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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

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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Family Dinner is Not What I Thought It Would Be

When you have a baby, and you’re standing there with this little new life of just a few minutes… your life flashes before your eyes, only it’s not the life you’ve had but the life you have yet to have.

You picture teaching this new life how to walk, how to say it’s first word, how to throw a ball, ride a bike… eventually, how to drive. So much floods your mind that you literally get light headed thinking about it. And as the years start rolling and you start doing some of those things, your mind starts to picture the more simple things as well, such as bed time stories, visits to the park, school and family dinners where everyone talks to each other.

But then you find out that your child has Autism (or any disorder/disease really) and all of those happy thoughts of your life yet to be come flooding through you once again, only this time it’s not of how you look forward to them… but… will they happen at all?

We bought my son a bike, and I made a solid attempt at teaching him to ride it but he could never get his feet to do what was needed of them. And if you’ve ever seen a 4 year old with Autism try to run, you would see why. So I’ve put it off for another year, we can try again as he learns more control.

I tried to teach him how to catch a ball but again,  his hands simply don’t have the discipline and coordination to do the things that are required of them.

Family dinner is one area that has been particularly difficult… and it’s not because he won’t talk to us, as you might expect from a child with Autism.

While it’s true that Cameron has a hard time with the social aspect, it’s not that he can’t talk to us… he does, it’s just that he can’t sit there for a whole meal. Essentially what happens is that myself, my wife and my 2 year old all sit around and eat while Cameron runs in and takes a bite and then runs back out to the play room to play. We give him a bit and then call him back to have another bite and he disappears again.

This has been the routine ever since he’s been able to do so… it means having a dinner with and without the whole family. It’s not what I had pictured at all, but I’ll take what I can get.

The other issue is that he’s on a GFCF diet, which means that 9 times out of 10, he’s eating a specially prepared meal that doesn’t match ours… we do try to stick to the same diet however my son’s food issues extend beyond just what we limit him on. He also refuses to eat the majority of vegetables and all meats, including fish and chicken. He has never once tried fast food and refuses to, but he does love candy and chocolate, not the best supper options.

So there we sit, watching my son run in and out through the entire meal, eating something different from the rest of us. Not at all what I had pictured when I first held him in my arms, not at all the happy family setting you see in movies and television.

We often get funny looks or comments from friends and family when they see us let him run around and play, rather than sit up like a good big boy and eat until his plate is empty (right? you all remember your parents making you do that?)… well, the fact is, either we do it this way or he doesn’t eat his dinner.

I’d much rather have a child with a severely limited diet actually eat, even if it means he plays all the while, than to have him not eat at all.

It’s not what I pictured, it’s not what you see on tv and it’s not how people tell you it should be… but it’s my family, he’s my son and he’s happy and healthy so to me, it’s the perfect family dinner.

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Have Patience – Routines Are Hard Enough to Change Without The Autism!

Imagine having something set in stone in your life, something you’ve done since you were a child… no matter what happened, you never missed it, or if you did, you were thrown off for the whole day. Now imagine someone asked you to stop, or change it…. right now!

I think that would be a pretty overwhelming task for even the strongest willed of us, humans are pretty good at being able to adapt but I think it’s safe to say that we’re really routine based creatures. We all go to school, we all work, we all live in this wacky social society system we’ve built up around ourselves.

Now imagine that your brain is wired differently where any slight deviation from your regular routine sends you into a turmoil of raw emotion that you can’t understand, much less control.

I can’t even pretend to know what that is like even though I witness it first hand from time to time.

You see, my son is about to turn 5 and he is Autistic. You have to understand that to a 5 year old, a routine that’s lasted 2 or 3 years is pretty much the majority of his life, certainly the portion of his life that he can remember clearly.

The reason I bring all this up is that many people forget what it is they’re doing when they ask a child to stay up later, walk a different route, take a different bus… even to have something else for breakfast because you’re out of their favourite cereal!

