Tag Archives | Autism

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!

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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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Communication Shutdown, Why I’ll be online Nov 1st.

By on October 28, 2010 in Autism Awareness

Ok so, I’ve argued with myself about whether or not I’d ever even discuss this topic, much less write about it but today I’ve volunteered my time to be a part of a 24 hour “shout out” on November 1st. It’s for this reason that I think it’s only fair that I explain why. Also, doing so just days before the actual day will help with anyone wondering if I am discussing this just for search engine traffic or so forth.

The Premise

no communication

No Communcating Nov 1st

The idea behind this ‘event’ is that people should not use Facebook or Twitter for the entire day of November 1st in an attempt to experience what it is like to lack the communication ability of those with Autism.

You visit https://communicationshutdown.org/ and donate some money, they send you a program that you install and it will update your Facebook and Twitter accounts to announce that you are not going to be there that day in the name of Autism.

You spread awareness, you experience the lack of communication, someone gets the donation, the world is happy.

Speaking for those that can not speak for themselves

The whole idea of Autism Awareness and Advocacy is that we speak out for those people/children that can not speak for themselves. As such, it makes very little sense to silence ourselves for them.

Also, I’m not even Autistic but even I feel it’s pretty insulting to think that not visiting a couple of websites could ever give you any insight into what it’s like to have Autism. That’s like saying that because you were in chess club, you know what it’s like for children in bad neighbouurhoods to get mixed up in violent gangs.

Not saying anything is the new “what’s your bra colour”

Remember last year when Facebook women started putting their bra colour into their status as a fun little “shhh… don’t tell the boys” game? And after most said it was childish and stupid, they attached the Breast Cancer Awareness mantra to it and suddenly it became a worthy cause to participate in.

The problem was that most of the guys and even a very large number of girls simply never got the message. The problem with “shhh” is that noone knows why you’re “shhhh”ing unless they ask and really, who cares enough to ask? No one.

So this communication shut down will very likely become the next viral campaign that totally went by most people’s attention spans without a second glance until some other day when they caught a news article or someone says something off handed and they go “oh! That’s what that was about?”

Flawed target audience

If this is truly aimed at giving people a taste of what it is like to have Autism, why would I need this? My son has Autism. Many of the people being asked to participate have Autism themselves. Do we really need this exercise to experience it?

It seems to me that this needs to be focused on the general public more than those of us that are already advocates or that already have Autism. It’s a great starting point as we can reach out to more people than they could alone but obviously the approach was flawed. We should have been given tools (banners, ads, market material, links) to prompt readers rather than asking us to just donate like any other person.

Donation Information

So the site lists a rather impressive list of charities/organizations which will be receiving these donations… it even promises that your donation will go to a place that is in your country. This is impressive. View partners.

What is not impressive is that we have no idea who the people are putting this on, nor how accountable they will be. Will we see records and breakdowns of where the money went? Will we get autobiographies of those involved? Do we know what will be funded with the money?

Furthermore, why can’t we just donate to the charity/organization directly and keep on Tweeting and Facebooking? Facebooking? Is that right?

Also, why can’t we just have the program to update our accounts and post about our attempts at Autism Awareness without having to donate? What if I want to participate because it’s a worthy cause and want to get the experience but can’t afford money to donate because we are living with Autism ourselves and could probably use that donation money for our own family?

The Alternative

Some blogs are pushing for an explosion of shout outs, a total opposite to a communication shutdown. They’ve even come up with some tags #AutismShoutOut to use on Twitter to show your support.

To me this makes a lot more sense but shouldn’t this be done in April? Autism Awareness month? Why is this being done in November anyway?

I don’t think I can endorse this approach either really, since it will likely get quite annoying and/or repetitive after the first few hours. But it sure does beat not saying anything. Cause no one will know why and you can’t tell them!

What I am doing

As I said in the first paragraph, I have decided to participate in “Communicate and Educate Speak out and Speak Loudly” 24 hour chat held by http://thecoffeeklatch.com/ on twitter: @TheCoffeeKlatch

I will be co-moderating from the 4pm to 5pm EST hour, they’ve organized that there will be moderators for an entire 24 hour period from 9am to 9am. This means that information, questions, advice, myths, stories and more will be shared for the entire duration.

If this isn’t the opposite to not communicating for 24 hours, I don’t know what is.

And so, I’ve decided that since I agreed to become a part of it, I should explain why I made the decision. Not that I owe it to anyone, but that I feel this decision could raise the question.

My suggestion for you?

I have three.

There’s really nothing wrong with taking part in the communication shut down. It will raise awareness, they will get donations to good charities. If you wish to do it, good on you. You’re doing something great for the Autism Community.

There’s nothing wrong with not taking part in it either. There’s nothing wrong with seeing flaws in the plan and doing the exact opposite. Speak out, speak loud and speak proud. Raise awareness as you see fit. If you do wish to take part in the chat, in which I will be a part of, simply add #tck to your tweets or use their custom chat room which will help you streamline the conversation much easier: http://tweetchat.com/room/tck

Finally, there’s nothing wrong with just going about your day as you always have. Talk Autism, talk sports, family.. anything and everything. You are involved already, you’re already doing your part. Feel proud in that. You should.

