Tag Archives | differences

When apples talk to oranges about steak

By on September 26, 2011 in Autism

I’m sure you’re aware by now of the dialogue going on over at The Thinking Person’s Guide to Autism, and if not… it’s probably a good time to give it a once over. Keep in mind that there are some very long posts and, depending on when you read this, more coming soon… make sure you set aside some time before popping over.

I’ve been biting my tongue through this “dialogue” for a variety of reasons. If you don’t want to go into it with any preconceived notions from yours truly, go there now before reading my post.

How this all started

Let’s just be clear on where this all originated. The “non-disabled parent” wrote a post (that you can read here) about an imaginary parent going to a movie that made rude remarks about Down Syndrome and used the R word and so forth… he imagined how that parent would feel if that parent had a child with Down Syndrome and had to hear this in the movie and all the rest of the audience laughing at it.

In response, the “disabled adult” (autistic) took great offense (you can read it here) to this in that he can’t possibly know what it’s like to be disabled and has no right to be so offended.

Obviously this is a very short summary and I’m paraphrasing, so please feel free to read those two posts to understand exactly what transpired.

But to reiterate… there is now a “discussion” about what parents can and can’t understand, can and can’t discuss and who the real “advocates” are… based on a parent writing about how another (imaginary) parent might have felt.

He didn’t imagine himself being a child with Down Syndrome… he wrote about how a fellow parent might feel.

Apple, meet orange… begin discussion about steak.

Where does this discussion lead?

Hopefully to a good place, hopefully some really good mutual understanding and maybe… if we’re really lucky, even teamwork toward the future will come of this.

However, there’s always different people who find different meanings from all things and therefore, there may also be some much more… well, I would call them “less positive” possible outcomes.

As one person linked to the discussions, I replied to their link saying that I’m biting my tongue.

A woman replied to me, this is what she wrote:

Me: Autistic parent of an autistic child
I’ll comment on this tomorrow

Person without a disability
Why can’t you just come out and say it?

I did not reply to her, I once again bit my tongue because I did not see any possible good outcome from a discussion that begins in that tone.

Still, I really wanted to ask… Is this how we are to address each other from here on out? Is this truly what it’s coming to? Are we, two groups who are fighting the labels that people place on us, going to now refer to each other using labels?

What’s better is… this woman has no idea if I have Autism or not. This was a completely presumptuous reply based on my “biting my tongue” comment.

Is this truly the road we’re going to go down? Is this going to be a benefit to anyone?

Communities?

Adding to the further separation and division, adding to the need to be labeling people in the effort to come together and abolish labels… we now have the Autism Community, Autistic Community, Disability Community and Non-Disability Community… and those who feel that some people belong in multiple communities while others don’t belong in any communities at all.

What does this all mean?

As a group, we’re asking society for acceptance of those that are different… yet we can’t even accept the differences in each other.

We fumble over ourselves declaring superiority, inferiority, privilege, rights, responsiblities and more… in an effort to separate and divide ourselves, to judge one another, label each other and “feel about” each other… all the while telling outside observers to simply accept the differences within us all: gender, race, income, special needs, etc.

You might as well get money management advice from a random homeless person.

Steak

The meat of the discussion, which everyone is discussing but few can seem to agree on, is that we need to listen to each other, talk to each other and work together.

There’s an old saying… “Believe in yourself and others will believe in you too“. In this case, we have to accept each other so that others will accept us as well.

And by us, I don’t mean “non-disabled parents”, I don’t mean “disabled adults”… I mean us. All of us. Advocates. People. Human beings.

Telling each other to shut up or to speak up or what to say or what not say is not the best message to send to the world, it’s not the lesson we wish of others to learn, it’s not the example we need to set.

We all have a vision of how best to educate the world, we all have a vision of how everything would work the best… we all have our own visions. That’s part of what makes us all unique. Those visions all come from having a different life, different experience, different education, different soul…

So long as our visions create conflict, none of them will ever come to life. And it won’t be society’s fault. It will be our own.

