About Stuart Duncan

My name is Stuart Duncan, creator of http://www.stuartduncan.name. My oldest son (Cameron) has Autism while my younger son (Tyler) does not. I am a work from home web developer with a background in radio. I do my very best to stay educated and do what ever is necessary to ensure my children have the tools they need to thrive. I share my stories and experiences in an effort to further grow and strengthen the online Autism community and to promote Autism Understanding and Acceptance.
Author Archive | Stuart Duncan

Some Christmas tips for those with children on the Autism Spectrum

By on November 8, 2010 in Autism Holidays

Christmas is stressful enough for parents, having to budget and shop and organize and decorate and so forth… it becomes that much worse when you consider that your child or children won’t even enjoy all your efforts. Quite the opposite, it might be too much for them and ultimately become a disaster.

I won’t be able to solve all your problems, the vast number of issues that children can have in such a hectic and very big period of time can’t really be covered in just one blog post. But I do have some suggestions that will hopefully make it a bit easier.

Christmas Shopping

Cameron Christmas 2005

Cameron's First Christmas 2005

The great thing about malls and stores starting the holiday shopping season so early is that it gives those of us with Autistic children a pre-boarding pass. It means we can avoid the crowds and craziness and just take our time. Most of us don’t, but we could… and we should.

Actually, you should start shopping in January if you can help it. If you’re like me, Autism and having a family in itself can drain the bank account quicker than we’d like. So us Autism parents have to spread out the shopping through out the year even more than most families, and it’s a good idea for everyone. If you spend $50 on one present each month for 3 months, it’s far easier to manage than to spend $150 on 3 presents from one paycheck in November or December.

Speaking of November, early November is a great time to get your children into the stores to start window shopping. Take some notes and see what they like, what they don’t like. It allows them the freedom to really think about the toys rather than the other kids around them, the crowds all talking at once and so on.

It also gives you a stress free outing (or less stress anyway) where you can really get some good vibes from them.

Another alternative is catalogues. Everyone’s done the catalogue thing, where you circle toys/games that you want. This is something that even non verbal children can do, they don’t have to get it perfect but can usually get the message across to you.

The down side to shopping in November is that their wishes may change in 2 months, but it’s a risk worth taking. Even if they decide they want something else in that time, they’ll likely be reminded and very happy once they see what they were thinking about just a short while ago.

Decorations

The good thing about decorations is that they come in all shapes and sizes, however the bad thing is that some will have an adverse effect on your Autistic children. And the affect it might have can be so subtle that it might not show up for several days. Blinking lights, glittery objects, sound making trinkets all over… these can wear down the senses over time without anyone even realizing what it was.

A few things should be in your mind:

  • If you insist on lights (and who doesn’t?), pick lights that stay on, or have settings such that you can have them blink from time to time but be set to be consistently on the rest of the time.
  • Some tinsel is nice, but if you have bright lights aimed around or aimed at the tree, these and other decorations can give off blinding little flashes that you and I might not think much about but can get very frustrating. If you notice your child ‘retreating’ from the room or finding a favourable spot, it may be because it has the least glare.
  • Some singing or noise making decorations are great, they’re especially great if they are activated in some way. For example, a singing plushy that goes when you press a paw or foot is a great way to give your children control of it. Random sounds can be a little scary.
  • Background music is best kept in the background, if at all. That means, keep it quiet. If you have it to where you can make out the words and sing along, it might be too loud for your little one. Remember, your children might not have a ‘background’ setting when it comes to their senses. That means that what you barely notice is there, they hear perfectly clearly and are having to battle that music while trying to listen to you.  If they don’t listen to you, it might just be that they don’t actually hear you.
  • Get your children to help with decorations. Have them decorate the bottom half of the tree, or along some railings inside the house… someplace low. Getting them involved is a wonderful way of helping them cope with them being there. They feel a huge sense of pride but also comfort in knowing that the decorations are there because they put them there. They remain ‘in control’ of their space.

Family Gatherings

The best you could do is to have everyone to your house for Christmas but unfortunately this just isn’t a reality for everyone. Whether it be a small house, distant family or just that family would like to host their own gatherings sometimes, you’re just going to have to face the reality that you will have to leave the comfort of your own house.

First and foremost, before anyone goes anywhere, try your best to make family realize that your child is going to be overwhelmed. Have patience, you can handle it, your child doesn’t mean to be bad and could possibly come across that way at some point. Some might not understand no matter what you say but at least you will have said it, and some will ‘get it’ and hopefully speak up for you when you’re not there and someone makes a comment. It does happen.

