But, it is what it is.

Too Good?

2009-09-07T20:54:00.000-02:30

I have a theory.

I was listening today about a radio program that was speaking about how kids today tend to be "over-parented". And if you give this just 2 second thought, you'd be forced to agree! Kids today are so heavily scheduled! Everybody is in lessons of some sort, being shipped from soccer to piano to pre-planned playdates, to you name it! It seems that they go from one organized activity to another as fast as they can get.
Not to mention daycares. In order for a child to be succcessful in daycare, they've got to learn from an early age to tow the line. To follow the little rules, nap at naptime, eat at snack time, play at playtime...on and on. No longer do kids play dress up, oh no, these days, they take advantage of the Drama Centre. Oh puh-lease!!!
The result? Apparantly, kids are too good. They're overly compliant. Imagine that! I guess it sounds like a dream come true, but what it really means, is that kids no longer get to (or have to) think for themselves, or make their own mistakes. Not good.
So, what's my theory? I think that all of this has made it harder on kids who have behavioural issues. There were kids with Asperger's in the past...in fact, once most people learn about it, they think of someone they grew up with, who just must have had it. There were surely kids with ADHD in the past too, didn't you have a kid in your class who just couldn't sit still? But, today, these kids stand out wayyyyy more, because everyone else is so good. Bad behaviour blended better in the past, because kids were kids, and no one expected them to be perfect. Childish behaviour was more tolerated. Dennis might have been a menace, but he didn't warrant a behvavioural management plan!
So we've got loads of "good" compliant kids milling around, making all the "bad apples" stand out just a little more. Being different stands out more, even though today's children are suppossedly more accepting of differences.
Well, good apples/bad apples, it doesn't matter....because I wouldn't trade my yellow apple for all the world! xoxoxo

Truth be told....

2009-09-02T20:45:00.007-02:30

I will never sit my son down and tell him that he has autism.

I don't have to. Prior to diagnosis we made the decision that we would talk openly, and with acceptance about autism. We drop it in conversation all the time, "Did you know that so-and-so has autism too?", or, "You are great at that. Did you know that lots of kids with Asperger's Syndrome are really great at that?" I'll tell him that I'm thankful for the autism that makes him extra special. I want him to be raised in the knowledge. I don't want to have a big disclosing talk one day, that makes it seem like it was too big and horrible to have spoken about all of these years.

I also accept that my baby is different. It won't be too long before he realizes that he is different too. But, with the knowledge of why he is different, maybe it will help him to understand his differences better, and hopefully to embrace them. At the very least, to be knowledgeable about his syndrome and able to speak up for himself if he has too.

Studies show that knowing you have a diagnosis of Asperger's during those difficult adolescent years greatly affects one's ability to keep their self esteem in tact. And that's my goal. Kids tend to be pretty hard on themselves for not fitting in, they see it as a personal fault, rather than part of their disability.

That being said, I never use Aiden's label as an excuse card. If he's having a really hard sensory day, I'll mention how a lot of children with autism find loud noises awful, etc. But, I never use it as an excuse for inappropriate behaviour. He has to learn to take ownership of that all on his own. Does he have to work harder than other kids? Yes. Is it fair? No. But it is his reality, and I do him no favours by giving him a free pass, because he certainly won't get one anywhere else in that big world we live in.

I also want to take advantage of all autism events, where Aiden can go and see the support that the autism community has for one another. I want him, and all of us, to feel that we are part of something. That it's bigger than just our family, than just our boy.

So, you'll see the magnet on my van, and my hubby and I have some autism bling...because we are proud. We're proud of our boy, and truth be told, we're also proud of how hard we work together to do the best we can for him.

Getting There

2009-09-01T19:40:00.002-02:30

Just a quick update, went to my first home school group meeting last night, and it seems like there is a lot of support out there! Will be lots of activities to do with other families, and lots of other people who are doing what I will be doing! It's always great to find footsteps to walk in.
So I am busying myself now, getting our little classroom put together, organizing supplies, and just generally getting set up.
Should be fun!
(Then again, it might be a complete and utter disaster.)
Time will tell!

