Tag Archives | patience

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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Recognition for the caregivers in the Autism community

By on September 27, 2011 in Autism

There are a lot of discussions all over the place about non-disabled parents of disabled children, disabled parents of disabled children and those that are disabled without disabled children… who can and can’t understand what, who can and can’t advocate what, who’s voice holds more weight… on and on and on.

These things will be worked out over time, hopefully all mutually agreeable and beneficial… a world of peace, love and happiness for all on the horizon.

However, those not being discussed, and I think really should be, are the care givers.

Not part of a community?

caregiverOne day, discussing Autism related issues on Twitter, a woman replied with a rather insightful comment and then was quick to apologize, as she really had no place to get involved in such a discussion.

You see, she is not autistic nor does she have any children with Autism.

What she does have is an amazing amount of love and wisdom within her that had, for the most part up, until that point, been quiet.

As a woman who has cared for many children with Autism and continues to care for children with Autism, she does not feel as though she is a part of the Autism community.

She reads all of the books, the studies, blog posts, she attends seminars and even went to school specifically to do what she does… but she feels that she has no voice because it’s not her place.

To me, that’s not just a shame, that’s a tragedy.

What one has vs what one does not

You see, I have a great deal of respect for those with Autism and those who have children with Autism because they have a lot thrust on them against their will. They are kind of thrown into the deep end of a life that they likely didn’t expect and may not even want (some of them).

They are forced to educate themselves, to research everything they can… they even have to learn to love themselves in ways that many people don’t.

I’m talking about both the parents and the autistics themselves. It’s a struggle for both. It’s big, it’s scary and it’s wonderful too… it’s different for everyone but it’s big all the same.

Care givers (most of them) don’t have that. They don’t have the life changing diagnosis for themselves or their children. They don’t have that cycle of denial, acceptance and all the other emotions and epiphanies that many of us have.

A care giver has to want it, they have to love and they have to need it.

For many parents and even autistics, this will likely be a very foreign concept as most people would never want it, much less need it.

But these care givers do. They do the research and the seminars, they do the schooling and the reading because it is what they want to do and it’s what they love to do.

When it’s not you…

For me, personally, when I really stop and think about it, I’m in awe. Because I know that I wouldn’t have the same patience level for other people’s children… especially if I didn’t already have an autistic child myself. I also know how I feel when I meet other parents that not only parent differently but do things I simply can not agree with, do things that are detrimental to their child’s development…. these care givers face that almost daily.

Care givers have to work with those parents, they have to deal with the non-verbal, aggressive, non-toilet trained children that are not their own and that have parents that either don’t understand, don’t know what to do, don’t care or… hopefully, do all the right things but simply need help.

And yes, I know you’re going to hate the “deal with” part of my last statement but remember, this is a care giver who loves those children. But it’s still something they have to deal with. It’s not their children, it’s not a life that was thrust on them.

I often write about how much patience I have thanks to my son, how we all become such better people thanks to our children and all of the wonderful things that having an autistic child can teach you…

But these care givers have more patience than I do… and they already knew all of those wonderful things before I did… it’s in them. It’s always been in them. They always were the better person that I’ve been working at becoming.

What’s in a voice?

I am very proud that woman spoke up and I am very happy she did too.

No, she is not autistic and not a parent with an autistic child, she’ll never “truly know” what it’s like to have Autism or a child with Autism… but that’s what makes her perspective an important one. One that I value.

Perhaps she will never blog about having Autism nor will she blog about what it’s like to raise an autistic child but when she does talk about Autism, in what ever form she does…. I’ll be sure to listen.

Because she came to us… and because she loves it. And without her and people like her, we wouldn’t have come as far as we have.

She sees children learn to speak, she sees children do amazing things! She works with them, she plays with them, she hurts when they get hurt and she celebrates their victories.

In conclusion

What I’m trying to say is, if you’re a care giver but feel it’s not your place to give any input or an opinion… I’ll listen to you.

Even if we end up disagreeing on something, I’ll listen to you.

Chances are though, I’ll likely learn something and I’d hate to miss it.

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Acceptance is the greatest gift you can give a child with autism

By on September 6, 2011 in Autism

It’s a scary thought, it truly is, but there are parents out there, far too many really, that simply can not accept that their child has Autism.

