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

How To Get A Child With Autism to Sleep?

By on August 17, 2010 in Autism

This is something I’ve seen discussed quite a bit lately, it’s a fairly common problem but in various degrees. Some people can not get their child to fall asleep, others do fall asleep but wake up constantly and then others sleep alright but wake up really early. Like all things Autism, the problems are never the same.

I can’t give you an answer that will definitely work for you because there simply isn’t one… all the problems are different, all the solutions are too. On top of that, as I always say, I’m no expert. I can only tell you what has been working for me and suggest you give it a try… but don’t be disappointed if it doesn’t work for you.

Cameron has had a few nightmare nights here and there where he wakes up screaming… even night terrors. He’s also had a lot of nights where he just wakes up and calls for me, or comes to me, or just wanders out into the living room and sits there until he falls asleep on the couch. For a long time, he’d wake up at 5am no matter how tired he was or what time he went to bed.

We’ve pretty much run the gambit of various issues.

The more and more I wrote about how the senses of an Autistic works, the more I started to think about what his senses might be doing while asleep. You see, I believe that sleep does not stop the flood of sights, sounds, smells and even feelings from invading the person’s mind.

Are you watching a movie in the living room while they sleep? Are there cars going by outside? Does light come in from the window? Is there a clock ticking somewhere in the house? A faucet dripping? A pet awake somewhere, maybe eating? Are the sheets irritating the child? Is the bed hard enough? Soft enough?

I think that all of this is easily overlooked because a child that’s sleeping should not notice any of it… but for Autistics, maybe they do!

Going by that reasoning, my wife and I put black blankets up over the windows in his room, no light gets in at all… and then we put in either a white noise system, or the air conditioner (which sounds a lot the same).

So from bed time till morning, there’s no light and the sounds around are drowned out. Keep in mind that it doesn’t have to be loud white noise, just something else to focus on. The white noise is in the room with them, the other sounds are not.

We have not moved on to the sheets yet, mostly due to lack of $$…. but already we’ve seen a huge difference. Cameron now goes to bed on his own, he insists on a bed time story… and then he sleeps soundly until 7, sometimes 8am. The sunrise does not affect him, the sounds of cars and trucks going by does not affect him. He is free to sleep, oblivious to the world around him.

Strangely enough, getting the extra sleep was actually a bad thing, as he seemed to regress for a bit… but after a week or so, we saw a total reversal and found that the extra sleep was a huge benefit and well worth the effort.

I’m not saying that what will work for you will be so easy, but then again, maybe it is. Go into your child’s room and sit on the bed. Really stop and get a feel for the room. Listen for everything. Look at where light may be coming in or even moving. Is there an alarm clock? Imagine your child in there while fully awake and all the extra things they would pick up due to their sensory processing issues.

It’s worked for us so far!

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Are You Willing to Make Sacrifices? Here’s What We Did

By on August 16, 2010 in Autism

Like most parents, my wife and I had a sense of dread the moment we received our child’s Autism diagnosis… his entire future, as well as ours, quickly became very uncertain. One of the biggest was school.

For 2 years, we contacted the school board back and forth in an effort to ensure that our son would have help, would have programs and get the resources he needed to have a fighting chance at a decent education.

For those of you who may be reading that don’t know what it’s like, even a high functioning child with Autism will have a monstrously huge struggle in school without help. The crowds, loud noises, the fear that any child gets, tons of information bombarded on them, the muscle/coordination issues that many Autistics have…. it’s just all so much to deal with. The biggest is the anxiety.

The end result is a child that regresses, goes no where, constantly gets bullied, has meltdowns and so forth. It’s not pretty.

So we battled for over 2 years against a severely under funded education system and as our child approached pre-kindergarten age, we were losing.

In June of 2009, we found a school in Porcupine Ontario Canada… a little tiny side town of a little tiny city (Timmins) way up in northern Ontario, a school named Golden Avenue Public School that had actually won awards for it’s Autism program… and yet, no one had heard of it!

