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Their Routine Becomes Your Routine, Their Diet Becomes Your Diet, Their Life Becomes Your Life. Welcome To Life With A Child With Autism

By on July 26, 2010 in Autism

It’s a bit of a long title but it gets the point across. When you have a child with Autism, you quickly find that certain diets will or won’t work, you quickly learn that having a stable routine is essential to not just getting things accomplished but for the sanity of your child and yourself. These things work best when you not only impose them on your newly diagnosed child but also when you work them into your own life and that of your whole family.

When you have a child with Autism, or any real disorder/disease/disability, you quickly find that your life changes so much more than what your family and friends teased you about when they bugged you about getting little sleep or dirty diapers. Your life quickly becomes a juggling act of research, cooking, time management, doctor, advocate, psychiatrist and so much more. You look back and think to yourself how all those family and friends really had no idea how good they had it!

If you’re a single parent having to deal with Autism, I truly feel for you because from where I sit, I don’t even know how it would be possible to manage it… so kudos to you for doing it!

My wife and I tag team it, that is to say that she does 90% and I do 10%… maybe I’m a bit unfair in being modest but it’s not far off, but even if 10% is all I could contribute, I know it’s an important 10%.

This is a short glimpse of how it is in my house, perhaps some of you can relate, perhaps some of you are looking forward to something similar, perhaps some of you are just interested.

If the day were to start at midnight, then I’d be the one on call, getting up with Cameron when he can’t sleep, or has nightmares or gets thirsty. Why does he get thirsty over night? Well, because he doesn’t eat… we’ll get to that later in the day though.

Then I get up at 5am on school days or 6am in the summer (because we let him stay up later in the summer) and handle the mornings with him. This means either scrambled eggs or bananas with peanut butter for breakfast, more soy milk to drink and we sit on the couch watching a movie while we struggle to wake up. We play and watch stuff and do stuff until 9am when my wife Natalie gets up and takes over.

See, Natalie has Fibromyalgia which means that she needs 2 things to function, sleep and exercise. So I handle the nights and mornings… and the fact that I work from home means that she can sleep until I start work since I have no commute or anything. However, this means I generally get no breaks between waking up early, doing stuff all morning and starting work.

So I work while Natalie deals with both boys all day, all the while cleaning, cooking, educating them when she can, taking them to the park or even shopping and more importantly, to Cameron’s therapy appointments.

You see, she doesn’t even drop off the boys anywhere, especially Cameron. She stays with him to ensure that the ‘experts’ don’t do anything that might cause our son to regress (because even they don’t know the cans and can’ts for all Autistic children until they get to know them) and she also soaks in all they teach, learning it all and bringing home reading material when ever she can.

Meals generally consist of what ever Cameron can eat which means rice, eggs, brown rice pasta, bananas, corn and peas… beyond that, there’s not too much. So we’ll usually be eating something that fits that. This means that we may have some meat and things extra that he doesn’t have but generally his diet dictates our diet.

Come supper time, I’m done work and we all sit down for a family dinner which is to say, 3 of us sit there while Cameron runs around the house playing and coming back for bites from time to time. If he’s overwhelmed or had a rough day, chances are he won’t even eat at all, much less come back for bites. If it’s not something he wants, he simply won’t eat. Again, our meal generally fits his diet. When all is done, either we play together for a bit or we all go to the beach where Natalie goes for a run around the lake and I take the boys swimming. Again, exercise is important for her and swimming is very beneficial for Cameron… and just plain fun for both boys.

From there we return home and I give the boys a bath… another downside to my wife’s Fibromyalgia is that she can’t be hunched over the tub or wrestling with wet boys all that well.

We enjoy another movie or tv program, some quiet time and then I put the boys to bed where I read them a story, get them a drink and tuck them in.

Then I go back to either watch a movie with Natalie for some much needed quiet time or, as most often happens, I sit down to do even more work. You see, the therapies and gluten free foods and trips to the city for things like test and such, they leave us living paycheck to paycheck, or worse in many cases… which means that I need to work that much more.

Also, my wife has even started working a little as well, doing some evenings and part time work here at home as well.

We’re both extremely lucky that we can work from home, because commute times would kill us, doing things separately/individually would kill us…. we wouldn’t be able to cope quite as well anyway.

Then around 11 or midnight, I’m back to bed to start it all over again. No days off, no day cares, no babysitters, no rests or breaks. It’s the routine, it’s the diet, it’s the life.

I kind of skimmed over my wife, Natalie’s, part but truly it is the 90% to my 10%…. she takes him to all of his appointments, she deals with all of his meltdowns through out the day, all his fighting with his little brother, does all the meal preparations which often includes 3 different types of meals from mushy processed slop for Cameron (to mix up and hide things such as meats in his meals) to solid pieces for my toddler who likes to use his fingers and then a ‘normal’ meal for she and I. She learns all of the methods and processes for treatments and also learns of the products and toys and devices which aid in helping him write, deal with his senses and so forth… she handles them out and about doing groceries and walks and such…

Every little thing you could do that sounds like a chore when you have a child becomes a very real challenging task when you add in Autism.

You can’t deny the complexity and you can’t deny the struggles that all of us feel every single day. But if you don’t adapt and learn when to make your child’s life a part of yours and to sacrifice and make your life a part of your child’s, then it can be down right impossible.

It’s even more difficult to explain it to friends and family around you who think you’re strange or even down right mean that you don’t take your child to a county fair, or late movie when they want you to just up and join them… if it doesn’t fit the routine, if it doesn’t fit their sensory and social needs, if there is no food for them to eat….  you simply can’t do it. And while they may never understand, you stay home and you keep your kids home… even when they are judging you for it.

Because as much as having a child can be a life changing experience…  their life is now your life.

