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Deconstructing stereotypes

By on November 20, 2010 in Autism

Whether it was the first day of class, first day at a new job, or for any other of the multitude of appointments I’ve had so far in my life, I have always been asked some variation of the following question regarding my last name (Tecpanecatl): “What is that?” My personal favorites were the few times someone looked at me with raised eyebrows and came right out with “What are you?” I don’t believe they intended to be derogatory but that particular question did not deserve a response. Since the name is unnatural to them, they could not help but feed their curiosity with what appeared to be an innocent question. Confused by something new and because they had no point of reference in their mind, they looked for information in order to place me in a cultural or ethnic group familiar to them. Just about everyone feels comfortable when they are able to place people and actions in separate and distinct categories. We have been taught that our actions should meet certain expectations and behavior is strictly monitored from birth. This has created and maintained stereotypes that ostracize anyone that doesn’t fit neatly into any specific category. This pattern of thinking bothers me and I feel it is an obstacle that all autism parents and advocates face on a daily basis.

My oldest son is an adorable and loving 4 year old with autism whose behavior would be considered quirky by those unfamiliar with developmental disabilities. If my name is enough to temporarily throw someone off than I imagine an encounter with my son would turn their world upside down. Telling someone he has autism does not sufficiently explain his behavior. When we are out in public I can see the questions in their stares as my son has a meltdown or starts talking to himself with a type of speech that is not understandable to them. They seem to be thinking to themselves “What is that? What’s wrong with him?” I see their responses and have come to realize that just because more people have heard of autism does not mean they care enough to learn about how it affects a person’s life. Just because my son may not do things the same as other kids does not mean you have the right to judge him or his parents. If people took the time to learn anything about autism and developmental disabilities they would understand why my son may not answer your question (his limited speech prevents any type of conversation), why he refuses to eat certain foods, why he is unable to tolerate haircuts or doctor visits and why he obsessively repeats phrases he hears on TV. These are only a few examples of how someone may label him ‘odd’ without really knowing anything about him. I encourage everyone to spend some time researching autism and its effect on the individual’s development. I read and write about autism because it directly affects my life and also with the hope that we can begin to deconstruct stereotypes that are harmful to those labeled as different. The next time you or someone you encounter falls back on an old stereotype, think about who benefits from that train of thought and most importantly who it is hurting.

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Blogging about our children, use their real names or a pseudonym for privacy?

By on November 17, 2010 in Autism

First off, this is something that has actually be on my mind for a while but it wasn’t until a well thought out post on another blog generated a lot of discussion, including one attack, that I really felt compelled to speak up about this.

Read the blog post here: http://bigdaddyautism.com/?p=1207

PrivacyI am very honest and very sincere in everything I do, especially when it involves a topic as important as Autism. This blog not only has my real name, but it’s the title… it’s even the URL address!

The question is whether or not my son would approve of me using his real name later in life… will he be embarrassed by it? Will others use this as a way of teasing or mocking him?

Autism Advocacy

I write about Autism. This is a personal blog but it’s not my personal blog about our vacations, times we’re sick, going to visit family, etc… it’s not a diary. It’s a blog advocating Autism, or more specifically, mine and my son’s stories and experiences.

As such, I write so that others that read will know that they’re not alone… maybe they’ll even feel inspired, motivated, educated… maybe they will be able to relate to the things I say.

This means that I have a lot more readers that I don’t know than I do readers that I do know. These people will likely never meet me nor my son face to face. But those that do know me will know a lot more about myself and my son than they did previously. But this is a global topic, Autism is simply so much bigger than just me or my son.

Honesty and Trust

A great writer can capture your hearts and your trust by the words they say. Sadly, most of us are not great writers. We’re people, we’re parents… and we’re simply trying to be involved in the community by sharing what we can. Therefore, making you cry, making you trust us, making you believe the words we say are the honest to goodness truth can be quite a daunting task.

I believe that being upfront and honest with my name adds to a reader’s faith in me. That I have nothing to hide nor anything to be ashamed of.

