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Going Out For Dinner With Autism

By on July 18, 2010 in 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!

By on July 16, 2010 in Autism

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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When Your Child is “Too Different”, Even By Autism Standards

By on July 15, 2010 in Autism

When Cameron was diagnosed, almost 2.5 years ago, we asked if it was Aspergers or something else and they just said “nope, it’s just Autism… he’s just on the spectrum”. They gave us the diagnosis in writing with numbers and information that made very little sense and were basically told that he is “moderate to severe”.

Later on we came to realize that, unlike most Autistics that don’t like to socialize, Cameron very much needed to socialize. In fact, he won’t even play his video games unless he has someone to play with him. He loves to have friends come over to play with him and he is always eager to share secrets and information with anyone who’ll listen. He’s what I call the anti-Autism boy. He only does things on his own when he’s overwhelmed and needs a break.

Now we come to therapy sessions where we’re told that he’s the “most inconsistent” child they’ve met… that he doesn’t like the things that every single other child they’ve dealt with does like, that he likes some things sometimes and not other times… they just don’t have any idea how to help him.

For the most part, I can’t complain too much. Cameron is a very well behaved boy, he is very smart and he has even been learning quite well how to reel back his emotions to get them under control.  However he does still have Autism. He does still need help.

It’s just frustrating not having answers… no ‘real’ diagnosis, no concrete solutions for therapy, no guarantees.

It’s funny though, if he didn’t have Autism, I think the last thing I’d want for him is to be normal, to fit the mold. I want my boys to stand out and be different. So maybe I just need to keep that perspective despite the Autism. Maybe it’s for a reason and maybe it has it’s purpose. I don’t know the future but maybe being so difficult to label is going to prove to be a good thing.

I don’t have answers but I do have hope.

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Wanting To Do More And The Pain That Comes With Being Unable To Do So

By on July 14, 2010 in Autism

One of the biggest reasons I get down, even to the point of hating myself, is that I only wish I could do more. I see these great parents writing amazing articles, running marathons, starting charities… I watched the movie Extraordinary Measures in which the father, facing the death of his two children, researches an under funded doctor who may have the cure and he sets out to confront that doctor, sets up a charity, gets the funding, finds the means and ultimately succeeds in getting a treatment found and now his children are still alive because of it.

Super hero stories are all around me where parents do super human things from sharing important information to raising millions… you’d think it would be inspiring.

The fact of the matter is that I’m just a guy… a dad, who works around the clock to simply be able to afford groceries as well as keep the power on. I’m just a guy who doesn’t have a university degree in business or journalism or science… I don’t even have a university degree!! I’m just a dad.

The truth is, no matter how much I can love my children, no matter how much I can sacrifice… I won’t be winning any awards, I won’t be changing the world any time soon.

Loving my children so much should be enough. I really do get it, I really do understand. I am doing what is needed. I have what I need. I am content with the life I have, I am content with the progress that Cameron has made.

But it’s not enough. Having what I need keeps me content. But I still wish for what I want… to really make a difference. To help find that treatment like the guy in the movie did. To find the doctor that has the real answer and help him if I can.

I get down on myself quite often, I just wish I could be more than what I am, have a better education, more skills, more time, more money, more fame to influence….  something, anything.

As it stands now, I get about 5 hours of interrupted sleep each night, and work when I’m not sleeping to afford the life we have. I just can’t do any more and it hurts.

I depend on others. I depend on them to find the answers that I can’t. I depend on them to make the changes that I can’t. I depend on them to be everything I wish I could be.

When Cameron is older, how do I look him in the eye and say “I took care of you, but I really didn’t do anything to help.” ?

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The Balance Between Work and Family Time

By on July 14, 2010 in Autism

Balancing family time with your work can be a challenge for just about any family but when you have special needs children and find yourself struggling to make it to the next pay check every single month… it becomes less of a challenge so much as a losing battle.

I am a web developer, which essentially means that I write code that makes a website work… not the design, but the functionality of it. As such, I do get the luxury of working from home but that doesn’t mean I get any extra time with my family. Quite the opposite really, for the most part. I tend to do my 9-5 like most everyone else does, and then I eat supper and end up with the same decision every single night… do I get in extra work in the evening so that we can afford groceries or do I spend time with the family after supper? I find myself having to sacrifice family time so that I can get extra work in so that I can make ends meet.

It gets especially painful when I buckle my kids into the van and my 2 year old says “Dad, you coming with us?” and I have to say “no, you guys are going swimming without me today… daddy has to work.”

Natalie (my wife) often gets upset that I’m not spending enough time with her and the boys, my 2 year old often gets upset when I leave… for example, Sunday mornings are supposed to be my day to sleep in, but he absolutely will not allow his mom to get up with him. It has to be me. And he’ll cry the entire time that I’m not up. We know that it’s because he doesn’t get enough time with me.

It’s really hard on them, it’s really hard on me. I have people asking me to do work for them all the time, and when I see a chance at extra income, I just have to take it… having to figure out how to stretch $20 for a week until the next paycheck gets pretty old pretty fast.

It’s great that there are charities out there funding research and setting up programs to help our children learn and grow… because there’s no way I could afford that stuff. I don’t think it should be up to them to help us out just so that I can spend more time not working, but at the same time, I really think that we (and by we, I mean all families with special needs children) could really use some extra help sometimes.

I really love my family time, I just wish I could get more of it.

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