Tag Archives | communication

Autism and the mystery injuries

By on May 9, 2011 in Autism

One of the biggest problems with Autism, whether your child is verbal or non verbal, is the lack of information. Even if your child speaks quite well, there’s a good chance that you won’t get the information out of them that you’re looking for.

In my case, this is never more apparent than when my son has a random cut, scrape or bruise on his body. And I don’t intend to speak for everyone but I have spoken to more than enough other parents to realize that this isn’t isolated to just my experience.

Introducing the bruise

bruiseThis bruise, pictured right (click to see full size), appeared on my son’s leg this week-end. It’s in the back of his leg, under his knee… which leaves us wondering if it was there sooner and we just didn’t notice, if it appeared during the week-end at some random point or if it actually happened this week-end.

The problem is this… my son doesn’t remember how he got it. This isn’t surprising because most people really don’t remember getting a bruise, since it tends to appear well after the impact that caused it.

But in my son’s case, and I assume many Autistic cases, this is bit more common.

Of all the things he remembers….

My son, like many (but not all) Autistics, has quite the amazing memory. He can hear a story book one time in September and remember it word for word in April. He remembers games I played with him when he was just 1. But ask him how he got a scratch on his face, or a scrape on his arm or, in this case, a bruise on his leg… and he simply will not have an answer.

I’m not sure if it’s selective memory blocking… you know, not wanting to be able to recall a painful event, or if that sort of event really just doesn’t get stored in there sometimes.

What I do know is that it’s not an ideal situation. I don’t mean that from just a convenience stand point but from a safety stand point.

As a parent, you see these injuries and wonder if there is a bully, an abuser, an unsafe environment… you want your child to be safe and not having the information sends your mind into overdrive. Chances are though, he just fell down, hit something too hard, tripped over another student or who knows what… but it’s probably just one of many sores that children are going to get. They play pretty hard.

The Mystery

Still, we’re left wondering. How did this bruise happen? It’s nearly black. It’s very big and not only that, what you don’t see in the picture is that it goes straight across the back of his leg and even appears much more lightly on the other leg.

To me, this means he got whacked with something (like a stick) or that he fell back against something like a hard chair or something.

I’m fairly certain that it’s an innocent bruise (no one intentionally hurt him) but again, I don’t know what did it because he doesn’t know.

As a parent, that’s scary. As a parent of a child with Autism, it’s one more issue to deal with on top of countless others.

If there are studies on this, I am unaware of them. I’m not even sure how they could study something like this. But I suspect that if it was possible, the results would show that I’m not the only parent that has to play detective to find the cause of random injuries. In fact, I would wager that it’s all too common.

Do this happen with you and your children? Please share your experiences.

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How Mario taught me just how much help to give to my children

By on May 6, 2011 in Autism, Parenting

There are a lot of different parenting styles out there to match a lot of different types of parents. One of the biggest and most obvious differences we see in each other is how much we try to “help” our children.

HelpI put that in quotes because we do all try to help (there are some parents that don’t but that’s another matter). However, some of us don’t do enough and some of us do too much… both of which probably isn’t really helping at all.

If you never help your child, you’re teaching them to be independent but you’re also teaching them they that they can’t depend on you at all. If you help them with everything, you’re teaching them to be dependent for life and never be able to fend for themselves.

There needs to be a healthy balance and I think I’ve found it… in video games.

Mario Dad to the rescue

I’ve posted several times about how my son loves Mario and even how it’s been quite beneficial in his development. It wasn’t until recently that I realized another way in which these games help him… and it’s then that it dawned on me how I can best help him.

In my house, my wife is almost as much of a Mario fan as Cameron is… I’m a fan too but I prefer the much more difficult games, I like the challenge.

As such, when my son gets to a level or a boss that has him stumped, he immediately asks for help. If my wife is unable to help, they call on me and I pick up the controller, beat it and go back to what I was doing.

As I said, it got me to thinking about helping our children in general.

Helping – In the game

The game is a challenge, it’s difficult. Most of it he can manage on his own, he can figure it out. He learns problem solving skills as well as hand-eye coordination.

When it gets too hard, he tries several times but fails. I join him, watch him try and then try it myself.

If it’s a level thing, I do the hard part and promptly give him the controller back to finish the rest of the level himself. If it’s a boss, I just beat the boss and let him collect the reward and move on.

He watches me… 9 times out of 10, this helps him to return to that level or boss and beat it himself next time.

Helping – In real life

Life gets pretty hard sometimes… it’s all relative. For a 5 year old, having to finish all your veggies before you get ice cream is about the equivalent to me having to finish the dishes before I get to watch a movie.

Anyway, sometimes a child (even our adult children) get to a spot in their lives where they’ve tried but are unable to move forward.

