Tag Archives | future

The one thing I wish I could tell every depressed autistic child

enduranceSince starting Autcraft, I’ve talked to a lot of depressed autistics, mostly children. Many of them were suicidal. This is not something I recommend for most people to ever try. It is a very heavy burden that can weigh heavy on your heart after a while.

I find that this happens a lot for me because I am the ideal candidate for this to happen to. I’m an autistic adult who’s still a kid at heart and once was a depressed autistic kid just like them. To say that I can relate is a massive understatement.

For those of you that watch The Flash, the new television series about the super fast superhero, you’ll totally get what I’m talking about here but if you don’t, don’t worry, I’ll try to explain. In the television show, there is The Flash who can run crazy fast but there’s also another guy, the villain, who they call The Reverse Flash. He runs even faster. The problem is, the good guys don’t know who this Reverse Flash really is until he slips up. In an effort to help The Flash run faster than he’s ever run before, he begins encouraging him by explaining to him how to reach those speeds, how to feel as the speeds take over him, how to handle the experiences he’s now going through. It was then that The Flash, our hero, realized who The Reverse Flash was because only he would know what it was like. Only someone that has shared those experiences could truly understand him.

In my case, these children that come to me to talk to me about their lives because they know who their Reverse Flash is… I can tell them what they’re experiencing, what they’re feeling and hopefully, how to get through it faster. I understand.

When they start to tell me how alone they feel, I can explain exactly what it is they’re feeling in words that they’ve never been able to before. When they say that no one understands them, I not only describe exactly how that feels for me as well but in doing so, I show them that there really is someone that understands them.

So knowing that, I’ve come to realize that there is only one common piece of advice that I give to most people that seems to help… and it’s the one thing that I wish that I could tell all young autistic children everywhere: “there’s an older you that needs you to endure this.”

When I think back to the younger me, I wish so hard that there was some way that I could just go back in time, to myself, just to tell myself, “I know it’s hard. And I know you never believe it when anyone else says it but maybe you’ll believe it from me, from yourself… endure this because it’s worth it.”

We’ve all heard “it gets better” but we all know that a child never believes that. Not when life is that bad. There is no one that can ever convince you of it. That goes double if you’re autistic. I can’t tell you why but if you are autistic, you know it.

But there is a future you, a happy you, a you that makes a difference in the world and is doing alright. And that future you, if they’re anything like me, would love nothing more than to have a chance to talk to you right now just to let you know that it’ll turn out alright, but first you have to endure this. And yes, it will suck. But as there’s a future you wanting to telling you this, you know that you can do it.

There are no time machines but even if there were, there are far too many autistic children that never give themselves the chance to meet their future selves. Perhaps if they could have, they would have seen for themselves that if only they can endure this… it will be worth it.

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The Happy Birthday Colin fan page vs the ghost of Christmas future

I’m sure you’ve heard of it by now but if not, there’s a Facebok fan page out there called Happy Birthday Colin that a mother created for her son to prove to him that there are caring people in the world. To best explain it is to use her own words from it’s title status:

I am Colin’s mom, I created this page for my amazing, wonderful, challenging son who is about to turn 11 on March 9th. Because of Colin’s disabilities, social skills are not easy for him, and he often acts out in school, and the other kids don’t like him. So when I asked him if he wanted a party for his birthday, he said there wasn’t a point because he has no friends. He eats lunch alone in the office everyday because no one will let him sit with them, and rather than force someone to be unhappy with his presence, he sits alone in the office. So I thought, if I could create a page where people could send him positive thoughts and encouraging words, that would be better than any birthday party. Please join me in making my very original son feel special on his day.

It’s a nice gesture, a well intentioned thought. And the response has been incredible. Their fan page just hit over 2,000,000 likes as of the time of this writing, which is more than most Hollywood celebrities get. They also get a lot of mail delivered to their local post office, again, more than most Hollywood celebrities. Naturally, this will be rather short lived as he’s not a Hollywood celebrity and his birthday is just one day and basically, his 15 minutes are finite.

However, as it circulated through out the social media world and the news media, many people took up arms and went on the attack against this well intentioned thought. The idea that a mother would make her son a celebrity based on the fact that he has no friends is going to leave a mark on his soul that can never be erased. The fan page might be removed one day and his 15 minutes will be up at some point but those news stories will live on and the history of what she did and what was said will live on forever. And he’ll have to live with that.

GhostOfChristmasFutureScrooged400Those people refuse to ‘like’ his page. They have no problem though with blogging and writing about how terrible the mom is. They have no problem with predicting a very dark and grim future for Colin.

I have a few questions though. What sort of rosey, magical rainbow paradise are you picturing this kid is going to live in when he’s older if only this fan page didn’t exist? Do you honestly think the bullies will just go away as he gets older? Do you honestly think that he’ll just one day start making all kinds of friends for no real reason other than him being older?