Apples and Oranges are different, but they’re both good for the world. They both grow, reproduce, respond well to proper caring and nurturing… and at the end of the day, they’re both fruits.

In fact, maybe they’re not so different after all.

I really hope for the best in these discussions so that we can accept each others differences, rejoice in our commonalities and find a way to work together in educating others how to do the same.

Comments { 33 }

Who has a right to talk about Autism?

By on September 17, 2011 in Autism

Recently, Rob from Lost and Tired wrote a blog post called “We’re on the same team….right?” which, the title pretty much speaks for itself. And I’ve often written about how it seems that no matter what you say, someone will object to it. Someone will be offended and someone will hate you for it.

Sadly, that’s just the reality of putting yourself out there. People have differing opinions, and the more readers you get, the more likely you are to find them.

However, more and more recently, I’ve been encountering people with Autism that feel that no one has a right to even mention Autism without having Autism themselves.

Who has right to talk about Autism?

no voiceIn the post I mentioned, one person commented, basically stating that if you don’t have Autism, you can’t talk about it. If you went to check it out, you saw my reply, which wasn’t very professional but as I wrote and wrote, I quickly realized that I couldn’t possibly fit all of my thoughts into one comment on a blog post.

The comment in question is this:

i have the exact same issue – to me – people who DO NOT have autism have absolutely NO RIGHT to OPEN THEIR MOUTH because they do not have it themselves – and do not know crap about what it is like to have the condition, the social rejection of it, and so much more that it makes my head spin. i have the exact same issue with people who go to college to teach special needs / special ed when they ARE NOT special needs themselves !!!

I don’t know if he was being serious or referring to how some people have been in the past, but I have encountered this sort of thing enough myself. So either way, I thought I’d write about it here.

While I do understand the sentiment, I do understand where this person is coming from, I also can’t help but think that this is extremely counter productive, hypocritical and even rude in a way. Now don’t take the last few parts and skip the rest, as I said.. I do understand where he is coming from and why he’d say it. I just want to be able to explain why that’s not a healthy stance to take.

Parents

First of all, to tell parents that they can’t speak for their children is likely to get you into a lot of trouble. Parents are very protective of their children, it’s an animal kingdom thing, it’s instinctual and no one had better tell a parent that they have no right to speak up or protect their child.

I want for my child to not be bullied, I want for people to accept my child for who he is, I want for my child to have a fair chance in school, work and life in general… I want the best possible life for my child.

To tell me that I can’t try to speak up for that, simply because he has Autism and I don’t, is a bit rude.

Am I to sit on my butt, let him be bullied at school, learn nothing and have no help…. and just hope for the best? Because I have no right to speak up?

Understanding and Acceptance

The whole goal of raising awareness is such that people that know nothing about Autism can not only understand it, but also come to accept the people that have it. Meaning more jobs, better services, less judgments.

But how can people be expected to do that if they have no right to ever discuss it? How can there ever be an understanding? If only autistics can understand it, then there’s no point in explaining it or raising awareness of it and if there’s no point in that, then there will never be acceptance.

True, most people will never truly understand and it’s also true that most people will never fully accept it… but is that really what is needed? Or is it good enough that people understand it enough to be more accepting, enough to stop judging those that are different… enough to stop bullying or denying them based on what they don’t have and may never fully understand?

No thanks, I don’t need your army to win the war

While I do rather hate the war analogy that some people make in reference to Autism (usually in reference to pharma companies), but in this case, I think it fits… in the war on awareness, understanding and acceptance.

I mean, think about it. At 1 in 110 (or so, depending on where you are), you have a relatively small portion of the population fighting for services, acceptance and a fair chance getting what others take for granted, such as less judgments, struggles, bullying and so forth.

But if you could recruit your parents, grandparents, other loved ones, friends, family, charities, teachers and others to help you, to fight with you…. wouldn’t you want that? In fact, wouldn’t that be exactly what it is that you’re fighting for?

Not for them to necessarily understand “exactly” what you’re going through but to support you, to back you up and to speak up to reach all of the people that you can’t reach yourself?