He tries several times and fails, I see what he’s trying to accomplish and then I do it for him. Keep in mind, if it’s an issue, just like a game level, I help him overcome the task and give him back the controller to finish the rest.

I give him the exact amount of help necessary to over come the obstacle, making sure he understands what happened so that, should he encounter it again, he can over come it himself, and then I go back to what I was doing before.

Helping – Just the right amount

Your children are going to learn all about failure. Failing is a part of life. You can’t just let them fail at everything they do so that they become stronger but you also can’t protect them from failure for ever either.

Also, if you want your children to help people later in life, you’re going to have to show them how to help. And your children do learn it.

If you do it all for them, the only thing they’ve learned is to keep asking for help… in everything they do.

Not all of us are video game players, but we all have the capacity to help out… thinking about it in terms of those Mario games helped me to strategize and put into practice the way that I can help my children in all things.

Obviously, not all situations will be that simple but I think it makes for a good base for how I approach most situations where my boys need my help.

Do you try to balance how much you help? Do you know parents that over or under do it?

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Loving Lampposts: Living Autistic – This is why you must watch this documentary

By on April 28, 2011 in Autism, Autism Review

If you’ve seen the HBO movie Temple Grandin, based on the woman of the same name, you probably came away quite enlightened. Even “experts” could watch that film and come away feeling like they have a new, or at least enriched, way of looking at Autism.

Any new insight you could gain from that film will seem pale in comparison to what you’ll get from the latest documentary on Autism called Loving Lampposts: Living Autistic.

Overview

Loving Lampposts: Living Autistic

Of all the controversies or issues dividing the Autism community, they all boil down to two larger groups. Those that feel that Autism needs to be cured and those that feel that Autism, while a cause for struggle sometimes, is a part of who Autistics are.

Loving Lampposts opens and closes with Sam, an adorable little boy that visits his favourite lampposts in his favourite park every single day. The story in between is a journey taken by Sam’s father, Todd Drezner, in an effort to talk to parents, experts and people with Autism themselves and find out what Autism really is and should it be cured or embraced?

I don’t want to spoil it too much for you but chances are you will enjoy this movie no matter which group you may find yourself in. For the most part, half of the film is talking about curing Autism while the other half is about embracing it but at no point do you ever feel like there’s a break in the flow nor is there anyone trying to convince you to change your opinion.

Curing the Autism Epidemic

In the film, you’ll be introduced to several doctors from Defeat Autism Now (name has recently been changed to the Autism Research Institute) as well as many parents, including Jenny McCarthy, who believe that vaccines and other toxins are responsible for Autism in our children.

Also, along the way, you’ll be introduced to a lot of treatments that they use in treating their children.

Also discussed is the word epidemic and how it’s used in relation to Autism. In this portion of the movie, there’s a really great reference to the FedEx logo, that I feel, is a wonderful eye opener. I’m sure you’ll agree when you see it.

Neurodiversity – Just a Different Way of Being

You’ll also be introduced to several doctors and parents that feel that Autism may or may not be medical, may or may not be psychological… they don’t know.

What they do know is that, and I quote from the movie “I’ve never met one Autistic person I didn’t think was a beautiful person.. just has such a beautiful soul.”

Furthermore, you’ll be introduced to several people with Autism themselves, some are verbal and some are not, they are all different but you will hear from them all. Whether speaking to you or using a device that speaks for them, they share their frustrations and their thoughts on Autism, cures, neurodiversity and more.

Summary

If the Temple Grandin movie enlightened you, then Loving Lampposts: Living Autistic will give you far more insight into Autism and the Autism community than you had previously, no matter who you are.

Even the most seasoned Autism advocates may list off all of the things they have already heard before but will still come away from this movie with a broader sense of understanding.

In the end, as the film closes with Sam visiting his favourite lampposts, you get a very real sense of just how much his father has learned from this journey, not just about Autism, but his own son as well.

And with this film, he brings you on that journey so that you too, can learn the same thing for yourself. And you will.

Buy it

Want to buy the movie? Want to get a discount?

From now until May 28, 2011, you can get $3 OFF the Loving Lampposts DVD by entering coupon code: lamppost

Go here to buy the movie now!

