Archive | April, 2012

Our autistic child’s first sleep over

This post was written by my wife, Natalie, and editted by me, Stuart. This is, in her words, how Cameron’s very first sleepover went and how she handled issues when/as they came up.

sleeping

We autism parents envy other parents for a lot of reasons. One of the biggest reasons can best be demonstrated by… the sleep over.

We all want our children to have them. Autism parents have to wonder if it’ll even be possible though. Depending on where our children are on the spectrum, it might just not be a possibility. For those with children who are ready for social play, sleepovers are possible but they’re still not without their challenges.

As a parent, there are a lot of questions that come up with this subject; Is my child old enough? Will his routine be followed? Will he need me for anything? What if he’s up too late? Should the first sleep over be in our home or at a friends? And the list goes on.

We are very lucky with Cameron. He has friends, he can communicate quite well and can even be social (albeit awkwardly, but still social). This particular friend just loves him and does not see Cameron’s autism as an issue for their friendship. We cannot begin to tell you how blessed we feel to be able to say that!

But with all that being said, a sleepover between a neurotypical child and an autistic child (and let’s not forget the little brother too!) has its challenges.

Concerns

A sleepover is a time of excitement, yummy foods mommy usually doesn’t allow, staying up late, pillow fights and tons of fun. That can be over stimulating for any child. It can cause a child to become hyper active or even careless. But in the case of an autistic child, well most of you know it can turn ugly, very quickly.

Tantrums, stimming, screaming and hitting are just some of the issues that can come up.

So how do we, as parents, prepare for an event like this while still keeping it as normal as possible? I need to pause here and explain what I mean by “normal“.

Cameron will read books, watch tv and hear stories about holidays or things like sleepovers and based on those, he will have a concrete set of rules for how these holidays and events should be.

Before we even broach the subject of a sleepover, he already has a list ready of things that need to happen from what he’s seen and read. So changing out something, like popcorn for a fruit snack, would be completely out of the question.

The sleepover: Before bed

We decided the best approach would be to have the friend stay with us for the sleepover, rather than have Cameron sleep out. Special diet, routines and techniques to ease Cameron’s anxiety are too much to throw at another parent for one night.

When Cameron’s friend showed up, Cameron (and Tyler) greeted him happily at the door. They watched a movie, played games and with toys, had time for a video game (Mario Party 9 was a big hit) and enjoyed some yummy snacks (popcorn).

So far, so good! No meltdowns and everyone was getting along and playing nicely. A huge success all around.

The sleepover: Time for bed

We set the boys up so that all 3 could sleep in one room. Cameron was in his bed, his friend was in Tyler’s bed and Tyler was on the floor, using couch cushions. All of the boys were tucked in for the night and going well.

We got that wonderful feeling of relief when we were able to put our feet up and call it a success.

However, that feeling did not last long.

His friend kept calling us into the bedroom saying things like “Cameron is too noisy!” and “Cameron won’t stop talking!” I knew what the problem was, but I wasn’t quite sure how to address it.

You see, Cameron has to “stim” before going to sleep each night. We’re not sure why exactly, he just needs it. Either it settles his mind, or he just needs to get it out of his system… we don’t see the harm in it so long as he sleeps.

If I took Cameron out of the room would the friend be upset? Would Cameron be upset? Would they sleep?

I asked Cameron to come out of the room and talk to me. I talked to him about falling asleep in our bed and then later having Daddy put him back into his bed. That way he can still wake up with his friend in the morning. I also asked the friend if it would be ok for him to fall asleep with Tyler and not Cameron.

Everyone agreed! (a miracle right?)

I explained to Cameron that stimming before bed (which he does every night, no exceptions) was ok, but it was keeping the friend awake. If he sleeps in our room he can stim as long as he needs to.

We’re lucky to have Tyler. He often acts as a buffer for Cameron, helping him in ways I’m not even sure they notice yet.

Going forward

In our case we were able to reason with Cameron, talk out the situation and come to a solution together. We’re very lucky to be able to do this with a 6yr old, especially one who is autistic

We now know what issues may arise if Cameron were to ever be asked to sleep out of the home. We’ll know what to expect and how to prepare the parents.

Don’t be afraid to let your child try new things. Sometimes it may not go so well while other times they may surprise you! But you won’t know what your child is capable of if you never let them try.

We were pleasantly surprised and will now be even more prepared for the next sleepover.

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My son is becoming a “low talker”

seinfeld "low talker"

Seinfeld: "low talker"

If you’ve ever seen the episode of Seinfeld, where he dates a low talker.. you know immediately what I’m talking about.

For those that haven’t, let me give you a run down of the situation.

Cameron LOVES his video games. Some would say obsessed… but he has proven to be able to live without them. He can spend time at the cottage without video games and even here at home, he only gets to play during the week-ends.

Still though… he loves them so very much that generally, it’s all he ever wants to talk about. On the drive in to school, he tells me all about the levels he has to beat and how to beat them. He describes the actions that characters can and will most likely take. He recounts entire levels that he’s played previously… even though I was there playing with him.

He’ll tell me, his mom, his cousin… anyone. He talks and talks and talks.

Now, if you know autism, you know that many children with autism never do learn how to talk. They may or may not find other ways to communicate but talking just isn’t one of them for some people.

I know this and I’d never want to discourage my boy when I know not take this sort of thing for granted. Still though… how many can you listen about Mario or Sonic? A day? A week? Months? Years?

So anyway, even if we don’t ask him to stop, he realizes that we’re not nearly as interested. He knows that we’ve moved on to other things or are simply too busy doing other things to really pay full attention to what he’s telling us.