Neurodiversity

One time, a person with Autism suggested (more or less inquired really) if it would be a good idea to have two groups, one with Autism being self advocates and one for others, such as parents. Which, on the surface makes some sense as people with Autism feel as though they’re foreigners to us and we can’t possibly understand exactly what it means to have Autism….  however, I feel that it kind of defeats the purpose of neurodiversity.

The whole point is, I think, to bring different people, who think diffrently, together and be considered equals with differences. That we accept each other, without judgment, that neither is superior, neither is inferior… we’re simply the same but different, if that makes any sense.

So to split us up based on our differences, in an effort to unite us… seems counter productive.

Awareness for all

To achieve the goal of learning about Autism, in understanding how it affects people (quite differently I might add), how to reduce the bullying, judgments and struggles of people with Autism… we must all speak out.

Positive, supportive and unified. Working together toward a common goal.

If you have Autism, you have to remember… that special ed teacher that speaks up, that parent that fights for services, that charity that raises money… it’s for you. It may be misguided sometimes, it may be without a complete understanding and it may even be wrong in some cases, but it’s the best they can do, for you and for all with Autism… especially their loved ones.

We all have a right to want what is best for the ones we love. We all have a right to wish for less hunger, less war, less racism and all of the things that we, as humans should be over by now. That includes discrimination towards people with special needs.

Whether we are in war, starving or are disabled ourselves… we all have a right to speak, because if we don’t, we are nothing.

What I’m trying to say is…

While I do believe that we all have the right to fight for what we believe in, especially when loved ones are involved, what I’m really trying to say is…. please don’t shut us out.

Please let us help. Yes, we’ll falter along the way… we’re not perfect and, as is abundantly clear, we can’t possibly know what it’s truly like.. however, as parents and loved ones, we’re the closest thing you have for bridging the gap between two groups that really never should have been separate groups in the first place.

Don’t ask us to hope that our children will one day be able, willing and strong enough to fight for acceptance. It’s our greatest wish that one day, they will… but we can’t possibly put that burden on them… especially if we spend our time together on the sidelines. If we are unable to speak, that is what our children will learn from us. If we are unable to stand up for what we believe in, we can’t possibly force that responsibility on our children.

Autism is your world. My child is my world.. and my child has Autism.

Let us help our children. Let us help you. And forgive us our mistakes.

Comments { 13 }

My own little world – Important place to be but don’t get lost there

By on September 8, 2011 in Autism

The phrase “own little world” is often used to indicate ignorance, that a person has no idea what is going on in the world outside of their own life.

I like to think of it more as an indicator as to what is important. You see, what ever is happening in my own little world has the utmost importance to me. It’s what I know best, it’s what I care for most and it’s what is most important to me.

There’s nothing wrong with your own little world, everyone has one and everyone should be proud of theirs.

My own little world

our own little worldFor me, my own little world consists of myself, my wife, my children and my pets… that’s it. That’s what I know better than anyone else, it’s what is more important to me than anything else and it’s what brings me the most joy.

For some people, it might be only their children, only their spouse… it may be just themselves, if they are focusing on their own happiness before starting or without having a family.

You protect your own little world even if it means getting a little bloody because there’s nothing more important in the whole world.. than your own little world.

But…

Don’t forget there is a bigger world out there

I find that, especially when it comes to parenting, and 10 fold more when it comes to Autism, people easily get lost in their own little world.. and when they step out and look around, they forget that things are different out there.

I know I’m not telling you anything that you don’t already know, but we all need reminders sometimes. Hear me out for a minute…

We Autism parents write about our experiences and sometimes, when we’re lucky, we write something that you can relate to.  However, the very nature of Autism, as we all know, is that the experience is different for everyone.