Also, your family has to realize that your child will very likely not hug them, much less give them kisses, to get their presents or treats. Don’t let anyone force your child into that sort of situation. It’s like asking an arachnophobe to go into a room full of spiders. The first person they have to reluctantly hug for something in return may be the trigger that makes the rest of the night unbearable. Make sure your child says please and thank you but that’s it, no one should expect more than that.

If you do get Christmas at your house, discuss ‘safe zones’ with your children. Someplace they feel safe, it’s quiet, comfortable… set up some toys or anything else they like such that they can retreat when need be. They might just disappear there the whole time but it’s better than what could be the alternative.

Going to someone else’s house to celebrate the holidays doesn’t give you a safe zone but that shouldn’t stop you from finding one. If your child needs space, take them there. Don’t make it a time out zone or anything, but just a place to get away. Let the family think they’re being taken off as a punishment if they truly don’t understand, but don’t let your children think that. It’s just meant to be a way to ease the senses.

Also, forget about dressing them up to look good. You seriously have to put away the expectations or opinions, even from family. If they can’t understand that your child simply can not wear those fabrics or collars or what ever, then too bad for them. They’ll just have to talk behind your back. Your child comes first before their attire opinions.

Food

When it comes to differences in Autism, food is a huge factor. You could have thousands of children all in a room and no two of them would have the same diet. Family will never ever listen but it still doesn’t hurt to tell as many people as you can to NOT FEED YOUR CHILD ANYTHING.

It’s a ground rule with my family, they know it now and abide by it but still, sometimes things slip. Just last night even, a family member was going to give my son a rice crispy treat until another family member spoke up and said “you better check with his mom and dad first”. She did. Turns out, it had gluten in it, which Cameron is not allowed.

And that’s the key right there. If you get enough family members on board, someone might speak up in time even if some family members don’t know or won’t listen. It could save you a lot of trouble later on.

You can try to educate as many people as you can but ultimately the best solution is to just tell everyone not to give your children food. They will be so very tempted to spoil your kids, that’s what family does. But hopefully after a Christmas or two, or some right words, they will listen to you.

For us, our family had to actually see my son bouncing off the walls after eating gluten, and witness the radical change in him to understand just how much it affects him and why we are so very adamant about this basic rule.

Presents

Let’s face it, you can’t tell everyone what they should or shouldn’t get you. And telling everyone to just send you cash doesn’t make for a very fun Christmas.

Hopefully if you’ve done your window shopping early enough, as described earlier in this post, you will have the time to send out some ideas to family from your list.

If not, the question has been asked of me if I’d be happy or offended that family tries to get sensory friendly toys for my boys. The answer is, I’d be thrilled. Even if not quite right, it would show me that they actually ‘get it’ and are trying.

That being said, a good general rule of thumb that my wife and I go by is to let them get what they want to get… and keep the educational and sensory presents up to us. After all, who could possibly know better what to get in those departments than us? And what family member wants to get a boring educational toy when something else would look more fun?

In the end, you just have to remember that every parent has a child that gets presents that are just not appropriate, or just too loud, or just simply unwanted… having a child with Autism might make it more likely but it does happen to everyone.

Don’t get offended, don’t make a big deal out of it. Just prepare as best you can ahead of time with family. Give them the freedom to get a wrong present. It’ll be ok. It’s Christmas after all. They only want to try to put a smile on their little faces.

Santa Claus

For the first few years, when your child is 3 – 6’ish, depending on how well they’re adjusting, Santa might be best left to the television screen or in a parade. Let’s face it, to a little child that is unable to look their own mother in the eye, Santa can be a tad… scary. Not so much scary in the sense that you or I think of being scared, but simply overwhelming. Santa is made out to be big, hairy, bright in his red suit and a loud boisterous ‘HO HO HO’… to a child with Autism, and many children in general really, Santa can simply be too much.

That’s when you get those pictures of children bawling their eyes out on Santa’s lap.

Don’t ever think that you’re child is missing out either. Really. Santa is no less magical when you see him on a parade float or performing magic in a movie. Santa is that overwhelming for a reason. Every child loves Santa from a distance. It’s the close up that is iffy.

Sacrifices

In the end, it all boils down to some small sacrifices. You will likely be leaving early before the music gets loud (or the people do), plus, your child likely has a very strict routine making bedtime a necessity. You’ll likely be missing out on a meal or two here or there through the holidays as you stay with your child, or console them, or take them home… you’ll likely be missing out on great presents that are too much for your child to handle, you can’t put up the decorations you really want to, just in case.

