Tag Archives | parenting

I have Aspergers – Part 3: Life after an autism diagnosis

By on April 25, 2012 in Autism

For more on this series, go back and read part 1: who I am and part 2: getting the diagnosis.

In the middle of my 3+ hour assessment, the doctor took a moment apart from the testing and asked me “so what exactly is it that you’re hoping to get out of this? What are you hoping will happen if you are diagnosed with autism?”

I swear to you, with no exaggeration, I had rehearsed answering that question in my head at least a dozen times prior to going into that assessment but the moment it came out of his mouth… I didn’t have an answer.

changeChange

Up until the doctor had asked me the question, out loud, I had always assumed that nothing would change. That I really only wanted the diagnosis for my own curiosity, to answer questions I’ve had and to maybe help me with my own identity. Not just for myself but for where I stand in the autism community.

But when he asked me… even though I heard the specific words… my mind told me that he had actually said “what do you expect to change?”

And I had nothing.

I’m a grown up now. I don’t change. I have always been how I am. I always will be.

A doctor telling me I have autism certainly wasn’t going to change that.

In fact, if anything… it was going to cement it!

If I am how I am because it’s a part of who I am… do I even have the choice to change it?

I thought about my son, Cameron, who’s been diagnosed with autism for 3 years now… take social gatherings as just one example. I know full well that he will never ever enjoy social gatherings, much less want to go to them. I know that he is going to have to if he is to learn to cope.. but that being who he is… he’ll never actually want to go.

And I can’t change that no matter what I could try or how much I could want to. It’s who he is.

If I come to accept that in my son, that there are just some things that won’t and can’t change for him, I would have to do the same for myself.

Line of thinking

So I get to wondering why I heard a very different (yet kinda similar) question in my head than what actually came out of the doctor’s mouth and I start to wonder why I am so concerned about whether or not I could change even if I wanted to.

My wife accepts me for who I am. I mean, she married me… she must. But even more so since we came to the realization that autism would explain a lot about me. Far more, even still, since I got my official diagnosis and confirmed everything.

Still though… a part of me doesn’t want her to. She shouldn’t have to accept that I won’t change for her. Wait, let me rephrase that…

She and I have come to accept that our child will always be who he is, not just because of who he is but because autism kind of enforces that more so. He’ll never like some things, he’ll always obsess over other things, he’ll prioritize things differently than most people might… we want to help him with these things but accept that it’s just how and who he is.

I love and cherish my wife for being willing to do the same thing for me but I really don’t want her to have to do that. A marriage isn’t about one person doing all the changing while the other does not, whether due to a disorder or not. It’s supposed to be a compromise and a team effort.

The diagnosis really hasn’t changed anything… not yet. And while I feel like it should have given me every excuse I would ever need to not even try to change anything… it has actually done the opposite.

No, I don’t expect that I’ll ever enjoy social gatherings or anything that I’ve never enjoyed in all my years thus far… but still, I want to do better than just “cope”. I want to prioritize differently. I want to do better.

The wonderfully unexpected outcome

One could argue that a strong desire to make my marriage work even better than it did before is the best one could hope for from getting a disorder diagnosis… but actually, it’s not the best part.

The day that I received my diagnosis, I had my son Cameron sit down after school so that I could tell him the news.

I asked him “Cameron… who in our family has autism?”

He replied “Me.”

I said “Well, I talked to the doctor today and found out something new… you’re not the only one in our family that has autism.”

He looked at me said “You have autism now too?”

I told him “Well, I think I always did but now I know for sure. So now I know, and you know, that you’re not the only one with autism.”

He kept his head down as he played with his toys.

I asked him “So? How does that make you feel?”

He said “good” and left to play.

A couple of days later, while the four of us (myself, my wife, Cameron and his little brother Tyler) went swimming at the local pool, Cameron and I were off by ourselves and he said, “Dad, you know why you and me are the same and Tyler and mom are different?”

I said “No, why?”

He said “Because we have autism!”

Since that day, he’s been quite excited about how he and I are the same… and to be honest, so have I.

