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Connecting with a child that has autism – which is real? Face to face or virtual?

By on July 22, 2015 in Autism

Talking with some of the parents that help to run Autcraft, we had an interesting discussion about how some professionals or “experts” still don’t see any value in video games because, from their perspective, they are not “real.” But what is real? Is it a face to face conversation? How about a conversation via the phone? Or a video call? How about two avatars that represent ourselves that are face to face, talking?

When an expert talks about what is real, they come from the traditional, textbook approach to therapy in which the only way to truly understand and assess a person is via physical observation… being face to face. And many times this is very true. I wouldn’t want anyone trying to diagnose my children with anything without having met them at least once.

They’re not entirely wrong in that, from a virtual perspective, which is the one I’m most accustomed to, I find that it’s easy to almost sort of forget that the person you’re talking to is a very real person. When a player is acting out on my Minecraft server or behaving inappropriately, it’s easy to lose patience with them or become frustrated with them, especially if it’s an ongoing, repetitive behavior. Really though, if we had a webcam on them or were in the room with them to see the innocent looking little boy or girl who’s not understanding what they’re doing or on the brink of crying… we would approach the situation quite differently. Perhaps our patience wouldn’t leave us so quickly. Perhaps we’d better perceive the behavior and thus, the cause and solution for it.

Still though, having been talking to and helping literally thousands of children with autism over the last couple of years, I’ve come to realize that there is a very real benefit to not being face to face with them. By removing the anxiety, fear and shyness that can come so easily to a child with autism when face to face with anyone, much less a stranger, you can finally get to what is truly real… the child.

All children, especially those with autism, will likely take a very long time (if ever) to finally open up to you and reveal their true selves. Finding a way through their fear or anxiety or even just their desire to please you by saying what you want to hear, it’s extremely difficult to have a child reveal their true personality. Some parents are actually still waiting for this to happen from their own children, so what hope does an “expert” have just by insisting that what’s real is simply, face to face.

Having a virtual conversation means not having to think about your body language, facial expressions, eye contact, fidgeting, what the other person’s body language or facial expressions might mean, you can take the time to choose your words carefully and also you feel more free to just say what’s on your mind because… well, as ironic as all of this is… it feels like it’s not real! If it doesn’t feel real to the child (no human there, no repercussions, no one will ever know), then there’s no reason not to do and say what ever is on your mind.

So sure, maybe the experts don’t see it as real and maybe those kids don’t really see it as real either but for me, the guy in the middle of it all, I welcome that because I can use that finally get to what is truly real… the child’s real self.

Why does Autcraft make such a huge difference in people’s lives if it’s just a game and not real to so many people?

lisa simpson friendshipWell, because we all know the value in having someone to talk to. Someone that you can be honest with, someone that makes you feel safe and someone that you know that you can be real with. You can share your fears, insecurities, talk about feeling suicidal or even, talk about the wonderful things in your life, the things that make you feel great that you fear people might tease you for… you can share as much or as little as you wish too because you are in a place where you don’t have to be face to face to feel safe. And video games, in my case, my Minecraft server, gives many of these kids exactly that. A not real environment where they feel more real than anywhere else in their lives.

So instead of trying to figure out what is and isn’t real, perhaps instead you should be asking which interpretation of real is most important to you.

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A life taken away

By on March 16, 2013 in General

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 subjective relativity with which we define “normal”

By on April 17, 2012 in Autism

Normal… that peculiar notion of fitting in with those around us. Not with society… but with those around us. In highschool, some people felt it was normal to be with the cool kids, others with the nerds and so on. At work, for me, the designers tend to fit in with other designers more so than programmers and programmers tend to fit in with other programmers better than designers.

For parents, we want our children to be normal in the sense that they feel comfortable fitting in with other children that are good influences. If they tend to fall in with “the wrong crowd”…. then perhaps normal to them is something that we (the parents) won’t be too comfortable with.

For those of us with special needs children, we think of normal in an entirely different context.

Normal is much more abstract than all of that.

Normal is a conflicting array of all that we could ever wish for and the last thing we’d ever want.

not normalWhen our child is born

A funny thing happens when we have a child. I like to call it “their life flashing before your eyes.” They’re born, you flash a glimpse of their entire life… in contrast to when you are dying and you flash a glimpse of your own entire life.

