A life taken away

take a chanceI was talking with a friend about cancer, how it may take her life. It reminded me of my grandfather who’s life was taken by cancer. It’s… not a fun subject.

But I got to thinking about what exactly that means, “take a life”. Because, the more I think about that friend, the more I realize, that phrase does not mean what I think it means.

Life is so much more than a breath or a heart beat. It’s the culmination of all things experienced, affected, impacted, touched and shared from the moment you came into existence until… infinity.

You probably thought I was going to say until the day you die, didn’t you? But your life doesn’t end there, does it? Do people suddenly forget who you are? Do they suddenly forget the times you had together? Do people who learned something new from you suddenly unlearn it? Do they ever stop missing you?

Life isn’t breathing, it’s being.

Your first kiss, your first point in sports, your first risk, your first love, the first smile on your parents face when they see the pregnancy test results, the heartaches, the successes… all of it. And not just for you but for those all around you. Those who shared in those smiles, the person you kissed and all those lives that were enriched just by you being a part of it.

Yes, your future, the things you have yet to do can be taken from you. But that’s not your life either. That’s a bucket list. And it is tragic. I can not lie. But it can not, in any way, diminish the life you’ve lived nor the life that will continue to live on in others, in time and in space by you having existed and hopefully, being the best you that you can be.

Think of the butterfly effect. The theory that, if you go back far enough in time and kill a butterfly, that it could spark a chain reaction through time through cause and effect that completely and totally changes the way things are now.

That’s fine for the past. But today, right now, you are that butterfly. And your life, you, you have affected all there will ever be for the future.

Your breath and your heart beat can be taken from you. But your life can not.

Don’t ever let the thought of your life being taken away from you get you down.

Because so long as your life has been, it will always be.

And that makes you pretty spectacular.

So live your life, while you can and do all that you can with it. Because no one and no thing can ever take that away.

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The Story of Luke – The autism movie you have to see

The Story of Luke is a movie that I’ve been following closely for some time. Even while they were filming, I was already a fan of their Facebook page and eager to see the end result. I’m very pleased to report, I was not disappointed.

Synopsis

95min. A comedy about Luke, a young man with autism who is on a quest for a job and a girlfriend. Starring Lou Taylor Pucci, Seth Green, Cary Elwes and Kristin Bauer.

The Story of LukeReview

The first thing the synopsis tells you is that it’s a comedy about Luke, which while true, is such a very small part of what this movie really is.

First of all, while it will make you actually laugh out loud in a few places, in others it’ll simply have you smiling and thinking “I totally get that.” While in other places, it will make you want to stand up and shout “You tell’em!!” and then shortly after have you crying your eyes out. And I’m a dad. I’m not supposed to cry. I did.

While this is the story of Luke, hense the title,  it’s also the story of those around him. Because in this film, even though almost everyone around him is “normal”, no one around him is really all that normal either. There’s the sometimes crazy, sometimes wise grandfather who even manages to be crazy and wise at the same time in some instances. There’s the depressed aunt, the midlife crisis uncle, the rebel son/cousin and then the doesn’t fit in with society daugther/cousin. There’s many more that Luke meets along the way as well.

I think the closest movie/story you could compare this to is Adam. I don’t know if you’ve seen that but it’s about a lonely man with Aspergers and his relationship with a girl. In Adam, the movie is very much about Adam, he’s always the focus. But it does give you a very real world glimpse into the life of a person with autism/Aspergers.

In The Story of Luke, while Luke is obviously the main focus, there’s so much more going on. His family evolves, his grandfather evolves, the people he starts to work with all evolve. His efforts, his honesty, his quirkiness and his mere presence makes the lives of those around him change. And it all feels very real. You never get the sense of there being a script or that someone had written this. It all feels so natural, as though it’s a true story.

One big difference I’d like to point out, between Adam and The Story of Luke is that, in Adam, it can be quite painful to watch because you envision your own child as Adam, later in life, living these struggles. It quite literally hurts to imagine your child growing up to be Adam and having a difficult life. It’s very well done in that sense. With Luke however, you never quite get that sense of your child being in his place. And it’s not a bad thing!

As a man on the autism spectrum myself and having a son with autism, I never once got the sense Luke was trying to be me or that my child could be Luke some day. I did have a few dozen “that’s just like my son!” moments though.

Luke stands apart and while very perfectly representing life on the spectrum, he never comes off as representing all autistics, only himself. And that’s quite powerful when you think about it. To relate to him, to see so many similarities and yet, seeing him as being his own man and not just a future version of your own child, is a feat not easily accomplished.

The movie is very much in your face with a lot of swear words, which are very cleverly done actually, very in your face boldness and off the wall terminology that will clearly make little sense to Luke but it’s never done to an extent that you feel it’s vulgar. Still though, it’s probably best to not have the little ones sit in to watch with you if you don’t want them hearing that language.

