Archive | May, 2010

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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How Did You Know Your Child Was Autistic?

By on May 21, 2010 in Diagnosing Autism

We get this question a lot, which is wonderful. It means that people are interested in knowing what to look for and ultimately, that’s what ‘awareness’ is all about. I’ve said it before and I’ll say it a million times, the only person who can diagnose your child is you. It’s up to you to recognize the signs and then and only then will your child have a chance at getting an official diagnosis and then the help that they need.

Autism signs are tricky because on the surface, they seem like childhood quirks… funny little things that some children do. However, if you add up all the signs… you may come to realize that they’re not quirks at all… especially if they persist longer than just a typical ‘phase’ should.

Since all children tend to exhibit different signs, or sets of signs, you can’t really go by my list as an exact set of signs to look for but it should give you a pretty good idea.

First was something we thought was natural, and I guess it still is. But now we realize he liked it a little too much, and that is swaddling. The idea is that the child feels held and confined as they did in the womb. That it comforts them and keeps them warm. Many babies love it, some do not. It doesn’t hurt them, or have any ill effects. However, in our case, Cameron seemed to like it a little too much and for too long. We, of course, never questioned it. It wasn’t even considered a sign… but looking back, I think it truly was our first sign… and it came at a very early age.

From the moment Cameron was able to sit up on his own, we’d catch him moving his toys from one side of his body, to the other and back again. This would happen for hours. Rather than play with a car, or flip things or examine them… he would simply move them from his left, to his right, one at a time. If he had 5 cars, he’d move them individually to his left side… then once all 5 were there, he’d move them individually to his right.

Eventually this turned to blocks where he’d position himself into a pile of blocks and then move them all to one side of his body. Then, individually, he’d move them all to the other side yet again. For a while, he’d even separate the blocks by colour! He’d end up with 3 or 4 piles of blocks all around him, separated by colour! We thought he was a child prodigy, doing this before he was 1.

After a while, he singled out the purple blocks as his favourite. He would actually dig through a pile of blocks in search of the rare purple ones. We just assumed that purple was his favourite colour.

Soon he moved on to cars where he’d pass them in front of his face, doing his ‘Practising Thai Chi‘ moves. If the car was big enough, he’d much rather flip it over onto it’s back and sit for hours spinning the tires, or even spinning the entire car around. Friends bought him big Tonka trucks, he found the wheels the most exciting, spinning them for hours. We got him a wagon, he’d flip it over and spin the wheels.

For the first 8 months, people thought we had the best baby ever. He never made a sound, never cried. In fact, we had to keep our baby monitors at full volume because when he woke up, he didn’t make a peep. No crying, no nothing. He even made a rather huge mess in his diaper one time and no complaining. He could be hungry, tired, waking up… it made no difference. As a newborn, he’d wake up every 3 hours for feedings in the middle of the night. Think he cried? No, I had to listen for small foot and hand movements.

This brings us to his first birthday where we were really hoping we could get him to dig into a chocolate cake and make a huge mess and get some great pictures. The problem? Cameron hated to be dirty! He didn’t really want to touch it and didn’t like having his hands covered in anything. So we put his hands into the cake for the sake of the pictures and he didn’t get upset but he sure wasn’t happy. We had no idea why.

After, we were hoping for his first word to come at any time but we waited and waited…. and waited. He was finding alternate ways of communicating instead, such as bringing us his cup, pointing at what he wanted and ‘humming’ to indicate he was hungry. It was a very distinct kind of hum, which many family members found funny and often imitated.

For a while, in between 1 and 2, we would find Cameron lining up all his toy cars or trains into a perfect circle around the living room, or making perfectly straight lines. I mean, not exactly perfect but way better than a 1 year old should be doing. He didn’t even know his shapes yet but he was doing this with some crazy precision. He would even go back to adjust some toys to make sure they lined up just right. Again, we were so impressed and thought he was brilliant.

As Cameron‘s second birthday approached, he became more and more secluded, shying away from hugs and kisses. He was also less willing to play with friends or even with us… being quite happy with just doing things on his own off in a corner somewhere.

From the day Cameron was off of baby food, he was a vegetarian… not by our choice, but his. He absolutely refused to eat any meat, even before having tried a bite. The same is true for fast food. He has yet to try a french fry or pizza. He simply knew, even at that young of an age, that he did not want anything to do with any of it. His diet has always been extremely limited by his own choice and no amount of forcing can make him eat the things he doesn’t want to eat. Eventually he even stopped drinking milk on his own, but he loves soya milk… especially the chocolate.