This presents a very interesting problem…  we write about our own little world, which doesn’t match up with other people’s little worlds… there are two possible outcomes:

  1. One or both parties recognizes that their own little world is different, accepts that fact and either does not comment or does comment, stating how their own experience differs
  2. One or both parties denies the existence of the other person’s little world, proclaiming that they are liars, misguided, ignorant or just plain wrong and that they are doing a great disservice to the entire world (which I’m assuming is their reference to their own little world but we both know it isn’t)

More often than not, I see #2 all over other people’s blogs. (pun intended)

Take a deep breath

The problem with this is that it requires both parties to remember and recognize the “my own little world” phenomenon and take a deep breath, relax and accept that we all have different experiences with differing opinions.

Not just both parties, but many many parties… the more popular a blog becomes, the more that little worlds come into contact with it… some of them collide.

Just this morning I tweeted: Autism is like a rainbow; it has a brighter side & a darker side, every shade is important & beautiful and it hides something golden.

To which, one angry parent was rather mad that I’d call it a rainbow (I didn’t, it’s a comparison), proceeded to remind me that Autism is a serious disability and that “fluff” like that doesn’t help those who suffer from Autism.

He didn’t take a deep breath.

He completely skipped the “darker side” reference as well as the part that says that it “hides something golden”. I mean, yes… I’ll admit to the “fluff” but it’s not all peaches and cream either. I felt it rather adequately expressed the darker points… the “suffering.”

Anyway, as I said, he didn’t take a deep breath, instead acting instinctively to attack me for not telling his story… for not telling everyone about his own little world.

However, that’s not my place. I can’t tell other people’s stories for them.

And so…. I take a deep breath, and I remember that his own little world is what he knows and is what is more important to him. In his way, he’s protecting that.

My own little world is different. I can accept that.

And when I read about his experiences and his story… I’ll remember to respect that his own little world is vastly different than my own.

Please keep in mind that, what you experience in your own little world, might not be what someone else experiences. Their story is completely different. They share their story, not to fight with you, but to show you just how different things can be… and maybe, sometimes, just how much the same they can be too.

Take a deep breath. Your own little world is not threatened by others sharing their own story. Your own little world is still your own, you still know it better than anyone… and most of all, it doesn’t mean that anyone thinks you are ignorant of what’s going on outside of your own little world. At least, it shouldn’t.

Just take a deep breath. In fact… you should rejoice that no one else’s little world is the same as yours. If it was, it wouldn’t be your own.

Comments { 6 }

My boys are never more different than when they are sick

By on February 28, 2011 in Autism

T’is the season for.. illnesses.

It’s never a fun time… either your children are sick and you’re getting no sleep or you’re sick and you’re getting no sleep or everyone is sick and… what’s sleep?

The last week now, both of my boys have been sick. I’ve been lucky enough to avoid it but having now just told the world that, I fully expect to be sick around this time tomorrow.

My oldest son is 5.5 and has Autism, as such, he tends to be pretty energetic and what you would call, pretty wild. He tends to be all over the place. My 3 year old does not have Autism and while he is also a ball of energy, he’s more controlled and less likely to be all over the place.

Introduce the flu.

3am rolls around and both boys are heading to the bathroom, neither of them is happy. Coincidentally, neither am I. I’m not mad either but I’m certainly not happy.

So the morning creeps up in my sleepless haze and I am on the phone to tell the bus driver not to stop here today and I’m trying my best to get my boys to drink some water and I can barely keep my eyes open… but as the day continues forward, something becomes very clear to me… my boys handle illness so very differently!

Cameron, my oldest, who is usually all over the place, is now fast asleep on his bedroom floor, or lying in a corner behind stuffed animals, or just laying down all glossy eyed on the couch. He doesn’t complain though. He sort of feels something isn’t right but otherwise, feels no pain. He just wants to be left alone.

Tyler on the other hand, that is usually far more controlled, is drawing on the black board, throwing toys all over the place, asking to go outside and play in the snow and really not wanting to have his afternoon nap. At the same time, he cries because his tummy hurts so much or because throwing up is so yucky. He becomes the ultimate sucky sicky.

I don’t have any profound bit of knowledge or any insightful reasoning to share with you as to why this happens but I do find it intriguing enough to write about.

As I shared these revelations with others on Twitter and Facebook, I found that I wasn’t alone in having an Autistic child kind of “shut down” when sick.