Essentially, we see a fresh new start with limitless possibilities and all of the ways our child’s life can be so much better than our own was.

With that comes a very strong desire for our child to be anything but normal.

We see them standing against the crowd, standing up to bullies, being able to think differently and creatively… all of the wonderful qualities that makes an innovator, trail blazer and leader.

The last thing we want for our child is to be… mediocre… average… normal.

Growing up normal

The whole problem with the dream of bringing a child into the world that will be anything but normal is that we teach them from day one to be exactly that… normal.

Do as your told, eat all your food, say please & thank you, respect your elders and on and on and on… they’re all good things for people to know and do. But without really putting much thought into it, you are setting your child on the path to being normal.

We send our child to day care, school, play dates, the park… all in an effort to make friends like everyone else. To go to birthday parties like everyone else. To just fit in.

Oh, we still want for them to be great… to be smarter than the other kids, to get straight A’s in school and to be the cool kid that others want to hang out with.

But we sort of want them to do it the ‘normal’ way.

Then comes the diagnosis

Chances are, if your child has autism, you knew before the diagnosis that something wasn’t… dare I say it… normal.

But receiving the official word from the doctor is usually the moment that it truly sinks in for us and our notion of just what was and wasn’t normal is completely changed.

It’s pretty much at that point where all of the optimistic dreams of limitless possibilities leave us and we look at our child wishing for exactly the one thing that we didn’t want for them… to be normal.

The talking comes later, if at all, the toilet training comes later, if at all, the friend making comes later, if at all… and each step of the way, you’re thinking “not normal”, “not normal”, “not normal.”

But then…

Hopefully, if we learn how to help our child, where to get help, what works best and what doesn’t and we figure out what our child is truly capable of… we start to realize that all of this time, through all of these dreams and doubts… we got exactly what we wanted.

Our child is not normal.

We wanted it from the start, we dreamt of it and we wished for it… we just didn’t picture it this way.

But that shouldn’t get us down. Our child is beautiful and wonderful and amazing!

We find ourselves taking great appreciation in the nuances of speech, our senses, the patterns around us, the finer details, the strengths and weaknesses in others and ourselves, the world around us and in the power of unconditional love.

Our children continue to grow and show us just how much we’ve been missing in our lives. Just how much we were completely unaware of all around us.

We missed it… because we’re normal.

Our children are not.

Thank goodness.

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Our autistic child’s first sleep over

By on April 11, 2012 in Autism

This post was written by my wife, Natalie, and editted by me, Stuart. This is, in her words, how Cameron’s very first sleepover went and how she handled issues when/as they came up.

sleeping

We autism parents envy other parents for a lot of reasons. One of the biggest reasons can best be demonstrated by… the sleep over.

We all want our children to have them. Autism parents have to wonder if it’ll even be possible though. Depending on where our children are on the spectrum, it might just not be a possibility. For those with children who are ready for social play, sleepovers are possible but they’re still not without their challenges.

As a parent, there are a lot of questions that come up with this subject; Is my child old enough? Will his routine be followed? Will he need me for anything? What if he’s up too late? Should the first sleep over be in our home or at a friends? And the list goes on.

We are very lucky with Cameron. He has friends, he can communicate quite well and can even be social (albeit awkwardly, but still social). This particular friend just loves him and does not see Cameron’s autism as an issue for their friendship. We cannot begin to tell you how blessed we feel to be able to say that!

But with all that being said, a sleepover between a neurotypical child and an autistic child (and let’s not forget the little brother too!) has its challenges.

Concerns

A sleepover is a time of excitement, yummy foods mommy usually doesn’t allow, staying up late, pillow fights and tons of fun. That can be over stimulating for any child. It can cause a child to become hyper active or even careless. But in the case of an autistic child, well most of you know it can turn ugly, very quickly.

Tantrums, stimming, screaming and hitting are just some of the issues that can come up.

So how do we, as parents, prepare for an event like this while still keeping it as normal as possible? I need to pause here and explain what I mean by “normal“.

