Autism or not, mediocrity should not be a goal

mediocrityAh mediocrity… the desire to be average, just like everyone else. We feel so down on ourselves but not greedy enough to want to be better than anyone else… just to be in that nice safe middle ground where we consider ourselves an average person.

Is there really such a place? If there is, does that “average person” place change when the majority of people have economic struggles and unprecedented levels of unhappiness and even depression? Is that place really what we’re supposed to be shooting for? To be average?

Ever stand around with a group of people talking about “kids these days” and how it doesn’t matter which government party you vote for, “they’re all the same”… did a single one of us ever think it was ok that billionaires got even richer while everyone else foreclosed on their house?

Is that normal? Is that how society is supposed to be? Do I really want for my children to grow up to be “normal” or to strive for mediocrity in the midst of all of that?

Autism

The sad fact is that for many parents of children that have Autism, that’s exactly what we wish for. For our children to have an equal chance, to have a normal social life… to have a chance at happiness with friends and even a family of their own.

Autism sometimes leaves a child unable to speak, use a toilet and so forth… they can be quite aggressive, prone to outbursts and certainly unable to maintain a friendship.

It’s easy to understand how a parent would wish for them to simply have what others have… a chance to be average.

Settling for good enough

There’s an inherent disadvantage in shooting for “just good enough” in that, if it’s your target… you could miss by a little bit and never reach it. Where as, if you shoot for so much more than that… if you don’t make it, you’ve still far surpassed “just good enough.”

Put it this way… if you aim for a 10… and get 9, you were close. But if you shoot for 50 and get 35…. well, you’re not really even close but aren’t you glad you didn’t shoot for 10?

I know, that’s incredibly simplistic but most anyone who’s put those methods into practice will tell you that this kind of mindset does work. It does force you to push harder than you have before.

In the case of Autism, you may get your child into therapy once a week, you may try to get him a teacher’s aid if funding is available…. where as, if you decide to shoot for so much more than an average life.. you will get on that phone, show up in government buildings weekly and have letters written daily in the mail pushing for a special education, separate therapists handling separate areas of development bi or even tri-weekly.

You don’t have to spend a fortune either… just have that desire, that hunger… that need to push for so much more than mediocrity.

It’s not that easy

When the average person begins learning business… they find that they need separate courses in management, finances, economics, human resource management and the list goes on and on.

The question is, do they start on this path with the intention of having a business that earns them minimum wage like their friends make… or to have a successful business and live a comfortable.. maybe even high class lifestyle?

The point is, nothing worth having is easy. It takes a life time to get the life’s worth of experiences to get yourself into a position to have a better life than the average person. These days, even winning the lottery won’t get that for you… most lottery winners claim bankruptcy within five years of getting their winnings. Why? Because they don’t have the life skills/experience to know how to manage that new lifestyle.

But I don’t care for all that

I hear ya, I have never cared for being rich myself but I sure would like to have enough money to be able to buy things I need without having to worry about whether or not I’ll still have enough for rent.

Truth be told, I’d love for Cameron to have an equal chance just like everyone else as well but that’s not my goal. I know there’s greatness within him… and I don’t know when or how it’ll show itself… I honestly don’t even know if it ever will, but it’s that greatness that I’m in search of.

If I never give up on that, if I always work towards that…. then one day he’ll far surpass mediocrity and I’ll have either reached the goals I had set out for him or I won’t but I’ll be proud of how far he was able to go.

I up rooted my family and moved to where I knew there would be teachers and a school system that would support him. I gave up my house and my job and friends and even my family to get him here… not because I want him to be average.

He was 3 and didn’t say a word…. but mediocrity wasn’t what I wanted for him. A lot of therapy later, working with him ourselves (his mother and I) and some radical sacrifices (giving up our home, moving and even giving up other things to afford therapy), he’s now speaking quite well and even reading three and four letter words. He’s even doing addition. He’s almost 6 now, starting grade one next year. He will surprise all those people who said he’d never have a “normal life.”

You don’t need to shoot for riches or to be the next great thinker for the history books… but don’t shoot for being average either.

