I got my first “I hate you” from my son

My son had quite the meltdown yesterday when it came time to turn off his game. It was a combination of losing, his cousin not doing what he wanted and being told it’s time to turn it off. It was just too much… when he broke the game remote and started calling everyone the worst words he could (stupid and dumb are about the harshest words he knows) is when I had enough and gave him a time out in his room.

Don’t make any mistake, this was quite the meltdown and I didn’t get mad… I just removed him from the living room to give him time to cool off. That’s when he yelled back that he hates me.

Now, I tweeted about it shortly afterwards… not that it hurt me, but that I it happened. In my mind, it was as if I had finally joined the club… because most parents have heard this from their children… Autism or not.

Children in general have no filter on the things they say. They don’t know what “pushing it too far” is… they just know they’re mad and they need to express it in the loudest, most hurtful way they can. It’s only in time that they learn (hopefully) how to dial it back, how not to say things that they don’t really mean just because they’re filled with so much emotion.

We as parents can’t take it personally… we all know that it’s simply a reaction and that once they do cool down, all will be back to normal.

However, it can be a bit more extreme when Autism is involved. The yells are louder, the rage is more intense, more things are likely to get broken and in some cases, someone can easily get hurt.

After I tweeted, a lot of parents tried to console me… telling me it’s ok, he still loves me… which I shrugged off. I tweeted it with pride, not pain. I wasn’t proud exactly, wrong word, but as I said, I felt like a part of the club now.

Anyway, upon reflecting on it, I get why they consoled me. As fellow parents of Autistic children, they know just how hard it can be… more so than other parents.

angry boyWhen a toy shatters against the wall or… in this case, a game remote breaks as it’s slammed onto the ground, you can start to feel a little bad as a parent. You start to picture movies where troubled families have troubled kids who break things, become bullies and eventually put on a mask and go around killing people. Yes, I watched the Halloween remakes recently. Anyway, I digress…

More extreme or not, harder or not, our children still love us and I still feel like I’ve just graduated into the next level of the group. I don’t need consoling but I do appreciate the support… so very much so. Because that’s what our community is all about and it’s truly wonderful to know it’s there.

When your child first tells you something hurtful, and they will, you don’t have to share it with pride and you certainly don’t have to share it because you feel hurt.. but share it anyway. It’s a very heart warming feeling when you get that little reminder that there are some truly great people out there that waiting for you in that new group you just joined.

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How did ‘cure’ and ‘acceptance’ get to be such bad words?

It’s no secret that the Autism community is quite divided on many topics and I’ve even written before about how easy it is to offend one side or another depending on what you say.

For the last 4 months, I had been trying to organize a rather large campaign to get as many people to write about “Understanding and Acceptance” for those that live with Autism every day.

It’s done well but has perhaps also added fuel to an already hot topic. One that has turned two very good, very positive words into opposing sides of a war.

Cure

This word is often used in finite terms, such as how antibiotics can kill a virus or infection and leave you without a trace of the offending agent of illness.

The issue here is that many people with Autism (especially Aspergers) and even those that love them, feel that autism is a part of what makes a person the person that they are. It affects every aspect of their life from birth to where they are today and to remove that would be like removing a part of who they are.

When a loved one (usually a parent) is presented with a child that is “low functioning”, they would love nothing more than to cure their child. Some children (even those that are of adult age) are unable to speak, use a toilet, live independently, they hurt themselves, wander off with no idea what they’re doing or where they’re going… they’re unable to express themselves, their feelings or desires.. they’re trapped.

What results is the people from group a (Aspergers/high functioning) often resenting those from group b (lower functioning loved ones) for wishing to “remove” a part of their children. They consider it quite offensive to think that Autism is an invasive illness that needs removing.

Acceptance

Acceptance is the cornerstone in giving women equal rights, abolishing slavery and in squashing racism… it is therefore considered necessary to give those that are different a chance to co-exist as equals among those that are “normal.”

Many people view Autism/Aspergers as a gift, an ability to think and visualize the world in a very different way from a person without it, however, it also comes with some complications in that their senses may over load them, they are unable to socialize as easily or effectively and may need some “allowances” from people such as added patience and understanding in both their professional and personal lives.