When I think about the future he has ahead of him, the great times and the struggles that I know he’ll have… I know now that I’ll be able to help him in a way that I never could have before.

I mean, I’m still me. It’s not like the diagnosis gave me Aspergers. I had it before hand. But now? Now that I know it and now that he knows it… he’ll know that I understand what he’s going through.

He’ll know that he can talk to me about just about anything without worrying that I’ll think he’s weird, or strange or.. what ever.

What ever may come, I’ll be there for him. And he knows it.

He’s already a lot happier. He already feels less alone.

That alone makes the diagnosis… no, it makes my entire life worth it.

going forwardGoing forward

Everyone handles news differently, and life situations, goals, stresses… well, you get the idea. So I don’t expect that anyone else would receive an autism diagnosis and feel motivated to change. In fact, if I was to guess, I’d imagine not many have that same reaction.

But that’s part of the beauty of the diagnosis, I think. You never really know how it will affect you until after it does.

You can practice the things you’ll say and prepare for how you want to feel about it… but you just won’t know until after the fact.

And it’s true, doctors could get your diagnosis wrong just as easily as you could have gotten wrong yourself. So no, it’s not a guarantee… maybe I was sure, maybe the doctor is sure… and yet, maybe I still don’t actually have Aspergers. Seems odd to think about, doesn’t it? It seems odd to say it… or write it.

Still though, as much as life has no guarantees for you and there will always still be some margin of doubt… it’s still very relieving be officially diagnosed with Aspergers.

Which is odd.

Think about it.

A doctor has just told you that you have a disorder… that you fit the criteria somewhere in their big book of “things wrong with some people” and you feel relieved by it.

It’s also weird to think that, my entire experience with autism and the autism community has been through my son. I write about him, I experience autism through him, I learn about autism from him… and yet, now, with a single line on a piece of paper… I realize that my entire experience with autism was actually in fact… my own entire life… and I didn’t even know it.

Well, ok, I sort of knew it, or suspected it, for a couple of years there, most recently… but you get the idea.

The point is, it’s a relief. Because I know what I’m dealing with now. I know what I’ve always been dealing with only… I didn’t really know I was dealing with it. To me, life was always just… hard.

Which brings me to my final thought…

hurdlesHurdles

I know this young woman who’s whole life has revolved around her. She wouldn’t even let having a child at a young age interfere with that. She partied all the time, was only concerned about what her circle of friends thought about her, neglected her family, neglected her schooling, work and other responsibilities, she felt she needed to just do what ever she wanted to do and not care about anything else.

But then, not too long later, I noticed that she was starting to ask a lot of questions such as “why is life so hard?” and “why does everything have to suck for me so much” and “what did I do for all this crap to happen to me?”

I shook my head. I really did. Loudly. You’re trying to picture that right now, aren’t you?

Since getting my diagnosis, I’ve taken a long look at my life… there’s been a lot of unhappiness. There’s been a lot of discomfort. To be honest, I’ve asked a lot of the same questions. Why is life so hard? Why does the universe seem to hate me so much? Why does nothing ever seem to go my way?

But you know what? I finished college. I have been a web developer for over 12 years now and done well. I have a beautiful wife, two great kids and a roof over our heads.

I’ve made something of my life… despite, what I know now, is something very very real. A very definite hurdle that gave me a very real reason to ask… why me? Why is it so hard? Turns out there really was a reason.

One thing this diagnosis has done for me, as cruel as it sounds, is that it’s made me want to sit down with that young lady, put my elbow on the table and my chin in my hand, tilt my head sideways and say to her “Life is hard huh? Nothing goes the way you want it too huh? Please, tell me all about how hard it is for you, party girl.”

Because a few years ago, I’d still shake my head at her but I’d sympathize because my life was hard too. Sure, I know it’s because she’s done it to herself, where as I did not. But I didn’t know why life was hard for me at the time.

But now? Now that I know what I was actually up against that whole time? In comparison to her doing anything she wanted and yet complaining that she can’t do anything she wants??

Yes, I’m feeling a little… I don’t even know what you’d call it.