Autism: Finding My Voice

2009-08-30T21:08:00.002-02:30

Pretty ironic actually, but for a communication disorder, autism sure gets parents talking. I don't think there's an Autism Mom out there who hasn't had to learn to speak up, whether it is something they liked to do in the past or not. Being a special needs parent means encountering special situations, and, let's be frank...encountering a lot of ignorance along the way!
A list of examples would be countless...from cashiers weighing in when I'm speaking to my boy to the portrait studio lady who asked my little guy why he couldn't just sit still like his cousins...it's annoying. REALLY annoying.
But it's not these little brush ups that get my tongue wagging. With all invisible disabilities, parents are used to people not being very understanding of their child's behaviour. You get used to people not getting it.
What really bothers me, is that I have found I've had to be most assertive in places where you think you'd find more support!!! (Oh..fellow autism parents...I just know you are nodding your heads right now.) There are sometimes professionals who aren't being professional, service agencies who forget who they're servicing, other autism parents who think that their kids are the only one with needs....etc. etc.
Here's one example...at a soccer game this summer, some other child's home therapist actually interrupted me while I was talking to Aiden about an incident, and proceeded to speak to him herself. And next thing you know, I was hearing myself say, "Excuse me, but I don't need your help to parent my child." OH MY GOD! I couldn't believe I had said that to someone! Was I right in saying it? Yip. No doubt. What made me feel crappy is that I have gotten so used to having to speak up, that it now happened as second nature. I don't want to always be on the defense, always ready to step in and defend. I feel like Mommy Wolf sometimes.
But that's it, all parents have to look out for their kids. All parents have to speak up for their kids. We just have to do it a little more often.

Paint Me a Picture

2009-08-25T21:02:00.002-02:30

Sometimes I think that if I just knew what the future would look like for Aiden, I"d feel better. It's just that all this guess work, and trying to forecast issues that may or may not arise is exhausting. I could handle all of these young years better maybe if I knew that everything was just going to be okay.

That's the thing about the autism spectrum, it's a spectrum. No 2 kids are alike. And while it is interesting, and maybe partially informative to hear how so-and-so's kid is making out, it doesn't tell me how my child will make out. It's all up in the air, and I find that really hard to handle. I am the type who needs to know what has to be done, so I can get to work and do it. This uncertainty is painful to me. I want to be able to make the best decisions for him NOW. It's all this waiting and seeing.

Aiden can change so much from week to week, and month to month, I can't get a clear picture! Some days I don't think people would believe me if I told them he has autism. Other days, it is very, very obvious.

I would love so much for someone to paint me a picture of his future. I'd love to see a picture of a young man, who's used his smarts to their best ability and has a solid career. I'd like to see him with friends, places to go, things to do.

But most of all, I'd love someone to paint me a picture of a man who is happy.

And loved.

...maybe that's one way I'm like every other parent out there.

The "A" Word

2009-08-21T20:13:00.002-02:30

My son is not autistic. He has autism.

When people say "autistic" is just feels like my skin wrinkles and crawls and tingles in horrible, unspeakable ways. It is a word that I hate. It is not a word that I use.

I used to think that I was overly sensitive perhaps, but it turns out there are a lot of people like me out there. In fact, I've met few parents who use the 'A' word in reference to their kids. Our kids have autism. It is just one characteristic of them, not the be all, end all, all-defining characteristic of them. If you meet Aiden, and you heard that awful word first, you'd miss the opportunity for so many of his other great characteristics to take centre stage in how you view him. If I had to use an adjective for him, I'd say he's my creative kid...who has autism.

Now don't go feeling all bad if you're a regular in spitting out the 'A' word, and perhaps you're a parent who doesn't mind the word at all. That's fine...to each his own. Maybe you'll rethink it and agree with me maybe you'll rethink it and disagree with me, or maybe you'll just give your wording some thought. It's all good.

But as for me, I want to use language that puts the child first, and the label second. I think it's one of the reasons that some parents have such a big problem with labeling their children, they really believe that once they have a label, people won't see past it. Sadly, that is true in some cases, no doubt.

So, whether we're talking about a child with a heart condition, a child who has diabetes, a child with a hearing impairment, or a child with Asperger's Syndrome...let's let them be children first. Let's call them children first. And maybe, just maybe, everyone will see them, and appreciate them, first and foremost, as children.

Sometimes when you're sleeping...

2009-08-18T21:27:00.003-02:30

Sometimes when you're sleeping, I just stare into your beautiful, silent face. So still, so restful. You just seem so small, and so young. It seems that I must have imagined that such a small, beautiful boy could have had me run ragged today, or that there could ever possibly be something "different" about you. When you sleep, you look like all others, somewhere else.

Everyone is in their own world when they're sleeping.

And, when you're sleeping, I feel the desire to gather you up, hold you so close, drink deeply your freshly-bathed scent. I am able to trace the outline of your cheek, without being brushed away.

Your little hands folded and quiet, your feet finally finished their day's journey.

In the morning you will rise, and your first couple of minutes will tell me which kind of day we will have. But for now, you sleep. And I continue my dreams for you...

