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Autism and Thanksgiving – Be thankful for the struggles

Happy Thanksgiving

Happy Thanksgiving

We’re all aware of how difficult Thanksgiving can be when your child has autism. Not eating any of the 38 different kinds of food on the table, becoming overwhelmed and melting down, hurting one of the other children or themselves, being fed food that they shouldn’t have by some other family member, having to leave early… the list goes on and on. Children can often struggle with these situations as it is but when they have autism, it can sometimes seem downright unbearable. Even, avoidable… as in, just not doing Thanksgiving with family anymore.

Now, this is going to seem/feel dark but honestly… this needs to be said.

You could have had a miscarriage. Your child could have been born with cancer, half a heart or some other death sentence right from the start. Your child could have died from SIDS. Your child could have been killed in a car accident or lost at the hospital or contracted a deadly disease somehow, like whooping cough.

Listen, this is not something to think about at Thanksgiving but then again, maybe it is. Because you need to stop hating that your child has autism at Thanksgiving. You need to stop looking at the struggles and frustrations as such a terrible thing and start being thankful for what you have.

You have a child where so many others don’t anymore. Many people, right now, are trying to find reasons to be thankful when it feels like their whole world has been destroyed because their baby was taken from them.

Be thankful for the meltdowns, for the strange diet, for the late nights, for the costly therapy sessions… be thankful… for your child.

Would life be better without those struggles? Certainly. I know many people wish more than anything that their child didn’t have autism but right now… there are people who simply wish they had their child, period.

Be thankful for what you have because there are people who wish they had the same.

A big family turkey dinner might not happen as planned but it will happen. Be thankful for that.

For today, even if just today, but hopefully for always, be thankful for the struggles.

Happy Thanksgiving.

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Autism – The Struggles

One thing that most, if not all, people can agree about autism is that it does present it’s share of struggles.

But what are those struggles? And for whom?


Normally a diagnosis comes at a very early age leaving parents to do what they feel is best as they attempt to make life altering decisions on their child’s behalf.

This means finding therapists, finding the right school, maybe battling that school, trying, finding and setting diets that will not only help but that their child will actually eat, and the list goes on.

It also often means some added traveling, lots of extra costs and even extra stress… especially if someone is preventing us from getting the services that our child needs.

If the child is unable to sleep at night, then the parent isn’t able to either. If the child is unable to attend loud restaurants or other venues, the parent isn’t able to either. If the child is emotionally overwhelmed, whether anxiety or depression or what ever, then the parent likely will be too.

Indeed, parents are often all to familiar with the struggles of having an autistic child.

It’s never more evident than when another parent tries to correct you, give you advice or worse, judge you for your decisions.


The people that actually have the disorder have even greater struggles, many of which they likely find themselves unable to explain.

First there is the sensory processing issues. Whether too extreme or too subtle, an autistic child can often be found spinning around, hitting things, touching everything, watching things intently, screaming or moaning for no apparent reason or having a full blown meltdown. Sometimes it’s the lights, sometimes it’s the smells, sometimes it’s the feel of their clothes, sometimes it’s loud noises or consistent noises that seem like they’ll never stop and then there are times that no one will ever know what caused it. Possibly not even the child. There’s just something wrong and it’s too much for their system to handle.

Later there is communication issues, usually due to verbal skills often being delayed. Children want things but are unable to express those desires to their parents or others. Or, as I said earlier, have sensory overload but are unable to tell anyone about it.

Autistics often have issues with foods, whether it’s sensory (taste, smell or texture) or dietary complications such as sensitivities to gluten or casein. They also tend to have problems sleeping through the night, either prone to night terrors or just waking often due to an over active mind or some outside stimulus.

Autistics then have struggles with making friends, being understood as well as understanding others, being in social situations and all those other things that comes with being in school or having a job. Often a target for bullies, autistics tend to be victimized or even taken advantage of as they don’t really understand the motivations of others.