Should people learn to accept and understand these differences, not only could those with Autism/Aspergers excel but may be able to excel much further than anyone has before them in their field!

Well, the problem is that it’s all well and good for those that can work, those that can socialize even if only a little but for those parents/loved ones who witness their child being bullied, beaten, isolated and even institutionalized because they don’t even have a chance at acceptance since they are unable to truly interact with the world to begin with, acceptance is not only impossible but it’s a source of anger.

Those loved ones don’t need anyone to accept their child. They need for their child to learn to talk. They need for their child to learn to use the toilet. Acceptance, to them, is like expecting a bird to be able to fly before it even hatches from it’s egg… much less grows it’s feathers.

They can’t even think about acceptance because without a cure, there will never be acceptance… and if they had a cure, why would they need it?

Conclusion

bad words

bad words

The disconnect here happens because people view the world in black and white… there is their world, and then… well, that’s it. Their world. You can’t blame them if it’s someone they love, especially a child. You very quickly learn to not care about other people’s rainbow coloured happy places when you want your child to simply have a chance at a normal life and people attack you for it.

Likewise, you can understand how someone, anyone really, would get upset when others think that you should have a part of yourself removed because they don’t think you’re good enough the way you are. If you have any self worth, any self confidence, you are more than happy with who you are and don’t care what anyone else thinks.

The thing is, there’s a world beyond our own and we can’t push our world onto other people. What someone wants for themself isn’t necessarily a reflection of what they want for you… or how they view you for that matter.

One mother that wants the autism out of their grown, non verbal child doesn’t necessarily want the autism out of a 12 year child that has a higher IQ than Einstein.

Likewise, I’m sure most people with Autism/Aspergers that can fend for themselves would never want a parent to have to take care of their child forever.

These are not bad words and certainly not a cause for hatred. We just have to stop taking things so personally. We have to learn to accept that there can be a compromise.

A new way to think about old words

Perhaps a cure doesn’t have to mean “removing all” and instead can mean “removing the barriers”… implying that they’ll still have autism but maybe now they can talk, leave home, hold down a job and start a family of their own.

Perhaps acceptance doesn’t have to mean that the world just says “well, they’ll never talk.. accept it” and instead means that the world accepts that there needs to be a change in priorities, a change in how funding is not available, a change in how parents feel so alone with no where to go.

The world isn’t black and white. And the world isn’t just about you. We can co-exist… and understand that people want what they want and that they have their reasons for wanting it.

Don’t be so quick to judge, don’t be so quick to get defensive. A cure is not a cure for all and acceptance isn’t acceptance for all. Either support each other in their goals and desires or don’t. There’s no reason to hate.

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Awareness is not enough. This is what Autism is to me

Awareness is not enough.

We (The Autism Community) need for you to know what Autism is.
We can only achieve that through Autism Understanding and Acceptance.

Awareness of autism has risen dramatically in the past few years, and awareness is certainly a good place to start. Increased awareness has helped parents get earlier diagnoses for their children, and it has helped secure funding for research. However, it hasn’t done much to change public perception of what autism really is.

This is a call out to the world to understand the people and the disorder.
This is a call out to the world to accept the people and the disorder.

You can not understand or accept the people until you understand and accept the Autism they have.

Autism is a part of who they are.

The media has focused almost entirely on children with autism – but children grow up. In a society where one in 110 children is diagnosed with autism (the latest figures from the Centers for Disease Control), no one can afford to ignore the significance of this disability. People with autism are children, teenagers, adults, men, women, scientists, programmers, engineers, unemployed, in care homes … too many of them continue to be bullied, to be judged, or to just be ignored.

Each person is unique. Each person has their own unique set of strengths and weaknesses just like you or I.

The charities, the organizations, the groups, the parents, the people with Autism themselves… we ask you… no, we need you to know what Autism really is.

Today, we ask for your Autism Understanding and Acceptance.

