Archive | June, 2012

The life I once had

By on June 26, 2012 in Autism

It’s not something I talk about very much. It’s really quite boring. But even more than that, it’s really quite depressing. It’s negative. It’s not the me that most of you have come to know now, that is if you have been reading the things I write before this one. If this is the first of mine that you read, I am sorry. But please do stick it out because there is a point to my telling you this.

loneliness10 years ago

When I was 26, I lived in one of, if not the, most beautiful city on Earth, Vancouver BC. I really loved it there. I had an apartment on Beach Ave, over looking the ocean. My living room wall was glass from top to ceiling. Just me, my computer and the most beautiful sight you’ve ever seen.

And I was miserable.

I didn’t know it back then but I have Asperger’s. Back then, I was just… me. Miserable, depressed and lonely. Which is funny to think about because I did have friends and family that lived close by. But I was so very lonely. I would work at my computer, making websites for people. I made my own hours, I made my own money. I had no boss. I had no place to be.

My schedule would shift because every single day I’d go to bed one or two hours later than I had the day before. I say day, not night, because when you continue this process for several years, you go from staying up all day to staying up all night and back again.

I had accomplished my goals. I worked for myself. I could afford a great apartment. I did as I pleased.

I wanted to kill myself.

My darkest day

It never really occurred to me just what it was I was telling her or how much it must have been hurting her or just how stupid it was of me to be saying it but, without a doubt, the worst it had ever gotten was when I told my mother, while bawling my eyes out, that I was so very sorry because she would never get to be a grandmother.

Me, being her only child, feeling completely defeated and worthless in life, had fully accepted that no one would ever love me and that I most certainly would never get to a point in life where I would ever have a family.

I couldn’t be the person that people wanted me to be. I felt a total fraud every time I walked out the door. I told witty stories, quick one liners and would often be the “life of the party” with those that knew me but it was never right. It was never me.

I loved who I was and what I had accomplished but hated myself all the same.

I even sought out help in the form of a psychiatrist but it proved to be pointless. I don’t know if it’s because of my Asperger’s or just watching far too many drama movies and television shows but it was as if I could see each line he said before he said it. I knew the points he would be trying to make, I knew the directions he would try to take. And each and every time I would dismiss and ignore. It never pertained to me. It never pertained to my problem. It was always stuff that made sense for other people but not for me.

And so I resigned myself to a life of solitude. I told my mother that our family line would end with me. Her disappointment.

What a thing to tell a mother.

10 years later

So here I am now, 36 years old and feeling like my past was only a moment ago and a whole other life time ago at the same time.

Today I have a wife, two little boys, a dog and a cat. I have no money, no free time and a very strict schedule. I live in a crappy apartment with no view to anything in a town that I don’t want to be in.

I’m the happiest I’ve ever been.

So what happened? Well, to be honest, it’s not really the details that matter. What matters is that I was there for them to happen.

My wife, as it turned out, was one of my oldest friends. I had known her for a very long time. One day, at the right moment, in the right place, something happened. And here we are.

Thing is, if I had had my way, at that time, I’d have still been at my computer, in my Beach Ave apartment, being miserable. That moment would have never happened.

A moment in time was all it took. I didn’t know when or where, I was most certainly convinced it would never exist, but it did. And now my life is not just different from what it was, it’s nearly the opposite.

I have no friends now and my family is hundreds of miles away but I never feel lonely. My wife and kids, they were what I was missing. They have filled that hole in my heart.

I have no money or time anymore but at the same time, my kids always have food, the latest games and toys, clothing on their backs. You can have all the time and money in the world but they have no value at all unless you have a purpose for them.

Your future you is waiting for you

It sounds corny and I’m not making you a guarantee but if you believe it and if you work for it and you make the effort to simply be there, that moment can happen to anyone.

Many autistics fear their own future. Will it be more of the same? Bullying in school? Bouncing around jobs if there are any jobs? Feelings of anxiety and loneliness?

Parents also have these fears for their children. Especially if their children are non-verbal or particularly challenged, such as having other associated conditions like blindness or epilepsy.