I recently read a new spinoff Superman comic, Earth One. In it, Superman talks to his mother about the costume she made… and asks why there is no mask. Her reply to him is that, with his power, people will fear him. They need to be able to see his face, to see his innocence and honesty so that they can know they can trust him. A mask would only make people fear him more, make them question him, make them not trust him.

I do like to think of my son as a little Superman, but I realize that it’s not great power that he has. It’s a disorder. Even still, his message is a very powerful one and a mask would always get in the way of that message… it would always leave a little doubt.

Shame and Embarrassment

Let’s be honest, you could be the best words-smith on the planet and paint your child in the brightest most noble light and other kids would still try to use it against them in the schoolyard. Teasing and mocking comes from the strangest places sometimes.

If you would like to protect your child from that sort of thing then using a pseudonym is definitely a good way to go. However, don’t think that those children won’t find some other way to tease your children.

I think of it as the old pillow armour, you try to put up all this padding around your child to make sure that no one can ever do them any harm and not only do they still get teased, but they’re teasing them about your pillow armour!

Whether you use a pseudonym or not, if you write from the heart and you write with honesty and good intentions, there is nothing to be ashamed or embarrassed about.

One of the most important lessons in life for every child is to drown out or ignore those that try to mock your integrity. Shielding your child away from having to face that will not help them learn that lesson. They’ll likely have to learn it eventually anyway, so what does it matter if it’s your blog that becomes the trigger?

I can tell you one thing, if one blog post of mine positively affects one other human being, I will never ever have any regrets for posting it, no matter what names or contents I had put into it. I would hope that, later in life, my son agrees with that. If I use his name and someone else’s life is better for it, he should be proud, not embarrassed.

Levels of Privacy

The average person fears the internet a great deal and has every right to do so. There is a lot to fear because really, the world is out there… the best of it and the worst of it. I still know many people who absolutely refuse to use their credit card online yet use it often over the phone. The internet has multiple levels of encryption and security, a phone has none. Hmm…

Unfortunately for all those average people, there are a lot of above average skilled people on the Internet that could find your real name with a little digging in the right places. So the only people you’re really protecting yourself from are the other average people.

If you do take all the precautions necessary and never once enter your name into a computer, then maybe… but only maybe. Because there are still ways to track your accounts back to you.

I don’t mean this as a way to scare you, quite the contrary. You’ve been online all this time and you’re fine, right? I’m still here and I’ve been online for far too long! The thing is, you can be very very very private or only a little bit private. You’ll likely never be completely private unless you really know what you’re doing.

Conversely, think of all those people who offer their children up for the brochure photos, billboards… commercials even! Those people are all still doing alright. I don’t think they’ve had to endure any more school yard bullying than anyone else.

I’m going to guess that you haven’t taken it to that extent but think about those people that have. Their children are REALLY out there. And they’re probably extremely proud to be making a difference. To be the kind, warm and trusting faces that you and I need to see in those commercials.

So Many Reasons

There are so many reasons for wanting or even needing privacy. I can’t even begin to go through them all but sometimes there are legal issues, or a disagreeing husband or wife, perhaps you’re writing about things that are much more personal than just specific Autism related stories… the list is endless.

Then again, perhaps you really are using a pseudonym simply because you don’t want to use anyone’s name without their informed consent, even your own child’s.

Everything I have written in this blog post is my own personal opinion and my own personal reason for making the decisions I’ve made. I understand completely why and how people make their own choices.

I would never, for a second, doubt that someone is very proud of their child even though they hide them behind a fake name. You don’t have to reveal an identity to reveal your pride. You also don’t have to tell us your name for us to believe you or to learn from you.

This is Who I Am

My wife is a very private person, even after joining a forum where all people see is a user name, she still never really opened up to anyone for almost a year and a half. Suffice to say, she was skeptical when I started this blog.

However, she very quickly saw the need to share who I really am and to share my son with the world. I guess I should say, my need.

When you read my blog posts, I don’t write like a doctor, I don’t write like a writer… I write like me. And to use another name is to write like someone else. To pretend to be someone I’m not.

This is who I am, a very proud father. My son is absolutely amazing and I know that so long as I believe that through and through, and so long as I write with honesty and sincerity, those who read it will think that my son is amazing as well.

