Tag Archives | Autism

The dangers in trying to define the “face of Autism”

By on December 16, 2010 in Autism Awareness

I’ve found over the years that the real trick in raising Autism awareness is in describing what it is to people. It’s such a diverse and complicated subject that we can find that we end up contradicting ourselves, confusing our listeners or worse, simplifying it (dumbing it down) so much that it really doesn’t do it any justice.

In my opinion, ‘spectrum’ isn’t nearly vast enough to explain all of what Autism can encompass… perhaps Autism Universe Disorder would have been more accurate. I actually read one time where some doctors said that “cloud” is more accurate than “spectrum” since it suggests a 3 dimensional range of possibilities.

Anyway, I digress…

The real problem with it being so varied is that for most of us, our own loved ones (usually children) are our point of reference. We watch the movies, read the books and do the research but the one we care about, right in front of us, is the true face of Autism in our world.

From there, we branch out to become supportive of each other, to share stories and advice and prove to be quite successful in that endeavour but ultimately we all eventually find that one person that sees Autism in a very different light than we do.

Whether we find our children to be amazing people with limitless potential or we see our children as being extremely low functioning victims of a life long paralysing disorder… we’ll find others out there that see Autism quite differently.

The real danger in this is that one will feel pity for the other, or resentment, or jealousy, or… well, you get the idea. A conflicting opinion of something of such epic importance in our lives can make for a very heated discussion if not handled with care.

To illustrate this point, I bring up a well known video that Autism Speaks once produced, where it tried to paint a picture of what Autism is.. giving it not just a face, but a rather eery voice:

httpv://www.youtube.com/watch?v=HDdcDlQVYtM
http://www.youtube.com/watch?v=HDdcDlQVYtM

Now, if you have a child that is doing well with Autism/Aspergers, or you have Autism/Aspergers yourself, you will likely be quite angered and even offended by that video. However, if you have a child that is severely low functioning due to Autism, there’s a good chance that it strikes an all too familiar chord with you.

The real tragedy in this video is that it ever tried to put a face on Autism in the first place.

The good news is that for some of us, myself included, hard work can actually help you go from agreeing with that video to not agreeing with that video as your child progresses… my son, Cameron, went from non-verbal at 2 years old to being one of the brightest and most social in his class at school.

You see, 3 years ago, I would have watched that video and understood quite well what they were attempting to do… but today, for me, this is the face of Autism that I see:


http://www.youtube.com/watch?v=zrbtWr6oVf0

I do my utmost best to not offend people as I understand how hard it can be if your child is unable to talk to you or show that they love you but I can also understand if your child is memorizing Pi to 20,000+ places. It’s a very wide spectrum… a universe wide!

The next time someone asks you what Autism is, do your very best to explain it clearly, concisely and without bias. Not for my sake, but for your own as well as the people that might hear/read what you say.

Our children are not a victim of a scary voiced predator nor are they endowed with super powers making them superior to the rest of us. But they are somewhere in between… and it’s a pretty big space in there.

The face of Autism is as unique as the face of the person that you see it in.

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A calm talk with my son about rewards, consequences and his behavior

By on December 13, 2010 in Autism

As I have written about before, Fridays tend to be the worst day of the week for Cameron, every week he goes to school, deals with his little brother, has to deal with us parents and come Friday, his behaviour becomes a real issue.

This passed Friday was no exception, he woke up in a bad mood, being defiant and talking back to us in regards to just about everything. A simple request such as “Cameron, can you please put on your socks?” was met with him yelling back at us “No! I not go to school, I not put on my socks!”

ScreamingThere’s only an hour between his wake up time and the bus arriving but his defiant, lashing out behaviour was more than enough for me to send him to his room long before the bus arrived. He continued to yell back at me from the room.

I waited for only a minute before calmly walking in and sitting next to him on his bed.

I said to him “What good does it do for you to behave bad like this? Will it make me want to give you treats and let you play games?”

He shook his head “no”, without saying a word.

I then said “Today is Friday, which means that tomorrow you have no school. Do you think you’ll get to have lots of fun tomorrow by being really bad today?”

Again, he shook his head “no”.

I continued “Do you think I’d be happier and want to do more fun things with you this week-end if you were a good boy?”

He nodded his head “yes”.

Along the same path, I said “do you think being good at school today will mean having more fun this week-end?”

He nodded again, “yes”.

This was important, because without having ever said a word, he agreed with me that behaving good means having more fun, getting more rewards. He also recognized that behaving poorly meant getting less treats and less fun.

So finally I asked him “are you done being grumpy? Do you want to try hard to be good now so we can have a good week-end?”

He nodded “yes”.

We left his room and continued to get ready to go outside. While getting his snow pants on, he finally spoke, saying “Dad, I’ll be good today, I promise.”