I am not trying to throw positivity down your throat. I’m not Anthony Robbins. But I can tell you how I see things based on my own experiences.

If I had stayed at home, if I had moped for one more minute, if I had simply believed myself worthless at that one key moment instead of… what ever it is that I felt… I would probably still be on my own. If was I still alive at all by now.

I didn’t know it then but autism was confining me to that computer chair. It was making each outing a torturous affair. It made me disregard or even dislike the friendships I had even though I loved my friends. It made me hate myself.

At the time, I thought I was just a loser. Just the oddball out that was meant to be alone. A person that was meant to be miserable.

But I did go out. I did keep that friendship going after so many years, even though that was largely due to her, insisting on keeping in contact even when I would “forget” to reach out.

I look back now wishing I could travel in time so that I could tell myself just one thing; “Endure this. It’s going to really suck and you’re going to really hate it but endure it. Because no matter how impossible it seems, like it could never happen to you… it can. I am your future and your future is waiting for you.”

To be honest, I probably wouldn’t have listened, not even to myself. That’s how miserable I was. But that kind of hope can make all the difference.

That kind of hope is what is missing for a lot of young people today. Especially those with autism who feel like there is just no place for them in this world.

To those waiting for their moment

My son has two advantages, the way I see it. One is that he knows he has autism so he’ll know the reason for feeling how he feels. Perhaps he’ll even know the coping mechanisms to not let it get in his way. It won’t just be a random feeling of despair and loneliness. Second, he has me. And I’ll always be there to tell him that his future self is waiting for him. That he can and will be happy if he endures long enough.

But I’m not a time traveler nor am I a fortune teller. So I can’t make any promises on what the future will hold. I can only tell you what I have experienced and what I believe.

What I believe is that there is nothing that can ruin your life unless you let it. Not autism nor anything else. Granted, it can make it one hell of a whopping huge challenge but nothing can stop you from loving life and being happy.

You could argue that I was lucky, to have had that one moment that turned things around for me but that’s kind of the point I’m trying to make.

I told you that I felt lonely even amongst my friends. I told you that each outing was torturous. But I still went out. I still had friends. I still left my little ocean side apartment because if I didn’t… there never would have been a moment. I would not be here, right now, believing what I believe and sharing it with you.

Even though it was that one moment that I can pin point, looking back, that changed everything… it wasn’t in that instant that I suddenly switched from miserable to happy.

It was that moment that things turned around but it took time. A lot of time.

My point is, it wasn’t just luck. I wasn’t lucky. I was anything but lucky at that point in my life. But I was there.

You need to be there too. When every part of you tells you not to be, when every part of you tells you it won’t happen… be there anyway.

If you feel like an outsider, if you feel completely alone, if you have autism too… you know just how hard that really is.

But your future self is counting on you. Your future self is waiting for you.

Be there.

Comments { 12 }

So it’s Victim Mom vs Warrior Mom now? Here is some perspective

By on June 21, 2012 in Autism

 

Jenny Mccarthy Victim

Sending all the wrong messages

Jenny McCarthy, more famous in the autism community for her on again/off again autistic son and her war on vaccines than her actual acting career, has made some very bold statements during the latest Autism One conference where she likened some moms to choosing to be victims and enjoying the “oh woe is me” victim role.

For some light reading on the subject:

Jenny McCarthy: Autism Moms “Fall in the the victim role…and they are loving it”
Words Matter
A letter to @JennyMcCarthy

There are a lot more posts and articles out there but I don’t want to list every single blog/article in the autism community because everyone has written about this.

I was going to let this go by as just something silly, nonsensical or, more or less, stupid.

But, upon thinking about it more today, I’ve come to the conclusion that I should say something. Something that I feel is imortant.

Perspective

To recount what it was that she said, I’m going to borrow from the Left Brain/Right Brain post (the first article I listed above):

As we continued to talk about alternative treatments for our children, I noticed the room separating into two sides. We were no longer talking as a whole anymore. There was a group of moms who didn’t want anything to do with what we were talking about. They slumped into a corner and had a “woe is me” attitude. I decided to eavesdrop on both conversations.