I can’t even imagine writing something that would embarrass him or make him feel any shame because I can’t think of anything that would qualify. He’s an inspiration to me and hopefully, through him, I can be an inspiration to others.

My Son, Cameron.

Cameron is his name, it is the name I gave him and the name I will never be afraid to share with the world. I do not know what the future holds in store for him but I like to think that what I do now, with this blog or otherwise, that he can be proud of me.

I also hope for a future where, despite still having Autism, he continues to speak out and inspire people with me. That he has a ‘normal’ and fulfilling life but is able to continue raising awareness, continue getting involved with the Autism community.

It’s not a guarantee though. I would never force him into anything in his life. If he isn’t comfortable with that or has no such desires, that’s fine too. I will be no less proud of him, he will be no less of an inspiration to me.

I will, however, make sure that he knows that what I do, what I say, is bigger than just him. That I would do anything for him, that I do everything for him, but also that there are so many out there that need an encouraging word, a little advice.

Conclusion

I’m getting off topic here but the point is, you reading this, is very important to me. I owe you the truth. And the response that I’ve received from readers like you has been astounding.

I honestly believe that the wonderful feedback and support I’ve received through blog would not be anywhere near the same level if I couldn’t be completely upfront and honest with you.

That’s not to say that you or anyone else couldn’t use a fake name and get the same response. It’s just how it is for me. It’s how it always has been for me and always will be.

What’s truly important is that no matter what name you have, no matter what name you use, be honest and sincere. If you speak the truth and you keep the bigger picture in mind, there can be no shame in the future.

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Rewards vs Punishments

By on November 15, 2010 in Autism

Most every parent follows a very obvious pattern, when their child exhibits good behavior, they’re rewarded and when they exhibit bad behavior, they are punished.

The problem with this very basic concept is that it’s rarely ever balanced. In fact, many people fail to realize what a good balance even is. Rather than just suggest to you a percentage to try to achieve, I’d rather give you something else to think about… the consequences of each.

Rewards

Rewards are often thought of as candy, treats, ice cream, a present, video game time, etc… the idea is that your child earns something that they really enjoy for a job well done. What some people fail to realize is that there’s another form of positive reinforcement that has an even stronger and longer lasting effect: pride.

Your children think the world of you, even if it might not seem that way sometimes. In fact, I would argue that your child sees you the same way that a deeply devoted religious Christian sees God. Giver of life, provider of food and shelter, rewarder, punisher, etc… when you think of that level of devotion and admiration, you can see just how incredibly important you are in their lives.

As such, you could shower your child in their favorite candy & toys and still never get even a fraction of the way to how they would feel if you just show them how proud you are.

Punishments

Giving your child a timeout or grounding them is a great way to get the point across when your child does something wrong. The problem is that children are very adaptive and learn to cope with the things they come to expect often in their lives. We’ve all seen it happen in movies and stories, where even the worst case scenarios turn out poorly. A spanking parent or even one that outright beats their child as a constant punishment often loses their effect. The child toughens up and learns to just take it… making the punishment ineffective.

Much like rewards, the most effective punishment is to simply explain/demonstrate how disappointed you are in your child. This is what makes the time outs, groundings and even spankings effective at first. It’s a very clear way of showing your disgust with what they’ve done.

There’s a very real danger, however, of taking it too far. What often happens is that, as bad behaviors increase, the level of disappointment increases as well and parents find themselves saying outright hurtful things towards their own children. Many people think that children are more likely to stop a bad behavior the more they think that you’re embarrassed or disgusted by them. The truth is, however, that they’ll be more likely to repeat those behaviors.

After a while, they’ll begin to resent you, or worse… seek out those forms of attention as it’s the only form of attention they’ll get after a while.

The consequences of each

rewards punishments

Positive = Go. Negative = Stop.

Why am I not splitting this up to discuss the consequences of rewards and the consequences of punishments? Well, the fact is that the consequences of each are the same.

Whether you reward your child with pride or punish your child with disgust, they will forever seek out more of it and it will have a lasting effect on your child’s self esteem for life.

I can’t put it any simpler than that. Your pride will empower your child to continue being a great person, to seek out more pride from everyone around them. Your disgust will act as a beat down on your child, making your child feel like they can never amount to anything, will constantly be a negative person around people and never living up to expectations.