It all sounds pretty brutal and if it’s all stuff that you really love about the holidays, then I’m sorry, it will be brutal.

But I would like to think that these sacrifices, even if tradition or you just really want them, they’re small sacrifices to make.

A couple of years without tinsel and you’ll wonder why you ever used it. A couple of years of telling family members not to feed your child and they’ll get it. They’ll likely even learn what foods they can feed them that you gave them last year.

A couple of years and your child will be able to handle the lights and sounds better as they mature, so it won’t be so bad. Their bed time might even be later by then.

If you can avoid a meltdown or two simply by being prepared, getting out earlier than most, educating family, having a plan for safe zones or times to leave….  it’s so worth it. Not just for you but for your dear children. They don’t want a meltdown at Christmas any more than you do. After all, this holiday is for them, the magic is for them.

I would love to hear about tips/tricks that you’ve learned through out the years to make Christmas a little ‘safer’ for those with Autism in your family. Please feel free to share.

Comments { 8 }

School and Fridays and Autism, the meltdowns that end an overwhelming week

By on November 5, 2010 in Autism

My son is now in his second year of school, although it’s really just kindergarten, he has been doing full days and full weeks the entire time. Ever since the very first week, we’ve noticed and recognized a very consistent and steady trend. Mondays are good. Fridays are bad.

anxiety

I'm freaking out!

Most everyone can identify with the build up that occurs all week and is the main reason that we all look forward to Friday so much… 2 days of freedom! Whether it’s school or work, Monday to Friday is a continual build up of stress, nerves, frustrations, anxiety and a whole host other negative feelings.

With Autism, they rate it from mild to severe, high functioning to low functioning, but regardless of where you ‘rate’, the emotional and sensory and overwhelming feelings are all there. And that only makes the Monday to Friday build up that much worse.

In our case, Fridays are almost always meltdown days. Cameron can go the entire week without getting a single time out at school and end up getting 4 in one day, like today… Friday.

Then he gets home and he lashes out at his little brother, he refuses to eat, he does not listen and he even gets a bit violent (pushing and kicking).

What happened from the very happy boy on Monday that gets no time outs to the little monster of Friday?

It’s not his diet, it’s not something in the air, it’s just the build up. Constant attention, constant demands, constant sensory stimulation, constant learning, constant physical activities… more, more, more and and come Friday, he explodes.

I’m open to suggestions as to what to do about this, because all that we do works for a while, but only a while. Weighted vests, short breaks, different foods… there’s not a lot available to us as parents since they’re off at school on their own.

All I do know is that come Friday, there needs to be an understanding from us parents, that there is a reason that they’re like this. Not to let it slide, bad behaviour is bad behaviour. But there is a reason for it and they are struggling too.

It’s up to you to choose the consequences and the punishments but when you do (and there should be some), keep in mind that they’re having a very very bad day already. Help them to over come the bad day, rather than simply add to it.

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Now I lay me down to rest

By on November 4, 2010 in Autism

My wife often suggests new blog post ideas, which is great because sometimes I’m simply fresh out… this time, she suggested that I blog about something that she and I do every single night. It’s just something that we do and have always done, something I never really put that much thought into but after she had the idea that I blog about it, she wrote it out rather nicely:

For me I go into their room before I go to bed (about 2hrs after they’ve fallen asleep) and I talk to them. I whisper encouraging words, tell them what they did well that day, tell them I love them, kiss them and snuggle them back into their blankets. I never ever skip a night unless they are spending the night at my moms or something and I physically can’t. It’s something that allows me to see them in their most precious moments and gives me time to focus on their positives even if it’s been a bad day. It helps me reset for the next day. I started doing this when Cameron was a baby and have kept it up all this time.

It’s true, she never misses a night where as I may from time to time. She’ll even get in there even if I already have. But we both pretty much do the same thing. We both tell them they’re “awesome” or that we love them, we both kiss their forehead or cheek… we both just need to check on them each night.

After my wife mentioned it, I got to thinking about it, and it reminded me of another article I wrote where I explained that I believe a child with Autism takes in a lot more of their environment than a child without Autism would.

Shhh... he's sleeping

Shhh... he's sleeping

I started to think about it, I came to realize that I was putting my own methods into practice… as was my wife. I mean, I’m fairly certain that the whole “play classical music while they sleep” thing works on some subtle level for all children but for those where Autism is involved, I think that they absorb that even further.

