Archive | July, 2010

My Child Has No Concept of Time Thanks To Autism

I realize that sometimes it’s simply difficult for some children to get a grasp of, but in Cameron’s (my son) case, he doesn’t get it in the slightest. For example, he never knows what to call each meal that he has… he knows that it is breakfast, lunch, or supper… but he has no idea which it is.  I know that it’s entirely possible that we’re simply not teaching it to him in a way that’ll sink in but for comparison’s sake, my 2 year old has a better grasp of it already.

After talking to his therapist about it, she confirmed that many people with Autism (especially children) have no concept of time… it’s just something that is beyond their realm of understanding. For my son, everything is either happening, or it happened yesterday or it will just be “soon”. There is no specific date or time it happened, just “yesterday” or “soon.”

We’ve shown him calendars, we’ve shown him digital clocks… but nothing will get through to him. He’s been out of school for a month now and yet he still tells us about each of his classmate’s birthdays as if they happened yesterday. In fact, he says “yesterday, it was my friends birthday!”

In contrast though, funny enough, he is fascinated with months… he asks us “is it July now?” despite having no concept of what day or how many days has gone by. He asks purely for the sake of his curiosity, not because he understands that one month is different from another.

I’ve done a lot of reading up on Autism since my son’s diagnosis but I have to say that I’ve yet to see any articles or studies on an Autistic’s understanding on the concepts of time.  Is the therapist right? Will it be years before my son is able to get the basics on time? Will he ever?

What are your experiences with Autism and the concept of time?

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Denial: The Worst Thing You Can Do For Your Child is Nothing

As a father, I get a lot of moms asking me about denial when it comes to their child with Autism. It’s because most of the time, if a person is going to be in denial over their child’s diagnosis, it will be the father. Now, this isn’t 100% of the time obviously, but generally speaking, men do not want to hear that their child “is retarded”… I know, that’s harsh but that truly is what goes through their mind when they hear the diagnosis.

It’s amazing that we’ve come such a long way from our barbarian ancestors and yet many of us still can’t accept that there may be flaws in our offspring… that they aren’t perfect.

It’s not as crazy as them wanting to cast them off a cliff for being imperfect, it’s just that they don’t want to admit that their child has a disorder, they just keep telling themselves that their child is just taking longer to develop.. they’re just struggling… they’re just not ready… they’re fine.

Now, I can’t emphasize this enough so I’m going to repeat it several times… the worst thing you can do for your child is nothing! If your child has Autism, doing nothing means putting off their road to recovery. If your child does not have Autism, what harm did it have in helping them learn to talk or walk or socialize?? What harm is there in finding out more information??

For each and every single day that you put off a doctor’s visit, a therapy session, a chance to read up on some material or a chance to talk to an expert, you are putting off your child’s entire future… and you’re not just putting off their future by a day, you may be putting it off completely.

That one day of extra work could have made the difference between a communicative adult with Autism in the world and a communicative adult with Autism still living with you at home. Think that’s extreme? It is. And it’s the grim reality of it… every single day, every single moment… makes a difference.

It’s true that early diagnosis is key to treating Autism, but it’s just the key. You have to use that key, open the door and go through it and until you do, the diagnosis was for nothing.

Being in denial about it, refusing to believe, refusing to accept… you’re shutting the door on your child and on your child’s future and for what?? You’re pride? Will you feel good about it in 30 years when your child still doesn’t talk? hmm… that sounds extreme too, but again, it’s the grim reality of it.  It’s the risk you take when you say no. It’s the risk you take on behalf of your child when you do nothing because again, the worst thing you can do for your child is nothing.

In fact, most often times when a father (or either parent) is faced with an Autism diagnosis that they are denial with, they actually spend even less time with their child than they would have if they hadn’t gotten the diagnosis when in reality they need more attention. They need your help, your love, your guidance. And if you are not there to give it, you haven’t helped, you’ve condemned.

I’m not here to make you feel guilty if you refuse to believe your child isn’t perfect, I’m here to help protect you from the guilt you’ll feel later when you finally do realize that if only you had acted sooner… your child would have been so much better off. You can’t go back, you can’t erase the guilt.