It sounds harsh but think about your own childhood. I bet you can vividly remember times when your parents were very disappointed or even disgusted with you. That very strong emotional response doesn’t go away. It stays with you for life.

Those that can’t remember anything but disappointment and disgust don’t grow up to become rich and famous. There’s no incentive to work hard if they’ll only be met with more disgust. Losing jobs and failing at everything becomes so common that it becomes expected. It’s just how it’s always been. It’s a progression that leads to misery.

Those that are always encouraged continue to excel and do better than they had done previously, as they seek out more of that pride. When you’re proud of your child for learning letters, they try hard to learn how to put letters together to read, because they want you to be proud of them again. It’s a progression that leads to excellence if you nurture it enough.

So what is the balance?

There is no magical percentage to strive for when balancing out your rewards and punishments, but there is one way to achieve it without even putting in much effort. Follow this one simple step:

Don’t forget the pride!

The problem that most parents face when they do have a child that they need to punish often, or when they’re simply too busy every single day is that they forget to show their children the proper pride.

Keep saying “great job!” or “you’re awesome!” even if it’s just to celebrate the little things. Actually, it doesn’t even have to be in celebration of anything. I like to tell my boys how great they are as I tuck them into bed. I either just reinforce the positive or I remind them of the good things they did that day.

Every single time you show your child some pride, there’ll be one less time you’ll need to punish your child… they’ll continue to seek out the positive.

Autism

People with Autism are especially sensitive to this as memories can stay with them from as early as 1 year olds. Those with Autism often struggle through out their entire lives trying to understand what is it they do right and what they do wrong to warrant the reactions from others. Something they do wrong, and get a harsh reaction from their parents, may have been something that they thought they were doing right. This conflicting sense of right and wrong will stay with them for a long time, maybe even for ever.

So your punishment may be right, but the only thing your child takes from it is a life long sense of not ever knowing how to behave.

For those with Autism, you need to be very careful with your rewards and punishments. With every word you say, good or bad, keep in mind that it will be remembered forever, and will impact the rest of their lives.

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Share the Love – Siblings without Autism

By on November 14, 2010 in Autism

One of the main concerns in our home is how to balance our time and attention between our two small children. We have come to realize that there will probably always be a bit of an imbalance between the two since JD naturally needs so much attention because he has autism. Here are a few things we have found that work really well for our family to spread the love.

  • Play time- This doesn’t ever seem to go as planned but it still seems to work somehow. Usually we take a ball and one parent sits with each child while we roll it back and forth. It was suggested by one of JD’s therapists after Gwen decided she was going to push all his buttons to get him to pay attention to her.  It started when she was only 10 months old.  He generally ignores her and she decided that any reaction was better than no reaction and was turning into quite the bully. JD is not always happy about trying family play time but we always try to incorporate some sort of time together if at all possible. It has helped curve Gwen’s aggression to JD because she feels like she is getting some attention from him.  Even something as simple as having JD grab a toy and offer it to Gwen works on some days.
  • Alone Time- If you have more than one child you will understand how different it feels when you are back to one on one time with a child. This stratigy is much easier said than done but we try and do it at night. We will have one parent stay home with one child while the other takes child number two out. We keep it simple and the outings are usually errands that need to be run anyway but the one child really seems to be happy to go alone with just mommy or daddy. The parent at home also makes this a quality time by turning off the TV and just interacting with the child. If JD is the one home we use this time to implement floor time therapies.
  • Parent Time- Taking one child out with both parents.  This one is the hardest for our family to implement.  Often if we have a spare moment where child care is involved my husband and I would rather spend it without the kids.  Alone time for parents is a must!  However every once in a while we will take one of the kids (usually Gwen) on a “date night” with us.  We can focus all of our attention on her and she soaks it all up.

I can only imagine how hard it is to have a sibling with autism that seems to have a different set of rule and will often get more attention.  My husband and I are both middle children from large families so we understand how you can often find imbalance even where there are no special needs involved.  Granted our children are both young and right now this is what works for our family.  We know we will have to get more creative as they get older.

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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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