Cameron will read books, watch tv and hear stories about holidays or things like sleepovers and based on those, he will have a concrete set of rules for how these holidays and events should be.

Before we even broach the subject of a sleepover, he already has a list ready of things that need to happen from what he’s seen and read. So changing out something, like popcorn for a fruit snack, would be completely out of the question.

The sleepover: Before bed

We decided the best approach would be to have the friend stay with us for the sleepover, rather than have Cameron sleep out. Special diet, routines and techniques to ease Cameron’s anxiety are too much to throw at another parent for one night.

When Cameron’s friend showed up, Cameron (and Tyler) greeted him happily at the door. They watched a movie, played games and with toys, had time for a video game (Mario Party 9 was a big hit) and enjoyed some yummy snacks (popcorn).

So far, so good! No meltdowns and everyone was getting along and playing nicely. A huge success all around.

The sleepover: Time for bed

We set the boys up so that all 3 could sleep in one room. Cameron was in his bed, his friend was in Tyler’s bed and Tyler was on the floor, using couch cushions. All of the boys were tucked in for the night and going well.

We got that wonderful feeling of relief when we were able to put our feet up and call it a success.

However, that feeling did not last long.

His friend kept calling us into the bedroom saying things like “Cameron is too noisy!” and “Cameron won’t stop talking!” I knew what the problem was, but I wasn’t quite sure how to address it.

You see, Cameron has to “stim” before going to sleep each night. We’re not sure why exactly, he just needs it. Either it settles his mind, or he just needs to get it out of his system… we don’t see the harm in it so long as he sleeps.

If I took Cameron out of the room would the friend be upset? Would Cameron be upset? Would they sleep?

I asked Cameron to come out of the room and talk to me. I talked to him about falling asleep in our bed and then later having Daddy put him back into his bed. That way he can still wake up with his friend in the morning. I also asked the friend if it would be ok for him to fall asleep with Tyler and not Cameron.

Everyone agreed! (a miracle right?)

I explained to Cameron that stimming before bed (which he does every night, no exceptions) was ok, but it was keeping the friend awake. If he sleeps in our room he can stim as long as he needs to.

We’re lucky to have Tyler. He often acts as a buffer for Cameron, helping him in ways I’m not even sure they notice yet.

Going forward

In our case we were able to reason with Cameron, talk out the situation and come to a solution together. We’re very lucky to be able to do this with a 6yr old, especially one who is autistic

We now know what issues may arise if Cameron were to ever be asked to sleep out of the home. We’ll know what to expect and how to prepare the parents.

Don’t be afraid to let your child try new things. Sometimes it may not go so well while other times they may surprise you! But you won’t know what your child is capable of if you never let them try.

We were pleasantly surprised and will now be even more prepared for the next sleepover.

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When one child’s autism influences another child’s autism

By on March 28, 2012 in Autism

For the most part, ABA therapy and other such systems separate the child from the world for some one on one coaching… one therapist, one child.

In many ways, this is not a very good practice when the child is having difficulty coping with social situations and they’re essentially removed from any and all social situations. It’s like trying to help a child play the piano without giving them a piano.

Still though, at the same time… there is some benefit to this. We all know how kids are, with or without autism… the phrase “monkey see, monkey do” comes to mind. Children (and certainly most adults too) are heavily influenced by their peers. When they see someone behave a certain way in a certain situation, they believe that it’s just how it is supposed to be and so they behave the same.

influenceSchool

My child is in a special school with classes dedicated to autistic children. There are now 5 classes, most around the 5-6 kids size. Which again, like ABA, has some great benefits which I love but then it also has a few problems.

Now, to be clear, these are essentially the same problems that are found in every classroom, it’s just that these can be amplified when autism is involved.

When you put 5 or 6 children together in a classroom, you find that the children will range in behaviors quite radically. Some children are completely obsessive/compulsive in certain objects or mannerisms while others seem to be all over the place. Some children are quite vocal (you know, the never stop talking kind) while others struggle to string words together at all.

In these types of situations, as you can imagine, the “monkey see, monkey do” world of peer influence can be both encouraging and discouraging.

