Tag Archives | differences

Why don’t you celebrate New Years Eve?

By on December 29, 2011 in Autism, Autism Holidays

I get this question a lot, because it seems very much out of the ordinary to not be up at midnight, getting drunk and kissing someone at the stroke of midnight. To not do it is… blasphemy!

The answer is really quite simple.

happy new yearI wake up at 5am many mornings, sometimes earlier, sometimes I wake up often through the night. I have 2 children that require a lot of my time and energy even when I work 8 – 10 hours a day. By the time it’s 9pm and my boys are asleep, I’m ready to go to bed myself but I can’t because there is still more work or chores around the house that need doing.

So I get to bed around 11pm and again, sleep 6 hours or less if I’m up often due to the boys… and do it all again. And I do this 356 days a year.

So already the answer is forming…. but there’s more.

My oldest boy, Cameron, has Autism. That means that we can’t just hire any teeny bopper with a need for some cell phone minute money to come in and take care of my children.

In fact, even most responsible adults are not really ready to take on that task. Only those that know him well. And those people tend to have full lives of their own already so are not readily available.

Take a special day like New Years Eve and.. well, those older, responsible, living life people are already doing something on New Years Even that doesn’t involve being stuck in my living room while some kids that are not theirs are sleeping.

So no… we don’t go out and celebrate New Years Eve. In fact, we don’t even stay up until midnight.

Because when you add it all up, when you really stop to think about it… the needs of your children, the happiness you get from their achievements, the importance of you being there for them when they need you… all of what entails being a parent…  Dec 31st becomes just another night.

You’ll still be ready for bed at 9pm that night.  The kids will still wake up early the next day.

Besides, it’s not that I don’t “celebrate” it… it’s just that I don’t do what everyone else thinks I’m supposed to do. I give my wife a hug and kiss. We say “Happy New Year” to each other and to others as well.

It’s just different and believe me, different is one thing that we’ve become quite comfortable with around here.

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That could apply to anyone

By on December 15, 2011 in Autism

I can’t even begin to count the number of times that one of my statements or posts were responded to with “actually, that could apply to anyone” or something along those lines.

Some of my favourites:

  • That could apply to all parents
  • That could apply to any child
  • That could apply to any group of people
  • All people should do that
  • Everyone would be better off thinking that way

Why does it bother me so much?

For the first hundred times or so, those responses rather bothered me because this blog isn’t about most people… my twitter account is not about humans in general. I focus on Autism and that’s what I write about.

It also reminds me of all of the times where I’ve tried to explain the ways Autism affects my child where people would respond with “but that’s something a lot of children do” or “ya but that could just be a phase.”

It’s not exactly a closed minded response but in the moment, to a parent with child that has Autism, it can feel like it. You just want to grab them by the collar and say “You’re not listening to me!” Well, ok, maybe not to that extreme but it is frustrating.

For a while, it got on my nerves, making me want to reply to them… explain that the world isn’t my focus, Autism is… but after the first hundred times or so, I started to like hearing it.

dare to be differentIt does apply to anyone!

The truth is that people say that because the things I share really do apply to all parenting, to all children and to all others in general.

Parenting methods, children being children…. almost all of any of the things that we can talk or write about in regards to Autism truly does tend to apply to anyone. We all know that, it’s not the individual “quirks”, it’s the amount of quirks and severity of those quirks which indicate the presence of Autism.

I say “quirks” because when it’s not Autism, that’s what they are.. quirks. Right? A stimming behavior without the communication impairment, social issues or other symptoms is simply a quirk.

So when I write about routines, methods to improve behavior, general observations about how people are, parents are, autistics are… the truth is, 99 times out of 100, those things could apply to everyone.

And that’s a good thing… because autistics are everyone. “Different, not less” is right but at the same time, everyone is different. And if everyone is different, then we’re all the same too. Our differences don’t divide us… they unite us.

So yes, it still bugs me still… in a way, because I didn’t call my website “EVERYONE from a father’s point of view”… so I’m not going to write about everyone. But at the same time, in a way, it brings me comfort that the things I say about Autism and autistics really could apply to everyone.

Every time someone says that, I’m reminded once again that maybe autistics aren’t quite so different after all.

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Understanding… The bigger picture

By on November 16, 2011 in Autism

For the last couple of years, I’ve really been pushing the idea of taking awareness of Autism and upgrading it to understanding and acceptance. I truly believe that, while awareness is a great start, it’s simply not enough in that, being aware of something doesn’t necessarily mean you understand it. And what most autistics need is some level of understanding and, of course, acceptance of who they are.

