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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When Lack of Fear Puts Your Child in Harms Way

By on August 10, 2010 in Autism

When you boil it down, Autism can be summarized into a list of mixed signals, whether it be muscle responses, sensory input, language, reading… all that fun stuff. However there’s another level of mixed signals that is potentially dangerous to your child, that you must be absolutely aware of at all times and that is the mixed signals of fear.

Chances are that if you’ve been dealing with Autism for any good length of time, you’ve already heard the news stories about people with Autism just up and walking out of their house and not being heard again for hours, days… even weeks! And I say people because sometimes it’s even adults with Autism that actually have the intellect of a child.

They don’t register fear in these cases, they simply focus on what is on their mind and they go for it… there is nothing else, only their focus. And so they will wander out in search of it.

Now, I’m sure you are like most people when I say this and you picture the dangers lurking in the shadows, like prowlers, animals and so forth… but remember, this is a person that has no fear. None. Nothing but focus. That means that they won’t do the obvious thing like you and stick to the sidewalks and cross at the cross walks. No, these people will just walk in a straight line no matter what road it takes them across. They will walk into what ever building they can find that either is or resembles the one they’re looking for.

But that’s getting to be a bit of a digression from where you probably are, so I’ll give you two ‘close to home’ examples.

Imagine your child is playing in the yard and spots a puppy across the street that he/she recognizes. Or perhaps playing with a ball that is out of control and goes out into the street. This child will run out after it, or across the street to see the puppy! And all the hand holding, and looking both ways practice and caution that you’ve drilled into them for years and years is immediately forgotten as they’ve not abandoned all fears and focused on their target.

You would be surprised at how fast it can happen.

Another example is a very real one which I experienced just yesterday… I took my boys swimming and despite repeated warnings and threats to go home, Cameron still ventured out too far. Now, he had a floaty that went under his arms, also he wasn’t really that far out as he is still only 5… but it’s still something that he should inherently be afraid of. Either drowning, losing control, being stuck out there… something should register and have him asking for help.

Conversely, my 2 year old did go out too far as well (not near as far, he’s only 2 so fairly short).. and he had that look of panic, that desperation “Please come get me!” fear to him.

Cameron did not, and he just accepted that he’d be stuck and have to stay there for ever if I don’t get him…. ho hum.

Now, there is a flip side… as I said, this is a problem of mixed signals. The opposite end of this is where you get to deal with a child that is afraid to go to bed… not because of monsters, not because it’s dark and not because of bad dreams but because he *might* have bad dreams.

Cameron is quite literally afraid to go to bed by himself because he may have bad dreams. I think he’s had bad dreams once in his life, and it didn’t bother him in the slightest for over a year after. But one night, he suddenly realized that he may have bad dreams and it scared him.

At the playground, he gets scared going up the ladder… not when he’s up too high, but when he gets to the second step and isn’t sure what to do with his feet. Tyler, who is 2, climbs right on up.

Now, I recognize, like always, that some children simply are like this… some have no fear, some have irrational fears, some fear everything but again, this is a “many children with Autism experience” type of situation.

Your child may very well be very different from this, it’s not a hard and fast rule much like everything else with Autism. But in general, it does summarize a good deal of Autistic children… and it’s for that reason, even if you know that your child would never put themselves into harms way… you still need to be aware. Because when it comes to Autism, anything could happen.

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Dealing With the Outbursts

By on August 9, 2010 in Autism

Cameron’s at the point where, when he does something wrong, the only thing he knows how to do is shout out the most hateful thing he can think of and stomp off. For example, if he hurts his little brother and we get mad at him, he’ll stomp his feet all the way to his bedroom shouting “Tyler is a stupid baby face!” and slam his bedroom door.

“Stupid” is the most hateful word he knows.

It’s not necessarily an Autism trait as most children will do this sort of thing when they’re mad, but it’s still worth writing about because what does set those with Autism apart is their inability to handle or deal with those strong emotions.

This presents a bit of a problem really because it will grow in magnitude unless contained.. you see, you have to deal with it with all children, naturally, but with Autistics, unless you can really help them to learn how to handle it, you’ll start to see more and more of these outbursts at restaurants, family outings and so forth.

