Bad Behavior You Say? I Say, Be Thankful!

By on May 27, 2010 in Autism

Recently my son has taken to calling other people names, this type of behaviour is rather normal for all children really. They pick it up from movies, television, other children and really, anyone. Ever called your table stupid after you stubbed your toe on it? Children pick it up quickly.

We’ve tried to keep on top of that with Cameron, explaining to him how it is rude, not nice, hurts people… and so forth. He understands but it’s an emotional response so really, it’s just a matter of getting through it with him. In time, he’ll dial it down, I’m sure… I hope.

We moved a couple of months ago and so he was put onto a new bus, he rides on a special needs bus with a bus driver and another lady who talks to them, tells stories and so forth… a helper. So these were new people to Cameron added on to the fact that he didn’t want to be on a bus that was different from what he had come to accept as part of his regular routine.

As part of that old routine, Cameron used to fall asleep on the bus ride home from school, recharging his batteries for more play time at home, but on this new bus, the helper lady constantly tried to talk to him, interact with him… ultimately, annoy him.

The tension escalated until Cameron began calling her names, such as stupid and dumb… and screaming at her. The bus driver was not happy and told us, the parents, before going to file a report. Three reports and he is removed from the bus.

I can not begin to explain my confusion and frustration. This is a school bus for special needs children and him calling the lady stupid will have him removed?? I understand that it’s not exactly great that he does it but he’s a 4 year old with Autism.

I took a moment with the bus driver and explained myself, Cameron and the situation… it went something like this:

“Look, I’m not happy that he’s calling anyone names or saying hurtful things, but you have to understand that 1.5 years ago, he had yet to say his first word and we were told that he might not say anything for years. On top of that, many Autistic children are outright violent, even if not provoked. So yes, I wish he didn’t say mean things but to be speaking at all, and to be lashing out with words rather than fists… it’s a huge blessing to me! I still need to learn how to help him reel the things he says back in but in all honesty, I’m thankful that he’s capable of expressing himself.

I will work with him on stopping the name calling, but in the meantime, just leave him alone. If you continue to get in his space when all he wants to do is zone out, or sleep, then I can’t really blame him for lashing out like that. Just don’t give him any attention at that time of day unless he asks you and I’m sure you’ll be just fine.”

And sure enough, I haven’t heard a word about it again since. But that doesn’t mean I won’t bring it up again. This is supposed to be an environment that is supportive and understanding.. that little blue wheelchair symbol is on the side of the bus for a reason. I understand that they may not have formal training because they’re just driving a bus but that’s still no excuse.

If my child starts hitting you in the face while you’re trying to drive the bus, then yes… we have a problem. But if you get in his face and he calls you a name, I’m sorry, but I can’t be anything but thankful that he’s at the level he is. Because the alternative is a whole lot scarier.

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Educating The Educators

By on May 26, 2010 in Autism

The title sounds a bit harsh, I don’t mean to undermine the experts, doctors or teachers… but I do want to emphasize one thing rather clearly, you know your child better than they do. They know generalities, sciences and the history more than you do but they don’t know your child. This means that in some cases, you do know better and in some cases, you need to explain some things.

I would like to give an example and I hope I don’t offend anyone, they did nothing wrong, it’s just that this was a situation where we, as the parents, had to step in and explain how our child was unique.

We are very fortunate to have found an extremely wonderful school for our son, where the entire bottom floor is dedicated to Autistic children. This means that different rules apply there, such as peanuts… they’re allowed on that floor, since many children have special diets and in some cases, some nuts are actually therapeutic.  We sold our house at a moment’s notice, moved over 8 hours away and had some rough times but we were determined to make sure that our son was in this school and it turned out to be a great decision.

At the age of 4, Cameron had his first full year in school where he had one teacher, 4 teacher’s aids and all the other children were also Autistic. The number of students varied through out the year but generally it was around 7 or 8. So imagine, 4 aids to 8 children plus a teacher as well. This was perfect for our son.

Prior to his schooling, we had worked very hard with Cameron to develop his speaking and education at home… when he visited his first class room, he could already count to 40 and recite his alphabet just fine. Not astounding but for an Autistic child who hadn’t said his first word by 2.5 years old, we were happy with his progress.

The problem came when his teacher and instructors were also impressed with his progress… in fact, too impressed.

For the first few months, a gradual change grew in Cameron as he’d become more and more disobedient, more prone to screaming, more violent… it just got worse and worse and we feared that he wasn’t settling into school, he was becoming less content with it.