House-bound

2009-08-16T19:58:00.005-02:30

I don't get out much. No joking, I just don't get out much. Every time I'm invited somewhere, I have to go through a list of possible scenarios, and factors which will have to be negotiated, and decide whether or not it's worth the risk. Or if I'm just setting him up for failure. This is what is called by some as "stepping on eggshells". I call it being proactive.

Will there be too many people? Will it be too loud? Will a source of anxiety be present? Will I be able to handle the two of them on my own? Will I be able to peel him away when the time comes to go home? Did something happen here the last time that he'll expect to happen again?

The list goes on. Now, that's not to say that we stay home all the time. I often take a deep breath, say an abundance of prayers, and go anyway. I really try to get Aiden out out out, so that life will just get easier. We eat out once a week, and can now get through an entire meal!!! (Yay!) BUT, I go at off times to restaurants, so they're not too crowded. And, you will never, never, never find me at McDonald's playroom. (whole OTHER story) We survive birthday parties, skating, swimming, soccer, music classes, shopping trips, playgrounds, etc, etc. But it takes a lot out of me.

But, there's lots I don't get to go to. If you're one of my friends from Outer Cove, you'll notice I missed the Folk Festival today. Not doable. Way too loud, and if it weren't, he'd want to be in the playground the whole time, so I'd either have to hang out there away from the crowd all day, or have him crying to be at the playground part. No fun. I also had to miss my special cousin's birthday supper tonight. Hubby was working, so would have had to take kiddies, very close to bedtime, and kind of restaurant where it takes a while to get served, also too peak a time, and too many people at our table. Would have been bad too.

I've gotten used to missing out on things, but sometimes I really wish I could go. I also fear that people will stop inviting me places, because I can never go. I also worry that I hurt people's feelings with my "no shows" sometimes. What I really hate, is when people try to convince me that I should go anyway. I don't do that anymore, if I know something is going to end terribly, then I avoid it. I need Aiden to experience social success, and I refuse to set him up to fail because I don't want to miss out.

So, if I blew off an event you invited me too, I'm sorry. And maybe I'll see you at next year's Festival..maybe.

Autism Advocacy

2009-08-13T13:13:00.002-02:30

I am posting here a copy of a letter I have sent to Ms. Yvonne Jones, leader of the opposition in our provincial government. She has shown herself to be an advocate for children with autism, and I wanted to share with her some of my own opinions concerning early intervention. I know lots of you out there share some of my views, and others may disagree as well. I urge you to contact her yourself, she seems to have "good listening ears"!!!
Contact her at yvonnejones@gov.nl.ca

Dear Ms. Jones,

As the mother of a 4 year old boy diagnosed with autism, I would like to thank you for the attention you have been bringing to autism in our province. It is clear to me that you serve as an advocate for our children. With all the struggles inherent in parenting autism, all support is appreciated, and yours does not go unnoticed.

I heard on CBC radio today that you have been addressing the wait time for diagnoses of autism, and the subsequent wait for early interrvention services. Early intervention services is a topic of great interest to me. While children in Newfoundland and Labrador do not have to wait for ABA services when first diagnosed, they do have to wait for speech and occupational therapy services. ABA uses programs based on behavioural modification, and while many children with autism have severe sensory processing issues, ABA is not the best first step to meaningful intervention. We cannot discipline from our children behaviours that are based on sensory input need, we need instead to give them proper exercises and input activities which will take the place of "troublesome behaviours."Also, there are families like my own who do not feel that ABA is the proper intervention for their child.

My son has Asperger's Syndrome, and my husband and I found that ABA did not address his individual needs. As our understanding of the autism spectrum broadens, there will continue to be more and more higher functioning autism, and Asperger Syndrome diagnosed. We too feel that our children deserve immediate, and meaningful interventions. Parents of children with autism often face tough choices in terms of their ability to have two parents working full time. Yet, the costs of having our children benefit from private OT, of private speech while painfully waiting for these services is not cheap. I know, because I have had to pay for them out of my own pocket, like many other families. We all want what is best for our children, so we make these sacrifices. But, they are sacrifices.

So thank you for your voice in autism advocacy, and I encourage you to look deeply into our current early interventions, and to see the gaping holes that us parents must traverse.I will be sharing this letter with my blog about parenting Asperger's Syndrome, listed below under my signature.

Warm Regards,
Natalie Dalton

http://myyellowapple.blogspot.com

Large black please.

2009-08-08T21:00:00.004-02:30

Just when you think things are going good....whammo, you get a couple of bad days right in a row to put you in your place. The last few days have had their share of strife around here. My poor little guy's body is on bust. If you're familiar with sensory issues, you'll understand what it means to be on bust. If you're not familiar with sensory issues, consider yourself to live a very charmed life, at least on that front. ( I may write about it at some point, but I honestly don't know where to start.)