At the same time, you have to know when it’s serious and when it’s not because at a young age, and with Autism… just about every outburst can be as loud and hateful as they can make it, whether they’re mildly upset or furious… it all comes out the same.

How do you distinguish? Do you distinguish? Do you handle them all the same or do you let some instances slide and not others?

Temple Grandin once said “You can not punish for sensory overload” meaning, when a child is totally misbehaving because their senses are overloaded, you can’t punish them for that… they’re already in pain! So when a child is already getting hugely mixed signals and lashing out regardless of whether or not they want to be… do you punish them for it?

I believe in raising my child as I would raise him without Autism… an outburst is not ok… hitting is not ok…  however, if I see that there is a cause for his misbehaving such as sensory overload, change in routine, gluten intake or something like that, I will try to find a more ‘lenient’ way to separate him from the situation, get him into his room without him feeling like he’s bad… something like that.

It’s pretty difficult to keep your patience though, when your child is trying to be as hateful as they can after they were the ones that did something wrong… how do you deal with this sort of thing?

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Autism Community: What is Politically Correct? How do I Not Offend Someone?

By on August 6, 2010 in Autism

This goes along the same lines as my last post, where I feel people need to stop being so childish… how do I talk about Autism without offending someone?

I’ll give you some examples… when I talk about Autism being a source of strength, something to not just overcome, but to master and use as a way to make yourself even better, I get attacked by those who have a loved one with Autism that is unable to speak, hurts themselves, will never move out on their own and never really have a life of their own.

On the other hand, if I try to speak up for those people and help people see just how ugly Autism can be, how stressful and depressing it can be on those who have it and those who sacrifice so much to care for those people… when I try to show people just how much of a disability it can truly be on a life long scale… I get attacked by those who have Autism and use it as a sword to attack us “neurotypical” people who don’t really know what we’re talking about.

Now obviously, I’m talking about small percentages of the over all population, most rational people wouldn’t attack me for doing either as I’m only trying to raise awareness and trying to do so for the greater good of all parties involved. However, there are still those out there who feel I’m making an effort to undo everything they’ve worked to accomplish.

Those with Autism that live on their own should feel proud and should hold their head up high… if they’re proud of having Autism (or Aspergers), then I will join them in telling the world.

And if those who cry more than they laugh because their children will never have a friend, never learn to talk, never be able to go out for a nice quiet meal and so on and so on…. I think they should be allowed to speak up too, and make sure the world hears them when they say “we need help, we need to stop this!”

But how do you do one without offending the other?

I’m not entirely sure there is a way, to be honest…. unless everyone can agree to stop being offending in the first place.

You can be proud of how you’ve learned to use Autism as a strength instead of a weakness, and still feel compassion and reach out to help those that see Autism as a life destroying disability in their own house.

And you can completely hate and feel defeated at what Autism has done to your family but still congratulate and be proud of those that have overcome and used their Autism to accomplish great things and have a good life.

We have enough fighting going on over which doctor is right and which one is wrong, we really don’t need to be fighting amongst ourselves.

The one thing all sides of the coin can agree on is that Autism is a spectrum. That doesn’t just mean several shades of good nor does it mean several shades of bad. It means going all the way from super human brilliant all the way to non-verbal self-inflicting violence.

Anyone being offended one way or another is either not as aware as they thought they were, or they’ve allowed their emotions to hide what is truly important… supporting each other.

I’m sorry if I offend anyone, but I’m not going to stop raising awareness for those too tired or depressed to do it themselves… and I’m also not going to stop being very proud of those with Autism that are doing well in life.

I will not stop if you’re offended that I think Autism is wonderful when it is doing such terrible things to a loved one and I will not stop if you’re offended that I think Autism is truly disgusting even though it’s making some people truly exceptional.

I will not stop.

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Credibility in Autism?? Who Do We Trust?

By on August 5, 2010 in Autism

The funny thing I’ve come to discover while making my way through the online Autism community is that, depending on who you talk to, everyone has a hidden agenda, everyone has something they’ve done wrong, everyone is a liar, a cheat, a fake, a phony and everyone knows nothing about anything.