See, I don’t want to “smack some sense into her” so to speak (I’m not voilent so please take that as the figure of speech that it is), but rather, I’d really like to use what I’ve learned to help her see just how good she’s really had it all this time.

I’d really like for her to see that her biggest hurdle isn’t something that she can’t identify… it’s her. Her choices. And that she has the potential to do just as well, in fact, far far better than I have, if only she could see that.

If I could overcome what I didn’t even recognize, then she can certainly do better when she doesn’t have that to deal with.

All this is to say… I just want to help. I feel this diagnosis isn’t about me. It’s about that young woman. It’s about my son. It’s about my wife. It’s about anyone who reads what I write, looking for answers or inspiration.

Before, I’d say that the one with Aspergers (in this case, me) is the one that need not change, need not focus on anyone but himself following something like a diagnosis, to reflect and find purpose.

But now? Now I’m thinking… I do need change. I do need to focus on those around me. To help as best I can. To do the best I can.

My wife and I will be fine. I will do my best to meet her half way in all things.

My invisible hurdles will not be my son’s invisible hurdles.. they’ll be completely visible, and I’ll be there to help and encourage him over them.

And for those who think life is hard, or need a little inspiration or simply have a question… I want to be there for them. Maybe not in person, because the diagnosis didn’t hit me that hard! I still don’t much like social settings. But certainly, I can help online.

My blog, through social media, through my other writings… autism has been important for me for a long time now. Because my son is important. But now, now it’s important because it’s important to me.

I’ve said that 1 in 88 is not the number of people affected by autism, it’s the number diagnosed… well, now, some of those affected people are affected because of me.

And I am going to do everything in my power to make sure that the effect it has is a positive one.

Comments { 8 }

Overcoming Self Doubt as an Autism Parent

By on April 13, 2012 in Autism

The hardest part, I think, to being an autism parent is the doubt. Not just in general but the self doubt in particular.

am i good enoughWe ask ourselves

It doesn’t really matter where your child is on the spectrum, we all ask ourselves the same questions.

Am I doing the right thing?
Am I strong enough?
Am I smart enough?
Could I find a way to make more money?
Could I fight harder/smarter to get the services my child needs?
Am I listening to the right people?
Will what I’m doing now, be enough?
Am I making the right choices?

To be fair, these are questions that pretty much all parents ask themselves but it’s just so much more so when your child has autism (or any special needs).

Personally

I’m not supposed to write this… I’m supposed to keep up the illusion of competence. Some people believe that I’m a wonderful father and I have all the answers…

People visit blogs like this for that. They like to be able to relate to the struggles to… but mostly, they look for the positivity. Especially from me. Because it’s what I usually do.

My wife often bugs me about being “the great autismfather” on the internet because I get some great feedback from readers and on social networks but the honest truth is… I have doubts. In the future. In what I’m capable of. In myself.

I know my son is going to turn out great.. because he has greatness in him already. But still, I worry. There is a lot of time between now and when he’s on his own. There is a lot that is going to happen.

It doesn’t matter if someone out there thinks I have all the answers. I don’t.
It doesn’t matter if someone out there thinks that I’m a role model. I’m not.

Right now,  I’m not making much money. I’m not sure what to do about certain behaviors that we just can’t seem to get our son out of. We have sports and other events coming up in the summer that we can’t afford, we’re not sure we could take time away from work for or that our son would even be ready for socially or physically.

Don’t get me wrong, this isn’t a pity post. So please don’t leave comments telling me to keep my head up, or to offer me advice on how to get through it…

I’m sharing this to prove a point. Even if you think someone is a great parent, even if you think they’re a perfect parent… no matter how confident or smart or wise or positive they may seem sometimes… you will still find self doubt. That person will still be asking themselves the exact same questions you may be asking yourself.

When it gets to be too much

The point is, it’s ok. It’s perfectly natural to ask those questions and to doubt yourself. Everyone does it. Some do it more than others but everyone does it.

The problem is when it takes over and moves into the realm of depression. Because then, your self doubt starts to become a self fulfilling prophecy. You will fail where you wouldn’t have otherwise.