This little school in the middle of no where literally dedicated it’s entire basement floor to Autistic children, where classes are split between severity level rather than age. Also, my son’s class has 8 children in it, one teacher and 3 teacher’s aides! That’s 2 children per adult. Plus, they work very closely with us, doing as we ask, and they send home daily reports and we send reports each morning so that we can stay in constant contact. They even allowed peanuts and other foods not usually allowed in schools anymore because they recognize the severely limited diets that many children with Autism have.

Sound like heaven? It is. But it comes at a price.

As I said, we found it in June. So, with virtually no money (was a spur of the moment decision), we contacted a realtor, bought some paint and supplies, started doing last minute renovations on our house, gave away almost all our furniture and exercise equipment, sold what ever little we could, packed up the rest and moved…. in August!

On top of that, because it was so sudden and we ended up with less than no money, we moved in with my inlaws (my wife’s parents) from August to April. While it certainly wasn’t terrible, you can imagine how defeated you feel having to move in with the parents because you have no where else to go. We were just lucky that they live in the same place as the school that happened to be perfect for our child otherwise, we have no idea what we would have done.

Cameron started school in September and 2 weeks in, we sold our house without even being there. We sold it at a loss. We’re still paying for it now, a year later.

We’re in a town that I really don’t want to be in, it’s a 3.5 hour drive to next closest city (there are other towns but a real city is far), the movie theater here has 4 screens, 2 of which have Dolby Stereo sound, the other two is just regular stereo (that’s right, no such thing as surround sound) and all the other luxuries of the city that I had become accustomed to… not here.

I don’t mean to make it sound terrible here, just that it’s a huge difference for me. It’s not what I wanted nor where I expected to be.

But it’s worth it because I can’t even begin to imagine what life would be like, what my son would be like, if he had gone into a city school with 30+ other children in his class, a teacher that had no idea what Autism even was and was left to fend for himself.

And this is just a drop in the bucket (as they say)… many others make much larger sacrifices and while it’s terrible that it comes to that, it is truly amazing to see how far a parent can go for their children.

I’m in a rental apartment, still paying for the 3 bedroom house that was the only real home that my boys ever knew, in a little city in the middle of nowhere with almost none of the resources/luxuries I’ve been used to for so long… but the alternative was not acceptable. My boys come first… Autistic or not.

If the education system or the government or society in general can’t do what we need from them, then we’ll have to do what we can on our own, what ever the cost.

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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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Interesting Conversation Between Brothers

By on August 13, 2010 in Autism

Cameron, who has Autism, is 5 years old and his younger brother Tyler is 2… he does not have Autism. Tyler never ever wants to be apart from his big brother but Cameron sometimes really needs his space, his time alone.

So after fighting for most of the morning, I suddenly hear this:

Tyler: I want to play with you!!! b’cause I love you!!!

Cameron: No!! I love you too but I do not want to play with you!!”

Now how, as a parent, do you get mad at them for fighting and yet not smile or even laugh when you hear this? Especially coming from a 5 year old with Autism while in the middle of a fight… it’s truly amazing.

Just wanted to share.

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Taking Your Autistic Child Out To Meet The Public

By on August 11, 2010 in Autism

Recently a twitter user @ChrisPbacon286 was in line for a ride at an amusement park when his child proceeded to have a meltdown. He mentioned how some other guy said (loud enough to be heard) “that brat needs his ass whooped”.

Had it of been me there, I’d have replied “Yes, because beating on a child with a disability would make you so much better.” but it wasn’t me and as was discussed, it likely wouldn’t have changed the rude guy’s opinion much. Sadly, idiots are idiots, period.

However, it did remind me of a similar situation that happened to my wife. I couldn’t be there with her but her sister was and they ran into an idiot as well.

I asked her to write it up for me to share with you. She’s a tad embarrassed since she’s not a writer but she’s happy to share, since it’s an important story.