Sure enough, he came home from school with a big smile, telling me that he had no thinking chairs (time outs). I checked his book (from his teachers) and they said that he must have really turned it around because he had a really great day at school. He listened well, he participated in everything and had no time outs.

Now, I recognize that this won’t change things for the rest of his life but it’s a huge breakthrough, one that I know can be repeated. He’s proven to me that he understands the consequences of his actions, even the ones he has little control over, such as his meltdowns.

And while he will still lash out and be defiant, at least now I know that I can work with him to get through it.

It’s hard sometimes, as parents, to stay calm and try the ‘logic’ approach rather than just letting them stay in their room for a while “to think about it”. It’s especially hard if your child has Autism and you have no way of knowing just how much they understand or can process. But it’s still worth trying anyway because you may just be pleasantly surprised… as I was.

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5 things to tell every parent right after their child is diagnosed

By on December 8, 2010 in Autism

Learn, Learn, Learn, Learn, Learn!!

What? Oh, you expected an intro and information and conclusion and so forth… right.

Recently AutismSpeaks asked on Facebook and Twitter what 5 things that people would tell parents right after their child was diagnosed. Even though there was hundreds of really great answers, I found that you could boil them all down into one fundamental response… “learn”. Every answer involved the parents having to learn one thing or another!

So having boiled it down to one answer, which encompasses them all but is still a little too vague entirely on it’s own, I will broaden it out to answer the original question: what 5 things would you tell a parent right after their child is diagnosed with Autism?

1. Learn what Autism is.

LearnThe scariest part of getting the diagnosis is that most of us really don’t know what Autism actually is at the time and so our minds start racing about all the things that must be wrong with our children and all the ways their future is going to be impacted. We start going through our memory files trying to think of every single thing we’ve ever learned or heard about relating to Autism.

The only way to really conquer a fear of the unknown is to learn about it. Don’t bother yourself with causes and cures, just learn what it is. Talk to your doctors and also hit the information super highway to learn how Autism affects people. As you learn the signs, symptoms and effects it has, you’ll begin to recognize them in your child. It’s the first step to learning how those symptoms are treated.

2. Learn What Services Are Available To You

This has to be your second step because early intervention is the key to helping your child overcome Autism and live a productive life. Unfortunately, not all treatments/therapies are covered for you, not all are free, not all of them work, not all of them available to all people and many, especially the good ones, have a rather long wait list.

The sooner you find the best places to go for help, the sooner you can get in the door to talk to them. It may be months or even years down the road so you have to find these places ASAP.

Also, some places will take you but not until after you’re approved for funding, or some other stipulation and again, applying right away means you get the paperwork done faster.

3. Learn the treatments, therapies, diets, etc. yourself

If you’ve done #1 and #2, you’ll find yourself quickly thrown into terminology hell with abbreviations thrown at you from every direction, including ABA, IBI, GFCF, IEP and on and on. You’ll learn them as you go, don’t stress out over it.

It’s very important to remember to take notes all along the way!

Some of these things will work brilliantly for your child and some will not. The very nature of Autism is that no one solution works for everyone.  So you may need to keep track of the results of each attempt so that you can tell what is and what isn’t working.

More so than that, many therapies are effective but so very limited. That is to say, you may have speech therapy appointments once a week which help a lot, but how much more would it help if it was daily instead of weekly??

Ask for notes and information on how you can continue the work at home. Ask for books or copies of what they work on that week so that you can reinforce the work.

If it’s a nutritionist, ask for a list of essential foods to try for, ask for suggestions on how to get a picky eater to eat the things they have to instead of just what they want to.

Never just expect a professional to do all of the work for you. They are professionals but they can only do so much because it’s not just your child that needs them. However you are not them. You can devote your time to one child far better than they can. But you’ll need the information and tools to do it.

Also, maybe one day you’ll meet another parent along the way that is really struggling and can’t get the same help you did, and you’ll have all that information for them to be able to use if they have to!

4. Learn where the support is.

The one good thing about Autism being everywhere is that there are so many people out there going through similar situations. Someone you are going to deal with will likely have some information on how to get involved with a support group, whether it’s your doctors, therapists, teachers, nutritionists… what ever, keep asking them all if they know of any.

Do not be shy.

Children with Autism are extremely diverse and you’re very likely to find parents that have children that are extremely low functioning, some that are high functioning, some that have had made great progress in getting their children developing and even some poor parents that have had their child regress.

They all have information to share and support to give. And they all have had to start at the same place… scared of the unknown. So don’t feel you don’t belong because you have nothing to share yet. You will, in time.

Also, remember that the Internet is there to help out. It can be daunting at times, all these people from all over the world that you don’t know but they’re real people and will help you just as much as a person face to face can. In fact, you will likely find a much larger support group online since you literally have the whole world at your finger tips. Twitter and Facebook groups/pages are a great place to start but there are also many forums and such to find.