The “woe is me” moms were talking about how they didn’t get to shop or go to the beach with their friends anymore, and the “I’ll try anything if it will help my kid recover” moms were trading success stories about the latest treatments.

And, later…

“My other theory was that they enjoyed the victim role. I know that might sound mean, but I’m sure you’ve met people who are constantly having shit go wrong in their life. They complain and play the “don’t you feel sorry for me” game.

Now, for the most part, the autism community got up in arms over this in one of two ways… either being offended as she had called them victims, or defending her as they felt that she was making a great point.

My stance is, it’s all a matter of perspective. Now, hear me out.

This is just an example, but where’s the dads? How come it’s only moms who get a label? If anyone should be offended, it’s us dads that work every bit as hard as the victims and warriors combined and we’re forgotten about completely.

See? Perspective.

Anyway, more to the point, I’d like to offer a few alternative perspectives.

The two groups

The two groups that she alludes to were contained within one larger group of moms discussing alternative treatments. I can only assume, and this is just me, that if not all, then most of those moms were in the anti-vaccine camp… believing that vaccines, or other toxins, had caused their child’s autism in the first place.

This already excludes a lot of moms in the autism community. The majority I’d say, since most autism moms do not believe the vaccine theory. This means that she’s casting a divide within an already divided group.

So to put it mathematically, in hypothesis only and my numbers will be way off, if the split is 75/25 for moms who don’t believe the vaccine theory and those who do… then she’s dividing up the 25 into two groups. If 50/50 then it would be 13/12 or something like that.

It’s still very wrong to label those moms and cast judgement, I’m just saying that maybe she’s not talking about the moms that you think she’s talking about. You know, the moms that have no qualms with the toxins of the world.

The Accepting Mom

The prevalent perspective is that Ms. McCarthy is talking about moms that have come to accept their child as they are.. with or without autism. That those moms do not seek out chelation or force feed their children bleach and therefore would rather just be the victim.

If this is the perspective of choice, then you must realize that it’s how she sees things. It’s her own perspective.

I realize that this won’t be popular among those who like Jenny McCarthy or feel how she feels but remember, this is only to illustrate a different perspective.

See, she may consider a mom that does not try things like giving their child a bleach enema as just playing the victim but I tend to think of that mom as simply having common sense enough to not try something obviously dangerous, and stupid.

She may consider a mom that accepts their child for who they are as enjoying the victim role so much that they give up rather than try tons of pointless and costly treatments but I tend to think that not seeing their children as damaged goods in the first place, and having unconditional love trumps all titles that one can fling at them.

She may consider a mom that talks about her struggles in raising a child with autism as a person that basks in the feeling of being the helpless victim but I tend to see that mom as someone that I can relate to, get advice from, share experiences with and understand.

She may see a “warrior mom” as a woman that battles “big pharma” and government agencies. That’s fine. To me, when I see a mom crying about how the evil empires broke their child, how much money they spend on treatments that put their children in danger because they are so desperate to cure them… that’s when I see a victim. In fact, I hear it in their chants: “big pharma is making money while making our children sick. We’re the victims!”

She may see a mother that never stops fighting for their child as a warrior mom but I tend to think that ALL MOTHERS NEVER STOP FIGHTING FOR THEIR CHILD. If they do… they’re not really their mother. Moms do not give up. Period.

She may see compassion, positivity, acceptance, understanding and love as being the victim. Then I say, please call me a victim too.

If seeing my child as perfect makes me a victim and seeing my child as broken, in need of being cured from the damage done by evil doctors makes me a warrior… I’ll take the victim title, thank you.

That’s just my perspective. And opinions are born out of perspectives. They do not make them fact.

Her opinions, based on her perspective, should remain her own.

She’s entitled to them.

As I am entitled to mine.

Signed,

Victim and proud.