It turns out that even at the age of 1, he knew that the GFCF Diet was what was best for him. Some say that those proteins can act like a drug in Autistic children, much like heroin acts in adults. So at some point, he decided he didn’t like that feeling and just stopped eating the things that gave him those feelings. Even to this day, some ‘scientists’ are saying that the diet really doesn’t help and in some cases, it’s true. But it made a huge difference for us once we cut out bread and other wheat products from his diet. He knew before we did. Read the comments, you’ll see that parents don’t agree with every ‘study’ that comes out.

Finally, the biggest of them all is repetition and routine.  All of these things can be viewed as just quirks that kids have but these things lasted months, years…. still happening! And routine is huge as well, because all children need routine but Autistic children especially. The best example I can give is when we had to change our clocks for daylight savings time and Cameron‘s bed time was an hour later. He wanted to go to bed at exactly the time he knew it was bed time and not a minute later, much less an hour. He was 1, he couldn’t tell time. But he was so set in his routine that when we said no… it’s not bed time yet, he literally hit the floor in the middle of the living room and through a tantrum. He was so upset that we were breaking his routine.

It’s a lot to take in, there are a ton of signs. Chances are, if your child is Autistic, you may recognize some of these, all of these and maybe even some signs that I haven’t mentioned.

Recognizing Autism is not easy…. it’s particularly not easy if it’s not your child and this is why I say, only you (as the parent) can make that first diagnosis.  You’d be very lucky if someone else recognizes it before you… either that, or you weren’t looking for it.

The sooner you can get that diagnosis and start getting the help you need, the better the life your child will have later. So do not put it off, do not dismiss signs. Who knows, maybe they are just quirks in your child, but if not, you owe it to them and to yourself to be sure.

I can’t emphasize it enough, do not let anyone convince you that “it’s nothing” or “sometimes they just talk later” or “it’s just something cute he/she does” because it’s not their decision, it’s not their child. We heard it all from a lot of people, even our own family doctor… he told us he thought Cameron was fine, going for a diagnosis is a waste of time. You MUST LISTEN TO YOUR INSTINCTS. If you read any of what I said here and think it sounds familiar, get your child looked at. Don’t be afraid of the doctors being wrong, don’t be afraid of what it might mean… just get it done.

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The Lessons We Learn the Hard Way

By on May 20, 2010 in Autism

Parenting is one of those things where you can’t help but share your experiences and insights with other parents, especially if they’re new parents. It’s one of those things where, even when you know you shouldn’t, you still speak up when you see them doing something you don’t agree with. It’s one of those things where, when you take care of their child, you ‘sneak’ in some of your own brand of parenting because you think they’ll be better for it. It’s… well, it’s really quite invasive, isn’t it??

We all do it and we all mean well, it’s always done with the kindest heart, even when you just want to scream at them to just shut up… please just shut up! But you don’t, because you know they’re not wrong, and they’re just trying to help… it’s just that, they don’t know your child as well as you do and their methods, although they may not be wrong, may be a bit dated.

Let’s take grandparents as an example because I think we can all agree that they can be some of the worst in this department. They raised you and you turned out just fine, right?  And they are a great source of wisdom, so it’s only natural they’d have the most to ‘share’ with you.

But sometimes, it can be a bit much for the young parents who just want to do things for themselves, right or wrong… they need to be their own kind of parent, not someone else’s.

Now, this brings me to Autism… let’s face it, even if they had an Autistic child, they didn’t have yours… and they’re all different. But chances are, they didn’t. And they haven’t done all the research you have nor spent the same amount of time with your child as you have and therefore, they keep giving their same old advice and it really doesn’t even come close to applying to your situation now. But they still mean well and you still listen with a smile knowing full well that you can’t do what they did.

What I am trying to say is that it’s up to you to educate, even the most stubborn “I did it and I know what I’m talking about” kind of advice giver… you can’t just smile and nod because they don’t know. They don’t understand. They haven’t been in your shoes.

I’d like to share with you one example where we didn’t educate enough, we didn’t make ourselves clear enough or… we simply never would have been able to but after the deed was done, the lesson was definitely learned.

We took my wife’s mother with us to a pasta restaurant where we knew full well that our choices would be extremely limited since Cameron (my son) is on a strict gluten free diet. We got him some pasta but never intended for him to eat much of it. Just a little… and we’d pad that with other food, even deserts if we had to.

Well, being a good grandmother, she disagreed with filling a child with deserts or ‘other food’… she knew full well that he was on the diet, and knew fell well that we’d object. However, she didn’t know just what the gluten did to him. She didn’t understand the full extent of his condition. As I said, we tried to explain but really, who believes that a little pasta will set off a child like a grown man on heroine?