After a very long, very trying day yesterday, which involved one disastrous shopping trip, and one meltdown to end all meltdowns, and a baby sister whose nap got cut way too short....I never thought bedtime would arrive. But arrive it did, and I got to tell ya, Francis and I were some happy with ourselves to have survived the day! But...at 4 a.m. this morning, when himself came slinking into our room...I had no idea that he would be up for the day. But, alas, he was. What can I say? There's only so much you can do with no sleep. And I feel like I can handle an awful lot with the disrupted sleep that I get. But, no sleep? Just too hard. Just too painful. Just too true.

We get these nights sometimes, not all the time, but more often than I'd wish. You try going to work all day after being up since 2 a.m. Ouch.

It's funny, whenever I meet parents of kids with autism, we always ask each other two things...how they sleep, and how they eat. Every time. I am not the only mom to suffer like this. Far from it. I remember my own personal 'take back the night' campaign a few years ago, which involved ditching his nap, because if Aiden slept at all during the day, he'd be up til all hours at night.

So, I can hardly wait to hit the hay tonight. I'd better get down early, because God only knows what time I'll be getting up. No wonder I'm addicted to Tim's coffee.

Meltdowns vs. Tantrums

2009-08-03T20:02:00.003-02:30

Just to clarify things, in my opinion, a meltdown and a tantrum are two different beasts. In all fairness, both are really hard to deal with, cause great embarrassment when brandished in public and make you question your decision to have become a parent in the first place! Although, if you're new to being humiliated publicly, you may find comfort in the knowledge that you do actually get used to it, and it is possible to reach that place where you no longer care what other people think! Honest.

Now, I don't want to give the impression that Aiden is constantly having public meltdowns, because he's not. BUT, when they happen, they're doozies! Like, awful. But, that's all in a day's work.

Back to my distinctions...and this is all opinion here folks, but I do believe I am right nonetheless. A tantrum, which can be thrown by any manner of child, old, young, typical, atypical..whatever....is usually a plea to get their own way. It is an attempt to outlast you,shame you, overcome you, possibly scare you...all with the ultimate goal of getting their own way. If their tantrum works...you're in big trouble, because they'll come faster, and more furiously in the future!

A meltdown however is when the child has actually lost all ability to handle their emotions. Whatever it is that is bugging them is now center stage in their life, and they just need to break free. Meltdowns can happen when they're overtired, overstimulated, overstressed, of over-anythinged. ( I think I just invented a word.) Aiden typically melts down when he has an idea that he can't materialize. For example, he has an image of a craft he'd like to make, but without Martha Stewart on site, it is just way beyond the realm of possible. Well, look out! There's no soothing possible, no nothing. The only thing I find that works is to take away whatever is agitating him, often by way of pulling from his abnormally strong grasp. BUT, when whatever has him overwhelmed is gone, instead of being angry, as he would be with a tantrum, he is almost RELIEVED to be freed from the stress.

Now, that's a meltdown.

And it's exhausting.

And it's a big part of autism.

We are Family

2009-07-31T21:29:00.005-02:30

I honestly don't know how single parents do it. If you are a single parent of a child with autism, and you are reading this, give yourself a big round of applause. (Actually, if you're a single parent PERIOD, give yourself a round of applause.) Francis (my husband) is on holidays this past couple of weeks, and it is just soooo great to have that help. And, he's a good daddy. He's hands on, out in the yard with the kids all day kind of dad. Had you driven by my house last evening, he was the guy giving the kids figure 4 leg locks, pile drivers and suplexes on the front lawn. He's like the quintessential uncle, turned daddy.

What I like best, is that he is the only other person in the world who is in on this. I have family and friends I can talk to, but no one but him lives Asperger's Syndrome like I do. Nobody knows Aiden like he and I. Nobody. When other people are around, I always feel like I'm interpret ting behaviours, or always telling people what to do or not do around him. With Francis, he's already had the inservice.

When he gets home from work, Margaret will come running for hugs and kisses. Aiden will come running with tidbit of information from his day. He knows that Aiden wants the hugs and kisses too, I don't have to interpret.

Most importantly, he loves him. Loves him, loves him, loves him. He spends time with him. He accepts him. He has dreams for him. With all the struggles that Aiden may face, and undoubtedly will face, it comforts me to know that he has the priceless benefit of being loved and adored. No matter what kind of experiences he may have with bullying, rejection, loneliness (ouch, that is hard to write) he'll always have love here. Between the two of us, I hope we can give him the solid foundation of love and self-worth at home before setting him free in the world.

