Tag Archives | understanding

The most important lesson that I had to teach to the adults just as much as the children

By on September 19, 2014 in Autism

Communication UnderstandingDuring my time running Autcraft, I found myself constantly teaching people things. I taught children how to work together, how to be a friend, how to play the game, how to deal with bullies and so much more. I also found myself teaching adults as well. How to play the game mostly but also how to cope with troubling behaviours, how to extend their patience level and even how to switch a system which focuses on punishments to one that focuses on positive reinforcement.

The biggest thing though, the number one thing that I found myself constantly having to teach, reteach, remind and reinforce over and over and over again was, what I feel, the number one single most determining factor in the success of the server… communication.

When a player (child or adult) did something wrong such as swear, lash out, destroy someone’s property or quite literally anything else, it was my job to talk to them. Communicate.

I needed to find out why they did what they did, what they were thinking in doing it, what they hoped to accomplish and if they understood why it wasn’t ok. I had to explain why it’s not allowed and how it affects others around them. I had to reach an understanding. Communication.

Time and time again though, I’d have to remind the adults on the server of the same thing. The parents, the autistic adults, the SrHelpers and even the other admins. When patience levels would dwindle, when a behaviour became a repetitive situation… the desire to even try and communicate would grow less and less. But it was always crucial. It was always imperative.

Only through understanding the motives, the thought process and the intentions would we truly be able to understand the person and only then could we explain why it was wrong, or misguided or not appropriate.

Nine times out of ten, once we could see from their point of view, we could understand how they came to behave in the way that they did. And when that happens, a mutual respect is achieved. A bond is formed. You get them, they get you and they feel more comfortable with you as you actually take the time to “get them.”

This offers benefits for both parties. The person trusts you more and is more inclined to open up to you and come to you next time as they’re no longer afraid that they’ll just get in trouble and they know that you’ll take the time to understand them next time too and likewise, you yourself gain greater insight into why people do what they do, you learn to put aside your judgments and assumptions and you learn to keep calm and use your kindness and compassion to get to the truth.

Most problems I encountered were built on a foundation of assumptions, jumping to conclusions or simply not taking the time to understand, or worse, not caring too.

As people learned to take the time to talk, not just talk but to communication with the intention of understanding, everything just ran better and better. Players played together better. Staff managed the place better. Players felt more comfortable and open to approaching us.

Above all else, communicate. Take the time to understand. It’s not just a lesson for the children, it’s not just a lesson for the players, it’s also a lesson that many adults, parents and even the staff have had to learn… myself including. It’s also not just something you learn but something you get better at over time.

If you can take the time to do this, and keep doing it, all other pieces just fall into place.

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Why my child needs to know that he has autism

By on September 18, 2013 in Autism

I am an adult with Aspergers but I wasn’t always. Before I was diagnosed, at 36 years of age, I was an adult that was very confused, I had no self esteem and I was always extremely depressed. Before that, I was a child that was very confused, with no self esteem and depressed.

For the better part of my life, I struggled with my work, relationships, school, my appearance, friends… let’s just say that I struggled with everything. I hated life. But the part that I hated most was the feeling where, it’s not just that I didn’t fit in, I was the same as everyone else but I simply could not make anything in my life work right no matter how hard I tried and no kind words, medication, self help books or anything else could fix it. No one could tell me… what was wrong with me?!?!

Now, before I continue, if any of my family is reading this and it starts to make you feel like you let me down, don’t. You didn’t know, I didn’t know, no one knew. And considering how mixed up and down I was feeling that whole time and the fact that I’m still here, I’d say you did great!

My 3 greatest fears in life, listed least to most are:

  1. Death
  2. Being alone
  3. Feeling alone despite being with people and not knowing why

AloneWhen my son was first diagnosed with autism, I came to realize that many of his experiences mimicked my experiences. I wasn’t just reliving my youth the way a parent does through their children, I was reliving my heartaches. A lot of my past was suddenly explained to me as I started to put the pieces together. This was amplified a hundred fold when I was actually diagnosed. To this day I don’t know why but somehow, making it official, really opened my eyes to a lot in my life that had, up until then, remained unanswered.