What you find is that some parents love such a positive place where their struggling children can learn the better behaviors of his/her peers while other parents fear that their children will pick up the unwanted/not desired behaviors of some of the other children.

Friends

That’s just school… the same holds true with friends. And this is where things can get… uhmm… sticky?

As a parent of a child with special needs, we all wish for nothing more than for other parents and their children to look passed those needs and just be friends for the sake of being friends. Have play dates, birthday parties… have fun together.

You have to understand that their child, whether they have autism or not, may pick up some behaviors that may be unwanted in their house. That quirky, “it’s just an autism thing”, behavior that you tell your friend that you get used to… might not be something that they want to get used to. And they’ll be sitting there hoping upon hope that their child doesn’t pick it up from yours. They’re not afraid of autism being contagious or anything… it’s just that they know that kids will be kids.

This divide (if you can call it that) even exists in the autism community, I have found. Let’s say that you have a child that is integrating well, learning and desiring to be social and their future looks promising… and then a fellow parent in the community invites you and your child over for a play date or birthday party or something because they don’t have a lot of options, they don’t have a lot of friends and they’re hoping you and your child will be there, because you’re both in the autism community… but their child isn’t coping so well. They are easily angered, aggressive, have mannerisms or behaviors that you hope your child does not pick up…  suddenly, you’re “the other parent” that I had just described in the previous paragraph.

You’re both in the autism community so you should be far more understanding and willing to go ahead and do it but at the same time, because your child does have autism, you know they’re far more likely to pick up those behaviors and mannerisms than a child without autism would.

You find yourself understanding why other parents whose children don’t have autism are reluctant to allow their kids to play with yours… because you find yourself being in the exact same situation.

Suddenly ABA isn’t looking so bad huh?

Peers

We can’t shelter ourselves from our peers anymore than we can shelter our children from theirs. Ultimately, bad behaviors are out there and we’ve picked up some from others and our kids will most definitely pick some up from other kids.

It sure is hard though… seeing your child do something at home that you don’t like when you saw some other kid do earlier.

Autism makes it especially hard… when you see your child being that “bad influence” for others and at the same time being very likely to pick up those bad behaviors from other “bad influences”.

I use quotes because most kids aren’t bad influences. They just have some behaviors that you do not desire for your own kids to have.

Ultimately it’s up to each of us to decide what is best for our children, what will and won’t be a good influence on them. But it sure is easier to ask other people to be understanding of our unwanted behaviors than it is for us to be understanding of theirs.

Be careful what you wish for

It’s funny, those of us who have children that don’t speak for a long time… we wish and wish and wish for them to find their voice. Then they do. Then a few years later we’re telling them to stop talking all the way through a movie, or to stop talking and eat or… just to stop for a minute!

Being social is the same, in a way. Autism is classified in the way it makes being social so difficult.. and so we wish and wish and wish that our children can be more social and go to play dates and birthday parties… and then when it happens, we fear the influence!

How can we wish for something so bad… and then not want it again so quickly? Is that what we wished for? Were we unaware of the issues that would come with our wish or were we more than willing to accept those issues if only our wishes could be answered?

Because it seems to me that it’s easy to forget about not caring about the issues when the issues would be a welcome problem to have… that doesn’t diminish the problem though.

We still want our kids to stop talking all the way through dinner or the movie we’re watching. And we still want our children to be around positive influences more than negative ones.

But at the same time, we can’t forget the alternative… we can’t forget all of those out there who still haven’t gotten their wish.

So many people would love to have their children ruin their movie by talking through it… because it would mean that they’re talking. So many people would love to have to worry about what bad behaviors they might pick up from other kids at a birthday party…  because it would mean they’d be at a birthday party!

When something seems like a problem… don’t think “be careful what you wish for” and don’t think “monkey see, monkey do”….  instead, think of another old cliche….  take nothing for granted.

So I think, and this is just my opinion, that sometimes a problem is a good problem to have. Because not having that problem can be so much worse. So keep the big picture in mind when you make these decisions… as I said, it doesn’t diminish the issue but perhaps it will give you a new perspective.

Besides, despite this whole article… not all influences are bad influences. There could be some good things picked up along the way!

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