As a result, he’s slowly becoming a “low talker”. What I mean by that is… he continues on talking about video games, but he does so quietly, not really to himself, but such that only he can hear it. So he’s still telling us, or anyone, but no one will ask him to stop… people can go about doing what they’re doing while he’s talking… he doesn’t interfere with them.

There have been times where he’d talk about a video game for a solid hour, as if talking to himself, only… he’s actually talking to someone. He just doesn’t care if they’re listening or not.

Everyone in the house is aware he’s been talking away for an hour. Everyone knows what he’s talking about. But no one can hear the words he’s saying. Not even the person he’s talking to.

On one hand, I’m impressed because he’s found a way to continue on without bothering anyone. On the other hand, will this behavior be looked at positively by others later in life?

As I said, I don’t want to discourage him from talking about the things he loves either.

For now, he’s found a solution that works for him. So I’m more than happy to let him keep going with it.

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The top 30 autism spectrum blogs for 2012

It was just about this time last year when Babble.com contacted me to tell me that I made it into the top 25 autism blogs for 2011… it was quite the shock! I was 21 out of 25.

Well, here I am, once again being shocked as they include me into their now updated list of top 30 autism blogs for 2012! This time, I’m 26 out of 30.

Which is a bit humorous because if they had kept their format and stuck with 25, I wouldn’t have made the cut. So thanks Babble for extending the list!! Oh, and whom ever is 31….. SORRY!

I’m not sharing this list to gloat, it is nice and all but it still doesn’t get me that cherry red corvette I’ve always dreamed of.

Instead, I’m sharing this so that you can check out the rest of the list! Go and read, bookmark and enjoy!

It’s Autism Awareness Month so venture hense forth and become aware of some other great blogs!

babble autism spectrum blogs 2012

Click to see full list

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My two boys and their thoughts on autism

Cameron, 6 with autism and his little brother Tyler, 4 without autism, both know that Cameron is autistic. They both know that he can do some things better than Tyler and that Tyler can do some things better than Cameron.

They both know that Cameron doesn’t react well to gluten.

Aside from that though, they don’t see what the big deal is.

They’re kids. They play with their toys, they watch cartoons, they love McDonald’s PlayPlace… and they have their separate loves too. Cameron loves video games and books/stories while Tyler likes arts and crafts.

But really, autism isn’t what separates them nor is it what brings them together. To them, it’s just autism.

And really, isn’t that how it should be?

I asked both of them to tell the world what they think about autism… Cameron answered first, then Tyler, being the adorable little brother he is, basically mimicked his older brother but with his own little spin on it.

Cameron:

Tyler:

Sure they’re little and have a lot to learn but for the most part, I think they have it right.

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A funny thing happened on the way to an autism discussion

I have two boys, one with autism and one without. I happen to think of them equally most of the time and I tend to also talk about them equally.

This sometimes leads to some confusion when I tell everyone that “my son did” something.

And it doesn’t mater what I say he did… it could be the most polar opposite thing that an autistic would do and someone will remark about how their autistic child does that too.

Seeing autism where there is none

These are usually parents but even sometimes autistics themselves who will relate to my younger son, the one without autism. Sometimes it’s understandable, as he may be doing something characteristically autistic, such as shying away from others/crowds, having a meltdown… these things sometimes make me wonder too. Truth is, he’s clearly not autistic. It wouldn’t take you more than 5 minutes with him to see that.

At first it was kinda funny and I’d be sure to explain that I’m not talking about my autistic son… but then it happened more and more until finally I was having full conversations with people about how much this happens to other people too.

Sometimes the mistake is understandable, sometimes it’s a stretch and other times it’s like… there’s just no way.

Setting up the assumption

In a way, it’s a bit leading to begin with… I mean, you’re in the autism community, talking to others in the autism community, in their mind, they’re already preparing for an autism discussion. It’s hard to switch modes once you’re in that frame of mind.

My name in most places is autismfather. So when someone sees my name, they assume that I’ll be talking about an autistic kid. It’s pretty much a given.

This can “direct” the conversation right from the get go. I get that. Still though, I can try as hard as I can to make it clear that it’s not my autistic child that I’m referring to and still get a response about how they can relate due to their own autism situation.

Cameron and Tyler

Cameron and Tyler

Not that I’m complaining

The thing I’ve come to realize is that it’s not really a bad thing, it’s a great thing. The more a typical child can be mistaken for an autistic child, the better. Because it means that the lines are blurring. Even if it is still mostly within the autism community rather than the rest of society.

It’s still a bit comforting to know that my children’t aren’t so different. That I can talk about either, in most situations, and no one will be able to tell if I’m referring to the one that has autism or the one who doesn’t.

Is that how it is for everyone? No, most certainly not. Some people have children that are unable to speak or “function” as would be expected for their age… and so the signs are much more pronounced.

But for me, it’s great to know that Cameron is doing so well that I could mention something that he or his brother are doing and most people wouldn’t be able to tell which son I’m talking about.

It doesn’t make Cameron any less autistic nor does it make Tyler any more autistic, they’re still very different from each other and still both with their respective strengths and weaknesses… but there’s enough of a similarity there that people are unable to just know which one I’m talking about.

And in a way, that gives me hope for the future. For both of them.

Because Cameron is far better off if he can be confused for his brother and, even though some people that think negatively towards autism may disagree, I feel that Tyler is actually better off if there are some ways that he can be confused for his brother too.

Feel free to think he has autism. Feel free to see autism where there is none. I don’t mind at all!

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