The movie truly is the story of Luke trying to be a man. Not just to “get a girlfriend” as in Adam but to walk out the door, get a job, get a girlfriend and, as his grandfather would say, “get his $hit together”.

I’ve watched The Story of Luke twice in one day and I still want to watch it over and over again because it’s just so well done. Each and every character is so perfectly portrayed and real. Luke is just so lovable, you really can’t help but want to be there, in the movie, to tell him how awesome he really is. Also, not many movies can shock me with what it says and then make me want to stand up and cheer at how the protagonist responds and then make me want to cry just a few scenes later but this movie does all that and more. And it always feels natural. Like I’m watching real life unfold in front of me.

The Story of Luke is not a movie to put in place of other movies about autism but it’s definitely a movie that you absolutely must include in your autism movie list. You’ll relate, you’ll learn, you’ll adore, laugh and cry.

I guess what I’m trying to say is, I highly recommend that you see this movie.

Awards

  • Audience Choice Award for Best Feature Film at the 2013 Omaha Film Festival
  • Best Film (shared with “Missed Connections“) AND the Audience Award for Best Narrative at the San Luis Obispo International Film Festival
  • Best Narrative Feature Award at Festivus Film Festival
  • Audience Award at SF Indie Fest  (The San Francisco Independent Film Festival)
  • People’s Choice Award for Best Film at The Saint Augustine Film Festival
  • Best Film, Best Actor (Lou Taylor Pucci), Best Director (Alonso Mayo) & Best Trailer at the Irvine International Film Festival
  • Audience Award at the Bahamas International Film Festival!
  • “American Indie Audience Award” from Fort Lauderdale International Film Festival
  • “Best Film” at the San Diego Film Festival

When/Where to see it

The Story of Luke comes out on April 5th in select theaters but it will also be available on iTunes as well.

Check out the trailer here: http://trailers.apple.com/trailers/independent/thestoryofluke/

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Parenting a child with autism is hard, being chastised for saying so is harder

Parenting is hardI’ve been an autism blogger for a while now and as such, I’ve also been an autism blog reader. I love to read the experiences and lessons from other parents, other autistics (I was diagnosed with Aspergers myself) and even from others such as care givers and “experts”. It’s all information for the learning.

One aspect of reading those other blogs is that it hurts to see a parent that just isn’t coping well. For what ever reason, they’re reaching or have reached their breaking point. It’s not that their child is bad, or impossible to handle, it’s just that the struggles have become to heavy to hold any longer. The “little things” have added up and the parent is reaching their nervous breakdown point.

I know that they’re reaching that point because they write about it. Which is good! It really is. Because that release combined with what should be support from other parents and people in the community may just be what holds off that nervous breakdown for one more day or week or month. Getting it off their chest or hearing from others, it’s a big part of why we write. Not just to share but also to reach out for help sometimes, or just to get something out there when there’s no one else close by to listen.

Most often times, that is exactly what happens. People come in to support them. But it’s not always like that.

Sometimes that parent comes under attack for making public the struggles they have with their child. Sometimes they’re made to feel much worse.

Here’s why: When you write, as a parent of a child with autism, you’re writing about autism but you’re also writing about your child. Publicly.

That means that all of the things you say about your child is out there, for the world to read, forever. Including your child when they get older. Including your child’s friends and peers as they get older. And when they do, will they see themselves as a burden on you? Will they think that you just always saw them as some broken kid that made your life hell?

These are all fair points and in many cases, parents choose to write anonymously, either never using names or by using fake names. Some parents just try their best to never “air their dirty laundry” and some parents are simply afraid to put themselves out there because they know that the attacks will be coming if they do.

The ironic thing is though, that when I visit parenting blogs, the ones that are just about parenting with no special needs people in the family at all, there is all kinds of complaining going on. Late nights, early mornings, long car trips, horrendous trips in a plane, toilet training, troubles eating, weeks of being sick and on and on and on.

And when I think back, the very first memories I have after telling people that I’ll be having my first child is of family and friends that are already parents telling me to kiss my sleep goodbye and that I’m going to lose my hair (faster anyway) and the grey hairs will be coming in full force now and on and on and on… again.

Of course, those people had no idea just how right they really were going to be since they didn’t have a child with autism… but I digress.

The thing is, parenting is hard. And parents need help sometimes, even if it’s just to vent or to tell other parents how hard has been or it’s going to be. That’s why there are parenting support groups! And they don’t have children with special needs!

Sometimes it seems as though it’s ok to whine, cry and complain and even make light of how incredibly difficult parenting is but if the child has any special needs, then it’s no longer ok to ever say anything about the struggles ever. That you’re going to damage your child for life by talking about how hard it is to be their parent.

I am not saying that it’s ok to make your child out to be some monster on the internet for all people to see for all time. You do need to choose your words carefully, even when emotionally driven, to ensure that it’s the situation that frustrates you, not the child. To help people understand that there is no love lost and you do not blame your child but that the lack of sleep or the frustration in failures is driving you to reach out for support… it’s not your child to blame.