Either they’re in denial and refuse to believe the doctors, or they refuse to believe that their isn’t a cure to make their child how they want their child to be… or they just refuse to accept that their child is different… I feel so very bad for those children.

If you can’t accept me, who will?

A child’s only wish is to make their parents proud. To receive praise for those first steps, to get a treat for remembering to tidy up, for getting a shiny new bike for doing well in school… but when your parents see you as broken, defective…. less than you should be… what message does that send to a child?

Children grow up to be self confident because their parents instill that strong self worth in them. Children learn to be happy with themselves because their parents believe, through and through, that their child is wonderful exactly how they are.

Whether a parent tries to fake it or not is irrelevant because a child that can not be accepted by their parents will always feel they’re not wonderful, they’re not worthy of acceptance… that no one will ever like them for who they are.

Acceptance is not giving up

The biggest misconception is that accepting your child for who they are is the same thing as giving up and doing nothing to help them. That’s the furthest thing from the truth.

Only when you accept your child’s disorder can you begin to move forward in truly helping your child overcome, excel and maybe even turn that disorder into an advantage.

Many people who refuse to accept that their child has Autism will also refuse to start therapy, treatments and such… losing valuable time, if they ever do come around to accepting it all.

Also, acceptance in finally believing that your child is who they are, how they are and that they are simply always going to be different can help you to adjust your strategies and methods in that you recognize the need to incorporate your child’s wishes, behaviors, activities and “quirks” into the therapies/treatments that you’re trying to use.

Until you stop forcing change on your child and rather, accept the differences and work with your child’s differences, you will keep hitting road block after road block.

Therapy isn’t meant to make it so that your child is no longer autistic, it’s to help your child succeed with Autism, not despite it.

Acceptance leads to self respect, self confidence, self reliance

self acceptanceA child without his or her parent’s acceptance will grow up with self doubt, no self value and will always feel like they don’t belong… like they’re broken.

With acceptance though, a child can grow up to feel that they are respected and have real value to themselves and others. With confidence, children will feel more bold, more brave and more willing to take the steps necessary to becoming independent.

If you look at your child like they’re broken… they may never learn to brush their teeth. But if you love them for who they are (yes, including the fact that they have Autism) and begin to work with your child, with the Autism, you will find a way to have them brushing their teeth and you’ll find that way together, because you’ll work together to do it.

Acceptance is such a powerful thing… it’s far more than just believing the diagnosis… it’s empowering, it’s life skill building, it’s a source of pride, it’s a confidence booster, it’s enlightening….

Acceptance is not giving up. Acceptance is not saying something you don’t really believe.

Acceptance is a place. It’s a moment in time. It’s a destination that will set you on an entirely new path, a beautiful path. It’s the end of negativity and the beginning of limitless possibilities.

Acceptance is the door that you need to open… step through and close behind you.

Move forward with your child, not against your child.

Your child can be perfect. All you have to do is believe it. Because they are.

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Knowing your child’s limits

By on August 3, 2011 in Autism

No one knows your child better than you do… at least, that’s how it should be. That’s not true for every single parent but that’s a subject for another post. I digress…

All children have limits, Autism has a way of setting the bar a tad lower so that it’s hit a little sooner, a little more often. However, it’s still a bar to reach and as the parent, you begin to recognize where that bar is and how far away your child is from reaching it.

The terrible twos

angerIt’s usually around the age of two when that limit begins to show itself in a recognizable fashion. It’s around this time that afternoon naps stop happening as part of a routine and begin happening as a way to calm the storm.

For what ever reason, when children get tired… they do one of two things:

  1. They put their head down or against what ever they have next to them, unable to keep their eyes open any longer, then fade away into dream land
  2. They build momentum, gathering energy from the depths of their being and turn into very loud, very hateful little monsters that freak out at seemingly anything and nothing

Does any of that sound familiar? Do you remember those days?

Anyone that has a child older than 2 recognizes the “uh oh, I think someone is ready for a nap” part of the day where nothing can keep a child from getting upset.

Autism and the years that follow

The reason that it’s called the terrible twos is that children grow out of that, they stop having naps and hopefully stop testing you so much.

With Autism though, that may not be the case. Well, let me rephrase that… they may stop napping, they may stop testing you but they may still be reaching their limits just as easily as ever.