Comments { 17 }

Chow Down

By on June 21, 2012 in Autism

 

“Alex, dinner!” might sound like an echo across normal backyards the land over, except in our house it’s followed, every evening, by “Here are your hot dogs, Alex.” Hot dogs sliced by the width, about a half-inch a slice, and they have to be Hebrew Nationals because if you use any other brand you’re not fooling anybody.

 

Compared with the rest of his development, Alex’s diet is arrested (I’d say “retarded” but don’t for reasons that are also starting to feel scary), and it’s progressed little in several months. Vitamins and stuff like Benefibre help, but regarding food we’re still parked at La Crème pink yogurt (“pink” is not an official flavor; raspberry or strawberry, doesn’t seem to matter which, but try the pale vanilla or the orange-y peach and you’re not fooling anybody). Utz Dark Special pretzels, plain cracker flavor Goldfish. Chocolate chip cookies, with Chips Ahoy a favorite, though homemade from the mix will do. Just make them crunchy with no soft-and-chewy crap.

 

“Alex, try these kale chips!”

 

Kale has a rep worse than that of hot dogs that aren’t Hebrew Nationals, but recently my wife Jill found this recipe where you chop kale, spread it on a cookie sheet with olive oil, salt it like mad and broil it for 20 minutes. You wouldn’t believe how much the result tastes like junk food. “Alex, here-” I try our time-honored method of touching the tip of his finger to the stuff we want him to eat and then touching the fingertip to his lips and tongue. The salt! The oil! Who could resist? Alex twists his lips into a sad rectangle, downturned at the corners, and makes a sound like Snoopy when he’s unhappy. Blaaaah!

 

Alex (almost 14, PDD-NOS) used to eat the cheese off a slice of pizza, that sausage-substance patty from inside the McDonald’s breakfast biscuit, maybe a few berries mashed in his teeth and smeared across his lips. “Jill,” I ask, “what can you tell me about Alex and eating these days?”

 

“I dunno,” she says. “It’s just so difficult. I did get him to drink chicken broth the other night, but I didn’t strain it enough and he kind of gagged on a bit of vegetable…”

 

It isn’t a matter of what but also how: We want Alex at the dinner table. Ned sets placemats for him, but Alex just snatches his bowl of Hebrew Nationals and heads back to the couch to eat them over his iPad. I know we should drag him back, take away the food, starve him until he eats food in the place where we, his family members with the supposedly whole brains, know it needs to be eaten. People have given us this advice, I notice that the people who give such advice often don’t have autistic children themselves. We let him eat his hot dogs at the couch over the iPad for yet another night, but I know we’re just fooling ourselves.

 

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Father’s Day in the autism community is becoming something amazing

By on June 18, 2012 in Autism

Since getting involved in the autism community, particularly with my blog, I’ve gained a little extra attention simply for the fact that I’m a father. I knew, going in, that fathers speaking out was a rarity but I really had no idea just how rare. And while I enjoyed being given a little extra oomph to my voice by people willing to help get fathers heard a little more, I also kind of felt that I shouldn’t be taking it because… well, it’s really not fair. My voice was new, not yet established and even I wasn’t sure if I should be reaching a wider audience yet.

Still, as the years passed, I did get to meet some other fathers and I did get some more extra attention by those who were eager to hear from a dad for a change and started to feel more comfortable in my role… the autism father.

I was getting emails from other dads telling me how nice it is to hear that they’re not alone. Some of them even started blogs of their own. I was getting comments from moms telling me that they passed on something I wrote to their husbands and that they really liked it.

But this year… this year really takes the cake.

And I’m going to write now, a lot about me, but it’s not to gloat. Honest. It’s just that mine is the only perspective I have and don’t follow all of the mentions/articles/features that other dads have. But I will still highlight a few that I did notice.

Anyway, skip passed this next section if you want to get straight to the point because I am trying to make a point here.

A Father’s Point of View

something special magazine

Click for full size

This year, months ahead of time, I was contacted by Something Special Magazine because they wanted to feature a few “Dynomite Dads” for their June issue. It’s a magazine that distributes in only a few states but it’s growing and doing well and to be honest, for a guy sitting at home in a 10×10 room with no windows while my kids are playing, being in a print magazine is pretty awesome.

