Tag Archives | behavior

When one child’s autism influences another child’s 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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The complexities of a hug

My son used to need snuggle time with me every morning when he first woke up. For the first little while, it was a bit of an annoyance (I sometimes had other things I needed to do) but a very pleasant and welcomed one. I cherished that time we had each morning and even though he refuses to do that with me anymore, I still remember it fondly.

While he never was a hugger or anything, that snuggle time was pretty awesome… but, once he no longer desired that, it all came to a stop. He still loved me but there were no more “signs” of love, in the traditional sense.

Then, a few years later, he become more and more willing to give and receive hugs… until eventually he became to depend on them. Every single night, before bed, we do hugs and even kisses… as regularly and routinely as we had done when we had our morning snuggles.

This too will stop one day, as he gets older, but that’s ok. I love it for right now and knowing what I know about Autism, it’s not something that I would ever take for granted.

How does a hug work?

hugsNo one ever thinks to ask what it is about a hug that makes it so comforting… how does it work, what the rules when hugging? That’s because it pretty much comes naturally. Someone hugs you, you hug back and all is good with the world.

It just isn’t that simple for my son. I mean, for the most part, he gets it… he loves to hug me before bed and there is no way he could get that wrong.

Have you ever hugged someone because they got hurt or felt sad? Cameron does that too… all on his own. No one taught him that. However, this is where the complication comes in.

Egg timer?

Believe it or not, at this point, we have to start timing his hugs… so that he knows when to let go. That may sound a little odd but basically, it’s become necessary.

When his little brother is hurt, Cameron will grab him, and hug him with every fiber of his being… and not let go. To Cameron, that’s what you’re supposed to do.

And I love that about him… I truly do. He really truly cares, he really truly is trying to make it all better for his little brother.

But if you’ve ever grabbed onto an upset 3 year old and tried to hold him there, you know that it doesn’t work very well. After a few seconds, the little guy goes completely nuts and matters only escalate from there.

This makes Cameron want to hold on tighter.

When his little brother gets more upset, Cameron holds on more, thinking that it will help. He’s truly a wonderful big brother, I love that about him. However, he’s going to need a little guidance on this one.

Hug Instructions

As a parent of a child with Autism, I’m sure you can relate with this but…. there are just some things in life that you never imagined you’d have to give instructions on. Like giving a hug for example.

But that’s what it boils down to. Hug instructions.

The trick is to make Cameron understand that he’s not doing anything wrong. That we are so very happy that he loves his little brother and that he wants so bad to make everything all better.

While reassuring him of that, we simply need guide him in how to do it in a more appropriate fashion… for example, counting to 5 and then letting go. Recognizing when his little brother gets MORE upset and then letting go. Things like that.

And they’ll take time and take work, but it’s so worth it because I’d hate for Cameron to feel bad about what he’s doing and shut it out of his life forever.

I lost those morning snuggles and while I understood why and I didn’t really mind, I realized never to take such a wonderful thing for granted. And it’s entirely selfish of me, in a way, but I don’t want to lose Cameron’s desire to hug us.

And as much as his little brother gets upset when Cameron holds on too long… I’m fairly sure that he wouldn’t want his big brother to stop either.

Who knew that hugging could be so complicated?

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What a difference six years can make

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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Life is the key to decyphering Autism

A “cipher (or cypher)” is essentially a scrambled up message that requires a “key” to unscramble it. For example, if you used 1-26 instead of a-z to write out a message. You’d take that long list of numbers, change the numbers back to the letters they represent and presto, you’d have a readable message.

The reason I’m explaining this is that there’s a stage in Autism where a person goes from non-verbal to being very cryptic to being a person capable of appropriate conversations. Sometimes this “stage” happens in childhood, sometimes it’s adulthood, sometimes it’s for a year and sometimes it’s for many years.

What happens is that a person with Autism will likely think very differently than most “normal” people but not really realize that there is a difference. Therefore what they imagine is happening, or their ability (or lack there of) to explain it, often ends up in something that sounds like some sort of code and often leaves us parents having to crack it.

The good news is that we have the tools to do it. The bad news is that we’re the only ones with the tools to do it because the key to cracking the cipher is that person’s life.

I’ll give you two examples of what I mean, the first happened just tonight.

Cameron has been having it particularly rough the last couple of weeks, outbursts, crying fits, general bad behavior… so finally, tonight, I sat him down and had a talk with him.

  • Me: Cameron, what is going on? We need to stop and talk… we need to find out why you are doing more bad things than good things.
  • Cameron: …
  • Me: Does your tummy hurt? Does your head hurt? Are you sad because we changed your bedroom? Are you sad because a teacher left your class?
  • Cameron: When I do bad things… when… bad stuff… I have bad things dancing around in my head.
  • Me: You have bad things dancing around in your head? What do you mean? What bad things?
  • Cameron: bad things like… hitting… and pushing… and cutting…
  • Me: Those things dance around in your head?
  • Cameron: ya… and I can’t get them out.
  • Me: Who is doing the hitting and pushing and cutting in your head?
  • Cameron: <names another child at school>… he cuts… the teachers…
  • Me: I see, he does these things in your head?
  • Cameron: Ya… and I can’t get them out.