Don’t go telling me that I’m not right, that you know someone who’s really great or really smart, because for every person you tell me about, I can find someone else cutting them down.

How the hell did it get like this?? Aren’t we all wanting to make our children exceptional? Aren’t we all wanting the same answers?? How did we become so cynical??

Well, unfortunately, this has a rather long history… we have some who call ALL EXPERTS phonies due to their past. As ignorant as it is, they disregard anything and everything they say because 50 years ago, the experts thought that Autism was caused by “refrigerator moms” that didn’t love their children enough. Because of that, here we are 50 years later with people still holding that over their heads, as if they haven’t learned anything since then… as if these 20 year old doctors were even there 50 years ago at all!!!

Then we have the fine folks at Age of Autism who cut down and verbally chastise anyone and everyone that doesn’t fit their anti-vaccine agenda… they even call themselves journalists but won’t cover any story that isn’t anti-government, anti-pharmaceuticals or anti-vaccine.

On the other end of the spectrum (pun intended), we have Autism Speaks that has no one on the spectrum on their board, they have disregarded the vaccine issue all together and have some rather questionable research into certain genetic areas including prenatal screening (meaning that moms could opt for abortion if Autism is detected).

Who do we trust?!?!? Well, it branches out from there for the most part. We have doctors and scientists and experts and parents that latch on to what ever is most profitable or is simply what it is that we want to hear.

That’s where the whole system breaks down. For every single study you can show me, I can show you another study that says the opposite. And so we fight!!!! We bicker and argue like children because we’re all told the information that we want to hear! And we believe it!!

You have a doctor with a laundry list of broken ethics, he’s been disbanded entirely and people still believe him!! And why?? Because he says what they want to hear.. what they believe to be the truth.

Well, why is every other doctor not credible but suddenly this one doctor is??  Simple, he says what they want to hear, it doesn’t matter how many laws he broke, children he hurt, hidden agendas he has or shady payments he got.  They want to hear it, he says it, it’s the truth… and they will fight for it. Did he do all those things? Those who believe him will tell you no, those who don’t will say yes. Who is right!?!? And if I could provide you with absolutely concrete proof one way or another, would you believe me or still dismiss it because it’s not what you want to hear??

Things fall apart so quickly… we quickly go from trusting these experts that are there with our best intentions at heart to not trusting a single one of them because they contradict each other and ultimately let us down by giving us no real answers.

Amongst all those contradictory answers are the ones that we want to hear. No one knows which ones are the truth… NO ONE KNOWS… but we hold up the ones we want to hear like a gospel that is unbreakable and must be told to everyone. We close our minds to opinions or even facts to the contrary and verbally cut down anyone that questions it.

We need to wake up, we need to stop acting like children. Seriously, I’m really getting more and more disgusted the more I read into it. We need people to focus the arguing/fighting time into reading and research time and soak in more information… not to be able to decide who is right, but just to learn! Don’t go looking for ammo for your next fight. Go looking for knowledge for the sake of knowing it!!

Change your mind set people. Don’t close your mind once you hear what you want to hear. Find a study to the contrary, study it and see what the differences are. Find someone that discredits a doctor and consider it and seek out more info. Don’t just dismiss it cause it’s not what you want to hear about your favourite doctor.

Here’s my rule: If no doctors are credible, then no one doctor is. You are not free to just choose one. The moment you contradict yourself to me, I’m done listening and will seek out the information for myself.

Do I think IVF causes Autism? No. Do I think vaccines cause Autism? No. Do I think C-Sections cause Autism? No. Do I think environmental toxins cause Autism? No idea.

Can I be proven wrong, absolutely. I’d love to be proven wrong! Do more studies!!! Prove me wrong!! Please!! Because I am ok with being wrong, especially if it means we finally have answers. Please don’t be afraid to be wrong. Our children are much more important than our pride.

And that is what’s important. Not who is right. Not who is wrong. And your little name calling, fighting and bickering is definitely not what is important. Only, our children, only the answers… and the more you fight, the longer it’ll take to get those answers.

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