Quotes from the Film

Autism is a gift, disguised as a dilemma. – Sharisa Kochmeister (a nonverbal adult with Autism)

They tell me that Sam’s love of lampposts is Autistics behavior and that I should try to get rid of it. I can only say that love is not what makes us sick. It is, we’ve always been told, what makes us human. – Todd Drezner (film maker)

You haven’t got a big enough imagination for what your child could become – Johnny Seitz (adult with Autism)

There is an tremendous amount of emotional power connected with the idea of doing something, of acting. – Roy Richard Grinker (Author of Unstrange Minds)

We’re primed to see Autism more than ever before and despite all the negative hype, this may actually be good news. – Todd Drezner

I think some of the key aspects, what we would today term, as an intensive home based, early intervention program emphasizing music, movement, sensory integration, narration and imitation. They started to imitate me and once they did that, I became aware of them in my environment. – Stephen Shore

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Quantifying Friendship

By on March 28, 2011 in Autism, Parenting

I pick up my younger daughter and her classmate from their school each afternoon.

We drive to oldest daughter’s school in the next suburb and collect her.

Each afternoon follows a set pattern, pick up two, and drive the same roads, park in the same place. Walk to the others classroom, play the same games, bell rings. Leave with three. Get in car in same order, drive same route, and offer the same snacks.

Three children on the autism spectrum, I try to minimize changes in routine, avoid conflict.

Each afternoon the conversation follows the same route. Topics dictated by the landscape we drive through. Street signs, letter boxes and houses the visual route markers to our verbal dialogue.

We drive out of the first school, the two clamouring for snack. As we approach the T intersection the ‘bad thing about today’ is revealed – a child roaring like a dinosaur, the teacher changing the actions to a song.

As we pass the swimming school the two begin to talk about ‘my best day’, seeing a snail in gardening class, playing a with favourite toy.

While I wait to turn into the other schools car park, both voices in the back seat express concern over what will happen if we park in a different place.   On good days we get our special parking space, on the rare bad day I spend a few minutes reassuring them it is okay to park in a different place.

We walk into the other school, they both bolt for the playground, I follow, we play the same game, the climbing equipment is the boat, and the ground is the sea. I am the shark, squeals of feigned terror as the shark approaches, giggles of delight as they escape the shark.

The bell rings, two sets of hands reach up and cover two sets of ears, two voice exclaim ‘too loud’.

Then the rush of children out the classroom doors, loud joyful noise as they escape the school room again. We wait, oldest daughter is always the last out, organisation is a challenge, easier to wait until her classmates are outside and the room is quiet, and then she can think, remember what needs to be packed to come home.

Finally we are on our way again, three in the car. Slowly we exit the busy car park, all three voices talking about their day, all three demanding that the others be quite and listen.  We turn the corner towards the train tunnel, oldest recounts why she has named it ‘The Echo Tunnel’.

Another corner, as always this corner turns the conversation towards fairies, what attracts fairies, what repels, where to look for them. Every afternoon the conversation follows the same route. Topics dictated by the landscape we drive through. Street signs, letter boxes and houses the visual route markers to our verbal dialogue.

As we approach the duck pond my heart sinks in anticipation, a corner is turned, the yellow sign with Mama Duck and two baby ducks is passed “Excuse me, are we friends?” the question is asked.

Oldest daughter replies “No. You are my sister’s friend.”

Younger sister answers “You mine friend.”

Classmate responds in matter fact voice “oh. Okay then.”

Each day I insert my social story voice into their conversation “It is okay to be friends with more than one person. Your sisters’ friend can be your friend too.”

We drive under another bridge, I’m ignored as always, conversation turns to invitations to come over and play, lets hunt fairies in the garden.  As we pull into classmates drive way I’m besieged by petitions to please can we stay, please can we play.

Weeks turn to months, every afternoon the conversation follows the same route. Topics dictated by the landscape we drive through. Street signs, letter boxes and houses the visual route markers to our verbal dialogue.

Then one day, we approach the duck pond. My heart sinks, the questions is asked “Excuse me, are we friends?”

And there is a pause, I slow down, ears alert at this change.

Youngest daughter answers “You mine friend.”

The two turn to oldest daughter, she has not spoken, she is thinking, I hold myself silent, hoping for change.

“I think we are” she says “You believe fairies and so do I, you have a little sister with autism and so do I… is that enough things to make us friends?”

He listens quietly, seriously and after due thought he responds “I think maybe we need more things.”

We go under the bridge but the conversation does not change. Something new is blooming here on our drive home.

All three are silent, thinking.  “How about ten things, if we have ten things that are the same, would that make us friends?” oldest daughter asks.

“Yes, it would, ten things is good” he answers

And a rising babble of voices explodes as the three work out ten things that are the same.

Every afternoon the conversation still follows the same route. Topics dictated by the landscape we drive through. Street signs, letter boxes and houses the visual route markers to our verbal dialogue.  As we pass the duck pond the same question “Excuse me, are we friends?” But now we have a different answer, a list of ten ways they are the same, ten things to make a friendship.

 

 

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Life is the key to decyphering Autism

By on January 26, 2011 in Autism, Autism Communication

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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