Tag Archives | routine

Summer routine? What summer routine?

By on July 14, 2011 in Autism

routineThe school year seems pretty crazy while you’re going through it… assemblies, meetings, field trips… but in reality, it is such a wonderful base for all routines. Up at the same time, in bed at the same time, eat at the same time, on and off the bus at the same time… it’s perfect. Well, as close to perfect as you might get.

Then the school year is over and summer time attacks your routine like a lion attacking red meat. The sun is up earlier, the sun goes down later, meals are rarely when they should be, you wake up and go to bed at different times daily and worst of all, you have no clue what day it is!

It’s strange too, because I do work Monday to Friday and yet I still find myself having no clue what day of the week it is most of the time.

So what’s the big deal?

Well, when you have a child with Autism, it is a very big deal. Routine is paramount to keep the meltdowns in check.

What happens is so gradual that you may not even notice it happening until it’s too late and very likely, you won’t put the two together as a cause and effect situation… but in time, your child will start to become more agitated, more prone to meltdowns, less likely to eat, less likely to sleep and more.

Missing out on your routine one day might not have much of an effect on the next day but over time, you will likely find yourself asking yourself why your child is misbehaving so much despite your best efforts to give them fun stuff to do.

So what can you do?

Well, there are a few things that can help with this.

  • Camp – Many children go off to summer camp for at least a part of the summer. Camp is a great place for routines as well as keeping your little ones occupied. Specialty camps are available almost everywhere for special needs children now too.
  • New Routine – So you wake up later, stay out later and eat later… so make it a new routine. Just make sure that the times you set are the times you stick to. Also, keep in mind that school will be starting again before you know it so before it’s too late, you’ll have to start adjusting those new routines back a bit to meet back up with the old school routine again.
  • Alarm clocks – Notice it’s plural? If you want to keep your bed time routine the same as well as the wake up routine… set 2 alarm clocks. One for the time you wish to wake up and one for the time you want the kids in bed. The one for waking up should almost never ring since your children will wake up at their regular times anyway but for those times when you do fireworks or camp fires.. your little ones might be up late. And it’ll be painful to wake them up rather than let them get the sleep they need but that regular wake up time makes for a regular bed time later that day.
  • Strict planning – A big part of routines falling apart in the summer is that you’re rarely home. The beach, park, camp and other places seem to eat the time up faster than you can keep track. And you’ll seem like the downer of the group for keeping an eye on the clock (watch, cell phone) but getting the lunches right at lunch time, the dinners right at dinner time and so one are very important. You don’t have to be home to get things done at the right time.
  • Sacrifices – Sometimes, sacrifices can be made. For example, my boys are still a bit young for fireworks. They do love fireworks, mind you, but it’s not a priority. For Canada Day, we spent the entire day at the beach, water park, playground and with friends. They were ready for bed long before it was dark enough for fireworks. Did they miss out? Maybe on the fireworks but on the day? Hardly. They loved every second of it. My wife and I were the ones who made the sacrifice. We’re the ones who missed out but you know what? It was worth it.

Depending on your child, routines have to be strict or relaxed or, if you’re one of the lucky ones, are not all that important at all.

If it is important to you and your child, if you’ve had a good routine for most of the year, you may want to consider it into the summer as well because as I said, things might start going south and you won’t even realize why until it’s too late.

A routine is much more difficult to fix than it is to maintain.

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The simple request my son made that I’ll never forget

By on February 9, 2011 in Autism

My son had a really rough night last night, and tough day today as well with the flu. I’ll spare you the gory details, let’s just say that we didn’t get much sleep and he didn’t eat anything today.

As the day unfolded, I continually went over in my head the next blog post that I would make about how he has never been the “sucky” type when sick, quite the contrary. He tends to just shut down, get mellow and do nothing all day. Sometimes we don’t even know he’s sick except that he’s not doing anything.

But as I prepared my boys for bed, something trumped all of that. The hours and hours I had been writing and rewriting in my head were gone in an instant and replaced with what I am writing right now. I was that surprised by it.

I am one of the very fortunate parents that does get regular hugs and kisses from his children, even though one of them has Autism. Rather than what you would call a “regular” hug and kiss though, I get them in patterns. I wrote about it here. This has become a part of our nightly routine… get them a small glass of chocolate soy milk, read a story or watch a later episode of Cat in the Hat and then off to bed, hugs, kisses and goodnight.

Tonight, because Cameron has the flu, I had to say no. Cameron stood up in his bed and said “don’t forget hugs and kisses!” and I had to say no.. not tonight. It’s most likely that he’s shared it with the family already but it’s still not wise to take the chance so I had to tell him that being sick means getting no hugs and kisses.

His arms dropped to his sides and he said “can I touch you? please? hold my hand?”

At that moment, anything else I had planned to write faded away. I had to write about this. But I never did come up with adequate words to express exactly how hearing those words made me feel.

Honestly… I had no idea just how important that was to him. For all the parents out there that seldom or even never get that kind of physical contact, here was my son pleading with me to not be denied it.

I took his hand, told him make sure he doesn’t breath on me… and pulled him up for a giant sized bear hug.

Flu or not. I’ll never deny him a hug again.