We had been trying to talk to Cameron about what was bothering him, what was wrong but getting any child to volunteer information is rough, especially an Autistic child. Basically what it amounted to was us guessing at every possible situation and scenario we could possibly imagine until we hit it… and after several months, we did. His trigger word was “safe”.

What it boiled down to was his sense of feeling safe… once we hit the trigger word, he opened up and told us that “they don’t keep me safe” which meant, they didn’t make him feel safe.

My wife and I visited briefly one morning with his teacher who was completely understanding about it but it wasn’t until I had, in just a few minutes time, a chance to observe what was happening.

As we stood there, Cameron took one of those wooden animal puzzle boards and began placing the pieces as another little boy walked over, dumped it all out, walked to another child, knocked over their blocks, walked to another child…. and basically just disrupted everything.

No one had noticed this except for me, and no one would have ever known because Cameron just picked it back up and started over.

But what was happening was that he felt violated, unsafe… and would come home where the emotions would boil to the surface.

We discovered that, because Cameron seemingly took everything in stride and never complained about these things, the teachers and aids would either not notice, or remove the disruptive child from the situation… leaving Cameron there to be by himself, feeling quite alone, quite unsafe.

We never would have ever known without having been there for those few minutes to talk to his teacher but it all became quite clear.

After talking to them about it, they admitted that he seemed “too high functioning” to be thought of as having any problems like that. That he was so well behaved that they never imagined that he was having those feelings. And how could they? He didn’t demonstrate any problems until he got home.

Following that moment, we saw another huge change in Cameron… he settled back down, he became the happy and content child we had known previously. He felt safe again.  His teachers began to pay him more attention in those situations, to remove him from the scene (from the danger) and to make sure to always keep telling him how they’ll keep him safe.

We’ve had no problem since and the year is almost over.

Again, we’re very lucky to have found such a wonderful school for him, and we’re lucky to have such great people with him that will take our input, to not be offended that we step in like that, that do their very best in what must be an extremely difficult situation.

Personally, I couldn’t imagine what it must take to be facing many Autistic children every day, of varying levels of severity and to not only manage, to not only take care of them all but to teach them daily. It’s a huge task and one I am sure I could never do.

But despite all that, they still need the parent’s help sometimes.  They know it, I know it. It’s important that every parent knows it. Handing off your child and thinking that you finally get a break is not an option if you want what’s best for your child.

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Triggers – The Good, The Bad, The Ugly

By on May 25, 2010 in Autism

In Autism, there are a lot of different triggers and even different types of triggers. At the core, a trigger is something that sets the Autism off. In some cases, it may be what initially brings the Autism to light, or… ’causes’ it in children. In other cases, it may be just what sends a child into a furious tantrum. There are also good triggers, which can cause a calming and comforting effect in Autistic people.

Probably the hottest of the heated debate topics is the vaccination trigger. Many parents witness first hand their child’s descent into Autism shortly after getting their MMR vaccinations…. going from a loving and talkative child into a shell of a child that can not speak, make eye contact or play normally. This issue is probably the one hot button topics which actually brings parents into the violent, out of control monsters that they so desperately fight every day to keep their children from becoming. It’s primarily due to large pharmaceutical companies having a hand in making sure that people keep paying for those vaccinations and lining their own pockets. Whether that’s true or not is not really my concern, I’m not here to settle any debates for you. I’m just running down a list of triggers, in this case, the ugly. Not just because of what many people say it can do but because of what it brings parents to do. I’ve even been silenced on one popular Autism website simply because I question both sides, rather than say what they want to hear.

Another hot button topic is the GF/CF diet which doesn’t really bring out the monster in most parents, as I think it’s safe to say that most parents agree that either it works, or simply doesn’t work in their case. Basically, in this case, the gluten/casein can trigger a drug like effect in the brain and send your child into a very disruptive, very violent state of confusion and disobedience. It’s definitely high on the bad scale of triggers.

However, not all triggers have to be bad and that’s the point I’d like to make in this post… there are counter triggers, the good side which can not be ignored. The problem is, they can be harder to find.  I’d like to give you a couple of examples and then give you a very real example from this last week-end.

Many people have said that horses can be very therapeutic towards coping with Autism, in fact, can snap them right out of it while riding. There are even some ‘camps’ set up where Autistic children can spend some time with the horses and learn to ride.  Whether it’s a bond with the animal, the motion of the riding, the feeling of the ride… no one can say for sure, but it’s widely regarded as a great trigger for handling the overwhelming nature of Autism.

If you’ve had a chance to see the Temple Grandin movie, you will recognize the squeeze machine. Temple Grandin, after witnessing a similar device used on cows, created her own device which would simulate a hug without the need to touch anyone. She would use this to calm herself, to steady herself and to handle extremely tense and overwhelming situations.  She has gone on to do studies and found that it works for most people, not all, but most… Autistic or not.