All you had to do was act. All you had to do was be there. The worst thing you could have done was nothing.

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Riding a Bike, How Can Autism Make that More Difficult?

When most people think about Autism, they think of a child that has social problems, probably can’t speak and is possibly even violent. Many forget that it usually affects a child’s motor skills as well, especially when exerting themselves by doing things such as running or in this case, riding a bike.

If you’ve ever watched a child with Autism run, you can see it quite clearly by the complete lack of control of their arms, their body being off balance and their legs kind of kicking out to the sides just as much as moving forward.  It kind of looks like a 1 year old just learning how to run for the first time.

Riding a bicycle is a tricky thing to learn for most children as pushing the peddles forward in a circular motion, one foot at a time, is a lot to process for even the most gifted children but when you lack fine motor and muscle control, it can be near impossible.

In fact, I know some people who’s children are over 10 and have yet to be able to master it. It’s not from a lack of trying, it’s just not in them yet to be able to coordinate all of the body parts at once that it requires to get the bicycle moving.

In my case, I had another issue on top of all of that and that is Cameron’s size. You see, he was the size of an average 5 year old when he was 2. This meant that he was immediately too large to learn how to peddle a tricycle. He never had that first learning step because his legs were too long before he ever had the chance.

We got him a 2 wheeler with training wheels shortly after, so that he’d have a better chance at peddling something with his size but again, he was never able to get the concept.

This is where patience came in, and lots of it… over the span of 2 years.

Cameron got pretty frustrated a lot of the time, not wanting to try after failing at it for a few days… sometimes I even had to fight with him to get him outside to try. But we just kept at it a little here, a little there…

Now Cameron is just 1 week shy of turning 5 years old and after a lot of trying and trying and trying… he can ride! Granted, he puts his feet on the front tire to stop and he doesn’t turn yet… but he has the basics down and for me, that’s the biggest hurdle.

Keep in mind that he’s now the just about 5 and is the average size of an 8 year old… he looks pretty big on his bicycle now, but he can ride it and that’s the important part!

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Going Out For Dinner With Autism

If you’ve ever wanted a challenge in your life, try bringing an Autistic child out for dinner some time. I’m not saying that it’s so difficult that we’ll never do it again, because we do still go out from time to time… but it can be a bigger challenge than you might imagine.

First of all, you have the sensory issues to deal with… restaurants can have a lot of noises going on, especially if busy, they don’t have the best lighting most of the time, smells all around you and then… there’s the food. 99% of everything I find on every menu… my son simply will not eat. It’s not a matter of whether or not he can, he just won’t. Taste and texture issues prevent him from eating any meats (including fish and chicken), most veggies, most fruits and so on.

Now that we have 99% of all foods excluded from his diet, let’s talk about… his diet. My son is on a gluten free diet because when he eats it… he becomes a monster for the next 3 days. That sounds harsh but quite literally, eating some gluten will result in him becoming totally violent, completely uncoordinated, very difficult to communicate with and completely unwilling to listen or do what we ask of him. So, the few things that he would be willing to eat at the restaurant such as pasta or a grilled cheese sandwich are completely off limits. There’s no way we’ll put him through it or go through it ourselves.

Finally, there’s the tantrums… all of the sensory issues and food issues put together on top of a general uneasy/uncomfortable feeling that comes with being Autistic in public can add up to a complete and total meltdown right there in front of everyone. We’ve been there and had the glares from the people around us as we try to reel in our child back to a volume that’s a little less disruptive.

Then there are the hidden secrets, which is what we’ve been learning to deal with… recently we took my son out to a chinese all you can eat buffet where we figured that they would have at least something that he could eat, maybe rice?

Well, it turns out that they didn’t even have white rice, it all was fried rice… and all of it, fried in soya sauce. Well, as it turns out, half of the soya sauces out there are made with the primary ingredient being wheat, which is gluten. Some are not but many are. So giving him rice becomes a crap shoot… who knows what the outcome will be.

And sure enough, there was nothing else that he would or could eat. He ended up having watermelon, jello and ice cream for dinner. Even the ice cream is not really recommended as ‘casein’ is often included in the ‘gluten free/casein free diet’. But he has less of a reaction to it and a small scoop of ice cream wouldn’t affect him to any noticeable degree.