For example

My son Cameron, 6 with Autism has long outgrown afternoon naps. His little brother Tyler, 3 without Autism, has now outgrown naps as well.

However, there are still days when Tyler is very obviously tired in the afternoon and not happy with anything. On those days, he’s sent off to bed whether he likes it or not.

It’s much more rare but the same thing happens with Cameron, even to this day.

If he’s having a bad day, if he had a long day the day before, if he woke up too early, if he went to bed too late…. any number of things and in fact, sometimes it seems as though there’s no reason at all…. sometimes he’s simply just at the end of his rope far too easily, far too often.

Today was one of those days.

I work from home but we still have a babysitter during the day when my wife works… as I can’t really work and take care of them at the same time. Well, Cameron was at the end of his rope.. outright defiant and screaming at the baby sitter. So I had to step away from my computer and make an appearance.

It was very clear to me that Cameron had reached his limit and wasn’t coping with it.

Sometimes Cameron, and most autistics really, learn how to deal with it themselves… seeking out a quiet area to be by themselves, or even just sitting back and doing something so as to sort of “power down”, as I call it, to just relax for a bit.

Cameron was clearly not going to be powering down today on his own so I had to step in, get him to his room and inform him of his need to have a nap. He objected, quite loudly, but that was that.

Almost 2 hours later, he emerged from the room… a completely different child. TWO HOURS! So ya…. he was tired!

Pay Attention

You know your child and you know when they’ve gone beyond the point of no return. Meaning, they can’t calm themselves back down, they can’t seek out the quiet, relaxation they need on their own… you will have to be the bad guy and tell them that you don’t care what they want, they need to calm down.

Once completely out of control, they could hurt themselves or others… even if not, sometimes the grief is so strong after that they feel guilty for days for how they acted.

If you can’t avoid it from happening before hand, you have to step in and do something as it happens before it gets out of hand.

Know your child’s limits.

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What a difference six years can make

By on July 29, 2011 in Autism

Yesterday was Cameron’s birthday… the day he was born… 6 years ago. I originally started writing this post yesterday, to be posted on his birthday but we did so much the whole day that I never did get that chance.

Even though he’s taller than many nine year old children, he’s still and always will be my little boy.

If you have a few minutes, I’d like to give you 6 years.

Once upon a time, I think it was a Thursday…

cameron 0 days old

Cameron - 0 days old

Showing up at the hospital at 8am on the 27th, my wife was “induced” at 11am… wait, wait, wait, push, push, push… my beautiful little boy was born 14 hours later, after 1am on Thursday morning.

That whole first year was amazing… having this little baby sleeping on my chest as I lie on the couch, feeling his little fingers grab onto my finger.

It was everything that parenthood was meant to be. Even the 3 hour feeds all day and night. Friends and family would look at me with this wide smile, sarcastically asking how much sleep I was getting or how tired I was… to their disappointment, I was more than happy with how it was. I don’t even remember how much sleep I got, all I know is that I would have been happy being awake for the whole year… so that I wouldn’t miss a thing.

I loved it.

Enter the villain of our story

first birthday - cakeOn Cameron’s first birthday, my wife had this wonderful vision of a smashed up birthday cake all over the place. She had one made with 2/3 icing and only 1/3 actual cake… this makes it easier to get little fingers into and spread around.

But that didn’t happen. It turned out that we had the only little boy in the world (or so we thought at the time) that didn’t like to get dirty. My wife took his hand and buried it into the cake, which fascinated Cameron but again… it wasn’t what we had hoped for.

With the help of some off camera funny faces, we were able to get the picture that we thought would make it all… “normal.” It was what we had to do to get what we wanted. Not what he wanted.

On top of that… his entire first year was without any words, toilet training and without any more snuggling on the couch together.

His first year, he had to spend a good 20-40 minutes with me on the couch at the start of each day or else he’d be upset.

That hasn’t happened since.

The battle begins

After Cameron turned 1, he spent most of his time separating blocks by colour, lining up cars, flipping them over to spin the wheels, doing his Thai-Chi and other very unusual and repetitive behaviours.

I spent a fair portion of that year doing research and when Cameron turned 2, I asked our family doctor for an assessment.

