Archive | Autism RSS feed for this section

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.

Comments { 0 }

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.”

Comments { 0 }

The Hardest Thing My Son Has To Do is Love

By on May 17, 2010 in Autism

It’s always seemed odd to me that an Autistc child is so prone to letting negative emotions out like a hailstorm but the good emotions so easily get lost, deep and buried behind cold lost eyes. No one seems to be able to provide a solid answer but violence, aggression, outbursts… these are normal and even to be expected from a child with Autism, especially the more severe cases. What’s also to be expected is that the child will likely never want to hug you, kiss you or say ‘I love you.’

Now, for those of you reading that has a child or children, and they’re not Autistic, I want you to imagine what that must be like. No hugs good bye, no kiss goodnight. You say ‘I love you’ over and over again and never get it back. But if you tell them no, they can’t have an electric toy in the bath, they’ll instantly go into a tantrum and try to hit you in the face.

Does that make you feel loved?

That’s what life is like as a parent of an Autistic child. Not every single child, but as a general rule, that’s pretty much how it is.

I think, the hardest thing to come to terms with when raising a child like that, is that they do love you, they do want to show you… they just can’t. I compare it to an arachnophobic person being asked to walk into a room with one thousand spiders. Likely, if they really really love you, they’ll do it to prove it… but it’ll be the hardest thing they ever do. I picture my son walking into that room every time he gives me a hug… and he does hug me.

The one thing I’ve learned more than anything over the last 2 years is patience… to have far more patience than I ever thought I could have, even more than I ever thought was possible in a person. You have to find a way to keep reminding yourself, to keep telling yourself that your child not only loves you, but they have a hailstorm of love buried in there… it’s just not coming out like the temper does. But it’s there.

If anything, he may love me even more than he would if he didn’t have Autism… even though he may not understand emotions or know how to express them, I bet he feels them every bit or more than others. I just have to never forget that it’s there.

One night, as I tucked Cameron into bed, I told him that I loved him and he looked at me. So I asked him why he never says ‘I love you’ to mommy or daddy. He just sorta shrugged and so I asked if it made him feel embarrassed and he nodded yes. I asked if it was hard for him to say it and he nodded again. I assured him that it doesn’t make us mad, it doesn’t make us sad… we understand and it’s ok. I think it’s important for him to know that we know how hard it is…

Then he did, as he does quite often… he put his index finger tip around to the tip of his thumb, much like you’d do if you were to do the ‘ok’ sign. Then he put it up in front of his face and looked through it with one eye, and moved it back against his face, still with his eye looking through the opening.

I then asked him why he does that, to which I got no reply. I asked if it helps him to see better, like glasses and he just looked at me… so I asked if it helps him to see me and he said ‘yeah’. So I asked how it helps and he glanced around a bit…  I asked him if doing that helped him to not see the rest of the room and he again said ‘yeah’.

Cameron did this motion, almost ever night, quietly, sometimes completely without my notice, as his way to see me, and only me. Without interference or distraction. It occurred to me then that he had been doing this for quite some time, months… a year? I can’t remember but it’s been a while and it was always something I just thought was something silly he started doing.. like a child looking through the middle of a roll of toilet paper.

But it was so much more than that. I like to think that it’s his way of telling me he loves me…. that… he sees me.

Comments { 2 }

Our Greatest Wish, Our Greatest Fear

By on May 14, 2010 in Autism

We, like most parents of an Autistic child, have always had but one simple wish for our son… that he could be normal, or at least, have a normal life. We look towards the future and all we see is heartache, sorrow, misery and solitude. Even at the age of 4, we could already see how hard it would be for Cameron to have friends, to socialize, to be normal enough so that he won’t be teased.

We don’t know if he’ll ever live on his own, we don’t know if he’ll ever have a girl friend… much less a wife or family.

There is just so much we fear for him that it literally keeps us up at night talking about it. We are powerless to do anything about it but still we stay awake at night wondering…. what can we do?

However, as I lay awake last night thinking about it yet again, I began to realize that my greatest wish of having him be normal, was also my greatest fear. What if Einstein truly was an Autistic person? What if Tesla was Autistic? How many great minds through out history have changed the world all due to the fact that their brains were simply wired differently than a ‘normal’ persons? And what if someone had made them normal?

I got to thinking about how every parent sees unlimited potential in that new baby the first time they hold it in their hands… that tiny little bundle of new life could change the world, with the proper guidance and support.  Then I got to thinking about how there are some truly amazing Autistic people in the world.

I would like to share some examples of current day brilliant Autistic people:

Temple Grandin.
This woman did not speak until she was four, and hated most of her childhood but eventually went on to finish college with a doctorate and is a successful scientist and public speaker. She has designed more than half of all the slaughter house systems in the US because her methods are more humane and more efficient. And if you doubt me, Time has picked her as one of the 100 most influential people of 2010.

Stephen Wiltshire
Stephen lives in a world of his own, very quiet, very alone. He didn’t say his first words until he was 5 but when he turned 11, he drew a perfect picture of the city of London after having flown over it only one time. Since then, he’s been named the ‘Human Camera’ because he can successfully draw every detail of any city he flies over. Here is some a video of him flying over, and then drawing Rome, right down to the number of windows and columns. You can read more about him here.

You can read up on some more in this article and keep in mind, since Autism is still largely unknown to us, many others through out time could have been Autistic.

Now then, that brings me back to Cameron… if by some miracle, we found a way to make Cameron be ‘normal’, what might he be missing out on later in life. What might he have accomplished that we would be taking away from him.

I think back to the day I held him in my hands for the very first time and a whole world of potential and possibilities flowed through my mind, I thought he could grow up to be amazing! As he got older, he was compared to Einstein because of his delayed speech and I got to thinking… comparing him to Einstein, for better or worse, is really very amazing.

Now all I know is, if there’s greatness there, it can’t be forced or held back… only guided. And if it’s not there, that’s ok too. He’s already been compared to Einstein, that’s way better than I can say for myself.

I can’t wish for him to be normal and for him to be exceptional at the same time. That’s not fair to him, that’s not fair to me. He is who he is, and to me, he’s already very amazing.

Comments { 0 }