Routines take time to change or break, for everyone. But for an Autistc person, it may not be possible at all, but if it is, it will take even longer. Routine is the foundation to a clear mind, feeling safe and feeling in control.

The trick in all of this is to make others understand, to have others realize the difficulty involved. Even the ‘experts’ that recognize this, sometimes simply forget, or don’t realize the impact of their actions. One big area this affects many children is at school as it can be quite the dynamic setting.

Cameron’s teacher and helpers are really great and they write into a daily journal to let us know everything that happens, but one time, they let something slip through the cracks… we noticed a behavioural difference in Cameron but didn’t know the cause. It wasn’t until a while later that we were told that the Autistic children were moved from a private small area to play outside to the common large public area to play for their recess.

They thought they had told us but it never made it into our book… and so some time later, we finally realized why it was that Cameron was behaving slightly different lately. Once realized, we could address it and help him to understand and feel comfortable with it.

As with anything involving an Autistic child, don’t take anything for granted. The smallest detail to you and I can be very important to them.

If a routine must be changed, be prepared to have a lot of patience. Be prepared to be very understanding. Be prepared to weather a storm. Because you’re asking a lot from them, more than you may realize. The sooner you respect that, the better it will go.

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Bad Behavior You Say? I Say, Be Thankful!

Recently my son has taken to calling other people names, this type of behaviour is rather normal for all children really. They pick it up from movies, television, other children and really, anyone. Ever called your table stupid after you stubbed your toe on it? Children pick it up quickly.

We’ve tried to keep on top of that with Cameron, explaining to him how it is rude, not nice, hurts people… and so forth. He understands but it’s an emotional response so really, it’s just a matter of getting through it with him. In time, he’ll dial it down, I’m sure… I hope.

We moved a couple of months ago and so he was put onto a new bus, he rides on a special needs bus with a bus driver and another lady who talks to them, tells stories and so forth… a helper. So these were new people to Cameron added on to the fact that he didn’t want to be on a bus that was different from what he had come to accept as part of his regular routine.

As part of that old routine, Cameron used to fall asleep on the bus ride home from school, recharging his batteries for more play time at home, but on this new bus, the helper lady constantly tried to talk to him, interact with him… ultimately, annoy him.

The tension escalated until Cameron began calling her names, such as stupid and dumb… and screaming at her. The bus driver was not happy and told us, the parents, before going to file a report. Three reports and he is removed from the bus.

I can not begin to explain my confusion and frustration. This is a school bus for special needs children and him calling the lady stupid will have him removed?? I understand that it’s not exactly great that he does it but he’s a 4 year old with Autism.

I took a moment with the bus driver and explained myself, Cameron and the situation… it went something like this:

“Look, I’m not happy that he’s calling anyone names or saying hurtful things, but you have to understand that 1.5 years ago, he had yet to say his first word and we were told that he might not say anything for years. On top of that, many Autistic children are outright violent, even if not provoked. So yes, I wish he didn’t say mean things but to be speaking at all, and to be lashing out with words rather than fists… it’s a huge blessing to me! I still need to learn how to help him reel the things he says back in but in all honesty, I’m thankful that he’s capable of expressing himself.

I will work with him on stopping the name calling, but in the meantime, just leave him alone. If you continue to get in his space when all he wants to do is zone out, or sleep, then I can’t really blame him for lashing out like that. Just don’t give him any attention at that time of day unless he asks you and I’m sure you’ll be just fine.”

And sure enough, I haven’t heard a word about it again since. But that doesn’t mean I won’t bring it up again. This is supposed to be an environment that is supportive and understanding.. that little blue wheelchair symbol is on the side of the bus for a reason. I understand that they may not have formal training because they’re just driving a bus but that’s still no excuse.

If my child starts hitting you in the face while you’re trying to drive the bus, then yes… we have a problem. But if you get in his face and he calls you a name, I’m sorry, but I can’t be anything but thankful that he’s at the level he is. Because the alternative is a whole lot scarier.

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How Did You Know Your Child Was Autistic?

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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