Imagine, your child is forced to have dessert for dinner because he/she can’t eat anything on the menu in a place where he’s too loud and prone to having a temper tantrum at any moment. Sound like a nice quiet dinner out with the family?

That’s what it’s like when your child has Autism.

I’m not going to offer up solutions for those of you that are looking for ways to make those dinners go more smoothly because I’m neither a professional nor do I think that any of my solutions will be solutions that will work for you… all children are different as are parenting styles.

What I will tell you is that you’re not alone. I will tell you that simply not going out is not much of a solution at all but understandable if you go that route. But I think that the only way a child will be a normal part of society is to get out there and be a normal part of society.  Like with all things, practice makes perfect… your child will get better as will your ability to handle those situations.

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The Secret To A Successful Hair Cut? Bribery!

We took Cameron to get his hair cut yesterday, his 5th birthday is coming up in less than 2 weeks so we want him to look his best. Now, if you have little ones with Autism, you know just how much of a huge shock to the sensory system a hair cut can be to them. It has never gone well* but has been getting better with each hair cut so we knew it was just a matter of time before he finally became accustomed to it.

This time, we took him to the local Walmart for his hair cut. It’s not our first choice for a good hair cut but this time, there was a very good reason for picking it. You see, we went in, and went straight for the toy section where Cameron and his little brother found a lot of things they’d love to walk back out of the store with.

We told them both, and made it very very clear, that if they did well for their hair cuts, we would come back and they could pick something. Now, don’t think I’m crazy here, they had a limit of about $10 each so nothing too extravagant.

Anyway, Tyler found some bouncy balls and Cameron found Mario toys and Toy Story toys. He couldn’t decide which he wanted but he knew he wanted them.

So we returned to get his hair cut where he was very nervous, very shy and very anxious. We continued to assure him that it would be just fine and that he had toys waiting for him if he did well.

To our complete amazement, not only did he do well… he did exceptionally!! He put his head down, he didn’t squirm when the lady held his head, he didn’t shake his feet or hands when he was uncomfortable… he was perfect!!  Well, next to perfect because you could see the obvious discomfort/uneasy feeling by the expressions on his face, it truly was bothering him.. but other than that look in his eye, you’d never have known.

He’s almost 5, which is to say, he’s still only 4… and to be able to deal with such a massive overload of the senses and an obviously very uncomfortable situation… let’s just say that I couldn’t be prouder. It takes a pretty big person to be able to do that at any age, much less 4!

As a reward, he got his Buzz and Woody, we also got him a Mario tshirt and an ice cream sunday… he earned it. Although he doesn’t get the tshirt until his birthday.

Anyway, bribery isn’t exactly endorsed by ‘the experts’, but it got him toilet trained and now it’s getting him through hair cuts. These are exceptionally difficult things to do for children with Autism. It’s hard enough for children that don’t have Autism! So like I’ve said a million times before… do what you know will work for your child, not what an expert says you should do.  I know Cameron won’t become dependant on rewards, he never needs them the second time. I know his next hair cut will go just as well despite not being promised a toy.

But that’s because I now my son better than the experts do.

The moral of the story? My boy is all cute and has new toys so he’s happy too and therefore… I’m happy too! We all win!

*** Why does a hair cut never go well for a child with Autism? Well, you have to imagine just how many senses are at play that you and I probably don’t even notice. First, Autistics don’t like to be held, hugs are definitely out of the question, so when the barber puts their hand on your head and holds you down or starts moving you around… you might as well be torturing the poor child. Then you have scissors rubbing across your skull over and over again, especially weird around the ears…. they’re very sensitive for even me. Next you have all that hair on your neck, it’s itchy enough as it is but when you’re extremely sensitive? You’re feeling it all. And finally, the electric razor… that thing sends chills down the spine of even the most hardened individuals so you can only imagine if you’re extremely sensitive to those sensations… it tickles, it is very loud, it rubs the skin, it…  well, let’s just say that there is so much at play during a hair cut that it can be easily overwhelming for the average child and may as well be war time torture techniques on an Autistic child.

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