Remember that what you say can be read for many years and have effects later on in life that you can’t foresee now.

But at the same time, if you’re reading something from someone and they’ve reached the edge of the cliff, a push is not what they need. They need you to pull them back up.

If you see a parent turning their child into “the bad guy” for all to see, that’s not ok and they need to be educated on the ramifications of their words. But educate them, don’t attack them.

If that person’s child is whom you are trying to protect, will pushing their mom or dad over the cliff really help them? Will making them too afraid to ever reach out again help that child? Will pushing a butt load of guilt on them for ruining their child’s future in one little blog post really be the best way to help that child out right now?

Parenting is hard. Period. Autism makes it ever so much harder. Even when the child is doing amazing, parenting is still hard.

Try not to make it harder, even if the good intentions are there.

Educate, not attack.

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Video game lesson – If you can see it, there has to be a way

Cameron - Video GameWhile my boys were playing video games today, there was a level where they could see a door but, try as they might, they could not reach it. I sat and watched as they tried and tried again. Sure, they got frustrated but they didn’t stop until eventually, one of them said “There has to be a way!”

And you know what? They got it. It took a little while but they got it.

I couldn’t help but think what a great lesson that is, not just in playing video games but for life in general. And how much I hope that they can carry that lesson forward in all the things they do.

As I sat there, watching them try and try and try, I thought about all the great successful people that most of us wish we could emulate and it occured to me that their philosophy probably wasn’t that far off from what my children were practicing right at that very moment:

If you can see it, there has to be a way to get it.

I thought about my own life. How I want to learn new materials to advance my career. How I want to start losing weight. How I want to learn new things to get my foot in the door in a more official capacity in the world of autism.

I can see these things. They’re attainable goals. They’re very real possibilities in my future. What I have lacked all this time is the belief that there’s a way to attain them.

I think that’s true for many people in many circumstances in their lives. We set goals, especially New Years resolutions, because we can see ourselves reaching those goals, but when we struggle or fail along the way, we stop believing that there’s a way to reach those goals. We can still see them, we just stop trying to find a way.

But a lot like a video game, if you can see it, there has to be a way. That door was put there for a reason. That extra power up, that extra gold reward, that extra life, it was put there in the game, where you can see it, to make you think and to make you try. It’s a way to challenge you.

The same is true in life. The things we want, the things we need, the goals we work for, they’re put there to challenge us, to make us think and to make us work for it. There has to be a way and so long as we never give up, we’ll find it.

Sometimes it takes a little boy with autism, doing what he loves, to help me see things more clearly.

It’s funny how that works.

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Spread the word to end the word – a suggested suitable replacement

Spread the word to end the word

Today is, once again, the day to end the word. The “r-word”.  Really though, it’s every day, isn’t it? They just make official days to get us bloggers all talking about it at the same time. Which is brilliant. But really, we all need to be talking about it any time the word comes up or when ever the opportunity arises. Not to preach to our friends, family or even strangers about how we want them to talk but to suggest that there may be a better way.

That’s how I look at this, as an opportunity. And since I’ve been at this for a while, I think I know my audience (that’s you) pretty well. Which means that I know you’ve already heard about this and more so, most likely already removed that word from your vocabulary. Even if not, for what ever reason, you’ve at least heard of it and made your decision. (although I do hope you’ll reconsider it someday)

So I won’t sit here and preach to you. You know how it hurts me since I have a child with special needs. You know how it hurts others from those in care facilities to those who simply learn at a slower rate than “normal.” You know all the things I could possibly say to you to convince you to stop using that word.

Instead, I would ask that you seize your opportunities. As awkward as they may be or as shy as you may be or as uncomfortable as it may become, speak up.

Whether it’s a family member, an old friend or some person on the bus, speak up. Be nice, don’t be preachy, and just gently suggest that you and many people find that word offensive no matter how it’s used or in which way it’s intended. Suggest that, even though you valuable their right to say and do as they please, you just request that they understand that it is offensive to many and to take the time to consider all that this implies.

There is one word that I often suggest as a replacement, not to be used in place of, but to be thought of instead. An r-word to replace an r-word.

That word is respect.

When a person is about to or has already used the r-word, think about the other r-word, respect. Respect those that find it offensive. Respect those that are having to hear it. Respect those that are indirectly implied by your using it. Respect yourself enough to have a more evolved vocabulary and sense of community.

You don’t have to respect an individual, in the way in which you’d respect a peer, but to respect the ideal behind those are trying to do something right. For the good of the children, the children’s parents and everyone around the world.

So no, I’m not going to ask that you not use the word. All I ask is that you take today and any day to speak up when someone does. Be respectful in suggesting that they do the same.

And in the mean time, read and share because the more that we get the word out to the world, the faster we can get the word out of the world.

More:

End The Word

Sticks and Stones

What’s in a word?

Being Retarded

 

If you have written a post or found a post about this, please share and I’ll add it to the list above.

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