Then there’s dealing with people’s misconceptions (imagine everyone thinking you must be like Rainman), people assuming you must have a really low IQ or better yet, a really high IQ, people never being able to get over the mindset that “there’s something wrong with you” and even the much more simple, yet still struggle worthy, awkward moments where people just don’t know how to behave around you.

Where the struggle is not

Let me say this first, to make it perfectly clear, there really are some people, children and adults, that really are a handful. Sometimes people really are just extremely difficult to deal with as part of who they are and that’s how they want it… those people can be a struggle, whether they have a disorder or not.

Autistics are not the struggle.

You can classify autism itself as a struggle, if you want, but really, the real struggles are the situations and events that may or may not be due to the autism.

Look at it this way, when a child is born deaf, parents don’t see that child as a struggle. The communication barrier is a struggle. Learning sign language is a struggle. Finding the right services is a struggle. Having to afford special devices around the house can cause a struggle. But the struggle itself is not the child.

Likewise, with autism, the person is not the struggle, unless they go out of their way to be rude, unkind, unhelpful or what have you. But as a general rule, being autistic is not a valid reason to think of the person as the struggle itself, or the cause of your struggles.

If you are autistic: Don’t get down on yourself. You are not your struggles and your struggles are not you. The struggles you may face, maybe due to autism, maybe not, are situations in your life. Those situations are struggles. But each situation is a separate entity that can be avoided or overcome.

If you are a parent: Never treat your child as if they are your burden. Never tell anyone, not them, not others and not even yourself, that your child is the source of your struggles. They’re not.  Your child has struggles. You have struggles. Your child is not one of them.

heavy burdenNo, it’s not a matter of semantics or proper wording. It’s the way you look at a person. It’s the way you treat a person. It’s the way you believe a person to be.

When you think of someone as a struggle or a burden, you’re essentially reducing that person down to some kind of heavy load that will weigh you down as you carry them with you. And that’s not really how you see them. At least, I hope not. Because they’re not.

Make the conscious choice now. How will you see your child (if you are a parent) or how will you see yourself (if you are an autistic)?

A heavy load, weighing you down or a beautiful soul and a wonderful person that can lift the spirits of others?

Because that’s the choice you have to make. It doesn’t matter what struggles you have, it’s all in how you view yourself and others.

Once you make that choice, you’ll see just how separate we all truly are from our struggles after all.

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Autism – The (not so) Invisible Disability

Autism is sometimes referred to as “The Invisible Disability” because it can be difficult to spot, especially if you are unaware of the characteristics that define autism.

If you saw a group of kids standing in a group, could you pick the one that is autistic? What about if they were walking around the halls at school? How about if they were running and playing a game or a sport?

Chances are, if you know autism well, you know that it’s usually far easier to spot an autistic when they are exerting themselves physically, like running and playing.

I can’t help but feel so very bad for Cameron when I see him run, his arms flailing about, his tongue sticking out, his legs all wobbly… he really has very little control over his own body. He sure does try hard though! I think that’s why he’s that much more disappointed when others are faster than him.

Today, while out for a walk in the woods, we put our two boys off on a race. Tyler, who is 4.5 years old and Cameron, who is just about to turn 7.

Normally, you’d expect a 7 year old to beat a 4 year old in a foot race but in this case, neither my wife nor myself were surprised when Tyler was able to get to the finish line first.

And it’s not that we’re disappointed. We’re not. All we ask is that they try. If they give it their best, we’re happy. But Cameron doesn’t see it that way.

To him, he doesn’t understand why he’s not as fast. He doesn’t understand what it is that’s making him slower. He just thinks he’s stupid. He just thinks he’s “the worst kid ever.”

It really hurts because I don’t know how to help with that. I mean, yes, you tell him to keep trying and that practice will help him to get better and faster.

But what kid believes that when they feel completely defeated?

Perhaps it’s best if I just show you. This is the video of my boys having a race from their mother, to me and back again.

I do believe though, that this is not a life sentence. Autism itself is but like all other characteristics, like all strengths and weaknesses, this can be worked on, improved and even perfected.