Understanding of…

The thing is, you don’t have to necessarily understand every nuance about Autism… it would be nice. If everyone just instantly knew all about Autism, acceptance would be a breeze. But you don’t have to.

What you do have to understand is that there is a reason.

When you see someone acting strangely on the street corner, when you see someone being mean and rude in general, when you see someone hitting themself, when you see a person being… not what you expect… there is a reason.

Perhaps the person has a disability/special need, perhaps the person had a really bad day (fired, family member died, lost everything), perhaps the person simply is the way they are… it is not personal. It’s nothing against you.

All you need to do is understand that there is a reason. Rather than say “that person is weird” or to think about how what they’re doing affects you… instead, ask yourself what the reason could be. Perhaps it’s bigger than you think. Perhaps it’s not. But there is a reason.

It’s not always Autism… so it’s not just for autistics that I push for understanding.

But I do know this. If people stop judging and take a moment for greater understanding when they see an autistic acting “against the norm”… then perhaps those people will take a moment for greater understanding in all circumstances.

Don’t let someone lashing out at you affect your day. They had a reason and it wasn’t you. Don’t let someone acting strangely affect how you see people. They have a reason… they’re not strange.

Greater understanding… it starts when you stop taking it personally and judging the person for it.

Acceptance

With understanding comes acceptance… once you come to understand how a person is, how they think and who they are… you accept them.  You may wish to avoid the person who lashes out at strangers when they have a bad day, but you accept them for that.

Same with people with special needs, or even just regular every day people who go about their life differently than you do.

They have a reason for being who they are just as much as you have a reason for being who you are. And if you understand that, you can accept that.

I want for people to accept me for who I am just as much as I want for people to accept my children for who they are. Not because one has Autism and not because one does not. But because they are who they are.

Just One

If you can gain understanding and acceptance for just one new person, someone you see as different than yourself, someone you do not yet know… then you can do it for anyone and everyone.

It doesn’t matter if it’s Autism, Tourettes, Down Syndrome, political differences, religious differences… anything! If you can gain greater understanding and acceptance of anyone… you have the tools necessary to do that for everyone.

Be quick to to understand…. not judge.

acceptance

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The common, not so common, issues

By on October 18, 2011 in Autism

One of the problems I often encounter when discussion Autism with someone that does not know much about Autism is overcoming their need to relate.

Which sounds really odd, doesn’t it?

The Problem

Here’s the problem: for every sign of Autism that I explain, the response is often “but a lot of kids do that”.

And when that happens, you kind of have to go…  “yeah… a lot of kids do do that, but not like this and not with the combination of all of the other things my child does.”

Here’s a quick laundry list of Autism symptoms, off the top of my head, where “a lot of kids do that”:

  • meltdowns
  • not listening/ignoring
  • get aggressive
  • get bullied
  • be shy
  • picky eating
  • have trouble sleeping at night
  • speaking delayed
  • miss milestones
  • be repetitive
  • need routine
  • wander off/elope
  • refuse to look you in the eye
  • be brilliant

The list goes on and on… and when your child is having an issue with one of those things and you mention it to someone, often times the response is “yeah but a lot of kids do that.”

Understanding

same but differentThis is why the DSM tends to combine signs, meaning that your child has to have several signs and meet several areas of criteria in order to qualify for an Autism diagnosis.

The truth is, they’re not wrong. A lot of kids do that!

Here’s the thing… most kids go through phases, most kids don’t do these things to the same extent or severity and most kids don’t do many of these things all at the same time… making it a fully quantifiable disability.

And that is what is so maddening when someone responds to me with “but a lot of kids do that”.

It’s a struggle to admit that they’re not wrong and yet they’re so far off base at the same time… how do you explain that without upsetting them? Especially those stubborn family members that are so certain they’ve “been there, done that” and that you’re just young and “finding out what it’s like”.

See, I can see you sneering right now because we all have those family members.

In these cases, it’s best to remember the 3 key points that make your experience different from theirs:

  1. Most kids go through phases. Autism is for life.
  2. Most kids do these things to varying degrees. Autism tends to be all or nothing.. to the extreme.
  3. Most kids do these things one or two at a time. Autism means that several or even all of these signs are present.

If you really want to throw it in their face, you can add a fourth point… that their children were just brats and yours has an actual disability. This often results in a discussion about how much medical experts know and don’t know vs now and then, how they just have to give everything a name these days and so on… so it may be best left out.