We honestly believe that telling him that he is a good boy, that he’s awesome, that he makes us proud, that he did certain things very well… all these things add to who he’ll be the next day and for the rest of his life.

We certainly do not exclude his little brother either, even without Autism. Because he deserves the same attention and love and words of encouragement. He might not take in as much as his older brother, or maybe he does… it doesn’t really matter.

It’s a very small thing, it takes a minute or two, it’s when we have nothing left to do but to crawl into bed anyway, but I think… we both think… that it’s extremely important. That it’s something we must do because they deserve it.

And even if it turns out that they never actually take in a word, that it never does have any effect on them what so ever, it’s still worth doing. It’s still important. It’s important for us, not just to us.

Do you do anything like this? Do you think children can hear/feel these things even though they’re asleep?

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Halloween and Autism, scary for all the wrong reasons

By on November 3, 2010 in Autism

Halloween is meant to be a wonderful time for children, they get to go out for a little while and do nothing but collect free candy from the whole town just by saying “Trick or Treat!”

As parents of children with disorders or disabilities, we know all too well just how difficult this “wonderful time” can truly be.

Too Little Fear

Many children with a disorder, including Autism, have far too little fear when something catches their focus. When magic takes hold and the entire event seems like a dream come true, a child will dart off into a street, jump into the middle of another group or just take off to any random stranger without giving anything a second thought. How could anything bad happen? It’s magic candy night!

Children with Autism have been known to do these things on any given day, much less when there’s lights, sounds, candy, kids and more all around them.

There is a LOT of safety concerns for parents to be aware of and to go over with their children on Halloween as it is, when you mix in Autism into a child’s list of concerns, you quickly become aware of just how much of a hand full this wonderful night might just be.

Some parents choose not to go out at all, which is a shame. But I can understand why. I wish there was some way I could find the extra eyes and arms they need to go it out there safely because it is something that they shouldn’t have to miss out on.

Too Much Fear

halloweenIt’s kind of funny that we have the scariest holiday so close to the happiest holiday but as it stands, Halloween is meant to be scary. It’s meant to be fun as well but the premise is that you scare each other… scary pumpkins, music, skeletons, bats, vampires, ghosts and the occasional over enthusiastic house owner that jumps out at you to scare as many children as they can.

That kind of fear is hit or miss with children as it is but for children with Autism, a good scare can last with them for a very very long time. In fact, many times, it can lie dormant in them and manifest itself later. A child may start having bad dreams or be afraid of going somewhere that reminds them of the place that scared them… and it will be so long after the fact that neither you nor even your scared child will even know why they’re so scared all of a sudden.

Fear and Autism, not a healthy mix in most cases. But again, Halloween is meant to be fun as well. So depending on your child’s age, maturity, severity level and so forth, maybe some fear is better than none, so long as it stays fun.

Just be mindful of what might have a lasting effect and steer clear of those houses if you can.

A Stimulation of the Senses

Like the funner holiday (Christmas, for those of you wondering to which holiday I was referring to earlier), Halloween is a very sensory experience with flashing lights, candle lights, music, mechanized monsters, flowing spiderwebs in the wind, people scaring you, kids walking all over the place, cars driving by or parking and waiting…

There is just so much going on all the time that it’s overwhelming sometimes for the best of us. Especially when you get those neighbours that like to compete, but that’s a whole other story.

The fact is that when a child with Autism walks up to a well decorated house, it’s an overwhelming experience but most will likely do it because it’s new, exciting and there’s candy behind that door. But then you walk away and go to another house that has an entirely different experience, and then another, and another…

How many houses your child can stand that sort of thing is obviously going to be very different with every child but don’t be surprised if it’s a low number. It’s a lot to take in.

Coping Mechanisms

I’m not going to go into all the safety tips and ways to deal with a successful Halloween for two reasons. One, I don’t know them all and two, if I did, it would fill a book.

However, I will tell you that there are a few things that you can do and even a few things that your child will likely figure out for themselves to do that you may need to recognize.

These are some things that happened as my family went out this year.