He told me that Cameron was a bright boy, that he was likely just going to be a late talker and recommended we just wait.

We respected his opinion but insisted anyhow… 6 months later, I was in Toronto with Cameron, visiting a hospital.

Cameron in the news

Cameron in the news

During Cameron’s assessment, Cameron shocked me. Almost even worried me…. he spoke!

The doctor took out a little bottle, a little wand and filled the room with bubbles. To my complete and total surprise, Cameron said “bubbles!”

To be perfectly honest, and the reason I say it worried me, was that this.. of all times, would be when he speaks. That these people would look at me like a neurotic parent that was just wasting their time or worse, making things up. See, I had told them that Cameron can’t speak. He just proved me wrong… right in front of them.

How embarrassing! Wonderful… but embarrassing.

It turns out that I didn’t have anything to worry about because they diagnosed him with PDD-NOS, on the Autism Spectrum. One word certainly isn’t enough to fool a doctor out of a diagnosis… I know that now, I didn’t then.

Fast forward a bit

I’ve written previously about the 3 year wait lists we were put on, the $150/hour speech therapy appointments… how my wife took it upon herself to learn the treatments and therapies so she could do it at home…  I’ve even written several times about how we gave up our house, everything we had and moved pretty far in order to get Cameron into a special school where he could excel rather than regress… so I won’t repeat it.

I will, however, tell you about something amazing.

When Cameron was diagnosed, despite having said one word… they told me that it’s entirely possible he might never have “normal speech” and even if he does, it’s even more likely that he’ll never be very good at social interaction and communication.

We were told not to be too disappointed or hard on him if he just can’t grasp toilet training.

Essentially, we were told not to expect the worst but to be prepared for it. Cameron may never progress, he may progress and then regress… anything was possible.

Cameron proved them wrong. Not us, Cameron did.

Truly inspirational

Cameron iPad

Reading Cat in the Hat

I will never deny that my wife and I have done a lot to get where we are.. we’ve never given up and always tried our hardest. But the truth is that the real person responsible for where Cameron is today is Cameron.

At 6 years old, Cameron is reading Cat in the Hat books himself, he has friends, he’s doing well at school, he can ride a bike now (for the most part), he can finish video games, he speaks in complete sentences (he even says “You and I” instead of “me and you”!!)… he’s doing exceptionally well.

That’s not to say that he doesn’t still have his issues… his senses are still very sensitive, he still needs his specific diet, he still gets overwhelmed quickly and needs quiet time… you get the idea.

I try my best to support people, give them positivity and even inspire people as best I can but the honest truth is that the real inspiration is Cameron.

It’s just simply amazing to think of how well he’s doing despite all of the things I was told almost 4 years ago. He’s overcoming obstacles, he’s smashing through barriers. He’s never giving up.

I don’t just say that as a proud parent.. if you ever get to meet Cameron, you’ll see it in him.

Never Giving Up

As soon as I could have actual conversations with him… I would ask Cameron “What do you do when you fall down?” and his very simple answer was “get up”.

I asked him that at least 2 or 3 times a week, for over two years now. Half the time he answers on auto pilot (without thinking about it), the other half he is always happy to answer because I always praise him so much for being right.

He didn’t learn that from me. I learned it from him. All I ever do is remind him.

Cameron didn’t learn to ride his bike until he was 5… he started learning when he was 3. It took a long time but he never gave up. Cameron had a very hard time playing any sort of video game due to poor motor control but a year later, he could win most races at Mario Kart Wii.

Reading, writing, math, puzzles… it never mattered what it was, he would do it every day, on his own, never willing to give it up.

It was really quite easy for my wife to sit him down to learn the alphabet or numbers or how to do tasks because he was always eager to learn them and no matter how hard it was, he was always eager to keep doing it over and over.

And if there is something he can’t do, if a bad guy in a game can beat him… he gets mad. Not meltdown mad… just… mad. When that happens, there is no turning off the game, there is no doing anything else. It drives him.

No matter how inspiring people can be, no matter how much wisdom they have to share with me… no one inspires me as much as Cameron does.

My hope is that one day he’ll be able to look back on this blog and anything else I do and realize how much he has done for me. I’m so very proud of him.

Cameron - 6 Years Old

Cameron - 6 Years Old

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