Don’t get me wrong, yes I think people will find this page or it’s story in the future and yes, some will likely even laugh at him for it or maybe even use it against him in some way. But do you honestly think people that would do be so mean really even need it? Do you honestly think that a bully, wanting to hurt someone for no other reason than for the enjoyment it brings them to make someone suffer, would take the time to surf the web and drum up decades old info to use on someone?

Let me put it another way, if this mom hadn’t done this, do you honestly think that a bully would think to himself “well, I didn’t find anything about him on Facebook, I guess I just won’t bother him.”?

No, a bully is a bully and they’ll make something up if they don’t have the ammo they need. A person that would laugh at someone else because of something embarrassing his mother did to him as a kid is a person that is going to laugh at you for no good reason at all. A potential boss that decides on whether or not to hire you based on stuff from your childhood? Not worth working for. Anyone that would judge you because you had a rough childhood or worse, because you had a mom that did something so incredible for you even if it was embarrassing? Those people aren’t worth knowing.

You are not the ghost of Christmas future anymore than I am. However, there are a few things that I do know.

1. Parents embarrass us. It’s just the way it is. It’s like it’s their job. They hug and kiss their kids in public, they wear old outdated clothes, they don’t understand the latest slang or music and they go over the top to show their love sometimes. It’s what parents do. No, not usually to the tune of 2,000,000 Facebook fans but honestly, to a kid, does it feel less embarrassing when your mom shows people a picture of you in your underwear or naked in the tub?

2. Bullies don’t disappear just because your parents shelter you from them. This mom could stay out of this kid’s life completely but he’ll still have no friends. He will still get bullied. She could be the most perfect parent on the planet and do everything right and he’ll still have no friends. The bullies will still be there. During his birthday, as he gets older and later in life… whether she makes a Facebook fan page or not, the bullies will be there.

Listen, the phrase “it gets better” is true but it’s not because our parents hide us better or because the bullies or bad people go away, it’s because we grow up. We begin to understand that those bad people have no power over us and that it only ever felt like it did because we allowed them to have that power. It does get better but not because of anything anyone else does, it’s because we just won’t take it anymore. We get stronger.

Telling this mom that she did something terrible by doing this? That makes you the bully. Telling this kid that the bullying doesn’t stop and that he’ll have no friends in the future? That makes me the bully.

But whether his mom embarrasses him, or whether you rip into her for it or whether I tell him the future is still pretty sucky… none of that matters. It’s on Colin. Just like it was on you, me and everyone else. We need to be the ones that love our parents for embarrassing us like they did because of just how much they loved us. And we’re lucky to have that. We need to be the ones to stand up and say that those bullies are wrong and worthless and have no power over us. We need to be the ones to say that it’s going to get better because we say so. Not anyone else.

You can judge this mom all you want but don’t do it from your pedestal of mystical foresight as if your best guesses of what the future will bring are some cold hard facts when you know full well that you hate it when other people do that to you as they dissect your every parental decision. Don’t be a hypocrite. Don’t be the person you hate when this stuff happens to you.

Finally, consider this.

What if your message hit home, not just with this mom but with every parent every where and collectively we all stopped doing every single “well intentioned” thing we could do for our children for fear of what a bully might say later in life.

What then?
Did you win?
Or did the bullies?

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Autism Fears – Do you share these?

fearAutism awareness, for many, only includes the facts and figures, the stories of heartache and the “struggle” that the media likes to talk about so much. It gives parents so much fear in their hearts that some just outright refuse to have children just to avoid the risk of having a child of their own with autism.

I have my own fears. After years of seeing this “awareness” thing breed more and more fear, I’ve come to develop my own fears as a direct result.

  1. I fear that doctors will continue looking for a prenatal screening method to start giving mothers the option to abort a child just because it has autism. There are already far too many beautiful lives not being lived just because parents decide not to conceive just due to the risk.
  2. I fear that, should my son find someone wonderful to love, and marry and have a life with… that she may fear the thought of having children with him. Autism is genetic after all. The risk is automatically amplified. I’d hate, hate, HATE, for someone to hesitate in giving my son a family of his own because of their own fears.
  3. I fear that, as the ratios get closer and closer to 1 in 2 (they’ll never be that but they’re getting there), one day people may see my son as “one of those people.” Awareness is nice and all but there can be awareness without acceptance. And if that happens, if there becomes a division within society rather than an inclusion, my son may find himself having a tougher battle than I ever had.
    An individual is great. People scare me. And society, thus far, hasn’t given me much reason to think that they can overcome their fears.
  4. I fear more and more people will continue to replace the risks with much bigger risks such as feeding bleach to their children or refusing to vaccinate. People are willing to try anything. And by anything, I mean anything. You can only try “anything” for so long before you start treading into unhealthy territory.