I was bullied, I had few friends, I had bizarre obsessions and habits, I never wanted to leave my room and I remember every detail of every event that caused me pain, whether physical or mental. For example, I remember how I got the scar on my knee when I was 2 and I remember very well how I felt when my mom told me that I told an inappropriate joke before I was old enough to know it was an inappropriate joke. I felt terrible!

Still, I can take all that and more (which I am not about to list on a public blog) and very confidently say that it doesn’t even come close to the very overwhelmingly sinking and crushing feeling of being so completely and totally alone while with people that love you and want nothing more than for you to just feel good about yourself for once.

If this was a YouTube video, I’m sure most of their viewers would read that last bit and then comment to tell me that I’m just a moron and should just smarten up and listen to those people.  In a way, this is a good thing because it tells me that those people, and probably most people really, will never know just what that feels like and how impossible it is to do. That’s good, I think. I would hope that most people never really understand how that feels.

I’ve talked to a lot of people that are either waiting to or hoping to never tell their child that they have autism. They fear labels and they do not want to make them feel like they’re different or that there is something wrong with them. I get that, I really do, but take it from someone that’s been there and done that, they know. Believe me, unless your child is still two or three years old, they know.  But they can’t quantify it nor explain it and if it affects them even a bit like it did me, then they most definitely do think that there is something wrong with them.

Now, I want to stop right here and say that I know full well that all people are different, all lives are different and just because my upbringing was as I describe it, it is in no way a certainty that anyone else’s life would be the same. Still though, in my acceptance of this fact, I must also insist that you accept the fact that maybe, just maybe, it could turn out the same.

When you feel like you can’t ever have friends, you can never do anything right, everyone gets to be happy except you, talking to people comes easy to everyone but you, you’re a bully magnet, you can’t do or say anything right and life in general seems to not work for you, at all, ever, you KNOW you are different. You KNOW that something is wrong with you. But what you don’t know is why. And not knowing why is the scariest, most lonely feeling in the world.

I need to base my decision on my previous experience. I need to know that my greatest fears and feelings are something that I do not pass on to my son. I know now that I can’t protect him by keeping the truth from him.

My child needs to know because not knowing is a pain that I could never wish on anyone.

What he does with that knowledge is up to him. Will he come to accept that there really is nothing wrong with him, as I have? Having autism and being different doesn’t mean there is something wrong with you.  Will he seek out guidance and therapies to help him with friendships, work, love and life? I do not know. But at least now he’ll know what kind of help he’s looking for. I didn’t have that.

My greatest wish for my son, and everyone really, is to accept and love yourself. But how can a person accept and love them self if they never really know who they are?

 

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Autism Awareness Day – A few things to consider

By on April 2, 2013 in Autism

World Autism Awareness DayAs you are likely already aware, April 2nd is World Autism Awareness Day, or, WAAD for short.

To be aware of something is to “have knowledge of”, according to the dictionary. I think a more accurate description would be “to be conscious of the existence of”, especially when it comes to autism.

The reason I say that is because just about every parent I’ve ever talked to, and I even have to include myself in this, was aware of autism, in that they knew it existed, but really didn’t know anything about autism at all until they had to. That is to say, they had seen the commercials and were told that children were hurting themselves or unable to go to school… but they really didn’t know how autism affected people. They didn’t know the signs to be able to recognize it in their own child.

They were aware. It didn’t help.

So to shed a new perspective on this, I thought I’d lay out some observations, some concerns and even some suggestions in moving forward with this “autism awareness” thing.

Facts and Figures

Autism statistics usually come in the form of ratios, such as how many kids out of how many kids will be diagnosed with autism. But they don’t stop there.  There is complimentary information that goes along with that such as the likelihood of having autism if your family has a history of it, of having a second child with autism, the added probability if the baby is a boy, the chances of autism going up if the mother or father is of a certain age, proximity to a highway, birth information such as c-sections, premature birth, underweight babies, jaundiced babies and the list goes on and on and on.

There was even one study that suggested that countries that get more rainfall are going to have higher autism rates.