A few months ago my sister and I decided to take the kids out to dinner. She has a daughter (11 years old at the time) and I had my two boys (Cameron who was 4 years old at the time and Tyler who was 2 years old). We went to a local family restaurant that serves a wonderful buffet and offers gluten free pasta for Cameron! It’s one of our favourite places to eat. When we arrived they told us they removed the “children’s” area (a place with booths near a toy area for the kids to play and make noise away from the other diners). So we were seated at a large booth in the main dining area. At the time there was nobody seated behind us.

My niece decided to leave the booth and Cameron wanted to go with her but since I was in his way, he needed to find another way out. So he climbed the back of the booth to try to get out of the booth behind us. I quickly took him out and reprimanded him, told him how inappropriate that was and sat him back into the booth. At the same time the waitress was about to seat someone at the booth Cameron was trying to climb into. I apologized to the couple about to sit down and said “I’m sorry about that.” The man turned to me and said “It wouldn’t happen if you disciplined your kids”.

Now I just need to say that I am a VERY non-confrontational person. I never stick up for myself unless it’s to someone I know very well. I don’t know if it’s mommy instinct or mommy guts or what it was but I stood tall and told this man that my children are VERY well behaved and disciplined and that he should have patience especially when dealing with a child with a disability. He started cussing and got angry and told me to shut the F*&# up.

That is when I sat down and left him alone. Not to back down but because I don’t want to subject my children to any negative behaviours like that. I want to teach them that it’s ok to walk away and not fuel a fire that is already out of control.

My sister had other ideas. She is my polar opposite. She stood up and talked him up and down and they were both causing a scene. This guy’s girlfriend was telling him to calm down and it was clear that this was a usual thing for him and he was just looking for a fight. So finally I talked my sister into sitting down and we finished our meals. The rude guy and his girlfriend left the restaurant without paying their bill.

I was frightened for us, afraid of how much my son could understand and feel, embarrassed for causing a scene and just upset at the whole situation. We paid our bill and apologized to the owner (who we have come to know from our many visits to the restaurant) on our way out.

A man from another table came over to us and said he saw it all and was sorry we had to deal with that. He thanked me for handling it so well and was really pleasant towards the kids. It was nice to have someone say that it was ok and not our fault, but it didn’t make it better. It had happened.

As a parent I don’t even know what the right thing is to do in a situation like that. It could have been ANY kid that was getting restless waiting for his food in a booth. But it happened to me and my autistic boy. But I’m proud of Cameron. He didn’t understand the boundaries of the booth, but once I pointed it out and explained it to him, he never attempted it again. He sat nicely and waited. He learned and listened. I can’t say that about the grown man who attacked us acting out like a toddler in a tantrum.

It took us a long time to decide to eat out again and since we’re extremely limited as to where we can eat out with Cameron (in our town there’s only this one restaurant that offers gluten free options) it made the choice even harder. But we did go back. And when we got there we were greeted by the owner. So many thoughts went through my head when we saw him walking towards us. Fear and embarrassment were the big feelings that I felt. Those few seconds it took for him to reach us seemed like forever. I’m sure my face was red too. But he stood there and said “We’ve opened a new children’s section at the back with safer and cleaner play equipment.” Oy!! So of course the first thing I thought was that they added it because of us. But he went on to say “Do not feel like you have to eat back there. You are welcome anywhere in my restaurant. We know what happened and it was not your fault and we love having you here”. We decided to eat in the children’s section anyway because let’s face it, the kids like it!

I think it’s important to remember that one incident shouldn’t stop you from trying again. That one comment or one person doesn’t make or break what you do every day with your children. A family restaurant is for families of all shapes and sizes and you are welcome there. So don’t let what other people think stop you. We almost let it stop us and we’re so glad we decided to get back out there. How can we prepare Cameron for the real world if we don’t let him experience it with us when we can keep him safe.

Just a quick update, I was just reminded of another incident that just happened, where a man literally punched another man in the neck because he felt so upset about being bothered while eating… at a restaurant, the man punched the father of an Autistic boy because that boy was “too loud”.

You can see an update on this story here: http://www.sun-sentinel.com/news/palm-beach/fl-restaurant-rage-autism-20100809,0,6084633.story

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