So, as my wife and I went off in search of food for him (at a buffet), Cameron’s grandmother took it upon herself to feed him some more of his supper before we got back. As I said earlier, she wasn’t really wrong in doing it… it’s what I would expect a grandmother to do. However, as I also said, in the case of Autism… we failed in educating her properly.

We got back to our table and protested what she did, she argued that he’d be fine… damage was done, what can we do.

So we returned home afterwards where the monster quickly revealed itself… and when I say monster, I mean it. He was screaming, going wild, jumping off of furniture… to say he was bouncing off the walls is quite a literal expression. He actually got a big bruise under his chin from hitting a wall… under his chin!!

He finally went to sleep some time after midnight (his bed time is 7pm) and woke up very sluggish, very slow and proceeded to spend the entire day on the couch, in a ball, rocking back and forth apologizing to us, telling us he loves it, saying sorry…  just, so secluded, so alone.

I swear to you, it was like watching a drug addict go from a major high to a very extreme low and it all happened so very fast. Even other family members that were around that day or the day after commented on how bizarre he was acting, how different he was. They were shocked that a few bites of pasta would cause such a huge change in him.

His grandmother felt terrible (I really hope she doesn’t mind me sharing this story) and she realized then and there that despite her good intentions, she really needs to take what we say seriously. That when we say he has extremely bad reactions to gluten, we mean it.

It’s a lesson I wish we could make really clear to those around us without them having to see it first hand… but I have yet to find what works. Parents are proud people and they raised children successfully. Plus, Autism is still very foreign to many people, especially older people. To some people, they just see wild, disobedient children and some even go so far as to dismiss Autism entirely… they figure it’s just the parent’s fault these days.

What ever the case, it’s hard to convince more experienced parents that they really don’t know better than you. But for your sake, for your child’s sake, you have to.  Don’t wait until they learn the lesson the hard way. Sit them down, show them videos, show them information, make them understand.

You have to prepare your child for the world as best you can but you also have to prepare the world for your child.

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Searching For A Reason, For Something to Blame

By on May 19, 2010 in Diagnosing Autism

I’ve been doing a lot of reading lately on all of the various possible causes of Autism and it got me to thinking… we really have no clue! I am no doctor and certainly not a scientist but let me give you a rundown of a few things that I have read, and a few things I know.

Possible causes have been tracked down to genetics, birth defects, gastrointestinal tract problems, vaccines, viruses, pollution… ok, I can’t list them all or you may be here reading all day. A little more specifics, they tracked down a rather high rate of Autism in a small town down wind of a sunglasses factory where the pollution was heavy. They have discovered that Autism happens more frequently in boys, especially if they have an older sibling with Autism. They’ve discovered that more people with certain viruses get Autism and of course, vaccines.

Here’s what I know, some children have Autism despite no family history of it, no pollution, their country doesn’t get vaccines and they didn’t catch the same viruses. So… what caused it?

The organization that wrote the main article accusing vaccines has since retracted their findings, one organization in Europe actually found that children with vaccines had less cases of Autism than those without!

What this all means is that if your child has Autism, it’s perfectly natural and quite alright to want to find out why. It’s perfectly natural to blame yourself, someone else… to spend all of your time and energy looking for a reason.

However, unless you are a doctor or a scientist and even then, a very very good one… your time and energy can probably be better spent elsewhere, like learning how to help your child through it.

Since Cameron was diagnosed, we’ve had a lot of questions from a lot of people and I think it’s safe to say that the majority of them have been about vaccines and what we think caused the Autism. People asked if we were still going to get our second child vaccinated…  we did. They asked about our family history, if we thought something went wrong somewhere. They still ask us why there’s more kids with Autism today than before, what we think causes it, what we think about vaccines and diets.

Superman has villains, your child does not.

Denial, anger, shock, self doubt… I went through them, every parent does. If they don’t, they’re not human. But sooner or later you’ll have to accept it. If you don’t, you’ll eventually find that you’re focus hasn’t been where it should have been and for that, you’ll have only yourself to blame… and that brings with it a whole new circle of grief cycles.

Your child doesn’t care what caused it, you do. You finding something to blame is for your own self satisfaction because if you have something to blame, you can feel that it’s not yours nor your child’s fault… even though you already know that.

Put down the lab coat and find out what you can do moving forward. Your child will appreciate it much more.

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How Do You Teach a Four Year Old to Calm Down?

By on May 18, 2010 in Autism

I think anyone who knows an Autistic person can tell you just how crazy they can get when dealing with negative emotions, especially when they’re outright angry. My son was no exception, becoming quite scary with rage… wanting to hit, kick, throw things… he would just throw himself to the ground and scream with rage for hours.