  • One family member (grandfather) drove along with use in a vehicle. This gave us a place to take our children for a break. Nice and warm, a place to give the senses a break, a way to let their legs relax a bit.
  • Give them a goal. We did a couple of streets and then a street that looped back to the first street. He was able to see the houses on that loop and the end point so my boy could tell exactly how much longer he’d have to get through it. He still asked at every house if we were done but never ever complained when I said “not yet” because he already knew that.
  • Stimming. Yeah, Autism’s favourite past time is something that a child uses to cope with overwhelming senses and in this case, is probably going to show itself in some way or another. In my son’s case, he began counting everything. He counted the pumpkins, the lights, the houses, the cars, the doors… he counted and counted and counted. It wasn’t arm flapping, or spinning, or hitting anything… it was just counting. And it soothed him.

Next Year?

I think it’s important to learn from every experience and as with every holiday, you learn what works and what doesn’t. I ask that you please don’t decide to sit it out though, even though I do understand why you would.

The only way you can learn for next year is to do it this year and skipping even just one year will give you a huge gap in not just understanding what works and what doesn’t, but your child will have that large gap as well in not knowing what to expect, what it’s about or what to do.

A child that never does anything will never be able to do anything. Next year they’ll be older but they’ll still be lacking that experience.

Read up, do your research, ask for help.. even if it’s from school or church, get some extra eyes and ears out there, maybe a community vehicle.

There are ways to do it and there are things to avoid but if you pay close attention to your children, close attention to their surroundings and be prepared, it can go well.

Oh, candy is what comes after and that’s a whole other discussion for those of you on the various diets. I could write for hours about that. But let’s end it here. I hope you had a great Halloween and learned some new things for next year!

Comments { 2 }

Communication, breaking it down

By on November 1, 2010 in Autism Communication

One of the key characteristics of Autism is lack of communication skills but I would argue that it’s more of a communication break down. What that means is that even the most severely low functioning Autistics do have communication skills but suffer from severe communication break downs between themselves and the world around them.

What is the difference? I’m glad you asked!

failure to communicate

Communication Breakdown

A break down in communication is described as two or more individuals or groups being unable to understand each other due to differing styles or methods of communication.

Lacking communication skills implies that a person simply can not communicate at all, with anyone or anything. If you spend a day with anyone that has Autism, regardless of the severity, you know this simply isn’t true.

Let’s break this down further, because those with Autism have symptoms in a very wide range of severity and complexity, I can’t possibly cover every different variation I’ve heard of or encountered, but I hope to give you some idea of what is going on.

For many ‘low functioning’ Autistics, they are communicating with their environment in ways that we simply can not understand. The banging they do, the flapping they do, the circles they spin in… these are all ways in which they’re taking in their environment. Hitting a person, not hugging, not looking in the eye… these are forms of communication that we choose to think of as not communicating at all.

Inside, that person is trying to tell you that they need you, they love you but they can’t get it out to you in the way that you understand it. It’s a break down in communication.

Likewise, you are trying to hug them or speak to them in certain tones or you make a face at them and they don’t understand. They don’t get the sarcasm or inflection, or they don’t notice the eyes rolling that you’re doing and again, you have a break down in communication. Something you say light heartedly may be taken as very seriously, even negatively and they lash out and you are left wondering why they have these random temper tantrums.

What you need to realize is that sometimes it goes way beyond this simple break down into a whole other level of mixed signals. For example, some people with Autism may be seeing colours as you speak. Some of them may taste the sounds or even smell them. Your whispers may come across as nails on a chalk board or your yelling may come across as a fog horn inches from their ears.

Try to imagine an alien life form that comes to Earth and talks in clicks and clucks, just sounds coming from their mouths, and then when you talk they see a blinding light and their ears feel like they’re on fire.

Would you both be lacking communication skills or would there simply be a break down in communication that is very difficult to over come?

As with all things Autism, as I always say, nothing is the same for all Autistics, but this should give you a good idea of just how crazy it can be for one with Autism to try to communicate.

It’s important to remember that they can communicate. They can have the desire to tell you all the things that you want to hear. They simply are unable to get it to you in a way you’d understand. And when they freak out for what you think is a nice gesture or seems totally random, perhaps it’s not.

Unfortunately this won’t solve many problems for you, but perhaps answer some questions.

I write this today, the day of conflicting awareness events. One being Communication Shutdown and the other being Autism Shout Out (ASDay for short), because even though they may be two opposite sides of a coin, they are opposite sides of the same coin. They both have the same aim and both hope to have the same outcome.

It’s all about communication. Not the lack of it but the break down of it. Whether you stop talking or talk louder, you are communicating and that’s a very powerful thing.

Don’t take it for granted when so many can’t find a way to do it the way we do.

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