Many people dedicate their social network activity on Autism Awareness Day to sharing these tidbits of information in an effort to do their part in raising awareness. Copying and pasting every piece of information from every autism fact website that they can find so that anyone that views their activity that day will become increasingly aware of autism.

This method really only has 2 possible results.

1. You reduce every single person, mostly people with autism but even those without, into a number. You strip away all humanity from these people and leave, in their place, a number on a research paper. People stop thinking about people out there struggling, coping, doing well or not and they start thinking, I hope my child doesn’t become the 1 in the 88.

2. You scare everyone half to death. There is absolutely no reason what so ever to be sharing all of this information except to scare people. And for some people, that’s exactly the point because they’re looking for donations or people to buy their shirts and bumper stickers. Others are so afraid of autism themselves that they are looking to rally more people to their fight. Either way, scaring new parents or potential new parents is not cool. Which leads me to…

Awareness takes two paths

Ever since the day I discovered autism myself, I’ve firmly held the belief that awareness is simply not enough. In fact, I even got the Facebook url, http://www.facebook.com/AwarenessIsNotEnough

The reason for this is that awareness needs to be accompanied with educational material to be effective. And I’m not talking about just numbers, as in the last point about facts and figures. I am talking about thorough, well rounded and well articulated information. This is what leads to understanding. Which is extremely important.

Awareness is quite literally the first step towards understanding and acceptance. You can’t possibly begin to understand something that you are not yet even aware of and you certainly can’t accept it. So awareness needs to happen. There is no denying that.

However, left alone, it takes an altogether different path.

Awareness, all by itself, especially in the case of something such as autism, will lead to fear.

Consider this, if you are not aware of something, you can’t possibly fear it. But if you do become aware of something’s existence, but do not know anything about it, the natural reaction is fear. You can watch any sci-fi movie or talk to any psychologist to see that. It’s called “fear of the unknown”. It’s really quite powerful.

And any autism parent can tell you, most people, like all except a few, were aware of autism but didn’t know anything about it at all until it came time for their own child to be diagnosed. And in between the time when they became aware of autism and the time that they began to research it, they feared it. They wished and prayed and begged that autism would never enter their lives.

Because they read the tweets, they saw the nicely crafted images and they were all too aware of the scary facts. But it was still something they knew absolutely nothing about.

The Choice: Acceptance or Fear?

After a child is diagnosed, most parents feel a sense of guilt, or remorse or even anger as they are forced to come to terms with this thing they’ve been aware of but hoped would never happen to their own child.

At some point though, for all parents, eventually they’ll come to a point in their lives where they’ll be forced to make a decision. It’s not a conscious decision, it happens entirely without them realizing it sometimes, but ultimately, they’re going to find that they’ll have to decide between putting the fears and doubts and grief and anger behind them and accepting their child for who they are or not accepting any of it and embracing the fear.

What I mean by “embracing the fear” is that some parents fight against the autism and thus fight against their own child, pushing them to not be themselves, to not be autistic at all and take that fight outward as they try to find someone or something to blame and forcibly share more and more information that they find in an attempt to perpetuate the fear onto others so that they can fear autism as well.

The Consequences

Awareness is mandatory. It has to happen and it’s been happening for a good long time. But it must coincide with good information.

I use this example when I talk about awareness:

Imagine your very first day of camping. You’re in a tent and it’s very dark out. You hear a noise just outside your tent, going through your stuff.
You’ve heard about just how many dangerous animals there are. You’ve been told about how often campers encounter those dangerous animals.
You immediately become aware. You know something is there. But you don’t know what.
The fear of the unknown grips you as you are all to aware that it could be one of a million things in the forest.
The feeling takes over and you decide it’s best to just pull the sleeping bag over your head and hide rather than look out to see what it is.
That’s awareness without information.

Now imagine you begin to hear little feet scurrying. And then you hear a noise that you know is the sound that a chipmunk makes.
You recognize the signs and your tension releases as you realize that you left the lid off of your jar of peanuts.
That’s awareness with information.