For me, and I’ve seen it in others too, when I start to hate myself too much for not being able to do enough… I have a hard time finding the will to do anything. So I don’t. And then I hate myself for that too. And it spirals.

I guess the trick is not to dwell on it. If the self doubt is going to be there, no matter what, then don’t dwell on it. Because when you do, when it’s all you think about, it consumes you.

Either you wake up the next day, shake it off and tackle what ever that day has to offer…. or you don’t.

That’s when your strength, smarts, income, abilities and everything else won’t be what holds you back, it’ll be your self doubt.

Focus on the positives

They say to think happy thoughts and just be proud of yourself for who you are and what you’ve accomplished. I’m not a self help guru so I can’t really put it more eloquently than that. Nor am I very good at dealing with my own self doubt most of the time which definitely makes me one of the least qualified people to guide you through it.

But I will say this… my children are happy. They’re fed. They are wearing clothing.  They are out of the rain. They love me and they are loved too.

I’m not sure how long that will last, because I have self doubt. It’s in my nature to think that I’m not good enough going forward. I’m a parent. An autism parent.

But for what it’s worth… right now… I’ve done better than I thought I would. So maybe I’ll do better in the future than I think I will too.

And I bet, if you have self doubts, you too will find that if you look around and take stock of all that is in your life right now… you’ll find that you haven’t done half bad either.

It’s ok to have self doubts. But it’s also ok to slow down once in a while, keep an open and objective mind and appreciate what you have.

You’ve earned it. You got you there.

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A bit of fatherly advice

By on March 20, 2012 in Parenting

father-childEvery parent’s wish is for their children to have a better life than they did… whether rich, poor, big family or small… we only want our children to get the most out of life, and to do so better than we did before them.

Not everyone has the same advice on how to do that and sometimes we down right disagree with others, that’s fine.

So today, I am writing this for my two boys, Cameron and Tyler:

1. Risks

Through out my life, I’ve had a lot of my ideas pushed aside by family and friends that told me that they’d be too risky to try. Take the safe job, make the safe choice, don’t speak up for yourself or you might lose something…  avoid risk!!

If I could go back, I’d tell myself not to listen to any of them.

Sure, some of those ideas were really bad ideas. Maybe some would have failed. Maybe even all of them.

Maybe some would have succeeded too though.

Either way, it doesn’t matter… because right now, I wouldn’t be regretting having not tried. To at least try means that today, right now, I’d have gained the experience that comes with trying. I’d be one step closer to knowing what things didn’t work which would mean that I’d be one step closer to knowing what will work.

Maybe I’d have really really liked one of those things. Sometimes you never know you love something until you try it. Perhaps I’d have loved one of those things so much that the risk would have been worth doing it… and worth doing it again and again.

2. See things through

For all the things I didn’t try, there were still things that I did try… things that required less risk, or no risk at all. The problem with those things was that I’d never see them through.

I’d start something and lose interest, get distracted by life or simply be unable to finish due to my own short comings. What does that mean? It means I didn’t push myself hard enough to know how or to be able to finish what I started.

It is far worse to never finish than it is to fail and end with valuable experience.

3. Embrace the critics, ignore the haters

There is a very big difference between a critic and a hater.

Haters will do their best to tempt you into an argument or to spark your anger. Their jabs have no substance except to incite emotion.

A critic, on the other hand, may be harsh at times, but will offer real observations and sometimes even advice for moving beyond what is revealed in those observations. A critic doesn’t care if you take their criticism or not; or if you get mad or not. They do not speak to anger. They speak to offer criticism. Listen to them. Learn from them.

Critics are the voice of your failures and failures are the experience you take with you when you do something better next time.

4. No one was ever able to stand out by blending in

If there is one thing that school pounds into you, it’s to blend in. Do what everyone else is doing and they might accept you, be different and they will likely laugh or even bully you.

I’m going to tell you a secret that you might not believe until later… school doesn’t matter. The kids at school don’t matter. What you learn at school doesn’t matter. Trying to fit in with all of that will only result in one thing… you won’t matter either.

Be different. Be proud. Stand up and stand out and do it so well that people take notice.