5. Learn to be a super hero

That sounds a little strange but when you think about it, a super hero is compassionate, patient, strong, capable of doing amazing feats… that’s going to be you. In time.

I used to enjoy reading comic books, especially the early stage comic books where the hero has to learn what it takes to be a hero… and I find that it’s very similar to what you’re going to go through.

You’re going to learn to be far more patient than you ever thought you could be. You’re going to learn that all those children you thought were being bad actually weren’t. That they really wanted to be good kids. You’re going to learn that all those “weird” people that seem extremely socially awkward really aren’t that weird after all. You’re going to stand up and make sure that people are treated far better than they have been, when before you might have let it go or just said something without getting too involved.

On top of all that, unlike most parents that are forced to become doctors, psychiatrists, chauffeurs, banks and so forth, you’re also going to have to become a researcher, scientist, psychologist, therapist, nutritionist, supporter, event manager and even more.

It sounds pretty daunting actually, but the good news is that even though it does happen pretty fast, it’s still not over night. You’ll tackle each step as it comes along the way.

But in the end, so long as you never give up and you keep in mind who it is that you’re doing it for… when your child grows up and becomes capable of far more than what people told you they could do way back when they were first diagnosed… you’ll be a super hero.

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An ode to the single parent

By on December 4, 2010 in Autism

I’ve known a lot of people that are single parents. Actually, I think these days, we all know quite a few. It’s a very sad fact that marriages are breaking up more frequently than ever… with or without children. I’ve known some single parents that seem to just continue along as if they never lost their spouse and then I’ve known others that simply fall apart and can’t handle it.

Being more involved in the Autism community lately, especially through social media such as Facebook and Twitter, I’ve encountered even more single parents that don’t just deal with the every day parenting issues but with much larger issues… special needs children.

In them, I see so much turmoil, so much despair, so much anxiety…. and so much strength.

I’m getting ahead of myself, but when I talk to single moms (there are so few single dads, and with good reason), I am often talking to them about how they wish they could find a man, or had a man that would do the things that I think of as just every day chores, every day average things to do… such as dishes, laundry, cooking.. even playing with the kids.

You see, often times there are single parents living with a husband or wife. In those cases, the mother (or father) is doing all the parenting while the other person has little to no involvement. Yes they have a spouse, but they’re still a single parent. And to those who live in a marriage like this, I write this to you as well because you deserve to know this too.

I like to help out around the house and I really love to play with my boys. And when I share these things, I often hear words of envy or even sorrow from single parents that really makes me sad. Yes, because I feel bad for them but more so that they should consider me above average or ‘unusual’ in that I do all the things that I really think that should be what average men do.

Those people often say how they need to find someone, they need someone to help them… they can’t keep doing it alone. My response, usually, is that I disagree… I think they can keep doing it alone. Not that they should have to, but that they can because they are.

single parent

Single Parent

As a parent, I know how hard parenting can be.. as a parent with a child that has Autism, I know how hard that can be. And when I think, that even if I very generously gave myself a 50% in the ‘holding my own weight around here’ category, that’s still only HALF of it all and I would be the first (if not me then my wife certainly!) to tell you that 50% is more than generous. I do my fair share but my wife is the true rock of the family.

To stop and think, even for just a moment, what it would be like to take on 100% of it, is almost too much to comprehend. I simply know, completely and truthfully, that I could not do it. I can say, with absolute honesty, that I couldn’t do it.

Don’t get me wrong, I love my boys to death and I’d do anything I could for them but I know my limitations. I just can not juggle parenting and work and special needs issues and everything else entirely on my own. I’d hit a breaking point eventually.

Here’s the thing… I think it’s safe to say that I speak for the majority of people out there. Most people, with the state of the world as it is today, could not handle being a single parent. And earlier I said that there are so few single fathers, it’s not that I am saying it’s not possible, but I think that men are simply less capable of doing it then women are.

What I’m trying to say is that these women, and some men too, that tell me that they need help, they can’t do it anymore… I see them as the true inspiration, the true warriors. They don’t need help, they want help. They can do it because they have done it and are doing it now. Some help would make it easier, some help would give them a much needed break but even if they never get help, I know full well that they’ll continue on being a great single parent without it because they’ve already proven they can.

We all have our failures, and sure, a single parent may have more than a co-parent might… but the successes they have are theirs alone. Think about it… toilet training? My wife and I were a team… racing to be in there at a moment’s notice. Doing that alone? Sure, we could have, but it would have been far more difficult. Late night illnesses, temper tantrums, refusing to eat, sporting events, first dates…. oh the list goes on and on. But you are reading this, you already know the extent of the list just as well, or better, than I do.

Single parents have tackled these things all by themselves and do not look forward to having to tackle the next ones… because they will be very hard to do all by themselves, but they’ll do it! Just like they did the last ones. And I couldn’t be more proud.