This is what Autism is to me…

Autism Understanding and Acceptance

Cameron Duncan

Autism, to me, is a part of who my child is… for better or worse, beautiful or ugly. Yes it causes extreme temper tantrums, misunderstandings, dietary issues and more… but it also shows me a side of life that I would have never seen before otherwise. A whole new profound way of looking at the world.

Autism makes it very hard for my child to know what other people may be thinking… a look on their face and body language aren’t enough. Autism also makes it very hard for my child to understand the concept of time. To tell me about a year ago, he refers to it as “a lot yesterday”.

It’s because of Autism that my son will kick and throw things as he enters a rage filled meltdown that is completely beyond his control.

Probably what hurts most, however, is the looks and comments and judgments that others make while we’re in public. Whether it be a meltdown at a grocery store or even a physical activity where my son clearly isn’t as “in control” as the other children. Being different, to most people, is a negative thing.

It’s for this reason, that Autism to me, has become my purpose. Actually, my son (both of my boys to be honest) are more important than Autism itself, but they’ve given me my purpose in life… to not just raise awareness of Autism but to try to help others to understand it better and to accept those that have it.

Perhaps if I can reach enough people, those looks and comments and judgments will begin to go away. If I can reach people in my own community, I can help people accept my child..  if I can reach people around the world.. I can help many children.

And not just children… but teenagers in high school that are being bullied or even beaten… and adults too that may still be living with their parents or at the very least, struggling at keeping jobs and a social life.

Since my son has been born, and more so, since we’ve received his diagnosis, I’ve learned so very much about Autism and yet I still have far far more to learn.

And this is my meaning in life… this is my purpose.

Not to change my child because my child is wonderful, amazing and every bit as deserving of a everything that you and I have as we are.

My purpose is to change the world around him… by talking to anyone that will listen. By giving them just a little bit more understanding… and hopefully, helping them to accept my son and everyone else with Autism.

That’s what Autism is to me.

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Quantifying Friendship

I pick up my younger daughter and her classmate from their school each afternoon.

We drive to oldest daughter’s school in the next suburb and collect her.

Each afternoon follows a set pattern, pick up two, and drive the same roads, park in the same place. Walk to the others classroom, play the same games, bell rings. Leave with three. Get in car in same order, drive same route, and offer the same snacks.

Three children on the autism spectrum, I try to minimize changes in routine, avoid conflict.

Each afternoon the conversation follows the same route. Topics dictated by the landscape we drive through. Street signs, letter boxes and houses the visual route markers to our verbal dialogue.

We drive out of the first school, the two clamouring for snack. As we approach the T intersection the ‘bad thing about today’ is revealed – a child roaring like a dinosaur, the teacher changing the actions to a song.

As we pass the swimming school the two begin to talk about ‘my best day’, seeing a snail in gardening class, playing a with favourite toy.

While I wait to turn into the other schools car park, both voices in the back seat express concern over what will happen if we park in a different place.   On good days we get our special parking space, on the rare bad day I spend a few minutes reassuring them it is okay to park in a different place.

We walk into the other school, they both bolt for the playground, I follow, we play the same game, the climbing equipment is the boat, and the ground is the sea. I am the shark, squeals of feigned terror as the shark approaches, giggles of delight as they escape the shark.

The bell rings, two sets of hands reach up and cover two sets of ears, two voice exclaim ‘too loud’.

Then the rush of children out the classroom doors, loud joyful noise as they escape the school room again. We wait, oldest daughter is always the last out, organisation is a challenge, easier to wait until her classmates are outside and the room is quiet, and then she can think, remember what needs to be packed to come home.

Finally we are on our way again, three in the car. Slowly we exit the busy car park, all three voices talking about their day, all three demanding that the others be quite and listen.  We turn the corner towards the train tunnel, oldest recounts why she has named it ‘The Echo Tunnel’.

Another corner, as always this corner turns the conversation towards fairies, what attracts fairies, what repels, where to look for them. Every afternoon the conversation follows the same route. Topics dictated by the landscape we drive through. Street signs, letter boxes and houses the visual route markers to our verbal dialogue.

As we approach the duck pond my heart sinks in anticipation, a corner is turned, the yellow sign with Mama Duck and two baby ducks is passed “Excuse me, are we friends?” the question is asked.