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Stimming: What Is It? Why Do Autistics Do It?

By on July 23, 2010 in Autism

First, I’m not a doctor nor an expert, so if you want a detailed technical explanation, I suggest you talk to the doctors that diagnosed you or your children. However, if you would like my take on it and details as to what my son does and why, then please feel free to read on.

A recent discussion on Twitter about visual stimming really got a lot of people thinking and some people asked what it is. It’s a bit of a vague question for many reasons, for example, some people have witnessed it but don’t know why it happens, some people have never witnessed it and some people have witnessed it yet didn’t even realize that what they saw was actual stimming.

While there is no concrete definitive answer just like how there are no two people with Autism exactly the same, it can be broken down into a few distinct categories. And much like a newborn baby’s cries, it’s up to you to distinguish what each stimming event means.

In most cases, stimming comes as a form of meditation for the person, a way to narrow their focus down onto one thing so as to remove themselves from an overwhelming situation. In Cameron’s case, sometimes he has a friend come over to play and finds that every hour or so, he needs to remove himself to the kitchen where he’ll pass two toys back and forth in front of his face over and over and over again for a good 10 to 20 minutes. This eases his mind, allows him to wash away the anxiety and stress of being overwhelmed and then go back to join his friend and play some more.

Another example of this is in Temple Grandin’s movie where she invents a squeeze machine which holds her as tight as she wishes to be held and it calms her, focuses her and even prepares her for what she knows will be an overwhelming day.

Some people fear this stimming, they wish their child wouldn’t do it and so they try to make their child stop or they look for a cure. In these cases, I think the stimming is a cure (at least in the Autistic’s mind) to an overwhelming world. It’s their escape and so taking that away from them could be rather disastrous.

Some people believe that what a child with Autism might be seeing or tasting or hearing could be an after effect of the food they eat. Sounds strange but the premise of the GFCF diet is that the proteins affect the brain much like a powerful drug, which in turn makes it so that when they see an object pass before their eyes, it looks as if it’s leaving trails behind it. Or sounds echo more than before, or touching something can be almost painful. Most of us haven’t done heavy drugs like that but I’m sure we’ve all heard stories or seen enough movies to imagine what it could be like. If those gluten or casein proteins truly do react like that then it’s easy to see how and why an Autistic child would stand there waving their hands back and forth in front of their face for an hour.

In some cases stimming is sometimes not stimming at all! For some children, they may have visual impairments that no one but trained experts would recognize and the issues that it gives these children end up looking to us like stimming. If one eye is out of alignment, if the vision is clear but causes things to be jumbled, if the vision to brain link is not 100% causing the child to be unable to track a moving object without moving their head…. these things can result in a child doing repetitive motions over and over again trying to self correct a problem they don’t even realize they have and to us, and even most doctors, it would simply look like an Autism symptom. In these cases, a visit to the proper doctor that can recognize and treat these things could be all that’s required for a full recovery! Shocking, I know.

Take schizophrenia for example, where a child is imagining things as if they’re real, where they’re hearing voices talking to them as if they’re real… these children may do what the voices ask, they may refuse and end up hitting themselves trying to make the voices stop… again, results of what they don’t understand end up being diagnosed as Autism to us. If there is enough going on in the child’s mind, they may not even notice the real world… which may come across as ignoring, or violent, or again… stimming.

This brings us to the ‘violent’ stimming, which is often seen as children banging their head against the wall or hitting themselves in the head… but can sometimes be something more simple such as bouncing on their beds, hitting a toy over and over or even, as mentioned, a strong comforting hug from a blanket or device (almost never from a person). Most people think of it as a psychotic crazy thing, one of those things you only ever see in horror/thriller movies where the kid will eventually start ripping animals apart and family members go missing… but the truth of the matter is, this is just stimming.

There’s a lot of debate over this, whether it’s frustration of being locked in their own little world, or if it’s their need to simply feel something. It could even be that on their level of sensory input, it has the same effect as a visual stimmer having an object pass before their eyes repeatedly.

These are the more extreme cases that tend to come from internal factors such as Autism, sensory issues or other things like that but you have to realize that there doesn’t have to be something like that under the surface for stimming to occur. Have you ever chewed your pen or pencil? How about your nails? Ever tapped your fingers on a table or bounced your knee up and down? Ever rocked back and forth in a rocking chair? Yeah, you know where I’m going with this. These are all forms of stimming that you and I do every day and as you know, half the time, we don’t even realize we’re doing it.

Cameron, luckily, is a visual stimmer mostly, in fact I have even an article written on his “thai chi” but he also does like the “banging” stimulation where he needs a heavy comforter to sleep, and likes to have his mattress on the floor… with him under it.

I think it’s really important that doctors figure out the differences and the causes. I don’t care if there are 1000 different causes, they need to be determined and a solution needs to be found where we, the parents, can differentiate between them.

Quite frankly, I’m happy that my child takes a 20 minute breather from social play to ease his mind. If that’s what it takes for him to be happy, have fun and have friends, then by all means, take your time! But if my child is hitting his little brother because it’s a voice in his head telling him to do it instead of just an Autistic need to fulfil a sensory input… I would kinda like to know!

The big deal about this is that doctors can only help us so much, and that’s usually after we, the parents, are able to break through the shell and figure things out ourselves. No one will ever know if a child hears voices unless we are able to get our child to respond to us and not just respond, but actually vocalize the issues.

And this is why stimming is still such a mystery. It comes in so many forms, most don’t even know they’re doing it and the reasons change with the seasons.

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My Child Has No Concept of Time Thanks To Autism

By on July 21, 2010 in 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

By on July 20, 2010 in Autism

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?

By on July 19, 2010 in Autism

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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