Time outs helped a little as he’d have nothing to do but sit by himself and calm down but ultimately it didn’t really calm him down enough. What were we going to do? Give him a 2 hour time out? A few minutes here and there simply was not enough to come down from that much anger.

For Christmas, we bought Cameron the new Super Mario Bros Wii game which he loved the moment he laid eyes on it. However, it brought out the beast in him every time we told him it was time to turn it off. It was the worst we had seen from him, you wouldn’t know that Cameron was in that wild little boy at all… it was like watching a tame dog turn rabid.

The first thing we did, which was also the easiest, was the time out method… which ultimately lead to sending him to bed. If a 5 minute time out doesn’t even take a little of the edge off, then he’d just be sent to bed until either he fell asleep from exhaustion or he finally did get it out of his system.

This wasn’t really a solution and within a month or so, it was already proving to be a failure. He wasn’t getting over it, he wasn’t going to sleep. I had to take a more hands on approach which meant fighting my own overwhelming desire to become enraged like he was. I won’t deny it, I’m only human. And even when you know that it’s primarily the Autism at the heart of it, you still can become very easily angered  when your child is going off on a completely wild tantrum. And having to deal with it head on was going to be a really big challenge for me, as well as for him.

After a couple of months of trying our very best to deal with the tantrums as we were told to do, I instead started following him into the bedroom where I would literally hold him down on his bed… now, if you can imagine this, he would be wailing, kicking, screaming, red faced… letting out a ton of rage all in one shot….  and I would be there, holding him down and talking calmly to him the entire time, trying to reason with him.

I think, at first, he didn’t hear a word I said and rather just knew that I was holding him down against his will. It probably only angered him more, especially since Autistics don’t like to be held in the first place. But over the course of a couple of weeks, he began to realize that he wasn’t stronger, he wasn’t getting out and even though he was still angry, he was starting to hear my voice. Maybe not the things I said, but he could tell that despite everything, I was calm. And it was hard, I couldn’t just fake it… I truly had to be calm, despite being angry myself.

I decided to use that in my bit of reasoning, once I knew I was starting to get his attention through it all, I explained to him that I was angry that he was acting like that… that I know he’s better than that. I explained to him that even though I am angry, I’m staying calm because being angry only hurts yourself and others.

I don’t think it mattered much… at first. But again, a couple weeks of this and he started to actually answer me when I asked if he understood what I meant. Keep in mind, he was only 4 at this time… and I’m talking to him like he’s a teenager who gets into fights at school… but I had to try anyway, I knew I could make him understand.

So again, a couple of weeks keep clocking by and I’m only holding him down for a few minutes at a time and then we’re just sitting on the bed talking… I start getting more answers, I start getting more understanding. I ask him if he knows that I’m angry and he says yes. I ask him if I am staying calm and he says yes. I ask him if he’s staying calm and he says no. I explain to him that the hardest thing he may ever have to do is stay calm even when he’s really really really angry and he looks at me… calmly.

Eventually his temper tantrums turn into him screaming at me “No, I don’t want to stay calm!” Frustrating, but he’s getting it! This was my sign that he was learning what it was that helped him to calm himself… to break the rage. And that rage did get broken, in shorter and shorter time.

Come April, a solid 4 months after getting that Christmas present that he loved so much, he was finally turning the game off when asked to, peacefully, quietly, on his own. I don’t think anyone ever thought it would be possible, and certainly not in just 4 months time, however he had beaten the odds and figured out how to stay calm in the face of uncontrollable anger.

He still gets angry sometimes when he’s asked to turn it off, but it doesn’t last too long. He still loses control sometimes but he now knows that he can get it back again.  I know full well that this is something he’ll never truly master, most people with a bad temper never really do but it is something that is manageable. Not every Autistic child is that lucky though, there is simply no way to get to that point.

If anything though, you have to try. Don’t just give your child a time out, send them to bed, hand them off to someone else to deal with… you have to step up your game. You are not just A parent, you are THE parent. Stop listening to how your parents parented, how your aunts, uncles, grandparents or anyone else did it. Their methods were their methods, not yours. In fact, I’m saying that even though I outlined what I did, that may not be your answer. You have to do what you have to do to get through to your child because maybe… just maybe… there’s a way to break through the rage. Maybe, just maybe, there’s a way that they can learn from you, feed from you, grow from you…. maybe they can beat this.

But it won’t be easy and it won’t be over night. It may not be possible at all but even if it takes you a year, 2 years, 20 years to find out that it’s not possible at all, you have to keep trying. One day you may find it, one day your child may surprise you.

I couldn’t be prouder every time my son turns off Mario and walks away and someone in my family says “I never thought I’d see the day.”

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