When you think about all of the greatest people in the world, think about what they do to be the greatest. Do they try to do what everyone else is doing or do they try to be different?

Don’t worry about better or worse. Because you will be worse. But you will also be better. That isn’t what it’s important. It’s not always the best that stand out. It’s not always the best that are remembered.

Just be who you are and don’t ever let anyone tell you that you need to blend in. You do not need to blend in. Not in school. Not ever.

5. Don’t let fear stop you

Dads aren’t supposed to be afraid of anything, but we are. We’re afraid of a lot of things. Sometimes the same things that you’re afraid of. The only difference is that it doesn’t let it stop us, or at least, it shouldn’t. But even dads are human.

I’ve let my fear stop me a lot of times. Remember #1? Risks? That’s what I’m talking about. When a risk seems too big, like I might lose a lot… I let my fear get the better of me and I didn’t even try.

There’s nothing wrong with being afraid of the risk. There’s nothing wrong in being afraid of anything. But don’t ever let that fear be what stops you.

Let me put it another way, maybe you’re thinking of doing something really big but the risk in doing it isn’t worth the reward. That’s fine. Don’t do it. You’re smart. That’s entirely different than not doing something because you’re afraid.

There were some things that I was smart to walk away from. Then there were also things I walked away from simply because I was afraid… that’s not smart.

6. Go for what you want

Figure out what you want. Figure out how to get it. And do it. No matter who says not to. No matter what the risks are. No matter how afraid you are. No matter who might be looking and thinking you’re strange for wanting it.

Do it. Do it for me. Do it for yourself.

You’re already a better person than I am. You have a much better life waiting for you than what I had. You just have to step up and do it.

From Dad

I am writing this for both of my sons, Cameron and Tyler.  It doesn’t matter that one has autism and one does not. This advice applies equally.

No two lives are the same, no two journeys are the same. That’s how it is supposed to be, with or without autism.

Do these things that I could not and you will be happy, I will be happy too.

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Do what you need to do, I won’t sue

By on February 16, 2012 in Autism, Parenting

I often hear horror stories in the news, from other teachers and all over the internet about parents being in some epic battle with their child’s school or day care because their child had to be restrained, separated from others or other cases like that.

Most of the time, everyone sides with the parent in a unanimous cry of outrage in the complete and total mistreatment of their child. Most of the time, that comes with very little information as the schools are often unable to comment on the situation, same with any enforcement personnel. This means that we only have the parent’s information to go on.

I won’t argue however that most of the time, that’s all we really need. What’s wrong is wrong.

Still though, this creates a situation in society that basically ties the hands of those teachers and care givers should they truly have the right or need to handle a situation where those circumstances arise.

Dear care givers

What I’m trying to say is, if you care for my child and he is in danger of hurting himself or someone else, please do restrain him. Please do send him for a time out, even to some other room if need be.

I won’t sue. I won’t call the media.

If my son hurts himself… in a private area… please do check it out. He’s hurt, he needs attention, give it to him. I understand that it’s not sexual, I understand that you have his and my best interests at heart.

I won’t sue. I won’t call the media.

But be warned

If my trust is abused or my understanding is taken advantage of, I will hunt down the person and make sure that no one finds them until skyscrapers start going up in remote parts of northern Canada.

My children are that important to me… but they’re also that important to me that I don’t want to see his care givers afraid to touch them for fear of me being the type of parent to make it a national news story.

time out chairThe reality

The reality is that when my son completely loses it and hurts himself or his little brother, or is breaking things, or is just generally out of control… I will put him in his room. I will drag him there if I have to.

And I fully understand… no, I expect… that anyone else that I have entrusted with the responsibility of watching him would do the same.

I won’t call it barbarism when someone does the exact same thing that I would have done in the same situation. I won’t give my story to the first reporter that will listen to me.

The reality is that I understand how it’s come to this but I also feel disappointed that it has.

Somewhere, lines have blurred… and it’s often due to those who take advantage of the situation or react too harshly to the situation. Those care givers who go overboard and actually hit a child, or do something else that is completely inappropriate.