So, here's to a great dad. And a great guy. And here's to family!

But don't get me wrong...he still gets on my nerves sometimes....

Back to School

2009-07-27T23:04:00.002-02:30

It's everywhere now. School supplies. Normally, the sight of school supplies sends my heart skipping a beat. I truly believe that one of the perks of being a teacher, is that you will always have the thrill of stocking up afresh for September. However, a recent trip to Walmart, watching a mom help her little girl complete her shopping list, left me feeling kind of sad.
School terrifies me. It really does. I just cannot imagine a scenario where my little guy can pass happily through its structured ways. Well, I can't imagine a way that he can fit the mold without fundamentally changing who, and how he is. I've been worrying about school since he was 2. Who will ever have the time to deal with his activity level in their classroom? Who will ever have time to learn all of the dos and don'ts of teaching children with AS? Who will have the time to link his learning to his interests, which is a vital step in maintaining his focus? Who will have the patience required? I do. I know that, but our goal is to head into grade one after this year of homeschooling. Unless he fundamentally changes in the next year, sending him to school will be paramount to putting my heart on a chopping block.
Part of my problem, I don't trust people. I tried to trust people with him in the past, and it did nothing but do more harm but good. I don't want to spend 13 years apologizing for him being who he is. I want to spend all of his years celebrating who he is, and working with it. But...
...and it's a big but...I want him to have the advantage of a regular childhood. I would love to see him hop on a bus and ride to school. To casually talk about kids from his class. All of those things that most parents completely take for granted.
So, I'm avoiding school for a year. I'm going to put all of my anxieties on hold for a year. I'm going to go it alone for a year. I'm going to hope for a lot to change in a year. I am quite possibly going to go crazy this year (the thing about going to work...there are other adults there!!!. For those of you who can't remember what other adults are..they're fully grown humans, who hold similar interests to your own. And, I'm going to make a fair attempt at enjoying this year.
And, I'm going to chronicle this year. So, if you're interested, stay tuned.

Autism is...

2009-07-24T20:44:00.004-02:30

Autism is not being able to rest your arm on your child while cuddling him.
Autism is having to ask your boy to tell you that he loves you.
Autism is anxiety ridden.
Autism is life altering.
Autism is beautiful.
Autism is brutally honest. Brutally.
Autism is so very, very creative.
Autism is so in touch with the world.
Autism is spreading fast.
Autism is changing the way people interact.
Autism is affecting my family's life.
Autism is a community.
Autism is really, really interesting.
Autism is what makes me want to use my life.
Autism is inspiring.
Autism is what makes me proudest.
Autism is what scares me the most.
Autism is pretty funny, sometimes.
Autism is changing schools and work places.
Autism is very, very real.
Autism is making very tough decisions.
Autism is brothers, sisters, sons daughters.
Autism is only part of a person.

Up! in Smoke

2009-07-23T21:10:00.004-02:30

Well, you can't blame a girl for trying. It was a rainy day here in St. John's (oh, I'll allow you a moment to reel in from the shock of that) so Aiden's morning soccer program was cancelled for the day. So I thought it to be the perfect day for us to try going to a movie. It's been on my "to do list" now for a while, and I've had it in my head to take him to UP! since May. Not that easy to arrange apparently. So, it being a weekday morning, i thought that now was probably a good time to go. The movie has been out for a while, so I expected the theatre to be quite empty. Which it was.
So, I packed up little Margaret, and sent her with my mom, and packed my purse to unforgiving fullness in prep for the movie. Any autism parent who reads this will understand...it's all in the prep, and in preparing for any manner of situation or request which might arise in a new situation. I had favourite snacks, apple juice (oh so important), a comfort item, the Z-Vibe, headphones for noise control...you name it, I probably had it. Well, it was all for nought. My first clue that this might not work out was by Aiden's lack of chatter on the way to the theatre....all parents know that quiet is never good. This was the tell tale sign of fear mounting. But the little trooper stayed with me through purchasing tickets (at airport style prices BTW), lining up for popcorn, and handing in our tickets, he played the game until the second we walked into the dark, LOUD theatre. "Actually, I want to go home now." he chimed in. I quietly beseech ed him to give it a try, the little guy begrudgingly sat up in his seat, and about 20 seconds later, with headphones of no help here, again pleaded his case.
So, I gave in, knowing that this bad experience means it may be years before I'll ever get him as close again.
But, tonight before going to bed, he earned a sticker on his behaviour chart for trying a new thing. Truthfully, I probably deserved a sticker too!