As for this week-end, I’ve come to realize that my son has his own good triggers. First, we took Cameron to visit some family that live on a lake. The moment we got out of our vehicle, Cameron began begging to go for a boat ride. When I say beg, I mean he really begged. Unfortunately, that wasn’t the plan so it didn’t happen until after dinner…. however, it kept him happy just knowing it was there. After we all ate, he got his chance at a boat ride.

He sat down in the boat, excited and eager… as the boat pulled away from the dock and slowly made it’s way into the lake, Cameron turned to his mother and said “ok mom, we can go home now.” It wasn’t that he was scared, it wasn’t that he wanted the ride to end… it was that he was content, 100%, totally, completely… content.  It was as if I had been starving, spent an hour at a buffet and said “ok, I’m done, I can go home now.”

Then we took Cameron swimming, shortly after getting home afterwards, Cameron put his hand on my cheek and said “Dad, you’re my best friend ever”… then the next day, while swimming again, he came over to me and gave me a kiss on my cheek.

I don’t know if you could fully ever understand the depth of that without having an Autistic child yourself, and if you do have an Autistic child… you would surely agree, getting that kind of voluntary, unexpected and completely random positive emotion out of an Autistic child is truly wonderful.

You must look for these times, these triggers, these moments because as important as it is to know what the bad triggers are, it’s equally important to know what the good triggers are. I really don’t want my son to go through the hard times and so I shield him, but I can’t shield him from everything all the time no matter how hard I try.

Ultimately, shielding is good, but limiting. It doesn’t bring happiness, it doesn’t bring contentment, it doesn’t bring all the good things.. it just prevents the bad things. And while important, it won’t get you the hugs, kisses or admissions of being your best friend.

Find those good triggers, find those few things that will make your child truly happy. They may be more rare than they should be but they’re out there… and when your child swims over and gives you a totally random kiss on the cheek after years of rarely getting so much as a hug….  it’ll all be worth it.

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How Quick We Are to Judge

By on May 24, 2010 in Autism

I think it’s safe to say that if not all, then very close to all, parents of Autistic children have had to endure the comments, looks and judgments from others while our child throws him/herself into a fit of rage, screams at the top of their lungs and/or starts to get violent. It can happen at the most opportune times such as at restaurants, grocery stores, play centres and well, really, anywhere.

We have all had that moment where we look at the person judging us and debated within ourselves whether or not they warrant an explanation or if we’ll just leave it be and not give them the time of day. It’s hard enough to deal with all by itself without the mumblings, judgements… comments.

Something happened to me just yesterday, which actually had nothing to do with Autism but it really made it very very clear just how quick we are to judge.

My wife frequents a message board with other moms where one lady had just recently lost her child and that mother had asked that anyone who may be going to be a beach, to write the child’s name in the sand and take a picture. It just so happened that we were going to the beach so this was certainly something we could do for her.

We had a great day and prepared to leave but realized that we had forgotten to take the picture so I raced back to the water’s edge and wrote the boy’s name and proceeded to get pictures. But I wanted pictures that captured the moment so I took angles which would capture the water as well, even the other side of the lake, while still being able to read the name.

As I tried for a few angles, I could hear some teenagers in the water swimming and one of them said “uhmm.. why is that guy taking pictures of the water?” to which another replied “I can think of one reason… ‘fruit loop!'”

I dismissed it, no big deal really but after a few more pictures, their attention turned back to me again. “Seriously, what is wrong with that guy?”

Finally, one of them, bless him, said “Uhmm… why don’t you just ask him?”

Well now, there’s a novel thought! I mean, truly brilliant if I must say. If you don’t know why a person is doing something, why not ask?? Hm… nah, that doesn’t make any sense… and so they continue… “He’s just weird!”

So at this point, I spoke up, kind of changing the story a bit as it was none of their business about a poor lady’s loss “Actually, a little boy is very sick and all he asked for was to have someone write his name in the sand on a beach and show him in a picture, ok?”

As I turned and walked away, all I could hear “awww… that’s so sweet” and “oh my God, I feel so bad” and “that’s such a nice thing to do!”

I made sure to leave the name in the sand because it was right where they’d be coming out of the water. They’ll still judge the next person they deem ‘weird’ but maybe, just maybe, they’ll remember back to the day when they called some guy a fruit loop for doing something they didn’t immediately know the purpose of.