Each April, with the increase in awareness efforts, I worry. My own fears set in. I see people talk about how hard it is. How terrible it is. What the numbers are. What’s worse. What’s not right. What’s not funded. What’s not available. And I see people afraid.

At least once a week, I receive emails from people telling me that they fear the risks. If they already have a child with autism, the doctors tell them the risk increases with another child. If they’re expecting a boy, the risks increase. If they have autism in their family, the risks increase. Risk, risk, risk!!

One day, I fear, the playgrounds will be empty. The classrooms will be vacant. I fear the future.

I used to fear the future anyway, for what it would not do for autistics. Now I fear it for what it might do. If the fear continues to grow.

My child already has the deck stacked against him. I’m afraid to think how much harder it can get by good people thinking they’re doing good things but not recognizing the fear they feed.

Awareness is good. Awareness is necessary. But awareness without education, without explanation, without acceptance… that’s what I fear.

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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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With autism, consider making the path your goal, not the goal your path

Read a “how to be successful” book and it will tell you to start with a 5 year goal, then break it down to 5 individual yearly goals, then break those down to monthly goals, then to weekly and eventually to daily goals. The idea being that you set your sights on where you want to be and break it down to the steps you need to take to get there.

When our child is diagnosed with autism, we tend to focus on them having a family of their own one day, a steady job and all that “normal” stuff we think will be what makes our child a happy grown up some day. Then we deconstruct that backwards into smaller goals. With autism, it’s not as easy to break down into daily or even weekly goals but that’s what we’re thrown into by way of scheduled therapy sessions, ABA and strict routines.

And when something doesn’t appear to be working, we change paths. Our focus being the goal no matter which path we need to get there. Rightly so, I mean, this is our children we’re talking about. A parent does what ever a parent needs to do for their child.

When Cameron was diagnosed, we were faced with a lot of wait lists. We were in the right place to get the best therapists and everything that Cameron would need but we’d have to wait until after he was 5 years old to get it. We searched around and found a school with a new autism program where a select few classes are specifically for autistic children.

We were faced with a choice: wait for what we were told are the best services available or move, losing most of everything we had, and get immediate help but unsure of how well it would go. Back then, all we knew was that it was a new program at a little school in a little town.  So, start immediately with the unknown or wait several years for the best.

I look back at it as more than just a choice of starting then or starting later, I see it as choosing between the end goal and the path to get to that goal.

Focusing on the end goal, to me, is a way of focusing on the problem. You still love your child and want what’s best for them, but you’re so very focused on removing what ever road block is in front of them that the path to reaching that goal becomes unimportant.

You spend your time talking about the problem, dwelling on the problem, asking for advice on the problem, reading about the problem, writing about the problem, trying different things to solve the problem… eventually the people close to you hear you talking more about the problem than about your actual child. They’d never tell you that and it would never feel like that but let’s face it, you become a bit of a downer dude.

In this way, the problem becomes your path to the goal. “What ever it takes” is driven by the road block, by your drive to over come that road block and reach the end goal.

Focusing on the path, however, allows you to still get to your end goal but the way in which you look at and approach the situation can be drastically different.

Consider this, that the one key constant between now, your end goal, all of the road blocks, all of the successes and everything in between, is your child.

Given all of that, if you could choose only one thing to put your focus on and keep it there, what would it be?

It’s not that I suggest giving up on anything, only shifting your point of view a bit.

You can’t force the future to be what you want it to be, you can only do your best here and now, in the present and trust that it will be enough to take you to the future that you want. What you have right now are not problems to be solved in order to get the outcome you desire.

You have a child. A child that is waiting for you to line up some cars too. To spin them on their roof. To get more building blocks for sorting by color. For sitting down and drawing trees, or trains or what ever they love to draw too. A child that loves you so very much even if they can’t find a way to express it to you. A child who doesn’t want you to think they’re a burden and certainly not a problem for you to solve.

The path to the goal? It’s a kiss on the head as they sleep. It’s a rare hug out of nowhere. It’s a favorite blanket that you always remember to have for them. It’s giving them the freedom to leave the dinner table in between bites if they have to. It’s in reading the same bedtime story 5 years in a row.

By the way, that school that we gave up everything for? Best decision ever. The teachers, EAs and entire school is just so kind, caring, nurturing and understanding that I believe Cameron never would have come as far if we had gone to “the best”.

We focused on our child. In letting him be a child. In joining him on his path rather than forcing him to take our path.

If you want a new house or a car or a boat, make yourself a plan of action and focus on your goal.

If you have a child with autism, make yourself a goal and then focus on your child. With your love and support, your guidance and encouragement, they’ll lead you to it. You’ll just have to follow their path.

path_rainbow

Make your path the goal

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