Everyone is capable of so much more. Even if it may not seem like it right now, the potential is there. It’s up to you to never give up on it and it’s not going to be easy. But don’t feel guilty for shooting for the stars.

The Autism will always be there, in our children…. but so will their potential… so will their greatness.

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Forgiving the volcanic emotions

If you are familiar with Autism in the slightest, you’re likely familiar with the term “meltdown.” There is no specific definition for this in terms of an Autism behaviour so I’ll give it a go:

A term describing a complete lack of control or reasoning during a temper tantrum as a result from prolonged or overwhelming stress

That’s how I would define it, I think it is specific yet vague enough to explain what it’s essence is. The problem is that it has more specifics such as what causes the stress, such as sensory overload, fear, anxiety, frustration and so forth… which means that there are quite a few things that can trigger a meltdown.

Lack of control or reasoning

volcanoThe key point, I think, is the “complete lack of control or reasoning” portion of the definition. Again, this sounds specific but in a sense, it’s actually kind of vague and I’d like to explain why.

When you hear “complete lack of control”, you tend to imagine someone flailing around, screaming and maybe even writhing on the ground but it’s not always that way. What you’re picturing, most likely, is a child.

However, as those children grow older, that type of meltdown will become less likely, seeming far more controlled yet still fitting the definition that I laid out before you.

As an Autistic gets older and they develop language, structure and maybe even a life of their own… they can gain a lot of control over their emotions and thus, learn how to avoid meltdowns. Also, when they do happen, they’ll look entirely different from what you pictured with the child on the ground.

An adult, or even an older child that can speak, may lash out verbally, maybe even physically… they may say the absolute most hurtful thing that enters their mind, they may hurt themselves, they may seclude themselves away from all others, they may even have what would look to us like a nervous breakdown.

For the most part, all of these would appear to defy the definition. People can stop themselves from saying hurtful things or from hitting someone or from hurting themselves. People can avoid a nervous breakdown if they calm down, breath deeply, relax… people can seek out help rather than become isolated.

These seem like choices to us because as we develop, we learn how to recognize these situations and make those choices.

That’s not always true for an Autistic.

A meltdown is still a meltdown even if it seems like something we’d have done by choice. An outburst, a hateful response, violence… these things may be happening completely beyond the Autistic’s control and reasoning.

When this is the case, when it is beyond their control, a grieving period usually follows where there is extreme levels of guilt that they have to get through.

And you and I would think that if there is that much guilt, they’d try harder to not do it next time, or “learn from it” but you have to understand, that’s probably not possible.

I titled this post “volcanic emotions” for a reason… if you can picture a volcano where pressures build and build and build for a while and then finally hit the breaking point where all that pressure is released into a huge explosion of ash and lava… you can then also picture what is happening inside many of these people with Autism.

Young and old, the pressures of stress tend to build and grow until eventually they’re released in an explosion and that explosion is a meltdown. Whether it be flailing around on the ground screaming or lashing out with hurtful words and aggression… it’s beyond their control.

Doesn’t therapy help with this?

Yes and no… it helps. The real progress is made when the person is able to recognize the rising pressures of the stress and take measures to avoid it reaching volcanic proportions. This is a way to avoid it from happening, not from controlling it when it happens.

Why isn’t there a way to control it when it happens? Well, I’m not a scientist and even if I was, I wouldn’t bore you with scientific terminology however I will say that recent studies have shown actual physical differences in genetic make up, pathways, and more within the brain of those with and without Autism. Physical differences.

That means their brains physically work differently. That’s not something you can change with therapy.

Forgiveness

Therapy is important, avoidance is important… we all function so much better without stress, without nervous breakdowns and certainly without meltdowns in our lives.

If we can’t control ourselves when it happens, then it’s certainly important to learn how to avoid it from happening at all.

However, in those cases and situations where it’s unavoidable and it does happen.. it’s important to forgive those that went through it as well as to forgive ourselves if we were the ones experiencing it.