Oldest daughter replies “No. You are my sister’s friend.”

Younger sister answers “You mine friend.”

Classmate responds in matter fact voice “oh. Okay then.”

Each day I insert my social story voice into their conversation “It is okay to be friends with more than one person. Your sisters’ friend can be your friend too.”

We drive under another bridge, I’m ignored as always, conversation turns to invitations to come over and play, lets hunt fairies in the garden.  As we pull into classmates drive way I’m besieged by petitions to please can we stay, please can we play.

Weeks turn to months, every afternoon the conversation follows the same route. Topics dictated by the landscape we drive through. Street signs, letter boxes and houses the visual route markers to our verbal dialogue.

Then one day, we approach the duck pond. My heart sinks, the questions is asked “Excuse me, are we friends?”

And there is a pause, I slow down, ears alert at this change.

Youngest daughter answers “You mine friend.”

The two turn to oldest daughter, she has not spoken, she is thinking, I hold myself silent, hoping for change.

“I think we are” she says “You believe fairies and so do I, you have a little sister with autism and so do I… is that enough things to make us friends?”

He listens quietly, seriously and after due thought he responds “I think maybe we need more things.”

We go under the bridge but the conversation does not change. Something new is blooming here on our drive home.

All three are silent, thinking.  “How about ten things, if we have ten things that are the same, would that make us friends?” oldest daughter asks.

“Yes, it would, ten things is good” he answers

And a rising babble of voices explodes as the three work out ten things that are the same.

Every afternoon the conversation still follows the same route. Topics dictated by the landscape we drive through. Street signs, letter boxes and houses the visual route markers to our verbal dialogue.  As we pass the duck pond the same question “Excuse me, are we friends?” But now we have a different answer, a list of ten ways they are the same, ten things to make a friendship.

 

 

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Parents Magazine completely forgot about Autism Awareness Month… and then…

While checking around the various social networks and news sites, I came across this About.com news story: “Parents Magazine Ignores Autism Awareness Month“. The good news is that this is likely not going to be a mistake that they repeat next year because they got an ear full!

Autism advocates quickly “liked” their Facebook Fan Page, not with the intention of liking them, but being able to voice their disapproval (I think disgust is a better word but I’m trying to be nice).

The awesome folks at Try Defying Gravity have been covering this expertly and really helped with the push towards getting this resolved and resolved, it is… well, sort of.

Here is the statement, in the discussion group page of Parents Magazine Facebook Fan Page:

We would like to say again how grateful we are for your feedback and for the reminders in the last 48 hours that autism is not just 1 in 110—it’s about real people and real families. We feel that one of the best ways we can educate our readers and raise awareness for autism is through real-life stories. This is why we want to give you the opportunity to share your story with us and our audience as part of a blog series in addition to our planned articles. If you are interested in participating, please email FacebookSupport@meredith.com with the following information:

• Your Name
• Child’s Name
• Living with Autism: Your Family Story (Please keep stories to 500 words so we can include more voices in the blog.)
• Photo of your child/your family (*Optional. We will include one photo if you’d like.)
• Link to your personal blog/website (*Optional.)

We are very sorry for making you and your families feel dismissed or unappreciated. It was not our intention. Autism is an issue worthy of Parents magazine’s attention and we hope we can move forward together to raise awareness throughout April.

They screwed up, they know it. But does a discussion page post tucked away somewhere in the middle of page 2 really make it all better?

I think they could do better.

But instead of waiting on them to do better, let’s follow in Try Defying Gravity‘s example and do better for ourselves.

Update your blogs about this, share this on Twitter and on Facebook and let’s get their hidden message out and give them so much to write about that they’ll need a double thick issue, or better yet, need to devote the next 2 months to Autism.

Keep in mind, I am passionate about this because their response ties in perfectly to what I’ve been trying to do, and that is to get people to share their stories on April 2nd. The Awareness is Not Enough campaign is going strong and this is the perfect opportunity to get your story out there to the world.

If you’ve been wondering how you can best share your story, this may well be it. So email them. Their email address is in their statement above. Let’s make sure this is a mistake that they never ever make again.

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