So at bed time, while putting on his PJ’s, I talk to him about it again.

  • Me: So what do you think we should do about these bad things dancing around in your head?
  • Cameron: We have to cut them out.
  • Me: Well, we can’t just cut things out of your head.
  • Cameron: Ya.. we have to make a hole… and cut them out and put it back again.
  • Me: Sorry buddy, but it doesn’t work that way.
  • Cameron: Why?
  • Me: It’s just not that easy. We can’t cut you and take ideas out of your head. We have to find another way.
  • Me: What do you do with food that you don’t like?
  • Cameron: Throw it in the garbage.
  • Me: So what can you do if it’s bad ideas dancing in your head that you don’t like.
  • Cameron: Throw it in the garbage!!
  • Me: And what is left if you throw the bad ideas in the garbage?
  • Cameron: …. uhmm.. good ideas?
  • Me: Right. Do you think that would work?
  • Cameron: Ya!!!

Do I think that will work? Who knows. On some movie set or episode of Dr. Phil maybe… but it’s a start. At least I have a good idea now that the actions of his lower functioning class mate are starting to wear on him. This gives me, and his teachers something to work with.

And it fits because this is very very similar to the outbursts we had with him when he first started school over a year and a half ago. He didn’t feel safe. Now it’s happening again.

My second example (I didn’t forget) was when his teachers wrote in his journal that he was complaining about a strange noise in his head. Again, close to bed time, I talked to him about it. He described it as a strange noise in his head, that he couldn’t stop and couldn’t get out.

After some world class interrogation skills and deductive reasoning on my part (ya right), I was able to determine that the “noise” was mooing and it was part of a song that he liked but hadn’t heard in a while. A line or two from that song was stuck in his head, playing over and over again. He didn’t know what song and couldn’t make it stop. We’ve all had that happen before!

So again, both examples show that not many people could have figured out what exactly was going on in that marvellously complex mind of his because you need the key to unscramble the messages… and that key is his life.

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He has become self aware

Ok so my son isn’t a robot, but he does have some challenges that differ him from many other children, namely, Autism.

My two boys share the same bedroom which presents certain problems around bedtime. They tend to talk or play rather than go to sleep. This can be a bit of a problem when Cameron has school the next day. Like all children, he needs his sleep, but as a child with Autism, he needs it that much more or else his stimming and meltdown tendencies may become much more evident the next day.

In the past, I’ve separated them by putting one boy in my bed (mom’s bed, as they call it). I alternate between the boys so that they feel it’s fair but really, this is not the best solution. We can’t keep doing this until they get separate rooms, can we? What if I want to go to bed early?

Finally, one night, I decided to take on the discipline route… putting X’s on their behaviour chart, threatening to take something away. Finally, after being awake 2 hours later than their bed time (this was not a school night so I wasn’t hugely worried)… I said “that’s it… no video games and no television all day tomorrow!”

Sadly, this sounds like more of a punishment for my wife and I but ultimately it was a good thing. They needed a reminder that they have a lot of things they can do besides video games and television anyway, and it is also what would hurt the most.

So the entire next day, they moped around but found other things to do as they were supposed to. They even got a treat just before bed, since they handled their day so well, they got to watch Cat in the Hat on tv for 30 mins before bed.

The next day things were back to normal, and come bed time, I asked Cameron “Do you want to sleep in your bed tonight? Remember though, if you talk and play instead of going to sleep, you get no video games or tv tomorrow.”

Cameron thought about it for a little while, like… really thought about it… and said “uhmm… maybe I can sleep in mom’s bed tonight?”

Wow. Did he seriously just figure that one out on his own? I mean, he must have realized that in his room, he would be far too tempted to talk and play. In all that serious thinking he did, he must have realized that if he was in his bed, there’s no way he’d be able to resist the temptation to play.

Rather than risk it, he opted for the separation right from the start. Not just opted for it, but suggested it. I didn’t even include that as an option in my question.. I implied that it was an option by asking, but didn’t make it an option for a very specific reason.

The reason I titled this article “He has become self aware” is because this has been a big focus for me… to have him recognize upcoming hazards and avoid them by suggesting something better. Stop and think about your own child that has Autism and question how often this happens.. it’s really not an easy thing to do when your mind is so focused on the “here and now”.

As with many things in my blog, this is only a first step and certainly not going to dictate his actions/thoughts for his life but this is a great first step, I think. He’s become aware of his limitations and suggested a course of action to get the results he desires.

Good job Cameron!

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