We can’t be mad at those that did or said something while out of control nor can we be mad at ourselves. Actually, we can be mad, being mad is quite alright and healthy. After all, those things did hurt. However we must also be able to forgive.

Whether you hurt someone or someone hurt you, you have the capacity to forgive… especially if they feel guilt, especially if they still love you.

It’s not an easy situation to be in, if someone has meltdowns regularly or even rarely… you feel that they should stop after a certain amount of time but they don’t. And it begins to build pressure and stress in yourself… making for two sources of stress coming together.

If you can’t understand and forgive… for their sake and yours… the pressure will only continue to build until a whole new volcano of emotions erupts.

 

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A special request, an Autism Birthday Wish

birthday cupcakeMy birthday is coming up, June 5th, and I wanted to ask a special request of you.

No I don’t want presents or money. I don’t really even want anyone to know that it is my birthday to be honest. I’m quite content with just going about my business.

However, there are a few things that I’d like for you to do for me, if you’d be so inclined. I’ve listed them below and I ask that you do one or more or all of them.

Donate to the charity of your choice

It would mean even more to me if it’s an Autism charity but it’s not necessary. If you have a favourite charity that improves peoples lives, that really helps people and is working hard to make a real difference, please make a donation.

I’m not asking for any specific amount, nor for you to do it in my name. I’m not even giving you a charity or list of charities to choose from. But to just do it because I asked you too.

Volunteer your time

Much like charity, donating your time is a wonderful way to help out and make a difference. It need only be for a few hours, it can be in any place that works to benefit people.

Just set aside some time one day and dedicate a little time to volunteering at a place that will have you. It doesn’t even have to be on June 5th. You can do it one long week-end where you get an extra day off anyhow.

Don’t let the negativity out one time

This is something that I practice as much as I can and it really does make a difference in your own personal life.

What I do is, each day, I catch myself before I say, write, share or even think one negative thing. Whether it’s me thinking that I can’t do something or being upset with someone else for what they said or did… I stop myself, realize what it is that I’m doing and stop myself.

Instead, I think I can do it, I am not here to judge and I don’t have to get into an argument just because someone on the internet was wrong (that one is hard!).

One time, when you feel down on yourself or get mad at someone in the next few days, or each day if you can…. think about me and think about how I asked that you not do it.

Conclusion

I don’t need anything for myself. What I really want is for people to stop fighting, for people to work together and for people to pitch in a few of their off hours or a little money.

You don’t have to tell me you did it and you don’t have to do it in my name. Just do it and feel good about doing it.

That’s what I like to see most.

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What to say and not say to a parent that has a child with Autism

I’ve written quite often about how having a child with Autism forces you to have far more patience than you ever thought you could have… but there are still limits. And even though your patience levels can seem limitless for your child, you may find that you don’t have the same tolerances when it comes to others or some of the ignorant things they say, whether innocently intended or not.

There are a few lists out there of things not to say to us parents, but this is more of a list of things not to say or else you may just push us beyond the breaking point. Don’t worry though, I’ll follow it up with some things that I think would actually be nice to say.

do not sayDo not say

  • Your kid just needs proper discipline
  • My kids would never get away with that
  • What made your kid autistic? Was it something you did?
  • You shouldn’t take your kid out if they’re just going to be like that.
  • Your kid doesn’t look autistic
  • Are you sure your kid is autistic?
  • Why would you have more children if there’s a risk they could have autism too?
  • Have you thought about a group home or institution for your child, so that you can go back to having a normal life?
  • Sorry, I don’t really want my child to play with yours.
  • Your kid is defective
  • Your kid will grow out of it, right?
  • Autism? That’s like Rain Man, right?
  • It must be nice to get special funding or special help!
  • I hope my kids don’t end up like yours
  • You need to watch your kids better
  • Maybe you’re just bad parents
  • But all children do that
  • But your kid was so good for me
  • Referring to your child with a nickname such as “rain man” or “stimmer”

Yes, these are actual phrases I’ve heard or have heard second hand (parents told me someone said it to them). Ok, now that your blood is boiling, let’s continue on.

Here are some nicer things to hear.