Cameron has an unusually high pain tolerance and for his entire life, even when very young, we really would have no idea when he was sick except for the fact that he’d just lay there instead of playing or doing anything.

Tyler, on the other hand, we’d know immediately because he’d cry in his sleep, before even he knew he was sick.

They’re brothers, one does something funny, the other copies… they share everything, they say the same words wrong, they want to have the same cups, pajamas, treats and games. They get on each other’s nerves but they want to be like each other.

But when an illness strikes… they couldn’t be more different.

By the way, they’re both feeling much better now which is why I’ve finally had time to write about it. But now, I’m going to crawl into bed and get some sleep!

Comments { 5 }

Let me tell you a little about celebrating Autism

By on February 13, 2011 in Autism

When I tell the average person that my son has Autism, they feel really bad for me. The fact is that there is a lot to celebrate.

Milestones are an achievement, not just an item on a list

When you have a child with Autism, you learn to appreciate the milestones, both big and small. Some would say that we celebrate a little too much for such little accomplishments but I’d argue that we celebrate accordingly, it’s other parents who take them for granted.

First words, learning to walk, swimming, riding a bike, reading, writing… all these things that make parents proud are far more than just steps along the way when your child has Autism… they’re cause for celebration.

Take nothing for granted

Along the same lines, but very different from milestones, is taking nothing for granted. Unless you have a child with Autism (or another disability like it), you’ll probably never know what it’s like to be lucky enough to be hugged one time a year.

Does your child look you in the eye? If your child has Autism, maybe not. Does your child give you a hug or kiss sometimes? If your child has Autism, maybe not.

You will never ever realize just how much the tiniest little things can be so extremely important until they’re not there.

Patience, more than you ever thought possible

The biggest problem with milestones is that everyone knows what they are and when they should happen so when your child is missing them, everyone says something. It’s hard, it’s oh so very hard.

After a while though, you develop a thicker skin… not just the patience required to take their “advice” a little better but also to have the patience and self confidence in knowing that if you never give up on your children, the milestones will come.

The beauty that is around us

The world around us moves pretty fast and can be so filled with sights and sounds that it turns into a bit of a blurry mess. Our mind makes it that way to keep us from becoming overwhelmed, crazy and tired. We filter through a lot of everything that goes on in our daily lives without really realizing it.

Many people, especially the children, with Autism don’t have the same filtering capabilities and often times do get overwhelmed by it all. This often results in meltdowns or even violence.

You, as the parent, become increasingly aware of the world around you because you have to, because you need to know what you are getting your child into. Loud restaurants, carnivals, movie theaters… many many places can be far too difficult for your child to be able to process and you need to be aware of that before the fact.

As you develop this ability over time, it forces you to slow down and truly appreciate the sights and smells and sounds that surround us every single day.

You go outside and there isn’t a car in the neighborhood… it’s so very peaceful. Before you likely never would have noticed, much less enjoyed that feeling of peace, because your mind builds that filter in place before you ever go out and so you don’t notice if there are cars or not.

Your child is perfect because of who they are

It isn’t until others see your child as flawed, and worse, until you start to see your own child as flawed, that you can learn what is truly important… not a disability, not a disorder, not even a gift… a child is who they are inside and who they are inside is exactly who they are supposed to be… your child.

It’s ok if no one will ever look at your child the same way you do, they’re not supposed to. Our children are amazing human beings with unlimited potential.

The difference

Celebrate the differences, not just in your child, but in yourself. For better or worse, you’ve become a better person for it, you’ve become a better parent.  Your child isn’t like other children… and that seems hard to take but honestly, before your child was born, and you saw how “other children” are on the news or in movies… is that really what you wished for when you imagined having a child? For them to be like all the others?

No, none of us want our children to have it harder than anyone else, and no we don’t want our children to suffer… but many of us recognize that we can have these thoughts and these feelings while still being able to recognize and celebrate the differences.

Your child is amazing. You are amazing. Celebrate it… you’ve earned it.

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