You can read the whole issue here or click on the thumb to the right to read the page that was about me.

A little closer to Father’s Day, I was contacted by Your Beautiful Child to be the guest featured father for Father’s Day morning. What an honour! And it really was a great show too, I think. Although the hour went by far too fast.

You can listen to my interview here.

On Father’s Day itself, I got mentions from fellow bloggers such as from Lou at Lou’s Land and also from resource sites including:

I even had a blog post of my own that was shared about quite a bit and another blog post of mine featured over at http://SpecialHappens.com as well.

 The rise of the fathers

The point is, which I alluded to earlier, is that father’s are getting noticed and being heard. It’s not that no one would listen before but that we just never tried. Well, ok, some did but not enough. Not nearly enough. There’s still not enough but this proves that more and more dads are getting out there and speaking up.

This proves that more and more people like what we’re saying and want to hear more.

So yes, I shared mostly links to what I had going on but many of those links include more links to other fathers and to other resources with more fathers. Check them out!

Go find those dads… you might not agree with some, that’s to be expected. But some of them may have some very fresh perspectives which may really grab your attention.

And if you’re a dad and you see all these other dads out there, jump right in! Start your own blog, start commenting on other’s blogs, start up a Twitter account.. what ever.

Just, let us hear you. I’ve already proved that people want to.

If you’re still not convinced, check out this video from ABC where they talked to Lou from Lou’s Land… a father.

For more incentive, check out these other great dads:

Yeah, I’m pretty thrilled with the attention I got this Father’s Day. How can I not be? Still, the best part of the day wasn’t all the hoopla at all.

The day started with an email from a man in Florida who simply said that he read my story and now, no longer feels alone.

I can’t even begin to describe to you how great that feels. What a brilliant way to start the day!

Father’s Day is over now, but there’s a whole year to find more dads that are willing to speak up, to give more dads the attention they deserve and to make next Father’s Day even better.

It’s very exciting to me. I’ve seen so much change in so very little time.

Fathers, you rock!

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This one is for the dads

By on June 17, 2012 in Parenting

daddy saddleHere’s to the dads that don’t mind changing diapers, doing the feedings, getting up at night, running the errands, cleaning up the messes and all the other baby things.

Here’s to the dads that have no problem pitching in with dishes, laundry or other chores around the house.

Here’s to the dads that don’t make their wives attend all of their children’s appointments/meetings/events/etc on her own. No matter what their schedule, they make the time.

Here’s to the dads that get up early with their children, miss out on week-ends with friends, don’t get to travel like they used to and may not get out to the sporting events that they once did… and though they miss some of the freedoms of the past, they wouldn’t trade it for anything.

Here’s to the dads that see mostly moms doing the talking online and at conventions and decide to get involved too.

Here’s to the dads that are stay at home parents while their wives work. Despite what society may or may not think, they deserve every bit as much recognition as stay at home mother’s do.

Here’s to the dads that understand that having a special needs child may mean giving up on the dreams that they had for their child but that their child’s future is going to be wonderful and amazing anyhow and will encourage, nurture and support them every step of the way.

Here’s to the dads that are single parents, despite the fact that history and tradition have not prepared them at all and tells them that they can’t do it.

Here’s to the dads that will play with dolls, roll in the dirt, talk on toy phones and do anything else their child needs them to do… even in public.

Here’s to the dads that can work 3 jobs at a time when they have to, to provide for their family, and still manage to find time for family too.

Here’s to the dads who stuck around when all they could think about was leaving.

Becoming a father and being a dad are two different things.

Here’s to you… the friend, role model, strongest person in the world, the vanquisher of monsters, the guy who slips their kid a dollar or a treat even when mom says no… you’re the man of the house and with that you deserve more than just a day.

You’re a dad. It’s who you are.

Here’s to you. For being you.

Happy Father’s Day.

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