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He has become self aware

By on January 13, 2011 in Autism

Ok so my son isn’t a robot, but he does have some challenges that differ him from many other children, namely, Autism.

My two boys share the same bedroom which presents certain problems around bedtime. They tend to talk or play rather than go to sleep. This can be a bit of a problem when Cameron has school the next day. Like all children, he needs his sleep, but as a child with Autism, he needs it that much more or else his stimming and meltdown tendencies may become much more evident the next day.

In the past, I’ve separated them by putting one boy in my bed (mom’s bed, as they call it). I alternate between the boys so that they feel it’s fair but really, this is not the best solution. We can’t keep doing this until they get separate rooms, can we? What if I want to go to bed early?

Finally, one night, I decided to take on the discipline route… putting X’s on their behaviour chart, threatening to take something away. Finally, after being awake 2 hours later than their bed time (this was not a school night so I wasn’t hugely worried)… I said “that’s it… no video games and no television all day tomorrow!”

Sadly, this sounds like more of a punishment for my wife and I but ultimately it was a good thing. They needed a reminder that they have a lot of things they can do besides video games and television anyway, and it is also what would hurt the most.

So the entire next day, they moped around but found other things to do as they were supposed to. They even got a treat just before bed, since they handled their day so well, they got to watch Cat in the Hat on tv for 30 mins before bed.

The next day things were back to normal, and come bed time, I asked Cameron “Do you want to sleep in your bed tonight? Remember though, if you talk and play instead of going to sleep, you get no video games or tv tomorrow.”

Cameron thought about it for a little while, like… really thought about it… and said “uhmm… maybe I can sleep in mom’s bed tonight?”

Wow. Did he seriously just figure that one out on his own? I mean, he must have realized that in his room, he would be far too tempted to talk and play. In all that serious thinking he did, he must have realized that if he was in his bed, there’s no way he’d be able to resist the temptation to play.

Rather than risk it, he opted for the separation right from the start. Not just opted for it, but suggested it. I didn’t even include that as an option in my question.. I implied that it was an option by asking, but didn’t make it an option for a very specific reason.

The reason I titled this article “He has become self aware” is because this has been a big focus for me… to have him recognize upcoming hazards and avoid them by suggesting something better. Stop and think about your own child that has Autism and question how often this happens.. it’s really not an easy thing to do when your mind is so focused on the “here and now”.

As with many things in my blog, this is only a first step and certainly not going to dictate his actions/thoughts for his life but this is a great first step, I think. He’s become aware of his limitations and suggested a course of action to get the results he desires.

Good job Cameron!

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A Comfortable Rut

By on August 13, 2010 in Autism

Even if you had never heard of such a thing before, I’m sure you can identify with what it is. A comfortable rut is a period of your life where things are just easier to keep doing them as you did the day before, rather than make a disturbance that would be deemed uncomfortable even if it means moving forward.

The most popular of these would be diets, or lack of exercise… or both. Basically you get into the habit of eating the foods you like, you can’t find the time to exercise and eventually it’s just easier to just gain weight even though you don’t want to.

In the case of parenting a child with Autism, it’s a very very easy rut to settle into.

What happens is that you try various diets, various programs, therapies, routines and everything else until eventually something seems to work… something starts to show results and in a little while, it becomes comfortable.

And a few months later you start to realize that your child has been eating the same 4 things every day because it’s just easier than fighting or dealing with the issues that come from not eating. You just start getting used to sleeping at certain times and not sleeping at others. You start dressing your child in the same 3 or 4 outfits (if you’re lucky) because it’s less of a fight to put it on them.

A comfortable rut is exactly what your child with Autism is looking for. We can’t confuse this with a routine. A comfortable rut is what your Autistic child wants, a routine is what they need.

What is the difference between a routine and a comfortable rut?

Well, a comfortable rut sees no progress. There’s no moving forward. For example, instead of trying new foods or dietary supplements or pushing your child to break boundaries, you just keep feeding them the same old thing.

A routine involves doing the same things at the same time but can still be a push forward. For example, when eating with Cameron, we eat at the same time, and he generally eats the same meals but, each day we get him to try something new. Even if it’s just a bite or just a nibble, he tries it. Some things he’s liked, such as combining his cheese and gluten free crackers. Others, like fish… he did not like.

That’s progress while still being in the same routine.

Cameron would prefer to wear the same two Super Mario shirts every day for ever if we let him, which would make for a comfortable rut indeed. Instead, we dress him similar yet different shirts… nothing that will irritate his sensory sensitive skin too much but something that will be less than the most comfortable thing he could wear.

You’ve all heard the motivation speeches, the leaders talk and the get rich guys go on and on… push your personal boundaries if you wish to become more than you are! Well, why wouldn’t it be the same with your kids, especially if Autistic?

If you want your child to get out into the world and be independent, whether your child is very severe on the spectrum or very high, you must push their boundaries if they won’t do it for themselves.

I know, it’s really easier said than done in most cases but I never said it would be easy.

I’m not going to get into the specifics of it or anything because your doctors/therapists will likely be able to help you more than I could if they’ve worked with you before. Moving forward doesn’t mean you stop what you’re doing now, it doesn’t mean breaking from routine… it just means getting out of that comfortable rut and doing it!

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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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