As for you… the next time you see a child acting out, being seemingly total out of control, remember that that is exactly what Autism does to a child… remember that, at this point, 1 in 110 children have Autism. How many children are in your city? And most of all, remember… maybe that parent is to blame because maybe the child is not Autistic, but how bad will you feel if it turns out that the parent is on the edge of a cliff emotionally already because of just how hard it is to raise an Autistic child and your judgment, your hateful glance, your comments that you should really keep to yourself…. what if that’s what pushes that parent over the edge?

Don’t roll your eyes, it can happen. It does happen. If you knew that you were going to be told after that that child lost their parent, and are now having to deal with their Autism on their own… would you still be so willing to make that judgment?

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What Is The Gluten Free, Casein Free Diet? Does It Work?

By on May 22, 2010 in General

This probably ranks #2 on the hot topic debates in the Autism community where parents are fighting with the ‘experts’.  Basically that means that there is a whole lot more to this than a simple yes or no answer, there is no black and white here and therefore it causes a lot of tensions.

I’d like to cover this topic in a few areas: what is the diet, what is the theory behind it and will it work.

What is the GF/CF diet?

Breaking it down to it’s simplest form, the gluten is wheat and the casein is dairy.  This isn’t limited to bread and milk however, it covers just about everything you can find in your local grocery store aside from meats and veggies/fruit.  So cereal, pasta, cheese, cake, snacks, waffer cones you hold ice cream in… everything.

Moving to a GF/CF diet can be a rather huge step for the average person as it means no more sandwiches, switching to brown rice pasta and giving up just about everything you eat. No more hamburgers, cakes on your birthday, cookies, grilled cheese, kraft dinner… we’re talking about eliminating just about everything on some people’s regular diet.

In our house, we’ve put our son on soy milk, brown rice pasta, eggs, bananas and peanut butter and a few other things. You learn to find them when you have to. Also, you don’t have to be all that limited if you’re resourceful. There are some great sites around the internet with some absolutely amazing GF/CF recipes and grocery stores are growing their GF/CF sections a lot over the last few years.

The truth of the matter is, gluten is quite bad for you. There’s no healthy reason at all to eat it, it’s simply added to our foods to give it it’s texture, consistency, help preserve it… stuff like that. If everyone ate less gluten, we’d all be healthier so there’s no reason not to give the diet a try. Gluten proteins and Casein proteins are not essential to a healthy diet and therefore there’s not only no risk in being on the diet, it’s actually good for you.

What is the theory behind it?

I don’t think they’ve proven it scientifically, but they have narrowed it down pretty good… the theory is that some Autistic children have a digestive problem where their systems are unable to break down the gluten and casein proteins in their stomachs. This causes them to work through their systems, entering the blood stream and eventually finding their way to the brain where they act like a pretty powerful drug, causing the children to become very hyper, to see things (colours and trails behind moving objects), become irrational, unable to speak, clumsy and so forth. Imagine a grown man tripping out on heroin and you can begin to see similarities in your child after eating some bread.

Will it work?

Well, this is the tricky part and where the heated debates come into play. Even the ‘experts’ can’t agree because they can’t get the same results twice. In this article, you can see that they have concluded that the diet does help and further down the article lists another study where others concluded that it doesn’t: foodconsumer.org

Autism is a pretty tricky condition with seemingly thousands of causes, thousands of differences and thousands of different ways to ease it.  This means that yes, the diet might work… might. However, some Autistic children simply are hyper, clumsy, unable to communicate… that’s how they function and unfortunately, the diet will not change that.

But a lot of times, the diet actually will help and therefore, I really recommend that you at least try it… a week, 2. Try.

In Cameron‘s case, we put him on the diet and saw a difference almost immediately… less repetitive motions, more eye contact, more calm. It was a miracle in our eyes and we never looked back. Our house is almost completely gluten free at this point.

And this is how I know that not all answers are guarantees for everyone. I said we’re almost gluten free, not casein free. People lump the two together but in reality, just as it may or may not work, in our case, it half worked.

Once we removed gluten from Cameron‘s diet, he was instantly a different child. The casein however, made very little difference. If he has too much, it does affect him a little. But for the most part, we can still give him orange cheese, yogurt and ice cream. We keep him on soy milk though.

Conclusion

Don’t listen to experts, don’t listen to parents. The only person you can listen to is your own instincts and your child’s results. There’s no harm in trying the diet, there’s no harm in not trying it. If you do try it, you may see results, you might not.

There’s only one thing I can say to all parents of all Autistic children…. try everything!! If it worked for 1 child out of one million, try it. It might work for you. Try the diet, you don’t have to commit to years of eating food you don’t like. Just try it.

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