Are you a single parent? Do you have a husband or wife that doesn’t help? I am very sorry that you have to go it alone but please, never ever doubt yourself. You’ve done it, you’re doing it and that’s proof enough for me that you can keep doing it if you have to. Help is out there, but even if it never comes, know that I am proud of you. I am amazed by you. I sit here knowing full well that I’d never have even made it as far as you have and no matter what you might think of all the things I do around the house to help… you are my inspiration.

It’s because of you that I help my wife as much as I can… not as much as I do, but as much as I can. You inspire me by showing me what true parenting really is… the determination, the self sacrifice, the iron willpower to always be there and to always do anything and everything that you have to do for your children no matter what.

I have faith that everything your child may lack from having that second parent is more than made up for with the amazing role model that you are before them… that they will grow up to know exactly what a true long term commitment can do and what devoting yourself completely can make you capable of.

Believe me when I say, with no offence intended, that I really hope that I never have to go through what you’re going through but that’s only because I know I’m not as strong as you are. Don’t ever give up and more importantly, please believe me when I say you don’t “need” help, but rather you “want” help. Because when you make it a need, you become desperate and start to see it when it’s not really there.. possibly putting yourself in a worse spot than you were before. But that’s a whole other topic.

I sincerely hope you do not have to go it alone for much longer but for however long you do continue to be a single parent, know that I am proud of you, your children are proud of you, all of us parents could learn from you, not the other way around, and that no matter how hard it may seem sometimes, you can do it. You’re all the proof you need.

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Resenting or even hating a family member with Autism

By on November 30, 2010 in Autism

My wife just started a new part time job selling children’s clothing at a local store, it’s a perfect job for her since she loves children and she loves dressing them up just as much. It’s been a couple of weeks and so her co-workers have adjusted to her being there and as such, found herself in quite the interesting conversation with one of them.

Cameron and Tyler

Brothers

The topic came up about our children, how Cameron has Autism and Tyler does not. At this point her co-worker shared that her brother has Autism and more so than that, she actually resents him… to the point of hating him.

Now, before I tell you what my wife’s response was to this, I’d first like to speculate just how much this might be the truth for other people out there… perhaps even more people than we might be aware of because it’s very likely that most would never confess such a thing, certainly not to anyone that would ever deliver that news back to the family.

It got me to thinking about it and even though I don’t understand, I sort of do understand too.

First of all, a sibling with Autism is likely to not play well with you, perhaps not even involve you at all and would have great difficulty sharing. Meanwhile your parents would likely ride you to no end to be extra nice to them because “it’s not their fault.”

You’d likely have to have them tag along with you or have them at your gatherings and so forth because it’s likely that your sibling wouldn’t have many friends if they have Autism. It’s possible, depending on severity, that they never really even had a normal birthday party and as such, your parents would impose all these extra demands and responsibilities on you, on your special day, to help your sibling feel involved.

I think you see where I’m going, the list can go on and on… even a high functioning sibling with Aspergers could become a burden on your life that you might grow to resent.

I would hope that most rational people would grow out of that resentment and finally understand what it was their parents were trying to do, but there’s no real guarantee of that happening, especially if the parents don’t recognize that and help it along some.

If the sibling is quite low functioning and needing a lot of help, to the point of (in your mind) stealing all of your parent’s time away from you… well, it’s easy to see where the resentment could grow from there.

Actually, the more I think about it, the more I can see how my wife’s co-worker could feel that way… how I kind of feel bad for her that she had to feel that for so long. Not because she is a bad person for feeling it, but because she never had the guidance she needed to help her understand how much good she was doing in all the things she was likely asked to do, or sacrifice. That she was a needed part of her sibling’s upbringing and life to this day.

I certainly can’t say that she’s justified in feeling that way, no one should resent or hate anyone for having Autism. They didn’t choose to have Autism. But when I put some thought into it, I can sort of understand how it may have come to be.

I think it’s just important that we remember that it’s a distinct possibility in our own children. To always remember that siblings can resent each other no matter the situation but it’s so very easy to happen when one child is “different.” My little one, Tyler, is a very very kind soul and something tells me I will have nothing to worry about, but I can’t ever let it slip though. If we are not careful, if we miss something, he could hold a resentment just as my wife’s co-worker does. And I would hate for that to happen.

So what did my wife say to her in response to that? I’m paraphrasing a bit here but basically she told her co-worker, and all her co-workers:

“Honestly, if any of you deliberately ignore someone who comes in and has a disability of any kind, not only will I call you out on it and set you straight, I will never, ever talk to you again. It’s just something I will not tolerate.”

Not only am I proud of her, but so were her managers. They agreed, everyone that walks in gets treated the same, disorder, disability or nothing.

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