This is how life is for many people when all they know of autism is what they see in bullet point lists from the media or awareness day campaigns.

When a new parent reads “more children are diagnosed with autism each year than with juvenile diabetes, AIDS or cancer, combined“, they’re not only scared because that must be one really huge number but also because you’re just associated autism with stuff that would kill them. Even if a person tries really hard not to, they can’t help but look at that sentence and think “oh no, I hope my child doesn’t have that, that, that or that!” and suddenly, in their mind, autism has become a terminal disease.

And that is beyond scary.

Autism awareness is not a copy and pasted bullet point list. It’s stories, it’s faces, it’s names and it’s real human lives. It’s tales that are told of how things used to be and how you wish they could be now and hope they can be tomorrow.

Autism awareness is about a community working together and supporting each other to relieve the tension and to ease the fears, not add to them.

No, no one is asking you to try to paint such a wonderful picture that people start wishing their next child could be lucky enough to have autism but I am asking that you try to not paint a picture that has people fearing autism more than aids and cancer combined.

I’m asking that you stop and take a moment and question to yourself, before you say or share something, what is it’s purpose? Will it inform a person or scare them? Will it help them when they have a child or will it make them not want to have a child at all? Will it make them want to hide or will it make them want to look outside of their tent to find out more?

I can honestly say, I’ve read far too many emails and private messages from young potential parents that are hesitating  as they make the decision to have a child. I’ve also read far to many messages from people that actually made the decision to not have children. And all because of the awareness they’ve been given without the information to know what it is they’re really basing their decision on.

Awareness has to happen. And I commend you for doing your part. But please don’t stop there.

Tell your story. Tell a tale. Show us a real human life.

Because I don’t want great people to not have great children just because they’re afraid of what they don’t understand.

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

By on March 11, 2013 in Autism, Parenting

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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What my autistic child wishes for you to know

By on February 12, 2013 in Autism

What does my autistic child wish for you to know?

He’s a kid.

What? You were expecting me to say that he has special needs, he sometimes needs a little extra patience from you, a little less judgment, that sometimes he really is so focused on something that he doesn’t hear you, that sometimes he has meltdowns that may seem to be happening for no reason to you, that he’s not really like that guy in the last Hollywood movie or TV show you saw that had some guy with autism?

See, you already know those things. Even if you don’t know much about autism, you know those things. It’s why you expected me and anyone else who writes a “what my autistic child wants you to know” article to list things like that, maybe in hopes that we’d mention something new or say something in some new better or more enlightening way.

kidsThe truth is, the one simple and honest to goodness truth is, which is the one simple thing that so many people seem to forget, for what ever reason, is that a kid is a kid.

All children need extra patience. All children should be judgment free. All children should be able and encouraged to focus on what they love sometimes.

I could go on and on but having a child with autism hasn’t made me realize how much more I need to do for him, it’s made me realize how much more I can do for him, for my other son and for all children.

When I go to my kid’s school and see other children, they say “Hi Mr Duncan!” because they know me. Some can’t speak and give me a wave. It’s because I help them when they need it. Because I smile at them and for them, even when it may seem like they’re not looking my way. Because I see a child. Not a troubled child, not a special child, not a slow child, not a disabled child…  just a child being a child.

And it’s awesome.

I could argue that because my son has autism, it’s made me a better parent and even a better person in general because all of those things you thought I was going to say about autism, while true, have helped me to realize that those are all things that I should be applying to my other child as well and to all children.

So I’m not going to give you a long bullet point list of behaviors, clinical mumbo jumbo or anything else because there’s a bunch of those articles already out there. And even though I’m not doing that, I do encourage you to find them and check them out. More than one, as they all have something the others don’t.

And then when you’re done reading them, consider this… how can you apply what you now know to all children?

So stop looking at a child as “weird” or “not normal” or as “a problem” and stop thinking about how terrible the parent is because the child is not as you would expect them to be. Because yes, that child may have autism but you know what, it doesn’t matter.

Because a kid is a kid. And when you learn how to best understand, accept, respect and encourage the most needing of children, you can then apply that to all children.

They’ll be better off for it and so will you.

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