Do say

  • You’re doing such a great job
  • I don’t know how you are able to do so much
  • Your child is progressing so well, you must be very proud
  • If I can help, just let me know.
  • I don’t know much about it but I’m willing to learn
  • I’ve read some studies, heard the news but I’d love to hear what you think

I’d love to hear from you. What have you heard or what would you like to hear? I’ll update this post with good suggestions.

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Apple packaging, Autism and blogging. Putting it all together.

As I learn more and more about Autism, through the community, educational information and my best instructor, my son… I’ve come to learn what will and won’t overwhelm him before he has the chance to notice it.

A funny thing has happened though, I’ve come to appreciate the simplicity in some things… most notably, Apple’s packaging practices. Not just the box they put their products in but their devices as well. Ipad and Iphone? A big apple logo and one button. The boxes they come in? A picture and a logo. Simple.

When I look at other products, from their rivals Microsoft to cereal boxes, I find so many pictures, colours and information thrown at me that I become overwhelmed myself.

I started thinking to myself, how can I relate this information to my blog?

Simplicity

I have tried a few different designs/themes across several blogs in the last several years, I’ve even had three different designs on this blog alone in the last year. Some were flashy, some were bright…. no matter how much they seemed great looking to me at first, in practice, I’d find that it just didn’t feel right.

I’d use each theme for a while, adding in some posts, playing with some options but it always just felt wrong. And I didn’t know what it was.

As I said, I’ve been learning. And what I’ve learned is that my blog didn’t feel right because it was overwhelming.

It was an Autism blog, that I kept trying to fill with more and more stuff. Animations, pictures, graphics.. fancy stuff!

The truth is, many of us have picked up the practices of our children. We seek out the places and situations that won’t overwhelm our children and in time, we begin to seek that out for ourselves. So when we get to a blog that has too much on it… we get overwhelmed.

Keep it SimpleA nice white site, some black (or almost black) text, a nice clean font, a few splashes of colour as opposed to tons of colour, some separation of information and spaces so they don’t become jumbled… these things make for a great reader experience. They don’t even have to read the first word yet to already feel a sense of ease when they take that first look.

Information

Obviously you don’t want to cut back on information for the sake of making things simpler, but you can help avoid information overload.

When you first start a blog, everything you put on it is important. Categories, blog roll, page list, archives, tag cloud, profile information, and so much more. You fight with yourself trying to sort it all, putting the most important stuff at the top, then re-organizing it, adding more… and so on.

Eventually you end up with a blog that has twitter feeds, facebook badges, social bookmarks at the top and bottom of each post, advertisements, news feeds and other stuff all over the place that not only slows down the site, but your visitors have no idea what is what or where.

The result is that you’ve given them an encyclopedia of information and no index with which to find anything. They load a page, go into information overload and do their best to put blinders on. The only way to find what they’re looking for (your blog post) is to do their best to not look at everything else.

What’s important

You have to realize that the only thing that’s important on your blog is your blog post. If they have trouble finding that, you’re in serious trouble. It should be clear, easy to read and without distractions.

More so than that, try to think of the rest of the items on your blog as tools to compliment your blog posts. Categories, page lists, archives, search box, tag clouds… these things help people to find and sort through your blog posts.

Everything else that you add is extra. That’s not to say that you can’t add them, but keep in mind their purpose. They’re extras. They shouldn’t be bright, flashy, in your face or anything else like that.

Those things will not keep a reader coming back. Your blog posts will.

Don’t go for the brightest, flashiest, most feature rich blog theme you can find and then load up on plugins… you’re only going to overload your reader and you’ll be lucky if they return for a second time… no matter how great the blog post is that attracted them in the first place.

If your blog is an Auism blog, it’s doubly important. Your readers are parents, short on time, eager to learn and share, possibly short on patience and if they’ve been at it a while, possibly easily overhwelmed.

Summary

  • Don’t make it hard for us to read your blog.
  • Remember that we are there to read your blog, not your twitter feed or news feed.
  • Keep the packaging simple, don’t try to dazzle us.
  • Keep the information where the information should be, in your blog posts.
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