There’s also the “not knowing” that we must face… since our children aren’t great at relaying the details, we have to just hope that the teacher’s telling the truth. And if they did do something wrong, what would be the likelihood of that?

In a perfect society, every person that comes into contact with a child would be certified do-gooders with halos and wings that could never do any harm… but there is no perfect society and that leaves us skeptical and scared.

But I refuse to hand cuff those who care for my children by never letting them do what I would do myself to ensure their safety.

If I wouldn’t do it, damn straight I won’t let them do it. But if I would take an action, such as dragging my kid, kicking and screaming to a time out… then I fully support his teachers/care givers doing the same.

I know a lot of parents won’t agree with me, or simply aren’t willing to let “strangers” do those sorts of things… I can understand that. But it is how I am and how I feel about it. If I don’t trust the person that my son is with, he won’t be with that person. It’s that simple.

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If you believe in yourself, the magic will happen

By on February 15, 2012 in Autism, Parenting

In 2007, a wonderfully fun little movie called Mr. Magorium’s Wonder Emporium came out featuring Dustin Hoffman, Natalie Portman and Justin Bateman. While this movie will never hold a candle to films such as the Wizard of Oz or Willy Wonka and the Chocolate Factory, it does shine in it’s own special way.

Dustin_Hoffman_in_Mr._Magoriums_Wonder_Emporium_Wallpaper_3_800

Just Believe

The Premise

Dustin Hoffman plays the magical being, Mr. Magorium… and by magical, I mean that he’s 243 years old and brings toys to life. His assistant is played by Natalie Portman who is struggling to find herself. She tells Mr. Magorium that she “feels stuck” and he responds by giving her the Congreve Cube… uh… a block of wood.

As you get accustomed to the magical world within the store, Mr. Magorium throws in a shocker in announcing that he has to leave… effectively, he’s going to die tomorrow.

This leaves her with a store that she’s not sure she wants, an accountant that hasn’t even seen a toy in years and a fun little boy sidekick type that is in the peak of his magic believing life.

The Magic

It’s a wonderfully fun movie for the kids… Cameron was mesmerized through most of it but did get bored a few times as the discussions about life would take away from the store and the magic.

But that was the thing, I think, in that this movie held so much more magic for the parents than it did for the children. I think that is what holds it back from being a classic like Oz or Willy Wonka but it’s also what makes it so important for parents to watch.

You see, as Mr. Magorium “leaves” and his assistant has to figure out her life, the store begins to lose it’s colour, the toys stop coming to life… essentially, it dies. It becomes a dark, dreary place that no one wants to step foot into.

It’s not until Molly (Natalie Portman’s character) realizes what it is that she has to do that everything comes back to life. She believes in the magic, she believes in the toys, she believes in the store and most of all, she believes in herself again… and the Congreve Cube begins to move.

It’s her belief that causes the cube to move, it’s her belief that brings back the colour and it’s her belief that leads the viewer to believe that, providing she always does believe, she too will live to be over 240 years old.

The Lesson

As Molly dances around the store and the toys begin to move, dance and fly, the colours come back, the music builds and builds and the children come running in the front door to see all of the magic, my son sat on the couch, hugging the couch cushion with a huge smile on his face.

I love to see him being so happy that he can hardly contain it. It’s a rarity.

So I decided to see if Cameron got it:

Me: So what did she have to do to make the magic come back?

Cameron: …  believe?

Me: Right! …  And what did she have to believe in?

Cameron: … magic?

Me: Nope… herself! She had to believe in herself!

Cameron: believe in herself?

Me: Yes, that means that she had to be happy being her. She had to know that she was smart and a good person. She had to know how awesome she is!

Cameron: and that makes the magic?

Me: Exactly. If you believe in yourself, the magic will happen.

While I don’t know just how much of that will stay with him, I know that it will stay with me. And I hope it stays with every parent that watches the movie.

Never stop believing in make believe. Never stop believing in silly, childish, wild and wacky fun. Never stop believing in magic. And most importantly, never stop believing in yourself.

It’s this that I will always remind my boys and will always do my utmost best to remind myself.

Autism or not, if you believe in yourself, the magic will happen.

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