Given time, dedication and persistence, Cameron can become a great runner. He can even become the fastest, if he worked hard enough at it.

But as I said before, all I would ever ask of him is that he try. And that is what I want most for him. For both of my boys.

To try.

So no, it’s not an invisible disability. At least, not for every person that has autism. Sometimes it is very much visible and makes for a very large hurdle.

My boy gets down on himself because of this. He doesn’t understand. But I do. It’s not invisible to me.

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The life of an autism parent advocate

In one way or another, all parents that have a child with Autism will become an advocate… whether they are just explaining to fellow family members why their child behaves how they do, or if it’s fighting for their rights in schools and other services or if it’s speaking out to the world on behalf of all people with Autism… we all come from the same place, we all do our best with the best of intentions.

In some ways, it sounds glamorous… putting up the good fight, speaking to the hearts of others… but at the same time, it sounds like quite the struggle. A constant, tireless battle requiring a love filled heart surrounded by a skin of steel.

I can’t speak for everyone, only myself, but one could imagine that the stories of most people aren’t far off from what I’m about to tell you.

What you already know

If you’re reading this, you’re likely a parent. Which means you already know all about the cost of parenthood, the constant running around, the constant illnesses, the constant battles at bed time and so on and so forth.

This includes the unexplained rashes, heart break over bullying and more.

What you might not know

With Autism comes a host of other issues, including no sleep, irregular diets, regular therapy appointments, battling the education system, having to fight with the government for coverage and assistance and a whole lot more.

Bullying is far more likely as well as far more frequent. Friendships are far less likely and less frequent.

Regular clothing can be painful, bike riding can take 2 to 3 times longer to learn, special equipment may be needed such as trampolines or Lycra(stretchable) bags or bedding. Some children even need weighted vests.

The diets aren’t just stressful to keep on top of, but in some cases can be quite costly. For example, I can buy a loaf of bread for $1.80 at the store…. or I can buy a loaf of gluten free bread for my son for around $8. A small bag of gluten free pretzels, containing about 12 pretzels, costs $5.

The cost of success

So it turns out that I’ve been doing rather well at being an Autism Advocate…  but the question is, what does “doing rather well” mean?

Well, no parent becomes an advocate for the paycheck.

I have been asked by several blogs, even charities, to write for them. I’ve done several radio interviews, been in the paper a few times, even had CNN call me once. I have almost 10k followers/fans/circles across the various social networks and I get between 5 and 10 emails a day with questions or just to share their story.

All in all, I call that a success and am quite proud. However, there is an inherent problem with all of this.

As it adds up, I find myself spending 1-3 hours a day on Autism advocacy… that’s my own personal time.

When you consider that I have a 9-5 job just like everyone else, plus a family of 4 which I love to spend my time with and then various other responsibilities and commitments…  let’s just say that the 24 hour day gets used up pretty quick.

On top of that, as I said earlier, therapy, diets, special supplies and more really begin to add up when being a parent tends to cost a small fortune as it is.

The cost of success being an Autism parent advocate is that you get less hours, more bills and even greater stress.

It’s not a thankless job

The one saving grace is that it’s not a thankless job. I often hear from others how grateful they are and for that, I myself, am grateful. If money wasn’t a problem, that’s all I’d ever need. A thank you means everything to me.

Welcome to the crossroads. That’s where I am now. I love being an Autism advocate. I love hearing from people… their good stories, bad stories… I love writing the articles, reading articles from others…

The problem is, I simply can’t keep devoting hours of each day while the bills pile up and begin to fall behind.

I come across twitter account after twitter account, facebook fan page after facebook fan page… inactive. And I can’t help but wonder if they ran into the same crossroads. Did they lose interest? Or did they find that they simply couldn’t commit to it any longer?

Autism advocacy: it is glamorous, it is a struggle… it is all those things to different people.

The good news is that the numbers keep growing. Awareness keeps increasing. With every person that has to hang up their hat to focus on their family, there’s another 2 people there to take their place.

No matter what. Stay strong. Stay positive. And remember, support is where you give it.

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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?


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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