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My tips for using FollowFriday effectively on Twitter for Autism

By on October 22, 2010 in Autism

FollowFriday is a Twitter tradition whereby, every Friday, people ‘recommend’ other Twitter members to follow. For example, if I put #FollowFriday (or #FF for short) and the name of a Twitter member, that means I recommend that you follow them too.

I put quotes around ‘recommend’ because it’s evolved to become more of a ‘shout out’ thing, where I’ve noticed many people just list celebrities/influential people, or friends/family.

If you are involved with Autism in some way, I want you to hear me out because from here on out, I refuse to give shout outs… and I really don’t want to offend anyone along the way.

Autism, like any other cause that we believe in, is very important and very serious and it’s for this reason that, even though I happen to be quite proud of my sense of humour and ‘go with the flow’ nature, I take some things quite seriously. This FollowFriday tradition is one that I’m going to take more seriously from here on out.

follow friday

#FollowFriday or #FF

The Real Value

There is a great site (FollowFriday.com) which actually ranks people based on the number of FollowFriday mentions they get. That’s not what is important. What is intriguing, to me, is that they do NOT count anyone’s mentions if they mention more than 50 people.

The reasoning for this is quite brilliant, in that, if you are recommending more than 50 people to follow, you don’t really mean it. You could have a million people in your list and you should still be able to narrow down real genuine serious recommendations for others to follow to less than 50.

This gives your recommendations value. REAL VALUE.

If someone recommends 3 people to follow, and they have a list of 20,000 people… those are 3 very special people! Wouldn’t you agree? They have a lot of value to be singled out and displayed to the other 19,997 people.

If they were just 3 people included amongst 50 other mentions, their value not only diminishes but disappears completely since not one single person on the entire Internet would sift through your 50 mentions and try to find the ones of real value.

In the case of Autism, or any cause, this is especially important and critical. If I go recommending 20 people that are funny and 5 people that are genuinely great information sources on Autism, the message will get lost and the value gone.

Making your choices mean something

It all comes down to building a stronger community, that doesn’t mean that I intend on excluding people. Don’t get me wrong. I would love to FollowFriday my entire list but I know full well that it will mean getting NO CLICKS instead of more. As I said before, not one person would spend the time weeding through the mess to find the value. And so, it would accomplish nothing.

Carefully selecting the truly worthy members of your list and recommending those few will ensure extra exposure, added value and more follows which will help to build a stronger and even larger community.

It is for this reason that I have decided to drastically cut down the number of FollowFriday mentions that I will make each Friday. I really do not wish to offend anyone by not mentioning them.

There are simply far too many people that I actually do want to mention. But I can’t or else I do more harm than good.

Some tips or guidelines, not rules

In summary, I have made this list of tips for effectively using the FollowFriday tradition in regards to the Autism community:

  1. Limit yourself to a finite number of people each week. Maybe 10? 20? Lower if possible. And stick to it. It forces you to be extra picky.
  2. Make lists, use them, one per week. Lists such as parents, charities, information, merchandise, etc… you can visit one list each week and pick the top members from them to FollowFriday. This way, each week you feature categories of members, allowing you to cover more people over time since you likely won’t repeat a mention for several weeks.
  3. Keep a notepad txt file on your desktop and keep tabs on someone you’ve noticed with really good information, especially inspiring, good blog posts, etc for that specific week. Give that person a mention that Friday. They’ve worked hard, they deserve it. Erase after and start it fresh on Saturday.
  4. Pick people that your followers would be genuinely interested in. Not just family or friends. They might be upset that they recommended you and you didn’t return it but if you want this to actually mean something more than giving a friendly shout out, they’ll understand.
  5. FollowFridays don’t have to be Friday exclusive. It’s nice to be included that one day, but it means even more to get a random “Wow, you really have to follow @twitter_member, they know a lot!”. It means more to that person, it means more to your followers.
  6. If you are making more than one tweet for your mentions, include a one-two word descriptor to tell people who or why you recommend them. Most of my FollowFriday mentions look like this: “#FF #Autism Charities: ” or “#FF #Autism Parents:”. This allows people the ability to sift through them and look for the people they’re most interested in.
  7. It’s not a competition! People put value on the # of followers that a person has but I’d gladly put my 1000 followers up against someone else’s 10,000 because almost all of mine discuss Autism. This gives my followers a lot of extra value to me. They mean everything to me since Autism is my world (at least on Twitter anyway).
  8. Since it’s not a competition, don’t use those #FollowFriday list building tools. Some are clever and try to find others that you’ve mentioned a lot or that have mentioned you a lot… but they can’t really judge true value. They can never replace your own ability to place a desire to share a follower with the world.

Think about it as a party and you’re making introductions. You don’t introduce random people to random people and you don’t introduce a person to other people when you know those other people won’t really want to meet them.

You introduce someone to people when you think they will have a mutual interest in each other.

So introduce me to someone that you think is someone that I’d want to follow and I’ll follow them. But don’t throw a ton of names at me because I won’t remember their names later.

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