Chances are, if you’re like me, it will really bug you every time you hear “but a lot of kids do that” but you have to remember that they mean well. They’re either trying to relate what you’re saying to what they know or they’re just trying to show their support, in their own weird way. That they “understand” what you’re saying because they’ve seen it.

Then you can hand them the gluten free food and/or therapy bills and say “consider yourself lucky that not a lot of kids do that”.

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Recognition for the caregivers in the Autism community

By on September 27, 2011 in Autism

There are a lot of discussions all over the place about non-disabled parents of disabled children, disabled parents of disabled children and those that are disabled without disabled children… who can and can’t understand what, who can and can’t advocate what, who’s voice holds more weight… on and on and on.

These things will be worked out over time, hopefully all mutually agreeable and beneficial… a world of peace, love and happiness for all on the horizon.

However, those not being discussed, and I think really should be, are the care givers.

Not part of a community?

caregiverOne day, discussing Autism related issues on Twitter, a woman replied with a rather insightful comment and then was quick to apologize, as she really had no place to get involved in such a discussion.

You see, she is not autistic nor does she have any children with Autism.

What she does have is an amazing amount of love and wisdom within her that had, for the most part up, until that point, been quiet.

As a woman who has cared for many children with Autism and continues to care for children with Autism, she does not feel as though she is a part of the Autism community.

She reads all of the books, the studies, blog posts, she attends seminars and even went to school specifically to do what she does… but she feels that she has no voice because it’s not her place.

To me, that’s not just a shame, that’s a tragedy.

What one has vs what one does not

You see, I have a great deal of respect for those with Autism and those who have children with Autism because they have a lot thrust on them against their will. They are kind of thrown into the deep end of a life that they likely didn’t expect and may not even want (some of them).

They are forced to educate themselves, to research everything they can… they even have to learn to love themselves in ways that many people don’t.

I’m talking about both the parents and the autistics themselves. It’s a struggle for both. It’s big, it’s scary and it’s wonderful too… it’s different for everyone but it’s big all the same.

Care givers (most of them) don’t have that. They don’t have the life changing diagnosis for themselves or their children. They don’t have that cycle of denial, acceptance and all the other emotions and epiphanies that many of us have.

A care giver has to want it, they have to love and they have to need it.

For many parents and even autistics, this will likely be a very foreign concept as most people would never want it, much less need it.

But these care givers do. They do the research and the seminars, they do the schooling and the reading because it is what they want to do and it’s what they love to do.

When it’s not you…

For me, personally, when I really stop and think about it, I’m in awe. Because I know that I wouldn’t have the same patience level for other people’s children… especially if I didn’t already have an autistic child myself. I also know how I feel when I meet other parents that not only parent differently but do things I simply can not agree with, do things that are detrimental to their child’s development…. these care givers face that almost daily.

Care givers have to work with those parents, they have to deal with the non-verbal, aggressive, non-toilet trained children that are not their own and that have parents that either don’t understand, don’t know what to do, don’t care or… hopefully, do all the right things but simply need help.

And yes, I know you’re going to hate the “deal with” part of my last statement but remember, this is a care giver who loves those children. But it’s still something they have to deal with. It’s not their children, it’s not a life that was thrust on them.

I often write about how much patience I have thanks to my son, how we all become such better people thanks to our children and all of the wonderful things that having an autistic child can teach you…

But these care givers have more patience than I do… and they already knew all of those wonderful things before I did… it’s in them. It’s always been in them. They always were the better person that I’ve been working at becoming.

What’s in a voice?

I am very proud that woman spoke up and I am very happy she did too.

No, she is not autistic and not a parent with an autistic child, she’ll never “truly know” what it’s like to have Autism or a child with Autism… but that’s what makes her perspective an important one. One that I value.

Perhaps she will never blog about having Autism nor will she blog about what it’s like to raise an autistic child but when she does talk about Autism, in what ever form she does…. I’ll be sure to listen.

Because she came to us… and because she loves it. And without her and people like her, we wouldn’t have come as far as we have.

She sees children learn to speak, she sees children do amazing things! She works with them, she plays with them, she hurts when they get hurt and she celebrates their victories.

In conclusion

What I’m trying to say is, if you’re a care giver but feel it’s not your place to give any input or an opinion… I’ll listen to you.

Even if we end up disagreeing on something, I’ll listen to you.

Chances are though, I’ll likely learn something and I’d hate to miss it.

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